It’s Disability Pride month, and I’ve been putting off writing, thinking, and doing anything about it. Why? Or, to put it in coaching terms, what barriers are preventing me from taking action?
Denial. And the knowledge that I can’t deny it anymore.
I received the news (confirmation, really) that I had moved from Relapsing-Remitting to the Secondary Progressive stage of MS from a neurologist I’d just met several years ago. I was gobsmacked in spite of a rational corner of my brain whispering, “When exactly was the last time you remitted?” When I spoke to my usual neurologist about it, he waved it away, crying, “Semantics!” And I believed him. Until now.
Now I find myself in a new state. Each small step up (into the house, onto our parking pad) is a struggle. I spent 10 minutes trying to get up off the bedroom floor after a small collapse* recently before giving up and awaiting my knight in shining pajamas. He got me to my feet only to have my legs say “no thank you”. So I was hoisted onto the bed where I lay in an awkward, dejected heap.
These moments happen more and more. My fabulous new purple Rollz rollator moves a little too fast, and I bend at the waist without the core or arm strength to right myself. The muggy heat hits me so hard, I can barely wobble to the car with a cane and an escort, leaving Neal to lift my legs in and close the door. Some days it’s hard to stand long enough just to brush my teeth.
Blame Game & the What-ifs
I spend a lot of time these days cycling between who-can-I-blames and what-ifs.
- My doctors didn’t do their jobs! Why did no one emphasize the importance of exercise from the moment I was diagnosed?
- What if I’d kept up with the workouts LaTasha gave me?
- The pandemic made me weaker! And Neal made me soft! Having him around and insisting on doing things for me has made me less independent.
- What if I’d done my physical therapy exercises regularly since the first time I went?
- I am so damn lazy! If I tried harder, I’d be stronger.
You get the idea. By the end of this cycle I’m angry, weepy, and fantasizing about the time machine that will take me back to when dance classes were possible and making past-me buy a lifetime pass to Joy of Motion. Would it make any difference? Who the fuck knows? I sure would have had fun taking Afro-Brazilian classes, though.
Worst Case. Best Case. Likely Case.
When I’ve exhausted my fretting about the past, I look to the future… what does it hold? Another decade of Neal hauling my ass off the floor before we have to hire a health aide when I’m only 54? More time in a wheelchair? ALL of my time in a wheelchair? And what about my brain?! When will it turn to complete mush? When will I no longer be able to put depressing/inspiring words together to share with the world?
There’s a cool and simple framework for reeling in catastrophic thinking like this that I learned at the Capital Coaches Conference from Dr. Karen Reivich’s keynote address. So here goes.
Worst case: I’m confined to a wheelchair tomorrow.
Best case: My strength and balance improve so that I can walk and do daily activities independently.
Likely case: My slow decline will continue. Slowly.
Purposeful step: Commit to 10 minutes of physical therapy daily.
I’ve wept through writing most of this blog, but typing the above settled me. A small purposeful step can do wonders, and I think this one is doable. Especially now that you’re all my accountability buddies. Email me! Text me! Check in on whether I’ve done the PT.
Finding Some Pride
AmeriDisability has this to say about Disability Pride Month:
“Using bold images and strong words, disability pride awareness dates, parades and festivals both uplift and challenge. Pride comes from celebrating our heritage, disability culture, the unique experiences that we have as people with differing abilities and the contributions that we offer society.”
I have not gone gentle into my disability, and I feel like an asshole whining about the possibility of wheelchair confinement while writing about disability pride. I have at least nailed the “strong words” part of the celebration, and I’m feeling pretty proud of these “unique experiences” and “contributions”:
- Speaking candidly about my life, which I hope allows those with MS to feel less alone and those without MS to see the world a little differently
- Representing the disabled community with good humor while challenging the rest of the world to do better
So happy Disability Pride Month! I’ll be celebrating from my fancy new toilet.
*A collapse = “Oh shit, can’t stand anymore, let’s melt to the floor, shall we?” A fall = “Welp, I guess I’m going down! Protect the face!”
6 thoughts on “Disability… Pride?: In Which I Whine, Share a Tool, and Find Some Pride”
Be proud that you can be honest and whine if you want. But think that you ARE strong..that is the secret..you have meaning in your life. .you help people and are loved privately by friends and family and by all you talk to… let’s meet again soon..Aunt M from Roma
There is so much about your writing that is necessary for the world to hear to become better equipped to understand about people with visible and invisible disabilities. As a ticking time bomb of the invisible kind, I especially liked “A collapse” vs “A fall”. I tend to add in a few loud expletives so folks clear a path for my descent. Cheers my delightful niece.
I just want you to write often; you’re so good. Write whinily, write pridefully, write like the greats whom you write like already. PS: you’re new toilet says “Queen Rebecca” to me!
Carol, if you think you like Rebecca’s writing today, you should have read it when she was in third grade! I was her third grade teacher and could hardly wait to read her stories/creative writing.
Carol B., Mrs. Allen (what fun to say that!), was an AMAZING teacher who taught me how fun writing could be. I am forever in her debt.
Rebecca, I love you just as you are! If you call and ask me tomorrow to be there for you I will do it! You are an amazing woman who deserves to speak her mind and say what needs to be said. Love you from the bottom of my heart. ❤️😘🤗❤️