It’s been a tough three weeks or so for me and until I thought about what to write for this post, I hadn’t realized what was going on.
Ever since I started exercising deliberately at the age of 35 or so, I have mostly experienced it as a journey toward good things. A journey toward strength, toward endurance, toward better health, toward confidence, toward community etc. I have come to view myself as fit, capable, powerful and more importantly, as a person who can continue to attain even more of the same as long as I’m trying. These assumptions I have made about my capacity to do more (and implicitly, to be more) have at least a few blind spots, however. One big one is my ability to hide from the reality that lurks inside, which is Rheumatoid Arthritis.
I was diagnosed with juvenile RA when I was around 13. At the time, treatment was limited to Aspirin, big doses. I remember, as a child who was clumsy and not used to much physical exercise anyway, that it was a relief to me that I now had a good excuse to get out of gym. That’s mostly what it was. Since I didn’t have much that I liked to do that required a lot of movement, the mild swelling in my knee and hands didn’t really mean much to me.
In my 20’s, I went completely without treatment. I can’t say exactly why. I was used to what my limits were and they weren’t huge. I was so freaking lucky that the progression wasn’t fast. My hands deformed slowly over time but that was about all. Sometimes my knee would swell or my wrist would hurt. Sometimes it was hard to hold a pen for a long time, but other than that, I just lived with it. All the while, I did not see myself as a fit or physical person.
Things all changed when I got pregnant. Pregnancy often puts RA into remission and I was amazed at the increased functionality of my hands. After I had my son, the disease came back with a vengeance and I decided to go back to see what could be done. Long story short, I got on some good drugs, got into remission and have stayed there for the most part ever since. I can see now that this remission has, in fact, enabled me to start my journey toward this new identity as a fit, strong person with perceived unlimited capacity to improve.
But three weeks ago, in the course of 24 hours, I went from fine to unable to shake hands with some people I was having dinner with. I couldn’t cut my food or carry the plate. My wrist and knee followed shortly after and I knew I was in trouble. This wasn’t the first time something like this happened and I knew what I had to do. I had been lowering the dose of my meds hoping the remission might be permanent. It wasn’t. I upped the dose again and within days things started to improve. But I’ll tell ya, it scared the heck out of me.
On top of that episode, last week while running 5 k at my top speed, I apparently did something to that same right knee and it swelled like a balloon. While I think that was an injury and not the RA, it fed my fear. What if I just can’t do these things any more? What if all that strength and capacity is taken from me by this disease? What if it kills me (it can, see here)?
One of the things I’m really asking here is “Who am I?” My fear breaks this into an either or scenario. Either I’m healthy, fit and have capacity or I’m sick and I’ll lose myself. So I spend a lot of time ignoring the mechanism under my surface that likes to eat at my connective tissue for fun. To top it all off, the thing I’m dealing with isn’t even a disease from the outside. It’s my own damn self hurting me. But unlike the first time it happened when I was 13, it isn’t a relief. Getting my body out of gym class is the last thing I want right now. I’m in rebellion with my self.
I know the answer. Take care of me and keep moving. I’ll adapt if I have to. That’s another benefit of capacity. But I don’t like feeling fragile and out of control, even if those qualities are actually fundamental truths of all our lives. We are fragile. We have such limited control of so many things that matter.
Now that I have said these things I am aware of something new. I’m glad my body reminded me of my fragility. I’m glad it reminded me to take care. I’m glad it reminded me to be grateful for what it can do. I’m glad it focused me back to the fact that I feel love for it and I’m frankly amazed at how far it has come. I’ll try to walk away from my fear and back to acceptance of all the things. My health and my illness, my capacity and my disability, foreground and background. . .all of them me.
Love your honesty and fierce determination. Here’s to the right drugs and treatment.
Hi Susan,
thank you for your post. I am wondering if you have read any critical disability theory or if you have any involvement with disabled activists or people in disability studies. I think that your perspective on and description of your situation would likely shift if you did. I want to point out that your description of your hands as “deformed” is not merely a (politically-neutral) self-description, but rather has implications and consequences for public perceptions of others, the opportunities made available to them, their self-understandings, and so on. No “personal” testimony in a public forum is unfettered and without political and social consequences. To be sure, some disability theorists and activists have strategically employed such language for certain political ends; but that doesn’t seem to be what you are doing in this post.
Finally, I have written blog posts at the New APPS blog about the use of the term ‘blind’ as a metaphor. I have also written a more recent post at the Discrimination and Disadvantage blog about ableist language more generally. That post is here: http://philosophycommons.typepad.com/disability_and_disadvanta/2016/08/no-language-is-neutral.html
Shelley, as another blog contributor, I appreciate your reminder about mindfulness about language… I’m working on a post about chronic illness as well and it’s important for me to be reminded about the consequences of language. At the same time, something that struck me about your response to Susan was that you treated her post like an academic paper, not a personal narrative about lived experience. For me the most important thing about Susan’s post was the emotion and vulnerability that come with realizing your own physical fragility — treating that honest and tender opening up as though it is only another faceless entry in a discourse about disability is as dehumanizing to me as the use of the “wrong” language. Just a consideration.
I agree with fieldpoppy’s observation. Shelley, when I read your comment, my first reaction was “That’s the one thing you took away from Susan’s post? The fact that she used a word you don’t feel comfortable with? Not her reflections on aging and illness and vulnerability?”
Not to mention that it’s Susan’s body and Susan’s experience, and therefore hers to describe in any way she sees fit. FWIW, a dear friend of mine is disabled and uses a wheelchair, and she blogs about her life. One thing she hates is people trying to police the language she uses to talk about her disability and her life experiences. She is adamant that it’s her life and people who are not living her life have no right to tell her how to talk and write about it.
Thanks for this comment. I am not an academic and so am not intimate with the most current thinking in your field. It’s interesting that the language I used to describe what happened to my hands is the language my doctors used. So I suppose that it makes the point about those in power setting the narrative in some ways. It’s my narrative. I wouldn’t impose it on another any more than I would insist someone call themselves queer instead of bi (and believe me, that’s an argument some will make). Especially in contexts like this blog, I’m inclined to use the words that work for me. They are my hands after all.
That is a huge breakthrough of self awareness.
It is hard when we define ourselves by our abilities or what we can do. Because it means if we can’t that we are somehow deficient.
And it is very difficult to let some of that go. To feel ok with what is…and to not long for what is not.
I hope your treatment helps. For me, I have found self compassion and acceptance through therapy and yoga.
Thank you for sharing your experience. I have a different form of arthritis and when it flares up I too struggle with being ok with doing less.
But as we age that will be a reality, so I hope these small lessons help me develop acceptance.
Anne
Thanks Anne. These shake ups are good for us in the end I think. They always come in one form or another.
Yes. We can minimize, but not avoid suffering. Unfortunately