When I was young and sitting in the passenger seat of a car, I used to imagine getting in an accident and losing a limb or becoming paralyzed. I’d wonder whether I would adapt more easily than an able-bodied person to my new state since I’d been disabled my whole life, or whether a new disability in addition to the existing one would hit me extra-hard because I’d be losing more of the lesser ability I had. Paralysis and limb loss are often trauma-related ability-altering events, and I’m very grateful to have avoided them thus far. What I am experiencing now is chronic rather than traumatic but also life-altering.
I haven’t posted on this blog for over nine months. There is something I’ve been wanting to express, but I haven’t known how. I went and looked at my last two posts to see where I left off, and those two posts were about last September, one year ago. They were about forcing myself to take walks outside and making myself get used to using a walker in public places. I made myself take a walk every day for thirty days. Here is what I wrote:
“I proved to myself that I can leave my house. I can go outside and move my body. Do I ever really want to? No. Nope. On beautiful days like today, I open the windows and I look outside. But do I want to make the effort to go outside? No. Nope.
Is it depression? Probably. Is it fatigue and chronic pain? Most definitely.
But I did do it, so I know that I can. I can make myself do things that I don’t want to do, because I know they are good for my physical and mental health even if I can’t feel it. But, certain things being good for my physical and mental health is not motivation enough to do them.”
After I reread that, I thought, well, shoot, I’ve said it already. It’s been a year, and here I am, feeling just the same way, but more. I am so tired of being tired, so tired of constant pain.
Is it depression? Yes. But it’s also grief. Deep grief. Sadness, and fear, and a sense of unpreparedness, of bewilderment.
Hang on, I know I was told as a kid that I’d have arthritis at 40. But I didn’t know what that really meant. My idea of arthritis was a bit more pain, moving a little slower. First, let me say that I had arthritis WAY before the age of 40. I didn’t know that arthritis can burn, and that it can render my feet unreliable and unable to hold me, that the sensation isn’t always just an aching, but true pain. I certainly didn’t know that it would appear in my hands and fingers, apparently unrelated to my disability, but here so early in life and so unwelcome.
Hang on, I know about wear and tear and premature aging. I’ve been living it and feeling it since my twenties. But my understanding of wear and tear and premature aging was, again, a bit more pain, moving a little slower. I couldn’t know that it would mean that I would not feel able to safely walk from an accessible parking space into a grocery store where I need to use the cart to walk. That I wouldn’t feel able to safely cross my kitchen with a glass of water in my hand. That somewhere along the way I wouldn’t be able to bend over enough to pick something up off the floor. That the million-step process of taking a shower and getting dressed would be so damn exhausting. That sometimes I’d be so tired that when I’ve finally gathered all the ingredients to make dinner only to realize that I need to take two steps back across the kitchen to get a spoon, I’d want to weep.
I am struggling with and grieving the loss of independence and loss of safety. And let me be clear that I didn’t feel fully independent or safe before. What is in store for me? Another fracture doing an everyday task at home? A stroke and dementia like my dad? All of the above, simultaneously? I know it isn’t helpful to worry about the future and that it’s best for my mental health to try to stay grounded in the present moment. But. I’m human. I think about the future. I live in this body in every present moment, and it shows me its limitations in every present moment.
I’ve been with my husband for fourteen years, since I was 31. In the beginning, I walked 20,000 steps a day in Philadelphia, in Chicago, London, Berlin, and New York City with him. Yes, I held on to his hand every step of the way. Yes, I was exhausted, and in pain, and I fell once or twice. But I could do it. In the beginning, I handcycled while he became a runner. We worked our way to running ten miles together, even thirteen once. I was in the best shape of my life when I was 33 (the year we got married). Now, he is still a runner and I am no longer a handcycler. Now, he hikes and bikes and runs tens of miles at a time. I am proud of him, and I love that he is engaging in activities that are so beneficial to his physical and mental health. But I cannot say it is easy to watch him become an athlete while I continue to decline. Now he is the most fit and capable he has ever been, and I the least, and I had no idea that’s what was in store for us.
But you’re not even trying, I imagine him thinking as I try to express these feelings to him. He goes on a walk with me whenever I suggest it, and he would take me to a gym if I ever wanted to join. He supports me and wants me to do more, and I want to want to do more. He is right. I am barely trying. As I have written above, I barely make it out of the house. I seldom do the free adapted workouts online or my neighborhood water aerobics class. He is right. But life is also more complex than trying or not.
When I was a young kid, I could totally do pull-ups, at least eight of them in succession. As a second or third grader, it felt really nice to be as good at or better than my peers at something. I could also get across monkey bars, as long as I could climb the ladder and reach the first bar. The pull-ups faded away with puberty, and I remember only doing the flexed-arm hang for the presidential physical fitness test in junior high. (Don’t ask me how embarrassing it was to have a classmate hold my feet and count my small number of situps while everyone around me did so many more.) I enjoyed whipping out twenty (non-modified) push-ups well into adulthood. Constant neck pain in my late twenties did away with push-ups. In some ways, the changes have come slowly. When I started this blog, I wrote a post on “what I used to do.” Since 2020 (age 39), the changes have not felt slow, but have walloped me. It’s as though the inactivity of the pandemic, sheltering in place and working from home, accelerated the aging process and I never recovered. But I don’t understand why, just after the shutdown, I suddenly lost and then slowly regained the ability to grip with my right hand, or why both hands and forearms have hurt ever since. One doctor says it has to do with cerebral palsy, another does not. And it’s certainly all been downhill since 40.
Now, here I am at 45, a middle-aged woman. A disabled, middle-aged woman, living through perimenopause. I did not expect the sudden weight gain that put me well beyond what I’ve ever weighed before. I’m trying to accept it with a feeling of body neutrality, but I don’t recognize the person in the mirror, and I know every additional pound negatively affects my joints and arthritis. I wasn’t prepared for the skin sensitivity that makes seams and elastic intolerable. I didn’t know I’d feel so unsteady, literally weaker. It’s aging with cerebral palsy, yes, and it’s also sarcopenia, “normal, age-related muscle loss.”
The way to prevent and reverse muscle loss is strength and resistance training and increasing protein. More protein, I can do. But last week, I tried adding ONE POUND WEIGHTS to my adapted arm workout and the pain in my neck and shoulders still isn’t back to its normal levels. Because of the unignorable levels of constant pain in my hands, forearms, neck, and shoulders, doing any kind of exercise like pushups or using weights makes it so much worse. And, yes, I’ve tried physical therapy, heat, ice, cupping, acupuncture, meditation, massage, a TENS unit… And the truth remains, whenever I try to increase activity, I flare something up. Doing less hurts less. It’s such a cruel catch-22. I HAVE tried. I have.
As I struggle to get dressed in the morning, I wonder how much longer I’ll be able to put my socks on by myself. I know there are sock tools. Using them takes more time and effort and mental and physical adjustment. There are so many wonderful, innovative aids and tools out there to help us continue on as we decline. That doesn’t mean that using the tools costs us nothing.
I miss being in my early 30s SO MUCH. I miss walking out the door and taking myself to the farmers market and home again, my produce in a backpack. Just walking out the door, no poles, no walker, no AFOs to put on first. I miss getting out of bed on a Saturday morning and walking a mile loop while my husband slept. I cannot walk anywhere safely by myself anymore. If I think about it too long, I can’t bear it.
I know that everybody goes through degenerative changes as they age, that many, many able-bodied people acquire chronic pain. I know that everyone has to adjust to getting older and that they, too, miss things about their younger bodies. I just wasn’t prepared to come to that in my 30s. I thought I’d have more of the good years before the hard ones came. It’s a difficult and strange thing to be grieving for myself. I am alive, but I’m not who I was. She’s gone and I’ll never get her back, and that really hurts. The most complicated part of grieving myself is that it’s ongoing. It’s almost the opposite of grieving someone who has died. That kind of grief is often sudden, ebbs and flows, and perhaps lessens in intensity over time. The grief I’m living in now is a constant, only deepening as my abilities diminish. Grief that the only certainty I feel is the certainty of increasing disability, couched in the unknown of when and what and how.
I don’t know that I’ve fully expressed what I’m feeling. There’s so much more I could say, so many more thoughts and emotions circling my mind. But even if I only got halfway there, it helps a little to get it out, and to know I’m not alone.
