“The experience we did not choose, which we would have given anything to avoid, has made us different, has made us better. Through it we have learned the lesson that no one studies willingly, the hard, slow lesson of Sophocles and Shakespeare–that one grows by suffering. And that too is Jessy’s gift. I write not what fifteen years past I would have not have thought possible to write: that is today I were given the choice, to accept the experience, with everything that it entails, or to refuse the bitter largesse, i would have to stretch out my hands–because out of it has come, for all of us, an unimagined life. And it will not change the last word of the story. It is still love.”
–Clara Claiborne Park, The Siege, A Family’s Journey Into the World of an Autistic Child
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I never choose for people to tell me their secrets. I did not choose for my son to be on the Autism Spectrum and to have cerebral palsy. Without the glory that is my son I would never have had the best teacher my soul could seek.
Other mothers are often the people who tell me their secrets. Some are mothers of neurotypical offspring and some are not. All confide they have moments they wish they were not mothers or that their children would suddenly die and be released from their daily pains or suffering. Those are big secrets.
Still, I would never have met many of those mothers and they would not trust me with their secrets if it were not for my amazing son.
I also did not choose for him to be a better painter than I am. This brings him great glee and for that I am glad.
Approximately 9 months ago I was diagnosed with Menier’s Disease. This is a disease of the inner ear which causes severe vertigo attacks and severe hearing loss. Mine was to the point that I needed surgery, because the attacks were so frequent. I had an endolymphatic shunt put in to help with drainage. I have to take a diuretic and watch my salt intake. I now have a hearing aid for the ear impacted by this disease. I am told that in 5 to 10 years it could “burn itself out” and the vertigo attacks will go away. I will be 60-65 at that point, and, I hope, still in good enough shape to go hiking.
One of my childhood homes, Carmel Valley, CA has a Saddle Mountain. I believe it is a state park. My new home also has a Saddle Mountain, which can be seen from my living room window. I joke that the one in Carmel Valley is western saddle and this one looks more like an English Saddle (but with a horn, like the western saddles have). It is 3 miles of switch backs and that last half mile is very, very steep . The view is exquisite. I wish I’d known, on that last hike, that it was probably going to be my last time, because I would have paid more attention and socialized less.
The first vertigo attack hit hard while I was driving Interstate 5 through Portland. I was terrified. “10:00 and 2:00” I told myself, positioning my hands on the steering wheel and staring straight ahead until I could pull over, call my husband, and have him and our oldest daughter come and get me (from 2 hours away). The surgery, diuretic and low salt diet help a great deal, and the attacks are much less often. But I will never risk having an attack (lasting from 2 to 24 hours) on a mountain top or while driving on a highway.
I don’t drive further than around town (because I can feel one coming on and can call for help), which means I don’t travel alone and may never attend one of Laura’s workshops again. I often forget my hearing aid, because the other ear hears fine and so I often don’t remember to put it in until, half way through my day, someone sits down on my right side and I can’t make out what he/she is saying. I also have to let my husband or someone know where I’m going when I walk dogs, always bring my cell phone along–both of which I hate– and can no longer lightheartedly veer off course because some other path looks more interesting. I hate this the most, but, because I’m terribly dyslexic I could NOT be relied upon to give good directions if I needed help. One of the triggers is being jarred by a fall or slipping on lose gravel, wet ground, etc, which is why I have to take these precautions. I also have a reactive dog, so don’t want to risk “the kindness of strangers” if they were to note I was in need of help. Oh, and I also really miss ordering soup at a restaurant (I have to dilute everything due to the sodium content). I once wrote a poem called I Want Soup. I gave a copy to the restaurant which inspired the poem and they keep it in their soup recipe book. “I’m in a book!” I joked.
Over this last year I have become the queen of good self-care and have discovered that what I once thought was good self-care was really just covering the basics. I listen to my body better than I ever have before.
But while some Saturday night’s I’ve had to turn down dancing with my husband, along with bike rides with my family (so grateful our young adult daughters still enjoy spending time with us) and can’t always order what I want at a restaurant, I do go dancing, do walk my dogs, do go on bike rides and have found ways to make diluted soups delicious (thank you God for Bone Broth, which is only 95 milligrams of sodium and fresh herbs!).
In fact, recently I went on a trip to Florida and, because I have seasick pills to help with the vertigo, I was the Go-To person during our friend’s wedding, which was on a yacht. We traveled the canal in South Florida and so someone joked “You’re in Miami 5 minutes and already you’re a drug dealer!” And, by the way, despite dancing on a rocking boat, I never even needed to take anything.
I really hope that I get to hike Saddle Mountain again (either one), and, more importantly, have my independence back, but I have to say that I am grateful for all I’ve learned about self-care, and for how much more I appreciate my dog walks, bike rides and dancing with my husband, for the times when I can do these things are so much more precious now.
I also appreciate how much I have learned about interdependence and much nicer life is because of this.
Wynne, it sounds like you’re doing as well as you can with a really tough life-changing situation. Sending love and best wishes your way.
Thanks!