Six weeks ago my mom read a post I wrote and wondered (publicly in my comments section I might add) why I don’t share with her the shittier parts of having MS? It was a fair question that got me wondering. Maybe I’m too secretive? Maybe I’m too sensitive? Maybe I’m just an asshole?
So I decided to take a poll. I sent an email to friends with chronic conditions and asked, “How often, if ever, do you share health information with your mother?”.
My friends with mothers who also have chronic conditions share everything. My friends whose moms live without chronic conditions share nothing if their moms are in their 80’s and the rest generally keep it light while hiding any bad stuff with mom’s that are younger.
My mom’s not only younger but actually a very easy person to talk to so why don’t I keep her in the loop? We discuss politics, religion, and family issues. We can talk about assinine pop-culture events then switch gears and have a deep, difficult, interpersonal conversation. She listens, only gives advice when asked and doesn’t hound me about the choices I make. So why not tell her more?
The more I thought about it, the more I realized that I don’t share that much with most of my friends or family. Over the years I’ve become a verbal ninja, able to switch topics away from myself with anti-gravitational deft and speed. I do this because chronic conditions are chronic! I don’t have the flu or a rash that’s going to go away. My diagnosis often keeps me from living the life I want and on the occasion that I do experience a positive change it is usually slow going and non-linear.
No one wants to hear about my ring finger moving a quarter inch and frankly I don’t give a fuck either. Sure it’s great, but it’s a non-functional improvement that I’ll keep to myself until all of my digits are moving enough for me to hold a glass of wine again. Then I’ll tell folks about it.
Besides my husband knowing the good, the bad and the ugly, I find that I’m the most communicative with friends that also have diseases or chronic ailments. My friend with muscular dystrophy is the only person I could do a 3-legged race with. Not only do we have shoddy mobility in common, we also enjoy similar benefits from yoga, have the same amount of good and bad days as well as similar levels of dark humor, compassion and get-off-your-ass-and-just-do-it-ness. When she texts me, frustrated about falling I don’t pollyanna her with positive bullshit nor do I ask if she’s considering an assistive living facility. Instead I listen. I remind her that she didn’t piss herself so she’s still winning. Sometimes I help her problem solve what happened and how to avoid it and of course, she’s my go-to person to text whenever I trip or fall. Likewise she treats me in an even keeled way with just enough M.A.S.H. humor to keep me from taking myself too seriously and she’s fun to go to concerts with.
My diabetic friend has a completely different set of needs than I do. She quantifies her caloric intact, glucose levels, insulin amounts, exercise choices and meal times as much as I have to coordinate walking distances, outside temperatures, terrain levels, numbers of steps and access points. So basically she does math all day while I perform physics and we do these mental gymnastics on top of our day-to-day activities. When she says she has to eat at 7pm, we’re seated in a restaurant by 6:30, damn it. Likewise when we pick the restaurant we pick a place with ample, adjacent parking, tables on the first floor and air conditioning if we’re meeting during the summer. I overlook that she injects herself at the table. She pretends not to notice when my precariously balanced cane leaning against my chair, makes a loud noise when it crashes to the floor. We’re equal parts annoyed with our diseases yet equal parts compliant with what we need to do. So when we bitch to one another, no one tries to fix the other person or pray away their issues because we both know and respect how the other feels.
Asking a sick person about their health is like asking a golfer about his round. The proper answer to the question is, “Great. I was three under par today!” or “Lousy. I shanked severed shots and lost $200”. Then change the subject. No one actually wants a 20 minute monologue describing each drive, chip, and putt.
The same goes for marathon runners. “How was the race?” should be answered by, “I ran my personal best” or “It was brutal today due to the weather”. Telling your friend how you shit yourself just a bit on mile 13, and that it was the biggest, mental, mind-fuck you’ve ever experienced, might be too much information.
Mom’s that have given birth, however, are the worst. They’ll sit at a co-ed table of strangers sharing labor and delivery stories, at work! Larry from accounting doesn’t want to hear about your episiotomy, Marcy! Even if his wife is 37 weeks pregnant.
The only people that truly want, understand and deserve the above details are other golfers, marathon runners or pregnant chicks. Otherwise, zip it! And that’s why I don’t share much about my health. The overwhelming minutia of life with MS is not worth sharing. It’s complicated yet not interesting and it keeps me from being treated like I used to be treated (like a regular person). And regular people don’t talk a lot about their health problems until they’re older. (Which might be why my friends with Octogenarian moms don’t say much to them?)
It’s easier to be treated like the old me when I’m not talking about my health. That’s why I write about it instead. I Vince Vaughn my thoughts and put them “on the line” so that I can release them from my body, mind and spirit. I’m pretty sure the combination of saying less but writing more is the only reason I’m able to stay sane through all this.
I do know that I don’t have the energy to worry about others, worrying about me and if I have to edit myself on this blog, I’d probably stop writing it. So how bout this…
When I have something good to share, I’ll let you know. I’ll let everyone know. Hell, I’ll probably post it on this blog. But when I’m trying a new medication or therapy, consider me like a fiction writer not wanting to give away the plot or a superstitious person, not wanting to jinx my own progress. I need to fail privately, process whatever went down, adjust and then share it on my own time table.
That doesn’t mean that I’m not an asshole. But at least I’m a sane asshole. I’m never going to talk more but I do promise to write more to keep everyone in the loop. In the meantime, maybe finding other mom’s whose daughter’s have chronic conditions would be better in the end than talking with me?
Just an idea. (That I got, not by talking but by taking the time to write down, re-read, and edit my thoughts.) Maybe I’m on to something after-all?