Writing From the Vantage Point of Illness

“Considering how common illness is, how tremendous the spiritual change it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and deserts of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a little rise of temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness…it is strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature.”

–Virginia Woolf, from her essay, On Being Ill

Tell us a story from the vantage point of being sick or having a serious illness.

Comments

  1. Fran Stekoll says

    There are only three times in my 78 years of life that I can recall having a serious illness. The first was in 1953. After waiting all my High School Years to get a leading part in a school musical I collapsed onstage before opening night with pneumonia and spent 5 days in the Hospital.

    The second was in 1958. I was pregnant with our second child. I started bleeding and was confined to bed the entire 9 months. Our first daughter, then 2 1/2 became a Mother. Lee Ann brought in the mail, the milk, answered the phone, the door, folded clothes, and literally took care of me. To this day she’s the best Mother with her 5 children.

    The third was in 1999. I was in Kauai, Hawaii with my husband when I received a call from our Doctor. Apparently I’d been diagnosed with Hep C. I drove immediately to the local bookstore and bought every book I could to find out how to live with it. It turns out I got this from transfusions after giving birth to our second daughter so apparently I’d had it for 40 years. Sheri, and I both died during childbirth and both survived. We were written up in Medical History as there were three cases like ours and we were the only one where both Mother and Child lived. Turns out the reason I was bleeding was due to the afterbirth being connected to the uterus. At age 23 to save my life I had a sub-total hysterectomy saving only my ovaries. The Doctor told me he took away the buggy and left the playpen.

    We wanted a son so in 1961 adopted one. That’s a total story in itself.

    • Ilana says

      Fran- As always, I loved finding your response already posted when I came home to read the prompt. You have such amazing stories. I really liked how they were succinctly put. You didn’t say, “It’s really amazing that we survived.” So when I responded that way it was not because I was told to do so. Then you end with such a beautiful statement of empowerment. You had a hysterectomy but you wanted a son so you adopted one. Nice job! IM

    • Barbara Keller says

      Great story, love it. Isn’t that life? The stuff that happens when people say, “That never happens.”

    • Judy says

      Fran, Here’s to many more years, just not as eventful, right? Thanks for being here to share your wonderful story.

  2. rosemary says

    For me, a diagnosis of breast cancer brought with it a life changing decision. A loss of memories had finally become a major concern If I was going to die from this monster called cancer, I was determined to remember life’s events before my husband died in a fatal car crash. Our two children deserved to know their father since they were only toddlers when he died. What resulted was the beginning of a journey that not only led to recovery of bured memories of traumas but brought physical and emotional health. My journey continues from that moment twenty-five years ago.

  3. PJ says

    Writing from the Perspective of a Serious Illness

    Since my diagnosis of a usually deadly“GBM” brain tumor, every day I get out of bed, I am fully aware that I have a deadly disease that I am fully supported by, by my spouse, relatives, friends and associates of course, God Almighty and his son who guides me through the healing process and who is at my beck and call as I am for him. Before I was given my diagnosis, you never would have heard from me on this blog.

    This is an all encompassing change in me since it defines how I interact with the world and reminds me every day that my role is more passive than active as far as being able to shape my own destiny. I am much more introspective and dependent on others for help, prayers, etc than I once was, though in many ways, I am more aware that I have always been dependent on these people and God, but now this is just dawning on me. Growing up as an independent male has conditioned me to act like I am the master of my own fate but this has fostered a false sense that thinking and acting mostly alone has left me no refuge where I can collaborate with others when I feel lonely. I have never been much of a reader. Writing has enabled me to do that since writing, for me, is showing others what I see and feel thru my eyes and ears, I feel so much different during this past year since diagnosis and treatment, my writing has changed, step for step with every change in my thought process, plus I have emboldened to write about my own personal discoveries, which may plant the seeds of faith to others that may struggle in a similar situation.

    Initially, I intended to expose some of what made me who I am for my grandchildren to understand me at a greater depth than when Aaron was 11 and Annie 9. It has been good to add something to my repertoire of a Sunday afternoon e-mail exchange recapping the week with an old friend and mentor. Since my wife and I are working harder at sharing thoughts, feelings, etc., leaving her these writings provide her with what I currently struggle to tell her verbally (and she me).

    Laura’s blog has been helpful for those who see themselves as aspiring writers but also the blog is helpful to think about and formulate some sort of “get off the fence” stance to things about ourselves that help us to continue forming or reforming ourselves into more complex people we can be proud of.

    I should point out that my dealing with this cancer has been an easy thing to do from a pain standpoint. Except for a few days after surgery, my pain has been almost non-existent. I have more empathy for those with serious pain issues as I found out about ten years ago when I couldn’t find an unpainful position to take for the whole day. These folks, it seems to me are the uncrowned saints of today’s theme, grabbing a few lucid moments if possible, form the thought and “translate” it back to the part of the world that doesn’t live in constant pain.

    • Hazel says

      I really like that you and your wife write e-mails about the things you feel you cannot talk about together. It must open a starting point to sharing.

      Thank you for sharing.

      • PJ says

        No we (wife and I) don’t write each other e-mails (except for forwarding links and jokes but I do highlite the week’s events into 6 or 7 sentences in my life or our kid’s lives… Maybe the past 15 years and exchange them with Guy. He was the retired guy that took me in under his wing when I joined the church choir bass section.

      • PJ says

        Hazel,
        I thought I should include “warts and all” when describing my life, rather than the self serving things that might paint me in a better light!

      • PJ says

        My illness has shown me the value in sharing facts and feelings with others in similar experiences to gain more insight and feel less alone. In the beginning of the diagnosis, there were lots of scary stories. I am always open to hearing the good stories that give us some hope that things will get better. Trying new things like writing, etc are a result of searching for something that changes us for the better. This is a bit of a major leap for me, having had a 40 year career as a civil engineer. Just being an engineer puts you in a situation where everyone that you work with is a skeptic and the best engineers are the best skeptics. Putting yourself out there as being open to new ideas is a bit threatening to the culture you’ve bought into. Our marriage counselor told me that he could count on one hand the number of engineers in 30 years that initiated contact with the counselor… We all had a chuckle over that!

        • PJ says

          Thanks, Judy. If I had an idea how helpful they might be for those hooked on ephemera, I would have saved them! Seriously though, most were full of mundane ordinary stuff that life is full of. Probably way too much work to cull through looking for an occasional gem.

    • Judy says

      Recapping the week’s events is a wonderful and creative idea, PJ. And, your last paragraph has my head bobbing with ‘yes.’ Thank you.

    • Jennifer Ire says

      Thanks so much for sharing this journey. You have helped me come to a better understanding of how to transmit what is received through the consciousness of the eyes and the ears. Your description of writing as “showing others what I see and feel through my eyes and ears,” turned my consciousness inside out for a moment that is sublime. Many continued blessings on your journey.

  4. Barbara Keller says

    Oh, my goodness. I’ve been sick most of my life, and my daughter and her kids. It’s genetic problem that has been identified as mitochondrial disease. My daughter calls it the invisible disease. Her daughter, Sarah, is so tired all the time and when she gets a stomach flu she almost always has to go to the hospital for IV’s. But she looks normal and people think she’s just lazy. Everyone was always mad at me, my parents, my teachers, later my bosses because it looked like I was lazy, indifferent, casual about my responsibilities, when in fact just getting on with my life took heroic efforts.

    I think about this and wonder sometimes what the point of it was. First, I think, is compassion. I’m not quick to judge and I do understand when people are having physical and emotion troubles. I understand how hard life can be and how welcome kindness is. Second, maybe, is courage. I am brave and I endure because of what I learned. Patience and tenacity.

    When I realize how slow and confused I often am, I am amused that I do this little newspaper and it’s growing (this month it is in the black for the second time). I think I’m like a bulldog. I grab on and I don’t let go. I just plod along and try and try and try. Would I know how to do that if my whole life hadn’t forced me to learn? No, I’m pretty sure not.

    And I would say all that pain, exhaustion, trouble and woe did push me hard toward God. I was as proud as the next one, as determined to say “I did it myself.” But I couldn’t do it myself. Once I had my child, and saw what a poor job I was doing, I saw that I really and truly could not do it myself. So I looked around for help and found God waiting for me. For that, for the peace, hope and healing I found there, I would take any amount of the sickness it took to get me there. I’m still sickly, but I laugh a lot more and I’m not near as scared.

    • says

      Barbara, the invisible disabilities and illnesses have definitely challenges of their own and your piece clear elucidates some of them. I was struck in your piece by your desire to make meaning out of your illness–I remember doing the same while I had breast cancer. And I think we can choose to learn and grow in the midst of illness. But I also don’t believe there’s always a reason for the challenging and difficult things that happen in our lives–illness included–shit happens–and it happens to all of us. Sometimes its just bad luck.

    • Ilana says

      Barbara- What an important lesson you have to teach. We have no idea what others are going through or why people do what they do, how they do it. That’s one that bears repeating. I was also struck by your choice to do the best you can with what you have. Regardless of what it looks like on the outside, I will always do the best I can and “If other people have a problem with that, it’s their problem, not mine.” (That attitude has gotten me through a lot.) Nice job with the prompt and thanks for the important lessons. Be well, IM

    • Hazel says

      Thank you for sharing.

      I can relate as I had rheumatic fever when I was a teenager. No one could see there was anything wrong with me. Why I couldn’t participate in gym class, games, etc. But I became angry, vitriolic with my language, hurtful to others. Once I was out of school and on my own that subsided because I wasn’t expected to do all those physical things.

    • Judy says

      Barbara,Here’s to your continued bulldog and courage….gee guess that’s why the ‘little newdpaper’ you mention is in the black. Pretty impressive for a woman who says she plods along…way to go!

  5. Chris Reeves says

    How often have my ploys to avoid school failed due to a clean bill of health? How many attempts of my eight-year-old intellect have fallen short of convincing mom to let me stay home? I despise school. The roadmap to getting out is longer than I have been alive. I’m sick of the names, and the shoving. I loathe the way the others put on that evil smile when the teachers are around. Those nasty grins mask their cruel intentions from anyone in authority, while clearly signaling the beating I will take on the walk home. The other kids will catch me away from the eyes of parents or teachers in an alley, or the back stairs of our school. To fight back is to invite a lynching of sorts. With so many little voices crying wrongdoing to their parents if I hit back, I can’t possibly raise a convincing story of defending myself. I’m trapped. Why then, am I trying to go today?

    Mom is so irritated when I try to shirk my indentured servitude with the invisible upset stomach. At least I’ve honed my argument to things she can’t measure. The fever was a foolish sale. Today’s is nothing like last week. I’ve sweat through my clothes and the couch cushions. I try to force my way to walk to school. My legs buckle in utter weakness one pace from my damp divan. Blackness forms a haze at the edges of my vision as my floor-level vantage shows mom’s chipped burgundy toes come to a stop in front of my face. Why do I need to go? I can’t stand my crumpled state. I’d rather face the manifestation of poor parenting in the mob cruelty of those damn kids at school than submit my insides to the Tupperware that mom is placing next to my face. I can’t think straight. The tunnel before me narrows as I vacate Life cereal and an egg into the plastic salad bowl that occupies the world in front of me. It’s whisked away to reveal mom’s left foot. I remember that she can barely handle vomit as the blackness closes in.

    I pry my eyes open to find the sunlight in a different place. Mom is above me raking those blunt acrylic nails down my back with feather-light touch. If I hadn’t already been asleep for a long time, this would send me into torpor. Why is she being so kind? She hates it when I stay home. I try to force my way up and out of the house, but my muscles give out at turning on my side. I’ve steamed the cold washcloth that I’m just noticing on my forehead. I suppose I’m so used daily conflict that today’s struggle is with my own body. I can’t stand the helplessness, so I fight that. The blackness drags me back to incapacitation. It’s pathetic, but at least I’m unconscious again. Early Star Trek fades in for a minute. Out. Awake. Mom is talking with stress in her low voice behind the sound of the evening news. The tenor of her words mirrors what I think I’m feeling. She sounds afraid. It’s not like her. I don’t understand. Out. Conscious for a few minutes, and out again.

    I can feel my stiff limbs and bladder clearly now. Am I awake? It’s pitch black. I hear mom shuffle on the couch across from me. What is she doing in the living room? My body’s renewed capacity allows me to crawl a few paces to the downstairs bathroom to relieve myself. The couch creaks under my thin frame when I return. Mom’s light snore stops. She calls to me in the dark. “Honey?”

    “Yeah. I just went to the bathroom. Sorry.”

    “Oh good.” Relief floods her voice, as her breathing resumes a steady rhythm. When I close my eyes, I am choosing sleep for myself. We both rest easier.

    • Laura Davis says

      Dear Chris, Welcome to the Roadmap Blog. So nice to have your voice added to the chorus. I’m not sure if this piece was memoir or fiction, but I really enjoyed the way you captured the whole meme or using illness as a way to avoid school or facing other unpleasant realities. I hope this is your first post of many!

    • Karen G says

      Love the little details like the “chipped burgundy toes”, the feeling of those raking nails and the way you use snippets to capture the mind’s ramblings….
      Thank you :-)

  6. Judy says

    My vantage point of illness was watching an abusive alcoholic father hold his family in the grip of that illness. Here is part of that story:

    Midwest America, Summer 1956….We’d seen it in Good Housekeeping: the lime green, pink and white bedroom ideas—perfect for the room my eight-year-old sister, Kay and I shared. Our Mom was an expert at making something out of nothing. She found striped wallpaper in the remnant bin at Lehman’s Hardware Store. And, a small table and wardrobe at a yard sale. She painted the two in companion colors. The paint was half-price. The matching bed spreads for our twin beds came from J. C. Penney’s. We loved this warm cozy room.

    A gigantic walk-in-closet had sloping wall. Dad made a two-tired rack system which ran nearly three-quarters of the closet—ample room to handle the expertly crafted clothes our mother made. She was a master dressmaker and tailor—better than Chanel everyone said.

    An old painted trunk sat at the north wall of the closet, guarding our toys and other treasures. Above it, a diamond shaped window. Outside, under the window—a ledge—the perfect escape hatch.

    Standing on the toy trunk, I’d pull back the diamond shaped window, put one leg through it, twist my body and slide to the ledge; then reach back in to put stuffed animals and toys on the trunk and close the window. From the ledge, I’d reach to the left for the chimney and climb onto the sloped roof and sit.

    One spring night, the Midwest air was particularly clean and still. I could hear the crickets. That is, until my Dad roared into the driveway: a familiar occurrence; and, one in which I always tried to make myself invisible. He let out a sigh as he reached under the seat for his favorite beverage—Seagram’s 7—that tawny liquid that changed the way his brain worked.

    I watched him break the seal, twist the cap and take one long slow drink—and then another. I imagined the whiskey racing to his stomach—its effects cascading through his system. He pursed his lips and his entire body shook like our dog, Tippy, when caught in a rainstorm. My heart raced with fear that Dad would see me watching him.

    “Whoa, that’s good,” he said in a drawn-out slur.

    The car door slammed. He headed for the back steps. Tippy barked. I shivered. Doors slammed. Dishes crashed. His language was so ‘blue’ a longshoreman would blush. I held my breath, waiting it out on the roof. Once I heard the stairs creak, and my parents’ bedroom door slam, I waited another hour before I crawled back through the diamond window and slipped under the chenille bedspread. My sister was sound asleep.

    Tomorrow, in the light of day, the lime green and pink bedroom will feel warm and cozy once again. And, maybe…..just maybe……there will be no need for the roof refuge….but, I doubted it.

    • Chris Reeves says

      Thanks for sharing. It’s scary to have the limited understanding of a child for things that control the people that make up your world.

    • Laura Davis says

      Judy, thanks for this deeply evocative and visceral portrait of the child’s experience. I love the vivid way you evoked the place. I was in that window with you.

    • beverly Boyd says

      Judy, you make this come alive. The sweet story of your mother helping create the bedroom for you and your sister and your (sober) father building a tow-tiered rack in the closet. A scene of domestic bliss to rival any of the sitcoms of the day.
      Then the other side of that life sitting from your refuge on the ledge, watching your father drink the Seagram’s 7 that “changed the way his brain worked.”
      Well told with wonderful details. It made me feel like I was there on the ledge with you!

    • Ilana says

      Judy- Beautifully crafted. I liked the way you told us about all the beauty and the magician your mother seemed to be only to hit at the ugly parts of what you had to say. The subtlety made it that much more powerful. In addition, you did a great job of remaining true to the child viewpoint. We know things, experience things as an adult, in a way a child never could. I really felt a little girl was explaining this to me. Very well done. IM

    • Judy says

      Chris, Laura, Beverly, Illana, You have no idea how empowering your comments are for me. This piece was read at a writers workshop several years ago and I nearly fainted as I read it–the ink ran off the pages. I depart to visit son & family and am taking this copy. I may or may not share it: that scared kid is still lurking….catch up with you later. Blessed be.

      • Polly says

        Judy, this was beautifully done. I love the vivid detail and the courage that that little girl has in telling it to the rest of us. Thank you.

  7. Karen G says

    I was in bed when I found it. Lying in my high rise four poster bed that I built with 4 by 4’s painted glossy black, I goldleafed the upper sections to look like knobs – lying in the afterglow beside Skip. It was Thanksgiving Day or rather night in 1996. Of course I had heard about the regular breast checks and how its important to monitor the changes and pay attention to any irregularities. Feeling for lumps basically. I don’t even know how I thought to check (as normally I didn’t) except I had a tingling in the afterglow and was giving my girls some attention. I didn’t even think about cancer before that. My sister’s best friend had been diagnosed at the age of 12 with a lump in her knee. But this was really happening to me. Not someone else.

    It took until Christmas Eve before I was told that it was benign. Before the thought could sink in “I don’t have cancer”. Of course it was relief. But I was changed. What’s interesting is what followed. I went on a journey to learn the message behind the lump. What was my body trying to tell me? According to Carolyn Myss this is related to a signal from the body’s 4th chakra, the Heart chakra, the centre of Love, healing, compassion and relates to the act of nurturing, especially nurturing others. Of course there’s the physical idea of nurturing a baby on the breast but then there’s the metaphysical. I started to look at the ways I gave away my power or spent too much time taking care of other people’s needs before my own. My relationships with my lover, my family, my work… I went to acupuncture looking for a way to address the lump and what it was teaching me. I sought out teachers and healers. I went for hypnotherapy. I talked to my body and the lump and listened quietly for its message. I started to take better care of myself and paying attention to my body more. Did I really love myself then? Not nearly as much as I do now. I took herbs. Chinese herbs that I boiled up in a special pot that meant a distinctive aroma would fill my apartment offending me and my room mates’ noses with its foul odor. What was worse was drinking the stuff. But I was prepared to do anything. And I monitored my lump, my teacher, my new best friend, daily determining if it was bigger, smaller, or just the same. I went for a needle biopsy to test it, a long needle straight through my delicate soft tissue. If it was a cyst it could be aspirated – that’s doctor speak for drained. But it didn’t feel like fluid to me. It was lump of hard tissue. Fibroedenoma if I spelled it correctly. It’s just a fibrous lump. On the left side of my body. In Chinese medicine my male side. Did I need to get in touch with my inner man? What was his message? Be stronger going out in the world. Or defending the softer, feminine, nurturing side of me? That made sense. The warrior protecting the maiden. Finally the lump spoke loudly and angrily to me. It wanted to leave. And so I had no choice. Surgery. I emerged with a tight bandage wrapped like a cumberband hugging my chest. A flat chest! But no my girls were still here with me and I with a whole lot more appreciation for them. I was lucky.

    I quit smoking, cut out drinking alcohol and coffee, no more drugs, and went to massage school to learn how to heal myself – healer heal thyself – and others. I started diving more, writing in my journal more, Skip told me he wasn’t in love with me… Now I’m left with a small scar you can barely see. But the changes and transformations I went through are not so easily seen. The body is full of wisdom. If we don’t listen, well the body’s voice grows louder until we do. Or die.

    • Laura Davis says

      Karen, I love everything you have to say about illness–and in this case a scare–can change everything about the way we hold, honor, cherish and live our lives. Thanks for sharing!

    • Judy says

      The wisdom of our body….powerful line Karen, you prompted me to sit still, listen to my body AND do a body scan. Thank you for sharing that reminder.

  8. Sandra Phillips says

    I wrote on this prompt pretending to be in my sisters shoes.She is in her third year of dealing with a cancer that was supposed to be quite easy to cure.However, she is looking to God more now.we continuously pray for her.

    • Laura Davis says

      Sandra, welcome to the Roadmap blog. I’d love to read some of what you wrote from your sister’s viewpoint, or at least, what you imagine it to be. I love the freedom with which you interpreted your first prompt with us. Keep coming back!

  9. Donna Aceves says

    Where the light enters-

    “Don’t turn your head.
    Keep looking at the bandaged place.
    That’s where the light enters you.”

    –Rumi

    I’ve always been one to turn my head. It goes against my grain to look at the bandaged place. I used to faint at the thought of an injection, a broken bone, any kind of spilled blood made me light headed. But now I find I must look.

    I look at the huge scar that traverses my belly. I look at the needle I inject into my skin daily to prevent blood clots. I look at my balding head. I look at my misshapen torso. I look at my devastated and traumatized family and feel their broken hearts. And I look at the pieces of my own shattered life. The light of love floods through it all, teaching me more about healing, wholeness, and holiness.

    Here’s a poem by Mary Oliver…

    Who made the world?
    Who made the swan, and the black bear?
    Who made the grasshopper?
    This grasshopper, I mean-
    the one who has flung herself out of the grass,
    the one who is eating sugar out of my hand,
    who is moving her jaws back and forth instead of up and down-
    who is gazing around with her enormous and complicated eyes.
    Now she lifts her pale forearms and throughly washes her ace.
    Now she snaps her wings open, and floats away.
    I don’t know exactly what a prayer is.
    I do know how to pay attention, how to fall down
    into the grass, how to kneel down in the grass,
    how to be idle and blessed, how to stroll through the fields,
    which is what I have been doing all day.
    Doesn’t everything die at last, and too soon?
    Tell me, what is it you plan to do
    with your one wild and precious life?

    I do know how to pay attention, but I don’t know how to be idle and stroll through the fields all day. Maybe I’ll get better at this. This weekend, I was able to be idle, to watch the delight on my grandsons, Jack and Wyatt’s faces, as they played on the beach, swam in the pool, walked to ‘Noni’s Hotel’. The grey overcast weather, dramatic waves, and February chill did not stop my delight at taking photos of the boys, the ocean, the cement boat. Pure pleasure.

    Jim and I went to see the movie ‘Lincoln’, intense and inspiring. Afterwards, we strolled downtown looking for a place to eat and found a restaurant called The Gratitude Cafe. I told Jim, “we have to eat here.” The food was vegan (didn’t know this until we sat down). The food was delicious. The walls were covered with large tile mosaic hearts made by a local artist. Beautiful. The dishes had a script written on them, hidden until the food was eaten, that said “what are you grateful for?” We shared our gratitudes. I think I’m going to be eating there more often.

    There is a whole lot of light entering in the bandaged places, mostly from all the love and support of friends, family, and even folks I don’t know. Thank you, thank you.

    I plan to look, and pay attention to this one wild and precious life, and be grateful.

    • says

      Donna, welcome to the Roadmap Blog and thanks for sharing just a piece of your journey with us here. You are a beautiful writer and a beautiful soul and I can remember so much of what you describe here from my time in the cancer underworld.

      • says

        Kristine, thanks for your thoughtful and generous responses to what you’ve read here–and welcome to the Roadmap Blog. You shouldn’t have to wait for your comments to be posted anymore–I just have to approve the first one. Welcome!

  10. Lee Senior says

    Although I have had many illnesses, from the chickenpox that hit me
    a day before I was to be able to go onstage at school and show off my
    girl scout uniform, to an ongoing asthma that hits me frequently, particularly
    since I have lived in the woods. For a while I thought I was over it, but
    this year, the minute the weather changed, it came back. I do have medicines and a nebulizer to fight it with, and, after a while, you get used to it. It’s usually an “Oh, my God, not again.”

    However, this prompt has hit me at a time when I am on another track.
    I will write about my frustration with the medical profession.

    About a week and a half ago, I was bitten by something (I imagined an
    insect) while pulling up weeds in my garden. Learned a valuable lesson.
    Always wear gloves.

    The bite was on my right wrist. It turned red and blew up, itching and causing acute pain. Since my regular doctor and hospital is a long drive, I went to the nearest emergency hospital and saw a doctor who looked at the bite, gave me some pills to take, and sent me off with a letter to my regular doctor.

    I waited, expecting the pain to go away (the swelling and redness did)
    although the pain had moved up my arm. I was (and am) sure it was
    connected to the bite. Following the doctor’s orders I went, with his letter, to my regular doctor, one who has always done the very best for me, whenever I have gone to her.

    This time, however, without even looking at my arm she told me I had pulled a muscle. I don’t think so. I would have known. I also showed her the other doctor’s letter. She told me to use my other arm. (It is my right arm and I am right handed.)

    It has been a couple of weeks and my arm still hurts (not where the bite was, but I do think it is connected somehow). I take the pills. I rest my arm as much as possible and it continues to hurt. I suppose I will have to go to emergency at my regular hospital, but it it is a long drive, and I do not
    relish the trip. I drive a shift car.

    Right now I am putting it off and hoping it will get better. However, I have a sneaking feeling that I will have to go to my hospital emergency. I’m not a happy camper, although emergency doctors seem very good.

    I find myself looking back to a time beginning when I was twelve years old and had strep throat. My doctor was a former medic in the service with my uncle who connected him with my family. At twelve years old I found the best doctor I have ever had. He remained my doctor during the years I lived at home (until age 19) through the years I lived away from home. And whenever I felt sick, my mother contacted him, told him my symptoms and he sent me medicine that cured me. Later, after having been married for several years, I returned to my parents home while I waited for my husband, who took a job on the other side of the country, to send me. I again had cause to see my former and very wonderful doctor.

    Over the years since, I have lived in many states and have had many doctors some good, some bad like the one who said, “You only think you have asthma.” What I have noticed most, is how much the medical profession has changed.

    Yes, there are some good doctors and good hospitals, but it is not the same.

  11. Jennifer Ire says

    Laura, I so appreciate this prompt today.

    I had just had my 20th birthday. It was supposed to be an exciting year heading to 21. But within the first 3 months or so, I found that I was visiting my doctor almost every week for some reason or the other. I could make no sense of it and the ailments at first did not seem related to each other. Within that period my doc discovered sugar in my urine, ouch. We did the tests, blood was clean, we talked and I adjusted my diet which was not bad to begin with and I did not like sweets in the first place. That year my doctor saw me almost weekly until about six months in she stopped charging me for the visits.

    Those adjustments did it and I kept up with it. But in the back of my mind I was puzzled about the presence of possible diabetes in my line. So I started to think, read and do some detective work. Over time I verified that no one in my maternal line had that thread, hypertension was the pattern with that side of my family. I had no connection with the paternal and did not know anyone I could ask so that was a closed door. The strategy paid off and the trace of sugar did not reappear that year. On one level I was happy, and on another my curiosity was piqued.

    One day years later, with some wisdom and knowledge, I found the question to ask. The knowledge was derived after meeting my father and learning from him that his mother and sister both died from the effects of diabetes. With that knowledge I decided to study diabetes more deeply. The question that came to mind was “What is the mind of Diabetes?” or what is the spiritual and emotional essence of this disease?

    This produced a lot of work and then one day I heard inside myself, “Life has not been sweet, life will never be sweet!” and “I cannot accept sweetness.” It blew my mind and took me deeper into meditation, thought and listening within for some insights or revelation from these words.

    I came to understand that the parents of my parents and their parents came into a life under slavery. For the generations of folks who had been enslaved for the many, many years, life certainly had not been sweet = Life has not been sweet! They could not envision a sweet life, and after emancipation life did not change much. Under the European design, the enslaved were “freed”, slave holders were compensated for the loss of the slaves. The newly freed slaves received nothing, no land, money, recognition as humans with even basic needs. They were let go to figure life out as best they could without housing, work, land, noting that would allow them a start that could have sweetened their lives. Then the British brought in the East Indians and Chinese to supplant them, gave these newcomers the status that land provides. Life will never be sweet! It made sense to me.

    I looked at the epidemic of diabetes in the descendants of the enslaved and saw it with new eyes. I looked around at the epidemic of diabetes among the Native folks who lost their way of life and the poor of every group and said Hmmm! I looked at my life and said, Oh, Boy! The next thought was how do I change this for me? Idea, find sweetness in life so my body can know how to accept sweet. That became my journey to date. I have worked to find sweetness of every and any kind for my body, mind and soul to receive, not matter how tiny. This was to teach my pancreas how to gather resources to enable me to digest sweetness in food and on every level.

    I have been doing this for more than 30 years now and have never had my family trait balloon into the disease of sweetness. I have not had the urine sugar since my twenties and even with aging, this has not changed. I am grateful for this reminder because aging is not sweet in itself and with the current country and world condition, there seems to be a push to make life not sweet for too many people. This is the time to keep finding sweet and digest it well. I find this in the posts on Facebook of the animals, the fashions, the beauty of nature, the pictures of food, the delightful and funny words, the writings of people like you that come my way. I occasionally treat myself with sweet tastes in amounts that will not overwhelm my system, which is easier now that I can find sugarless desserts. I must focus on the sweet for my life’s sake. What a wonderful job, I must get back to that with serious intent.

    • says

      Jenny, thank you for sharing your powerful, profound journey with us. I’m always so happy to have your thoughtful presence in our community. Welcome back!

    • beverly Boyd says

      Jennifer,
      I’ve missed you on this blog and I’m glad to see you back. You’re responses are always so thought provoking.

    • Judy says

      Jennifer, a powerful piece of both family and sad cultural history. I loved your telling and encourged us, too, to find the sweetness of health and life through serious intent. Thank you.

  12. Claire Stanard says

    I had dared to take a breather from the demands of single parenthood after nineteen years. My twenty-one year old son had just completed his junior year in college and was spending the summer working for his father in another city. Experiencing a forgotten luxury, I began focusing attention on my own life by re-marrying and relaxing into fanciful freedom. Then, the telephone rang and my life was forever changed.

    “Your son has been blown up by two car bombs and is not expected to live….you need to get up here immediately,” the doctor recited officiously. He then rushed back to the operating room to continue removing shrapnel and debriding the extensive burns which had ravaged my son’s body down to the bone. Having no further information, I immediately rushed into flight and fight mode, removing any shrapnel of fear from my mind and debriding all doubts of my son’s possible demise. The ‘obdurate oak’ emerged, shadowing any weeping willow. Since there was no file in my head capable of assimilating this inconceivable disaster, I armed my heart and soul for war.

    Upon first seeing my son in the ICU, swollen into one giant, gauze-wrapped blister with over twenty-eight tubes jutting out of every mummy fold and orifice, I wilted with a faint. When I ‘came to’ (though I never truly ‘came to’) the battle began, and I became invincible. Thus, began five years of dragging my son through one battlefield to another, all filled with the land mines of certain death. The battle was for survival against bacteria, pain, infections, pneumonia, seventy- eight skin graft operations, medication overdose, medical negligence, and hopelessness. I pushed my son to keep moving, though his doctors insisted he would never walk again.

    Eighteen hours a day of tending to my son’s every need, witnessing his unbearable pain and screams for relief, bolstering his mustard seed of faith, and advocating for his medical care: the demands of intensive caretaking of a loved one was relentless. Unbeknownst to me at the time, my soul was slowly being chipped away by the impactful stresses of the fight for survival. My soul was permanently scarred.

    The world shrinks in the face of illness. One room becomes a metroplex of procedures, a temple of prayer, and a chamber of horrors. One hallway becomes a mountain to conquer, a road to success, and a bridge of support. The hospital was the entire world, and the nurses were your best friends. The doctors were saviors, as well as enemies to distrust. Moments of quiet and painlessness became God’s greatest gifts. One’s heart was like a frozen tundra – a desert devoid of feelings. Adrenaline poured into one’s brain like a constant drip of energy. Each day was the same day, a new day, a day of setbacks and a day of possibilities.

    And, finally, one day there was recovery. And the next day there was collapse. The tundra had been flooded with a tsunami. There was no file in my head to assimilate so many feelings. I was drowning and another fight for survival had just begun.

    • says

      Claire, thanks for sharing this powerful chronicle with us. The strength of the narrator as a fierce mama who wouldn’t give up was particularly profound–and the way she collapsed at the end felt so incredibly realistic. This was my favorite paragraph, each sentence powerful and hitting home:

      “The world shrinks in the face of illness. One room becomes a metroplex of procedures, a temple of prayer, and a chamber of horrors. One hallway becomes a mountain to conquer, a road to success, and a bridge of support. The hospital was the entire world, and the nurses were your best friends. The doctors were saviors, as well as enemies to distrust. Moments of quiet and painlessness became God’s greatest gifts. One’s heart was like a frozen tundra – a desert devoid of feelings. Adrenaline poured into one’s brain like a constant drip of energy. Each day was the same day, a new day, a day of setbacks and a day of possibilities.”

      • Kristine says

        so powerful. amazing the strength a mother can manifest when her child is in danger. I agree with Laura, this paragraph is so profound. I would like you to consider reading it thru using all first person. I want to know it is YOU, not “one’s heart”. I am in your shoes as you are speaking. You have touched my heart as another mother whose child suffers with no end in sight.

    • beverly Boyd says

      Claire,
      Although this story was not an easy read, the powerful images you have chosen really brought it alive.
      “there was no file in my head capable of assimilating this inconceivable disaster, I armed my heart and soul for war.”
      first seeing your son “…One giant gauze wrapped blister with… tubes jutting out of every mummy fold and orifice.”
      Thank you for sharing this difficult journey with us.

    • Ilana says

      Claire- What an amazing story. You captivated me right from the start. You are a true hero and like all heroes your strength came at a cost. Thank you for this honest and beautiful narration. Good luck to you! IM

    • PJ says

      Good story that keeps your interest to see if the heroine gets thru the rough breaks given to her and her son. Your kind comment to the hospital staff rings a bell with me. I too count these folks in the “good guys” column, helping us novices navigate the system w/ all its flaws.

  13. Sangeeta S. says

    My depression has been the greatest gift I could have. It stopped me in my tracks and told me to look within. It stopped me from going down a path of continued denial and a completely surface-driven life. It stopped me from continuing the decades of violence and dysfunction that I come from. In a phrase, it stopped me. And then it started something. It led me down a path of pain if I continued to deny myself; and a path of hurt if I failed to address what was going on. It forced me to look within–and without, with no regard for anything but the basic necessities of life; survival was the game! But this time, survival literally meant keeping myself alive. Take a shower, eat if you can and continue curled up in a ball because that is what was needed. One person witnessed everything I went through, and he, in fact, is who helped me save myself.

    No one else knew–and I thought no one else wanted to know. I was screaming out in pain, but without a peep coming out of me and without anyone in sight. On those times when I ventured into the world, I was showered, dressed and smiling. No one knew. Ahhh well, I still don’t have the courage to speak up as many others I’ve met on this journey, but I’ve gotten way better at it than I used to. I am no longer the smiling robot, but a real person with ups and downs, still many struggles to put my life together, and a new optimism and a little positive fear for what may lay ahead. It’s a scary thing to be living this way, but I wouldn’t have it any other way.

    • says

      Sangeeta, thanks for sharing your journey and the perspective it’s giving you. I love that you can now look back and see the gift inside the depression, despite the despair and pain. We’re all rooting for you–and you’re rooting for yourself!

  14. Hazel says

    An excerpt from my book “The Accident and The Artist” pgs. 34-45

    Ah, yes, the world of morphine. No pain. I floated off on a pillow of beautiful colors. They swirled about me, reds, oranges, greens, blues, yellows, every hue with a speed and rhythm of their own, carrying me out to the limits of the universe, past stars, planets and galaxies; “over a sea of candle light and into the sea of dew,” to– nowhere. Sometimes people that I knew and loved swam with me; sometimes strangers intruded. Sometimes my ex-husband chased me through old houses and caves dark and foreboding, sinister and evil. Other times I created clothing of exquisite design: suits, dresses, and gowns – elegant, casual, comfortable. I made jewelry of the finest quality using hammered gold, with rare stones; design. I created a standing sculpture of a peacock using stained glass, reinforced with construction re-bar and when it was finished it stood six feet tall and the tail spread was fifteen feet. This was probably my most daring fete as I had no prior knowledge of stained glass in any application, but I had it all figured out. I worked on it for what seemed weeks in my mind. I have no conception of the mental time I really spent on it. Whatever it took. Time was of no consequence. Time was for the living and I was not quite alive.

    Nurses, aides, janitors, doctors, interns, and Peter (my husband) came and went in my room. Shifts changed, holidays were taken, days off came and went for the staff; they were of hardly any notice to me. I ate very little and had even less need for drink. The IV continued to drip into one vein or another, carrying what was need to where it was needed. They moved the needle from site to site when it would plug up or the vein collapsed. I dreamed strange dreams, various things and then they came–

    The Plastic People
    Run through my head
    Dance around and sit on my bed.
    Plastic people with plastic faces
    Moving, shuffling, taking their places,
    Plastic people telling their jokes.
    Plastic cigarettes with plastic smoke.
    Plastic smokers don t inhale.
    Plastic people looking pale.
    Plastic sweaters with plastic shirts,
    Plastic women in plastic skirts.

    Plastic people, they come – this rabble –
    With plastic talk and plastic babble,
    Plastic laughs and plastic sneers,
    Plastic knowledge and plastic fears,
    Some of them sipping plastic beers.

    Plastic people on plastic toes,
    Plastic people sighed and rose,
    Plastic people shrank down far,
    Plastic people in the IV jar.
    Plastic people becoming liquid,
    Plastic people down the tube slid,
    Squirmed and slithered, like a plastic weasel
    Plastic people through the plastic needle.
    Plastic people who had done no harm
    Were now returning into my arm.

    Plastic eyelids, and plastic hair,
    Plastic people, were they ever there?

    Peter was there. He spent the best part of every day there with me. Sometimes I knew it and sometimes I didn’t. He gave me strength and hope, but I knew he had other things to do too.

    A close friend of ours came to see me. “Boy, are you a powerful lady!” he said.

    ” What are you talking about, Byron?” I asked.

    ” Don t you remember when we were having lunch the day of the accident when you said to me:’ I’m gonna get it on that bike and it s going to be my knees ?’” he asked.

    ” No, I don t,” I said.

    ” Well, you did. I guess you got what you wanted,” he said.

    “What are you talking about?” I asked.

    “Well, you wanted Peter to be more responsible. I guess he ll have to be now. You said you didn t want to work any more. You won t have to do that either, at least not for a while. You are very powerful. You didn t even have to perform the accident yourself. You scare me, Lady!” he laughed.

    I did not remember saying any of those things to him but after he said it I knew I had. I remembered sitting in McDonald s sipping my Coke. It was 12:30 p.m., only three hours before the fateful corner. But, now what? Long after he left I was still thinking about it. I thought also of the time my employer and I had gone to the local pub for lunch and a tarot card reader was there. She was going from table to table doing readings for free. Pat said to me, You go first.

    The reader spread the cards, asked me to hold my hand over them and pick out the ones that felt warm. I laughed nervously as I followed her instructions. She turned them over one by one as she explained what they meant. I felt my body tense and wondered about her being right on about everything she was saying. I had never even seen her around town so how did she know so much about me? Then she looked at the card that stood for health and she paused. Slowly she said, “You are going to be in the hospital and it will seem to be terrible at the time but you will get over it and everything will be okay.” I remembered thinking; I know that I have gallstones so if this is really true I ll probably have to have them out. It was exactly one month to the day before the accident. I wondered if she had known it was to be an accident. She had said before she started the reading that she often saw tragic things but she did not reveal them in detail because she didn t want people to focus on them and in that way bring them to pass. I wondered now if she had seen me lying in the middle of the road all broken.

    What if Peter gets tired of taking care of me, after all I am eleven years older than he is. I had never been very physically active and I have had a hard time keeping up when I had two good legs and took lots of vitamins. Will he go find someone young and energetic? Here I am, a legal alien in a country not my own, with a people that really don t like American Yanks, not
    underneath the pleasantries they show to tourists to get their dollars anyway. Somewhere deep down in the Canadian psyche there is a fear that every American wants to take over Canada and make it another state in The Union. Whatever for, I can t imagine. Who needs another icebox? I want to go home but where is home and who is there?

    I felt like a small child listening to noises in the dark unable to figure out if they were made by the dog or cat, or by the boogie man. When I was about three years old, one of my dad s friends, Russell, would laugh, thought it was great fun to turn off the lights, get down on the floor and crawl toward me. The glow of his cigarette came closer and closer. I knew who it was but he had changed into a monster with one glowing red eye headed straight for me in the dark. I hid my eyes in my dad s lap peeking once in a while. He was still there getting closer and closer. I squealed and tried to climb up onto my dad’s lap. Russell remained a monster until the lights came back on. Who will the monster turn out to be when the lights come on this time; when I finally get out of this nightmare and am able to open my eyes?

    I had no idea how long it was going to take for me to walk again. There had been no discussion of that subject on anyone’s part, especially not the doctor. Peter insisted, emphatically, every day when he came to see me, that I would walk. He just wouldn’t accept anything else.

    There were so many concerns and there was no one to whom I could voice them. Just a few days ago I had been an active professional, working in the provincial mental hospital, making notes in patient’s charts, making treatment plans, helping them cope with their infirmities, concerns, and limitations. I was good at taking care of others. My world was in complete reversal. I cried a lot.

    In my mind I went over and over scenes of my husband leaving me, sometimes for other women, sometimes just to get away from me, sometimes to have a manic episode and be hospitalized himself. In the end I was always left alone. What would I do? What could I do? Why wouldn t anyone tell me if I was going to walk again or not? How long was I going to be here in this awful hospital? In less than one minute I had become old and crippled and now was in this warehouse of the in-firmed and dying. I can t express these feelings to Peter. Is there no one to listen to me? Doesn t anybody care at all? On the other hand, why should they, what am I to them?

    One night I said to the nurse who was giving out the hour of sleep medication, “I know you are very busy right now but, when you get through and get your charting done, could you come back and talk to me for a while? ” She said she would and about ten o clock she tiptoed in, probably hoping I was asleep. I started to express some of my concerns to her. I don t think she had been trained for that and quickly made an excuse to leave. I asked if there was someone who could come and talk to me. She said there was a Chaplain and also a Social Worker, but no one came and I cried some more.

    Between morphine outages I cried. When aroused for meals, I cried. My whole life had ended and no one even noticed. I cried until there were no more tears and still I cried.

    • says

      Hazel, I love your description of being on the morphine drip. I was on one after surgery and wish I could have stayed on forever. I loved the dreamy oblivion, and you captured that, and so much more, so well in this piece.

    • Ilana says

      Hazel- So beautiful and sad. So honest that it gently forces me to see realities I wish I could ignore. I hope that you did come out of that sadness. IM

      • Hazel says

        Ilana,
        The world as I have known it has ended for me several times during this lifetime. Each time I have found my way out of the maze of depression and loss of self to be resurrected in a whole new form. I am waiting now to see what is next after 3+ years of shingles pain and the end of my world as an active senior. Perhaps I was meant to stay home and write.

        • says

          Hazel, I’m inspired by your resilience and willingness to keep opening the next door. It reminds me of one of my all time favorite quotes, one I used in I Thought We’d Never Speak Again, when writing about reconciliation: “When one door closes, another opens, but we often look so long and regretfully at the closed door that we fail to see the one that has opened for us.” –Alexander Graham Bell

          • Hazel says

            In almost every instance of a closed door I have found that I must mourn my loss for some time before I actually can turn around and touch the next doorknob, opening the door just a crack. I have spent a great deal of time in the “state” of depression but then again when I was in the deepest of those depressions is when I wrote my best poetry, and the most of it (205 poems in my poetry book, “Windfalls”). And, amazingly, it is not all dark.

    • Judy says

      Hazel, you take my breath away with you strength and courage. Write, Lady, write….your words have power and offer healings. Thank you,

  15. Suzanne says

    I sat in the doctor’s office listless and vacant. She had performed all the customary tests for a wellness exam and was making notes in a file. In a quiet, toneless voice I said, “I think it’s possible I’m feeling symptoms of depression.”

    She looked at me expectantly, “What kinds of symptoms?”

    “I don’t know exactly.” I replied with uncertainty.

    “I have three sisters and all three of them have been on medication for depression. I think it runs in my family…” I continued. “Is that it?” She waited. “I don’t feel right.” She waited some more. “I don’t know, for sure. Do you think I could be depressed?” I say with anticipation.

    “It’s possible.” She states simply, and without conviction.

    I sat in a parking lot screaming expletives, uncontrollably and despite the storm raging through me my entire being engaged itself in a long, deep sigh. Finally, because a physician told me I could be depressed, I gave myself permission to fall apart. The fragmented pieces of me spilled all over the car in a mess of wayward senses, betrayed emotions, and displaced grief. There was no going back. My carefully constructed way of life had deteriorated beyond repair.

    It would take years for me to sort out the causes behind my condition and more years after that to develop a healthy and happy way to navigate life. But the day that I gave myself permission to be sick was the biggest turning point in my life.

    • says

      Suzanne, thanks for posting this story that marks the beginning of what was probably a very significant, much longer chapter of your life. Thanks for putting the spotlight on one of those moments when life changes–they’re always a significant place for writing–a place where many great stories are born. Welcome to the Roadmap blog. I hope you come back and visit often.

    • Debbie says

      Suzanne – I was deeply moved by your post. It takes such courage to admit the cracks in our facade. I have engaged in secret car shrieking on more than one occasion. It was at once both safe and contained. Thank you so much for sharing this pivotal moment in your life with us.

    • Judy says

      A vivid picture–the fragmented pieces–I was with you in that car. A beautiful telling Suzanne. Thank you for sharing.

  16. Ilana says

    Emergency Brain Surgery, From the Point of View of a Survivor Who Had Not Yet Begun to Heal

    A few weeks ago a woman in my incest survivors’ support group was very angry with me. I had asked them to celebrate with me, the 12th anniversary of my successful brain surgery. Now, it happened that my aneurysm burst at 11:45pm on Tuesday, February 13th and the surgery was on Valentine’s day but that’s not what I was celebrating. I knew that chocolate hearts were a trigger for her so ahead of time I was very careful to ask her, “Are chocolates in general okay? I am in this new thing of molding chocolate so it would be fun to make something for the group. I could make shells, circles… anything, really. I’ve got a hundred different molds. But I don’t have to bring chocolate at all if it bothers you.” She had thanked me for being concerned but said she’d be fine. Thinking I had done the right thing, I brought in circles of milk chocolate lightly flavored with cinnamon and stars with peppermint. Ima did not come to group that week but left a message for us that she “Didn’t feel like celebrating anything that day.” (Just to clarify, it was our usual meeting, just with food.)

    When she came back the following week she was livid. “Ilana. You know that Valentine’s day is a big trigger for me. It was the first time my father abused me. We come here to get support regarding incest. Does your brain surgery have anything to do with incest?!”

    I was floored, no devastated. Wasn’t my battle for my life worth remembering in the one place where people understood what I’m going through? I gathered myself and answered, simply. “Yes, in a million different ways the incest affected my ability to survive the aneurysm. I lied about my pain levels, didn’t ask for enough morphine. I had to. My family raised me to know that I was not worthy of effective pain relief.” That was as far as I got. It turned into a discussion of how we should handle this in the future. Ima was angry with me because she was triggered by the celebration being on Valentine’s day. She said that if we could celebrate the 14th as the day my life was saved, without connecting to Valentine’s day that was all she asked. (Isn’t that exactly what I had done? Hadn’t I gone out of my way to ask what she was comfortable with? No matter. I had been given permission to celebrate and I would be even more careful next year to make sure I didn’t offend her.)

    So the problem was solved. There was no point in discussing the issue further. That’s not how it felt to me though. I had been attacked. My right to celebrate with my safe people had been called into question and I desperately needed that celebration. Zander and I both have a hard time on that anniversary. We both find ourselves faced with the terrifying memories of the pain, the loss and the strong possibility that I could have died or turned into a vegetable. I had to celebrate in order not to be pulled under in the tide of painful and frightening memories. As far as Ima was concerned, though, I had no right to bring my celebration into our group because she couldn’t see how it was connected to the incest.

    BUT IT WAS!

    It was and I had no space to say what I truly felt. There never was, neither will there ever be, a chance to address her attack on me in our group. With your permission I will find my solace here. I will tell the story of my terrifying ordeal from a point of view that no one could possibly have understood at the time.

    From the very first my pain was questioned. I don’t blame him but Zander could not believe what was happening to me. At first he thought I was joking and then he could not endure the possibility that his new bride was in true danger. He refused to call 911 as I had instinctively pleaded with him to do. Instead he did a neurological examination, which I failed. Then he called ‘ask a nurse.’ Only when she told him to did he call an ambulance. When they got there the two men treated me like a faker. The pain was so intense I was dizzy and weak with it and I needed their help. I knew I was going to die if they did not take me to the hospital. I did what they said and let them make fun of me. “Ma’am you’re just having an anxiety attack. You’re going to have to calm down.” Grudgingly they agreed to take me to the hospital. I didn’t however, deserve any help getting down the stairs or into the gurney. The already blinding pain intensified exponentially when I hoisted myself up and my head snapped back. They continued to laugh and tell me there was nothing wrong with me.

    Thankfully, the emergency room doctors recognized my symptoms for what they were; most of them anyway. One continued to belittle me. At one point a young, angry looking doctor came into the room. “I think we should do a spinal tap.” He informed me. His sadistic expression made it clear he was going to enjoy putting me through the excruciating procedure. I was already in so much pain and didn’t think I could take anymore. “I don’t want a spinal tap. Do they have to?” His harsh expression intensified. “Look lady, if you need a spinal tap you’re going to get one. It’s not up to me, though. Dr. Rabb is going to make that decision but I really think we should do one.” Having been properly put in my place I closed my mouth and waited. I didn’t end up with a spinal tap. Instead they did a CAT scan and found ten ccs, two tablespoons, of blood in my brain. The next test was an angiogram and that is how they found that a blood vessel in my brain had indeed burst. It was, as Dr. Rabb suspected, an aneurysm.

    The timing of the next several events is hazy. Most people do not remember any of it at all. The surgeon explained to me exactly what he was going to do. I’ll never forget how his hands looked as he used them to illustrate. They were going to medically induce a coma and cut through the skull to open up my brain. Then put an alligator clip over the broken blood vessel. The other option was less invasive. They could shoot a coil up through my femoral artery that would wrap around the broken vein. My vote was for the second option. It sounded far less painful. Immediately, I was informed that the open brain surgery was the best option for me given my situation. There really was no choice.

    I had no power.

    This was my theme song for the next two weeks. When I came out of the coma my wrists were shackled to the bed. There was a tube down my throat making it impossible for me to talk. I was completely powerless and in intense pain. They took the ventilator out and I could talk but it didn’t relieve my feelings of helplessness. I remained shackled to the bed for the next seven days. Every four hours a smiling nurse would come in and feed me pills that I didn’t even have the power to take from her with my own hands. The side effect of this medication was intense anxiety. At night I dreamed the nurses were trying to kill me.

    There really was no way to relieve the pain. They tried to keep it under control with morphine but as I said, having been trained not to make demands I lied about my pain levels. Strapped to the bed with seven different tubes coming out of me, taking medication that made me sick with anxiety nightmares that the nurses were trying to kill me and intense unrelenting pain; any of this sound like it might trigger memories of being abused?

    If not then I can go on. Enter my two brothers, the older one, my abuser, was on the phone ready to book a flight to come see me. My parents knew this was a bad idea because he always made everything about him. They solved the problem by explaining to him that he could be a big help to my dad by staying put and managing their law firm. Andrew gets to be the hero in his own mind. There was no other way my parents could keep him away from the hospital. My younger brother was the one I was still deluding myself into believing was my best friend. He was out of state when all this happened, visiting our cousins on my father’s side of the family. Reluctantly, he came back at my parents’ request. Matt walked in with an angry look on his face and tossed a trinket on the table in front of me. I could not pick it up because I was still restrained but I could see it, a small toy from the gift shop. “Thank you! It’s my favorite color.” I tried to make his gift into something more than it was. “It’s not actually from me. Mom bought it in the hospital gift shop so I’d have something to give you.” He grumbled. “Why are you angry at me?” My joy at seeing him was somewhat dampened. “Because I not only had to cut my trip short but mom and dad don’t want anyone in the family to know this happened to you so I had to lie about why I was coming back too.” “I’m sorry.” I said, not knowing where else to go with that one.

    The story goes on and on. A rabbi who felt he had to visit me, whether I wanted to see him or not, a father-in-law who needed to be holding my hand and leaning so close I could smell his breath because he felt his healing touch was essential regardless of how the patient felt about it and of course my mother who needed to complain to me about how she felt she was being mistreated through this hole horrible event. All the while I was restrained, powerless and incapable of even expressing my pain. Yes, my experience of the brain surgery was very effected by my abusive background.

    I sometimes fantasize about how I would have handled things differently if I had more of a sense of self, if the aneurysm happened now. ILANA HAVE YOU GONE NUCKING FUTS?! You want to go through that hell again because you’d handle it differently now? yes i’m sorry but yes I do. If it happened now I would stand up for myself. I would call my husband in the middle of the night rather than counting the hours I had left to be alone and terrified. I would be honest about my pain levels and tell everyone who was invading my space to leave me the hell alone. It would be such a different story if it happened to me now. I would be my own advocate and I would ask for what I need. I would call my brother and my parents on their shit.

    And it wouldn’t be this story; the story of emergency brain surgery from the point of view of a survivor who had not yet begun to heal.

    • Laura Davis says

      Ilana, wow! I’m so sorry your safe place was not safe for you to share this story. Of course the two things are completely interrelated. And I’m glad you got to spill the story out here. I will happily witness it for you.

      What an amazing ordeal. I’m sure it would have been an ordeal anyway, but I think you’re right, the lessons from your childhood increased the trauma.

      Mostly, though, I just want to say I’m so glad you’re still here. And such a vital part of this online community.

      • Ilana says

        Thank you, Laura. I really needed that validation and being valued like that, tonight. Believe me. I will hold onto this. IM

    • Polly says

      Ilana that must have been such a terrifying experience. I’m so sorry that at almost every turn (including even a month ago) you didn’t get the validation that you fully deserve. You are strong and brave. I will echo Laura’s sentiment: I’m so glad that you surived and are able to share all the experiences you want to with us. Thanks for being you!

      P.

      • Ilana says

        Thank you Polly. It is amazing to show how I’m really feeling here and not be judged, but rather lauded. I really appreciated your saying “Thank you for being you.” A higher compliment I have never been paid. (My husband and I say it to each other a lot and have shortened it to “TYFBY!” If my book ever gets published that story is in there, attributed to my wonderful John and Lily.)

    • beverly Boyd says

      Ilana,
      I really like the last two paragraphs where you realize that if this happened now the story would be much different…from the point of view of Ilana, who has begun to heal and would stand up for yourself.

    • Terry Gibson says

      Ilana, such a devastating story. As best I can, I understand what you’ve shown here. I can feel moments in my own life when I was powerless to–make myself known (on pain levels, thoughts and feelings in all relationships), get anyone to take me seriously, and fend off anything that came at me. Being restrained in any way, gives me intense anxiety; just last month, I had several panic attacks while in the dentist’s chair. Your strength, spirit, and tenacity always shine brightly for me. Tonight even more so. So glad you shared this story with us.

    • Judy says

      Ilana, Once again your amazing spirit shines through as you describe a truly horrigic set of experiences. As others have said, so glad you are here in this space and on line community.

      Thank you for you pig latin, Lady, nucking futz had my 14 year old grandson on the floor with this comment, “good one, Nana, where’d ya get that

      one?”

      “Oh, my on line bud.”

      • Ilana says

        Thank you, Judy- I am honored by everything you said. I love that I had a 14 year old on the floor laughing! IM

    • Jennifer Ire says

      Ilana,
      What a journey into terror and yielding you made and returned from. You are a powerful being and I am honored that you have shared so deeply. Thanks for surviving and sharing.

  17. beverly Boyd says

    About a decade ago, when I needed a letter from a doctor for something, he described me as an obese otherwise healthy woman of 65. Obese? That took me back a little, but I had to admit I was technically enough overweight to fit the mildly obese category.

    The “otherwise healthy” part of his comment is really the point here. I have always considered myself a healthy person.
    My medical record when I have to fill it out is rather boring.
    I’ve been hospitalized seven times: six for childbirth and one for knee replacement due to an accident.
    I had one kidney infection so long ago that it no longer belongs in those medical histories.
    I check off Migraines but no one but me seems very interested.
    There is some Arthritis, almost a given at my age and where do I put seriously fallen arches
    No Diabetes, Cancer, Heart problems, and except for a fair number of strokes in family members who have made it to eighty there isn’t much in the family history either.

    So what do I write about?
    Was it the winter when I was eight and I had too many sore throats followed by a tonsillectomy that summer that may have contributed to the migraine headaches which started about that time:
    a penicillin allergy that might have killed me when I was thirty and it was used to treat a one time kidney infection;
    or severe Candida yeast overgrowth I was treated for in my fifties.

    Was it the staph infection Brian and I came home with when he was born? The outbreak was so bad that, a month later the hospital was sending all healthy mothers and babies after just twelve hours. That saga (you don’t want to know the gory details) lasted for more than a decade as our family was dogged by a “persistent bacteria’ that seemed to infect almost any break in the skin anyone had. Even after the physical challenge was at bay, the emotional impact on Brian and our seriously codependent relationship a friend called a “compassion trap” took a while longer to let go of.

    Was it years of depression? I’ve had an underlying depression all my life, but in the early seventies it was severe for five years.

    Should I tell about the debilitating migraines (three day’s of upchucking twice a month) that followed my cycle so exactly that I thought they were brought on by periodic hormone shifts? (Candida turned out to be a factor). The suggestion caused my doctor to laugh heartily and tell me derisively the only thing wrong with me was “housewife’s syndrome”, a pre-”Feminine Mystique” term doctors liked to use. I should stop complaining.

    I learned that some doctors are insensitive and clueless, especially those who believe they know everything.

    My children learned to make their own peanut butter sandwiches and take care of each other while, with my arms clamped around my head, I monitored the activity from the middle level of our split-level house. As a result I have seven capable and independent grown children raised by benign neglect.

    A genetic predisposition to ovulating twice a month so the “rhythm method” allowed by the Catholic Church didn’t work for us. Not exactly an illness, you say. It wasn’t easy having seven children in less than nine years while you are having migraines. I wanted a big family, but not so fast please.
    When I adopted a more surefire method of birth control and continued to take communion, I learned the finger of God would not strike me dead at the altar.

    “Change of life” took care of much of the migraine problem and I have since identified that chocolate, soy protein, and MSG, found under many names other than MSG, are among my triggers.
    I learned I have to read labels and be sure to provide food I need, just in case.

    Was it the seven eye surgeries that were needed when I developed Macular holes in each eye? That was pretty scary…the thought of a doctor, no matter how skilled going inside of my eye with a knife or probe to repair the tear. Equally frightening…the fear I would not be able to maintain the face down recovery 24/7 for two to four weeks. The good news/ it wasn’t macular degeneration for which there was no real cure.
    I learned to TRUST: being completely present in the moment at the level of my breath where fear cannot reside.

    Was it being evaluated for ADD and learning that that was probably one reason my mother had such a hard time with me. I often said that if I had been born in the sixties I probably would have been put on Ritilin. That diagnosis, rather than feeling like a sentence, was a relief. There was reason I had such a hard time staying focused. In fact some of the behaviors that got me in trouble were actually coping strategies I had developed.

    I’ve learned a lot about showing up…one day at a time for what ever lies in front of me and often that was so much that, even I, wonder how I did it.

    One time when my youngest were babies I was really feeling like I couldn’t manage any more. I found myself saying out loud to God, “You promised you wouldn’t give me any more than I could handle! I heard a voice say, I never asked you to be Supermother!” Yes I did hear a voice. That happens sometimes. I listened and dropped out of the competition for who had the cleanest house and children. I learned about setting my priorities and being okay with what I was not able get done.

    In later years I have learned I am not the “energizer Bunny” any more. I know my physical limits and need to honor them. But, I am a healthy woman, no longer obese!

    I always Trust. I trust that God Is my anchor chain and will not let me wash out to sea. I take the steps in anything that I need to do I can Trust that god will take care of the results.

    • says

      Beverly, I always enjoy seeing your name appear in this blog. Thanks for the long, wonderful account of your health history. It’s quite a mystery having a human body, isn’t it?

      • beverly Boyd says

        Thank you, Laura. I hope it wasn’t ..too.. long. I tried cutting it down and it only got confusing.
        I think the little nine-year-old girl in “Someone believed in me” who was allowed to drive a team of horses may have been in training for my role: Mother of large family whose Navy husband was gone most of the time. Sometimes it seemed like one siege after another!

    • Hazel says

      I am with on the next to last paragraph, “I am not the ‘energizer bunny’”. What a blessing it is when we finally learn we don’t have to be the damn Wabbit!

      Don’t know how you managed with seven children, I barely managed two and that not very well. You are amazing!

      Thank you for sharing.

    • Ilana says

      Nice job, Beverly- I especially loved the conversation you had with God when He said, “I never asked you to be supermother.” I think we all need to be reminded sometimes that perfect is impossible. IM

    • Terry Gibson says

      Beverly, I ran through so many thoughts while reading this. Putting it all down, knocks me over by your strength. I got so angry about doctors who never believed or listened to me either–wondered how man women experienced the same throughout their lives. Seven children in ten years. Wow! I don’t envy you. Having children, yes, but not that many so quickly. There were families at my Catholic school where there were fifteen kids! Contraception was a sin. Finally, slowing down and how much we relieve ourselves by not trying to be Superwoman or whatever. I admire your faith and contributions here. Thanks for this post.

  18. Bobbie Anne says

    I’m a cancer survivor. Yay! My mother doesn’t care. Ironically, her new boyfriend’s wife died of cancer and she acts very sympathetic. The rest of my family members don’t seem to care. I’ll share this below:

    FOOD FOR THOUGHT

    She called her mom
    and mentioned she
    had cancer and was
    frightened and needed
    some caring concern
    her mom said her sister
    was taking her out to
    dinner so she didn’t
    have time to talk

    Her mom didn’t offer well
    wishes or any tea
    and sympathy for it
    was time to eat
    and she couldn’t wait
    for it was past her
    usual dinner time and
    she was so hungry

    Why didn’t her mother
    ask her how she was
    feeling about the cancer
    like most moms would

    Just because she
    hopes her mother
    would care doesn’t
    mean she does
    ******************
    I pray for those with cancer and those who have passed on from it.

  19. says

    I wrote this in response to a prompt following a familiar smell–in this case the smell of marijuana smoke:

    During my cancer year, when I laid bald and skinny and wasting away in bed, I couldn’t believe the number of people who came over and brought me marijuana. People I didn’t expect. People who shocked me even. There were some who’d always been open about their usage, but some of the most strait-laced people ever brought me some of their stash. The smell of marijuana hung around my room for that whole year. It was the only thing that brought me any relief from the unrelenting nausea. I tried all the pills my oncologist prescribed, but they made me feel weird, had all kind of side effects and none of them worked. Sometimes a puff or two on a joint would enable me to hobble over to the table, where I’d hang my head, repulsed at the smell of everything and take a bite or two of food. There was a banana smoothie from a cancer cookbook, One Bite at a Time, that was a staple. That or the health food version of ensure. I can’t remember what it was called or how it smelled, but with a straw, I could usually get a can of it down. We bought four cases and stacked them up outside the kitchen door.

    Lizzy was 10 and Eli was 14 that year. They’d been steeped in virulent anti drug indoctrination at school and I had to sit them down and tell them that I was going to smoke pot whenever and however often I needed to, that it was my medicine and that it was different than smoking it for fun (as if there was something wrong with that—but you can’t reason with adolescents and pre-teens with their black and white thinking). I think they accepted it, but they never brought friends over that year.

    Mostly other people came and picked them up and drove them places—to school, from school, to swim team—I think they were both still swimming then. I suppose it wasn’t just my room or my breath or my clothes that smelled like pot. I’m sure it permeated the whole house, like tobacco does.

    I remember blogging about my medical marijuana use and Karyn getting all uptight, certain that someone was going to read my blog and come break into our house looking for my stash. It never happened. Several years ago, my card for the medical marijuana store expired. I had a three year window where I could go in to that little shop, just a block from my kids school and buy any kind of tincture, brownie, loaded butter, peanut butter or bud I wanted.

    I found the place completely overwhelming, especially when I was sick. I remember walking in there, the smell of cannibis overwhelming. Hunched over, bald, having to lean on the counter for support and the person who waited on me knew absolutely nothing about the medical uses of different strains of pot. “I’m nauseous all the time and I can’t eat and I have pain around my incision.”

    He looked at me blankly, as if to say, “So what am I supposed to do about it?” What do you want.? He asked me impatiently. The dozens of varieties of cannabis overwhelmed me and I left empty-handed. I hope the staff has improved since then. There should be standards. After all. If you’re going to call yourself a medical marijuana dispensary, your counter workers should have some training. Just being a stoner isn’t enough.

    • beverly Boyd says

      Thank you for sharing this experience with us. It hits home especially since yesterday marked one year since my sister’s death from Lung cancer. I doubt if she could have obtained and used pot in the hospital in KY. I know nausea and wasting was a big issue. I’m so glad you are here to tell it.

    • Polly says

      I’m glad you were able to find some relief that way. I can’t imagine how painful and frightening the experience of cancer would have been. This piece was well thought out and so well told. You are an inspiration in so many ways.

      As an aside, you would have been in heaven at the compassion club in Vancouver. They have entire menus listing all different types of weed and the benefits of each. I used to go there with an old friend who’s positive. That’s who I’ve been planning to write about this week.

      Thanks for sharing this piece of your life, Laura.

      • says

        Polly, I’m glad the Vancouver place is more evolved than the shop I went to here in Santa Cruz. I’d love to read more of that story here if you have the time to write it!

    • Terry Gibson says

      Laura, yesterday when I read your piece, I was horribly nauseated with the flu. So, I really hooked on the physical aspects of your frightening journey through breast cancer. Pain too, although entirely different from yours. Hanging over a table or countertop because standing up straight is impossible. I laughed a couple times and felt scared as well. It reminded me of my intense need to deny the Stage 4 reality of a friend I love. I am so happy you didn’t go through that alone but can imagine the emotions I’d feel as a mother, partner, daughter, and driven person tackling such a devastating illness.

      • says

        Thanks Terry. It’s amazing to be five+years from my diagnosis, five years (almost) from the end of my treatment. That doesn’t make me immune from cancer or another illness swiping my life aside at any time, but it does make me further away from the amazing point of view illness gave me. Now, I’m much more caught up with my old habitual ways of living, forgetting more often what matters, really matters.

  20. Debbie says

    I have never had to deal with a life threatening illness myself. In my career, I have cared for many whose healing did not include a return to physical health. In their presence I learned many lessons about grace, letting go and keeping priorities straight. So when I read the blog posts on this topic – I realize that what has been lacking in my education about life are strong role models for those who fought hard and long to live, on whatever terms were required of them. Thanks to you, and all of the writers this week, for opening my eyes to power belonging to those who hold tight to life.

    • says

      Debbie, If I were ever to get sick again, or being human, I guess I should say when I get sick again, I can’t imagine anyone more wonderful than you taking care of me!

      • Ilana says

        Ditto, ditto, ditto, ditto! You are such a caring soul and I am grateful to have your online voice in my life. Im

    • Terry Gibson says

      Debbie, I can’t help but echo Laura’s words. You must be the most gentle, kind, and sensitive caregiver! I don’t know you really well but I believe I know your heart. What an amazing person you are. You are also an example of a woman who fought hard to survive and thrive, and I am so respectful of that. In palliative care with my brother, I know the difference it made for all of us (while Steve slept) to visit people on the floor and do whatever I could for them–especially when the nurses were swamped. Get an extra blanket. Speak gently and sit down to listen to a story about a man’s grandchild. Or just show them a smiling face, even when the signs of wear and grief had overkissed me. Fortunately, many had bad enough eyesight that they couldn’t see it anyway. I love that we can all learn from each other; I take away a new insight, idea, or question every week. As I do with everyone here, I celebrate your resilience and fight and how you give to us with the power of your words, Debbie.

  21. Polly says

    The morning sun beat down on me as I walked along Davie St. dropping off resumés. I was brand new to this amazing city, and just days before my 20th birthday, was filled with vivacious anticipation. I was free from the grips of my childhood and ready to take on the world. Having been raised in a fairly conservative midsized city in the prairies, the north shore mountains and the pacific ocean called to me. There were Starbucks coffee shops and rainbow flags everywhere. I had just landed in the centre of a beautiful, bustling queer community. This young prairie girl was finally home.

    “Chad” gave me my first job in Vancouver, flipping pizza dough at a shop in the vibrant gay village. He was by far one of the most flamboyant gay men I had had the pleasure of meeting in my young life. He took me to drag shows that were eons ahead of the ones I had seen back home. He was crazy and hilarious. He loved Abba and would sing along at work as we prepped veggies together in the back. The world and every cute guy in it were his oyster. “Get me him,” he’d quip under his breath when attractive customers walked in. His laugh was a gift and it was always music to my ears.

    Things continued this way for the first year. One day though, just over a year after we met, seemingly out of the blue he lost control. He yelled at me and belittled me in front of customers. I realized that it was time for a change, and gave my two weeks notice the following day. Besides, I was 21 and it was time to get serious and do something real with my life.

    It was difficult but we were able to sustain our friendship not long after his first tantrum. I would learn soon after, that he had just tested positive for HIV. Chad told me the news, and then essentially became a recluse in the months that followed. At the suggestion of my girlfriend at the time, I decided not to just let him go away. (It was the one gift she gave me.) I started calling him and leaving messages to let him know I cared, that he didn’t have to call back, but that I was thinking of him and would continue calling. He would later tell me that those gestures meant everything to him.

    We stayed close for several years. Chad saw me through breakups, jobs that hadn’t gone well, and numerous failures and triumphs. When I lost my way continuously, he would sit me down and say “We have to get the umph back in Polly!” I loved him for that and so many other things.

    Chad got sick countless times after his diagnosis. His viral load was off the charts and his t-cells were practically nonexistent at various times. I did my best to see him through it all, sitting by his side at the hospital, helping him walk home.

    As is all too common with terminally ill patients, he spent much of his time fighting depression. AIDS is nowhere near the death sentence that it used to be but it still does a number on your psyche.

    I think based on that, Chad let go of everyone close to him, one friend at a time. He frequently tried to push me out of his life, but I wouldn’t let him. In certain ways I was like a loyal puppy. He would pick something to be angry about, yell at me, and demand that I leave his place. I’d listen, but then show up a week later with a bag of groceries and some coffee. He would thank me, give me a big hug, and tell me that he knew I was the one friend who would remain there for him no matter how hard he tried to push, and that he was deeply grateful for that. He said I was his best friend. I know he meant it.

    Eventually I moved away. Time passed. I met someone and got engaged to her very quickly. We went to Vancouver for a visit and I asked Chad if we could stay at his place. He agreed. He and my fiancée clashed after only a few hours of visiting. I was caught between two strong personalities. He asked us to leave, so we did. The next day I went back for some things, and he said we would no longer be friends. This time I accepted it. I said goodbye, and I meant it, albeit begrudgingly.

    In the years since, I have regretted my decision to walk away. This one piece of my heart will always be broken. None of my other friends seems to know where he is, his phone number is different, and I’m assuming he no longer wants to be reached; maybe he never did. I will always care and I might never fully forgive myself. It’s weird though – I’ve ended several friendships over the years and not felt this same pain. I hope against hope that his HIV has not taken a turn for the worse, that he’s still okay. And it occurs to me now, if I write something about my old friend, and it’s at least decent, he can live on regardless of his viral load and t-cell levels.

    So my friend, this one’s for you. You’re not perfect but I didn’t ask you to be. The times you were there for me counted. Big hugs to you.

    • says

      Polly, thanks for your tribute to your friend. We all have lost friends because of our immaturity–or theirs–or because we didn’t have the skills to resolve conflicts. I know I have and I have some regrets about those friendships. It’s made me work harder with others. I’m sorry you lost him, but am glad you’re still putting your love for him out in the world.

      • Polly says

        Thanks, Laura. I’m not usually so maudlin about it but it hit me hard as I was writing. It also helped me to clarify some patterns that continue and extend to relationships I have now, and that part is definitely all mine. Who knew writing could do that?

    • Terry Gibson says

      Polly, this is such a touching story. Imagining it is not hard, given we’re talking Vancouver and the memories of HIV and its effect on every man I met through my brother and those at the Ottawa’s AIDS Center, The Living Room. Bravo to you for sticking with your friend as long as he let you. I dealt with Steve’s want to isolate too and it was not easy to overcome as he was a stubborn man. I also believe that even though they are now free of the t-cell vs. viral load noose, they do carry on through our continued love and written or spoken tributes to them.

      • Polly says

        Thanks Terry. Wow. I’m so sorry to hear about your brother and the other men that you knew. Thank you for sharing that with me. Just to clarify, I think my friend is still alive – I have every reason to believe that. I wholeheartedly agree with your sentiment though that they carry on through us this way regardless. I appreciate the ways in which you can relate to this piece, and in general, the thoughtful things you say every time you comment.

    • beverly Boyd says

      Polly,
      I know how hard these kind of things can be. It seems that Chad was also a great support for you so it must have been hard to have your friendship end.

      I’ve had a couple of friends with more than the usual need for support. One was a friend who was also a mother of a large family. I was with her the day she voluntarily committed herself and went the extra mile for months to continue to support her as all of her other friends gave up…”It was too depressing to see her that way,” they said. I was chagrined at how relieved I felt when her husband was transfered.

      The other was a schizophrenic artist who went through friends and living places at a fast clip. I realized that he needed at least one person he could count on when things got especially difficult or he needed an advocate. After about ten years we both had a series of moves and “lost touch”. Sometimes I wonder how he is and am tempted to call his brother who I have only talked to once. Then I remember how crazy my life could be when he was part of it. I don’t want to be on that roller-coaster again.

      We had some good times together and I sometimes feel sad that I don’t have a connection. but I had come to the place that for my own peace of mind I had to let him go.

      • Polly says

        Beverly, it’s great to hear your perspective on this. I did feel a sense of relief (in the mix of emotions) when I let go, but I guess I’ve gone back and forth in the years since. Anyway, thank you so much for relating to this piece.

    • Ilana says

      How beautiful Polly- Thank you for sharing your friend with us. Laura had us read “The Things They Carried” by Tim O’Brian for the memory to memoir retreat last November. He talked about a friend of his who died when he was a child and how we can keep people alive by writing about them. That thought meant a great deal to me because I generalized it to people who were not dead but for whatever reason had exited my world. They were still a part of my life if I wrote about them. Wherever he is, you have kept your friend present by writing about him and sharing him with us. Well done! IM

  22. Terry Gibson says

    As a kid, I was never sick. That made me happy because being ill meant I had to stay home with Mom. I lost out only once by coming down with strep throat; strangely enough, when I burst out crying from the pain, she was tender with me after phoning the town doctor. This was rare as they never let a doctor near us, especially when my friend told me I could not move my right arm because HE broke it; luckily, I am left-handed.

    However, this set up a bad pattern for me. I didn’t even THINK of seeing a doctor. In my head, a chorus of voices laughed at me for even considering such a thing. This held true after two gang rapes, as well as when I slashed myself with razor blades. Eventually, I sought help and some people diagnosed me as having clinical depression and others, reactive depression.

    Depression feels like waking up n the morning and just staring off into space. Crying until I fall asleep. Sleeping until my eyes open. Getting up only to use the bathroom.

    It feels like psychic pain. There are no words for it but every moment of consciousness hurts. Searing like the agony of my fair skin after falling asleep on Bondi beach. My spirit sizzles and shrivels under its control.
    Depression feels like hearing a doctor tell me that the muscles of my young body had atrophied—something they have done several times in my life thus far.

    It feels like knowing that long periods of confinement caused this problem and I’m still prone to acting as if it is the same today.

    Depression feels like swallowing a frustration and rage so vast, I stop breathing. I gain consciousness to sputtering, choking, and an eerie cold feeling
    It feels like becoming self-aware–knowing intellectually and intuitively how to fight post-traumatic stress, yet admitting that I repeat an entire cycle of harming when in its vice-like grip.

    Depression feels like finally conquering bulimia seventeen years ago, yet still being sick because I am overweight.

    It feels like seeing all the precious time lost to THEM and their hatred of me.

    Depression feels like despising and berating myself, no matter who loves or cares for me.

    It feels like a smouldering self-hate, a lack of forgiveness, something from which I never detour.

    Depression feels like trying again, trying again, trying again, while being bone tired.

    **********

    Depression does not feel like when I am enthralled by the bounce of a raindrop off our windowsill on a sunny day.

    • says

      Terry, I’m sorry you were able to write so vividly because it means you’ve been there and know what depression is all about. I was right there with you. thanks for sharing this very painful part of life that so many of us can relate to.

      • Terry Gibson says

        Thanks so much, Laura. Even in its painful midst, I’ve learned to see the beauty in it too. Being rendered immobile in the face of something I need to accept or acknowledge, and giving it its due, is a necessary thing; it’s what I’ve needed to appreciate where I come from and what I’ve survived.

    • Debbie says

      Terry – I read your post last night and found myself awake in the middle of the night reflecting on your words – from two levels. One was the very evocative combination of adjectives in your descriptions. For example – “There are no words for it but every moment of consciousness hurts. Searing like the agony of my fair skin after falling asleep on Bondi beach.” And secondly, from the knowledge that the experience was/is so exquisitely painful for you. That comes across so clearly in your amazing descriptions of a sometimes hard to define, still misunderstood illness.

      • Terry Gibson says

        Thanks so much, Debbie. I always appreciate your insight and comments. Yes. Depression is extremely painful for me but I think my comment to Laura above captures the value I see in it–now that I am self-aware and can ‘catch’ myself before it gets too bad. This is vital because at its worst, I have been in extreme danger. On a lighter note, so glad you are back!

    • Hazel says

      I can relate to not being able to tell anyone as they will not believe you and just swallowing everything that you really want to scream from the rooftops. But I have trained myself from an early age to just keep going even working, hardly able to see what I’m doing through the tears that run down my cheeks while no sound escapes my lips. I must keep my hands moving making things. . . on. . . on . . . to no end.

      The well is just as deep.

      Thank goodness we don’t have to stay in it, at least not all the time, and we can celebrate our survival. It is allowed!

      I CELEBRATE YOU!

      • Terry Gibson says

        Thanks so much, Hazel. Yes. It is allowed. Even though depression is a recurring theme for me and in everyone else’s lives (to varying degrees), we know enough about it to conquer it. Not let it consume us. And, you bet. We can celebrate; I make sure I do so a little bit each day. Each week, I enjoy reading your pieces and always find them thought-provoking and and a learning experience. In case you don’t know it, I absolutely love that.

    • Ilana says

      Terry- I echo everyone in their appreciation of your descriptions and the beautiful way you put the words together. There is something else that struck me, too. Your last line is extraordinary. “Depression does not feel like when I am enthralled by the bounce of a raindrop off our windowsill on a sunny day.” The joy and innocent beauty in that description do not speak to the subject of your piece. That is why it is so extremely powerful the way you use it. With that one sweet, beautiful, description your indomitable spirit storms all that pain and screams, “I am here. You can’t stop me!” So amazing! Thank you for honoring that as well as the pain. It is so precious! IM

      • Terry Gibson says

        You’re the first person to mention that! Yes. It was put there purposely and specifically. Just like when men add a tie to an unsaveable shirt, I thought the beginnings were too much. But they weren’t. They felt just right and was real … as did adding that glimmer, a true eclipse of time one sunny day in the rain. I needed the bit that says, “Wait. I’m not always there. I feel Much joy even with that.” I hug you, Ilana. :)

  23. Dolores Hagen says

    The doctor stares at me intently, his blue eyes the only color that stands out in his light complexion, neatly trimmed white hair and pristine white coat.
    “How are your feeling?” he asks.

    I can’t say because I have tube in my mouth and down my throat, but surely he can tell that I feel like hell. My jaw hurts, my throat hurts, the IV needles hurt and my stomach feels like somone kicked it with heavy boots.

    He gently holds the hand with no needles in it and says, “The surgery was a success and you should be out of here in a few days.” Looking at his immaculate dress, you would never guess that he had been performing a messy surgery on me the night before, cutting away the cyst that had burst in my abdomen and threatened my life.

    I fade in and out of sleep noticing the quiet footsteps of various people at different times…nurses, interns, my husband and an angel. Is it really an angel? She looks like my friend. What’s she doing here? Her curly golden curls and her beautiful green eyes stand out against her white summer dress. Why is everyone so white and clean today? She looks like an angel. My son? What’s he doing here? Am I dreaming? Did the angel bring him?
    A nurse gives me three tiny ice chips. I’m so thirsty. She says I can’t have anything, not even a drink of water until the tubes are removed. They’ve been inserted into my stomach to keep me from throwing up. I’m gagging and can’t do anything about it.

    Time is confusing. It’s hard to remember who I saw and what they said. My doctor comes in before I fall asleep again. I write a note: “What happened?”
    He tells me that I had a large ovarian cyst that burst. They removed the cyst, cleaned out the spill and I should be fine in a few days. It doesn’t feel like I will ever be fine.

    The surgery was a success? How could that have happened to me? Yesterday I had an appointment with my regular doctor to tell him my concerns about the funny pressure I felt in my abdomen. It felt like I had a hollow balloon in my stomach. I was also worried that I was beginning to look pregnant although I knew that wasn’t possible.

    Was it just yesterday I woke up ready to take on the day? I had made a breakfast date with a friend before my doctor’s appointment. That was not to be. I had walked into the bathroom, felt dizzy, then nauseated, then faint, then disoriented enough to have my husband take me to the emergency room.

    After a sonogram I found myself in an ambulance on the way to a bigger hospital where I was scheduled for surgery that night. The operating room, a white, brightly lit room where several people in green masks and smocks were playing loud music. I had no control over what happened to me now. No choice but to entrust my life to a bunch of interns? They look so young! The beat of the music somehow reassures me that I will be okay. People can’t possibly die while a rock band is playing, can they? The next thing I know, I’m in the recovery room.

    Surprising what can take place in just 24 hours.

    “It’s ovarian cancer,” says my doctor. “It’s a very rare type and we’re sending cell samples to Sloan-Kettering Cancer Center for confirmation.”

    I can’t talk but my mind says, “Don’t bother. I don’t do cancer.”

    He leaves and I’m left to think about what he said. Is my sarcastic reaction denial that covers fear and disbelief? Cancer? It’s simply not me. It’s impossible.

    Slowly, I let his words sink in.

    Then I cry.

    • says

      Dolores, you captured so powerfully the experience of losing control of your life in a moment and being catapulted into the world of illness: the fear, the shock, the denial, the disorientation. Thank you for posting this vivid piece–and welcome to the Roadmap Blog. I hope you keep coming back.

    • Debbie says

      Delores, thank you for sharing this moment in your life with us. I still remember the panic I felt when they started the general anesthesia with the intention of making me unconscious. Your writing captured that total sense of disempowerment very well.

      • Dolores Hagen says

        Thank you Debbie and Laura for your comments. Just wanted to say that I decided to forego the chemotherapy and radiation treatments they recommended. It took a lot of soul-searching and research as to what the chances of survival with treatment would be. The women in the study (5) had all died within five years with treatment. I decided that those statistics didn’t make sense. My thought was that I’d rather have five drug-free years than put my body though that agony. Maybe I was simply too chicken to submit to that.

        It was the right decision and I’ve had no recurring symptoms for over 15 years. Was the diagnosis correct? I don’t know. I have my own theory about how the body can protect itself but it’s not medically based.

        Stay well, happy, and grateful.

    • Terry Gibson says

      Dolores, this is an amazing story and even more so after reading your response below. For me, your description of waking with a tube in your mouth and down your throat, thirsty, and being asked questions, took me back. Powerless, except for a pen and paper–if your thoughts are sufficiently unjumbled to make your needs translate to page. I like your descriptions throughout and how you told your story. I can’t tell you how happy I am that your choice worked for you. Welcome Dolores.

  24. Janet Ring says

    I am still afraid to say that illness is simply a part of my life’s journey. Yet, indeed, I have Lyme disease, for which there is no “known” cure. That doesn’t mean there IS no cure. It just means we don’t know what it is yet. Many of us “lymies” have long periods of wellness and even tests that eventually come back negative. We turn to antibiotics, herbs, acupuncture, energy medicine, Rife machines, and other electronic devices that supposedly kill the spirochetes. Spirochetes. Sneaky bacteria that form biofilm and go into cyst form to avoid being killed off. Bacteria that can “hide” in your heart, brain, joints, and other organs.

    I’ve been dealing with this for six years and yet, during the good times, the up times, the energetic times, I walk into my doctor’s office and claim I’m not sick. Sometimes I love my denial. But inevitably, the signs of the disease come back: fuzzy thinking, extreme exhaustion, imbalance, an inability to grasp highly technical subjects I used to write about as a technical writer.

    But what I get to do every day is focus on my blessings and what I do accomplish. Grocery shopping and cooking dinner becomes a victory. Getting to an evening event or going to a singing rehearsal becomes a “win.” I get to focus on the beautify around me and learn to appreciate everything I have. The time I spend with family and my grandson is precious. The love I share with my husband is heightened.

    I have to ride out the cranky days, the days when I slip into “hopeless” thinking. But if I hang on long enough, it turns around. Perhaps this is just a way of learning to ride life’s roller coaster. Preparing for death while leading an enhanced life. Things are definitely more magnified. And I continually grow.

    • Laura Davis says

      Dear Janet, thanks for sharing this wonderful, vivid, articulate and very accurate description of illness with us. I was very moved. The only thing I want to tell you is that since this topic is not “this week’s topic,” you will get very few readers. People tend to focus exclusively on this week’s topic…but a few stragglers may stop by and read it.

  25. Debbie says

    Janet – Since I sometimes also post to prompts that have since moved into “history” – I am also a straggler that wanders by to check out late additions. Your post highlights the challenges of living with a chronic, as yet, incurable disease. Through your eyes we get a glimpse of the continual resurgence of hope and battling despair. Thanks for summoning the energy to share your experience, and wisdom, with us.

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