A little while ago someone told me that they thought my stroke had ‘softened me up.’ This remark — made in an offhand manner— upset me deeply. It still upsets me, in fact: perhaps more than any of the countless other well-meaning and unintentionally hurtful things that people have said to me about my stroke.
At least part of why this remark has bothered me so much is because it was made by someone who I care about. But really, the key thing that made it hard for me to deal with is the particular way in which the statement “your stroke has softened you up” neatly diminishes what I’ve been through —minimises and packages up my eight year struggle with brain injury—and shuts it away in a box that is meant to remind me that I’m now a better person. Contained in that box is a story of improvement: I was hard before and now I’m softer. Perhaps I needed softening up? Happily, my stroke came along to solve that problem.
This remark has also been bothersome for me because it was made at a moment when I was feeling particularly ‘soft’: dealing with the health issues that have prevented me from travelling, from seeing friends, and from doing a little of what I wanted to this summer. So yes, the reality of my situation — here, eight years after my stroke — is that I am indeed a much ‘softer’ person than I was eight years ago for the simple reason that brain injury and disability have made me feel vulnerable.
I’ve worked hard to make my body work to the best of its abilities, but the inevitable effect of having a black hole in my brain is that my left side has much less strength and function than my right. While an able-bodied person moves their limbs without thinking, I am continually aware of having to ‘tell’ my left arm and leg how to move and to behave. I honestly think my left arm and leg are pretty amazing, but they are also very unreliable. And because of their weakness and unpredictability, I have much less trust in my left arm and leg. In public situations, I am often aware of ‘guarding’ my left side, and am deeply afraid of routine jostling or, indeed of, any physical contact in case I lose balance and fall over. The very ground beneath one’s feet can be a significant source of fear if you don’t know that when you hit it you are going to be able to get up again. Even alone, and otherwise relaxed, I routinely feel uncomfortable, uncertain in my own skin. And pretty much all of the time, I feel physically vulnerable, in a way I never did as an able-bodied person.
So yes, this basic vulnerability—or softness, if you will—is probably the most noticeable difference, between the pre- and post-stroke me. It is also the difference which, both physically and psychologically, I’ve probably found most difficult to deal with. I explored a lot of really tough issues when I was writing Handywoman but found that I couldn’t look too hard at my own physical vulnerability, my own continual sense of bodily un-ease. That’s because it’s still something of a struggle, which I’m trying to resolve (or perhaps to just accept).
I’m writing this post because I finally feel I’m moving towards that goal. One way of doing so is to remind myself that my post-stroke body isn’t weak or soft at all: it is strong, just the way it is – and in fact I’m doing everything I can to maintain that strength and function. Outdoor swimming has really helped me to turn a corner with that this summer and, in the past few weeks I’ve found an indoor pool in which I feel comfortable swimming laps. This pool also has a gym, and yesterday I introduced myself to it with a supportive and helpful trainer who understands my situation. This is the first time I’ve been in a gym with able-bodied people since my stroke, and I was very nervous. It was an interesting experience: some equipment I can use and some I can’t. Some exercises and activities might be something I’ll move towards developing; others (like running, or using any sort of standard bike that doesn’t restrain my leg and foot) are always going to be impossible. Even with a supportive trainer, I felt physically vulnerable in that space, and believe me, it is by no means easy experimenting with things you cannot do, or movements which it is a struggle to perform. But overall it was a positive experience. I’m going back. On my drive home, I cried, but not because I was upset. I cried because I was happy that I could be there, in that space, in my post-stroke body, doing its thing, albeit differently. Perhaps in time I will be as comfortable among the gym equipment as I am in the water. Perhaps I can develop a bit more trust in my limbs, guard them a little less, and simply let them be. This is not about “recovery”, or “improvement” or about trying to be more able-bodied. It is about accepting that my disabled body is strong, just as it is. And perhaps in time, I can feel a little more easy in my post-stroke skin, a little less physically vulnerable.
We are impatiently waiting for delivery from our printer, and expect Handywoman to be published on Monday (20th). Pre-orders ship next week!