What would you tell your 18 year old self?

I saw this wonderful and warm video on LGBTQ midlife adults reading a theoretical letter to their 18 year old self. It was lovely, and hope filled and inspirational as intended. I thought for a moment about a different context .. of a letter to a younger person who would find themselves managing a life limiting illness. What would that look like? At first pass, the letter felt so dark. “You will go through 15 long years and twice as many doctors and procedures before a diagnosis. Before ever being believed.” And indeed how do you tell an 18 year old that they will not find a cure to this disease, that they will have long periods of great infirmary with other spans of limited functionality and fatigue.

I could talk about an amazing career and the kind people along the path who made my life easier. Those who accommodated a non-standard body so that I could capitalize on my mind and my efforts. I could certainly talk up my three amazing children who would each grow to become compassionate, funny and exceptional people in their own right. But I would have to mention that each of them also have the genetic defect that caused my own pain and suffering and that I had passed that on to them as well as my wit and warbling.

I wrote recently a short note to a woman my eldest daughter’s age who is in the throws of her own healing journey. And I wanted to tell her that in my experience the body can rally even when medical procedures seem to be spinning their wheels. Because for me, there were times when I felt hopeless that medical interventions were not helping and I didn’t know what would happen if I couldn’t find a “cure”. But then, slowly, or sometimes suddenly on a dime and for no apparent reason … things would ease up and I could do more for a period of time.

Knowing that things change .. the good, the bad and the funny is an important life lesson and indeed if I was to tell my 18 year old self something it might be … that life would always shift — usually when you least expected but certainly when it was needed the most. I suppose also I would tell her about happiness and laughter .. because her life would revolve around a series of call backs and comedy sketches sometimes very dark but always laced with humor. That she would always be loved even when her own mother turns away. Gosh, I’d like to have my own future self tell me how that chapter ends with Mom but some things even when known are still a mystery.

It was hard as I thought about what I might tell that teenager embarking on a new chapter … because I didn’t want it to sound as damning as it seems in the rear view mirror. Indeed I was telling someone the other day about a simple thing, like preparing dinner with my husband amidst old rock n roll and dancing embraces and they said “Well, fuck. All roses and fairies. Isn’t that fucking wonderful“. And indeed there are aspects of my life and the love of a man who would define happiness for me in this last chapter of my story, but I never want to leave anyone with an unrealistic impression of the strife and struggle that is part of the dance. I went on to describe some of the details of the day prior, when I was tear filled and so desperate for a workable situation inside my body/mind paradigm that simply wasn’t on the table.

So what would I tell my 18 year old self? Perhaps that life’s riddles reveal themselves based on their own comedic timing. That the script is already in the can and it’s best to find enjoyment in whatever plot twist you find yourself knee deep in the moment. Not to worry if it looks like the heroin is in danger … she buys the dress. (Which is a call back only my family today will laugh at, but somehow I think my younger self would find it funny even out of context.) Indeed, as I think on that …. the one thing that would actually have been helpful to KNOW at 18 is that I made it to 55 and didn’t have a heart attack thus far. Because since I was a young adult my heart has skipped, raced, tripped, paused, pained, strained and somersaulted in the syncopated rhythm with the rat, tat, tat, tat, tat, tat, on the drums. It has caused a deep rooted fear response in my neural network .. because as I said it would be 15 years of misdiagnosis before I understood the nature of this dis-ease. Had I known from the get-go .. as my own kids do or did … there’s a chance I could have avoided the organic nature of my panic at the disco.

Perhaps then, I’d whisper in her ear when she was at the under 21 dance club and the new song by Gloria Gaynor came on the hi-fi… get up and DANCE … whether you have a partner or not … get up and SING. Because that refrain tells you all you need to know about the next 30+ years. You will survive.