The thing I seem to have forgotten about therapy is how much therapy sucks when you’re just getting started. Suck is normally an impactful enough word for something terribly awful and hideous but in this case it feels almost too benign. SUCK in all caps would be a better word choice in this case but it also looks a little shouty. Suckaramalammadingdong makes it feel bigger but a little too whimsical and therapy at the beginning is anything but whimsical.
After 20 years with my precious psychologist Cheryl, even the sessions when I sat on her couch and sobbed my face off felt like fun in some twisted, bizarre way. Cheryl brought me joy just by being Cheryl. In fact she still does, but retired Cheryl can only therapize me informally, and yes I made up that word, but informal or not she sure can still bring it. I found that out when she made her way to the Hidden Falls Home for Wayward Women for a visit recently and she very nearly fixed me over the course of a couple of hours chatting over a WeightWatchers sugar-free orange pudding dessert substance that was decidedly oddly tasty. Very nearly fixed me, but no cigar. The madness of Bethy Bright is something of gargantuan proportions that won’t be solved toot sweet no matter how much I will it to be so. This madness is stubborn, ornery and has apparently moved in and gotten real comfy here in the ‘burbs. That bitch plans to stay a while. She also likes weird sugar-free orange fluffy desserts.
Dr. KB, not short for Killer Bee but it would be kind of awesome if it were, is fully buckled in for the long haul as we work through something called ACT, or Acceptance and Commitment Therapy. As that handy link puts it so concisely, “Acceptance and Commitment Therapy (ACT) encourages people to embrace their thoughts and feelings rather than fighting or feeling guilty for them.” Sounds like something I’d be really good at, right? I mean, once you’ve stopped laughing, you might like to know that this type of therapy is legit proven to be effective. The approach helps you (and again, I quote from that handy link above), “…commit to facing the problem head-on rather than avoiding your stresses. Imagine committing to actions that help you facilitate your experience and embrace any challenge.”
Imagine indeed.
Dr. KB told me about the Chinese Finger Trap, a trick that is played at children’s parties where you’re told to put each index finger in one end of the tube and then you are asked to remove your fingers from the tube. Easy! Pull them out. BOOM. Free fingers. Except when you try to pull both fingers out at the same time the tube just gets tighter, thus the trap. There is no way to pull your fingers out of the tube unless you rethink your approach and pull one finger out at a time. The point is obvious. The things we do to free ourselves from the pain of the constant anxiety voices in our heads are usually the things that make them worse. Don’t like the thoughts you have screaming at you in your brain 24 hours a day (yes, even while you sleep)? Easy! Just tell yourself to stop thinking those ugly scary thoughts and think happy sunshiney thoughts instead. The simple truth of the matter is the harder you try not to think a thought, the deeper that thought digs in and puts down real ugly roots that laugh in the face of your ever-so-helpful attempt at (toxic) positivity.
Then Dr. KB blew my mind again by whipping out the rowdy school bus analogy.
In this scenario, I’m the driver on a bus full of rowdy creatures who are screaming things at me, jumping around like a bunch of wild hooligans, shouting things like, “Use it or lose it! You’re never going to be happy in that wheelchair! Sleeping in your living room in a reclining sleep chair is what old crippled people do! Look at how droopy your boobs have gotten slumping over in that wheelchair all day every day! Gross! That job you love so much? That’s for normal people asshole, it’s going to actually kill you. You really suck at physical therapy lately, guess you’ll be showering once a week with an audience for the rest of your pathetic life. You barely stood up today worker girl…USE IT OR LOSE IT BUT LOSE THE JOB THAT REQUIRES YOU TO SIT ON VIDEO CALLS FOR HOURS AND HOURS A DAY AND LOSE YOUR AWESOME ACCESSIBLE HOUSE AND OMG YOUR FINGERS SUCK YOU CAN’T EVEN WRITE THAT WELL ANYMORE AND WHAT IF YOU HAVE TO POOP WHILE SOMEONE IS AT YOUR HOUSE VISITING AND IT TAKES YOU AN EXTRA LONG TIME AND THEY’RE GROSSED OUT BY YOUR DISGUSTING EXISTENCE AND HOW ARE YOU GOING TO BE IN BACK-TO-BACK MEETINGS AND PEE AND FEED YOUR STUPID SELF, IMPORTANT FUN JOBS ARE FOR HEALTHY PEOPLE! OH…AND WHILE YOU’RE SITTING THERE WRITING WITH NUMB FINGERS REMEMBER…USE IT OR LOSE IT BITCH. USE IT OR LOSE IT!”
But the screaming hooligans on this hellish bus ride that is my life lately are physically unable to pass the big white line at the front of the bus that separates me from them. They can’t touch me. They can’t make me change direction or send me on a bad route they can only keep trying with their incessant screaming. I am apparently in the process of learning how to hear these terrible, awful ideas all day every day without believing them or doing what they say. Dr. KB explains that I might have to slow down to gather my thoughts, make a plan, that kind of thing but they can’t make me stop.
I’ve been pushing myself for a destination that requires constant improvement. I’ll say that again: I have been expecting constant improvement from my lesion-riddled spinal cord disease-having body. Constant improvement, said the girl with the chronic progressive disease.
When I fail at physical therapy, I feel like I’m going to fail at life. My brain has equated constant physical improvement with independence, that thing which is so dear to me. But what if they’re not related quite the way my brain thinks they are? Constant improvement under these conditions is a goddamn pipe dream. The stress of my daily schedule doesn’t lend itself to peak performance in my two full hours of PT and one hour plus a shower with my OT. I’m exhausted from mastering the good old ADLs, y’all (or activities of daily living for the temps who might be reading this). Every time I stand up to transfer, to fix the coffee pot, to wash a dish, to feed my damn self, to get in my pajamas after a 10 hour back-to-back work day – this all requires movement! Sitting, standing, sitting, standing all damn day and night really.
My brain wasn’t understanding that reality. I suck in PT. I can barely walk far enough to get myself into my awesome shower. I can’t master sleeping in my bedroom because at the end of the day I am 100% out of juice for attempting bed gymnastics. I’m just freaking tired! Doing this disabled life, this fun but pressure-filled job, learning to live alone in this amazing new house…My brain can be a real asshole sometimes because sitting here writing about this makes it all seem so obvious it’s laughable. Constant improvement? In this situation? Seriously?
The thing about ACT is that it forces you to examine and declare your values across many dimensions, things like relationships, family, work or education, spirituality, physical well being, recreation. I had such a hard time with that exercise. And the reason became quickly obvious. My values, the things that make me me, are often in direct conflict with the voices in my head that won’t shut up. Take physical well-being as an example. When I’m honest, in my pre-MS life and at more core the things I value around physical well-being are simple: rest, comfort, quiet. Take a second and try to reconcile those intrinsic-to-me values with the way I’ve been living my life. USE IT OR LOSE IT MUCH?!? This is such an obvious conflict I can’t believe it took me three sessions and a damn PDF worksheet to figure it out. Dr. KB blew my mind once more when I whined at her about why the hell therapy like this has to take so fucking long when the answers are so obvious an idiot could see them.
“We’re both climbing a mountain, but we’re climbing adjacent mountains. You’re looking through your thoughts. I’m looking at your thoughts,” she said, so matter-of-factly it almost made my head explode.
I’m making some changes. I’m pulling back on my PT/OT schedule. It’s just too much. I’m killing myself trying to help myself. I bought a second sleeping recliner so I can start sleeping in my bedroom whether I feel up to bed gymnastics or not. This will help my brain relax about not being able to sleep in my beautiful, cozy new bedroom. Yes, it involves spending yet more money. Why does being disabled also require seemingly unlimited funds? It’s ridiculous and another reason I am forever grateful for a job I love that accommodates my decidedly special needs.
My therapy homework this week was to choose a bold committed action to challenge myself (not physically, obviously). After hemming and hawing about not being able to think of something, Dr. KB did it again.
“How about if you choose to allow yourself to take the medication that is prescribed for you that helps quiet your mind to enable you to have some peace and do your mindfulness exercises without judging yourself a failure for taking it,” she said as if that wasn’t the best idea ever.
Stop having anxiety, judging and beating myself up for taking the perfectly legal, medically prescribed anti-anxiety medication I’ve been given to take to help reduce ANXIETY?!?!?!?
Now that’s one big bold committed action, Dr. KB.
I don’t know what I’ve done in my life to deserve such extraordinary luck with finding magical people in this phase of my bright and dark life. Finding a good therapist is like finding a single man who loves chicks in wheelchairs with droopy boobs. But I found her by using the nurse advocate service through my health insurance. She was number four on a pre-qualified list of five. I found my miraculous contractor by sending a DM on Instagram (seriously) and he literally changed my life. I got acquired by a giant-ass global corporate monolith six years ago which felt like the worst thing that could have happened and somehow ended up in the perfect job for broken, disabled me. An amazing friend from my old married life going through her own painful transitions gets back in touch and somehow it makes for the perfect mutually beneficial set up for both of us and the Hidden Falls Home for Wayward Women is born. Internet friends become real friends and change your life with one phone call.
Gratitude helps me keep the bus full of hooligans from going off the road. So far anyway.
Sandra Schneider
April 25, 2021 2:17 pmHmm…Just read an article in the NYT Health Section right after I read this blog entry: https://www.nytimes.com/2021/04/22/well/mind/radical-acceptance-suffering.html
Bethy
April 25, 2021 5:49 pmThat article was brilliant. Thank you for sharing that piece Sandra. ♥️