A few weeks ago, I read an absolutely marvelous post by Wheelchair Dancer, a letter to a TAB friend explaining why her approach to recovery and improvement was so different than theirs. It stemmed from an incident where the friend was “enthusiastic about how much better I seemed” and Wheelchair Dancer was unable to respond in the same way as her friend. She talks about how her improvements are not permanent, how she lives “in a cycle of event, recovery, plateau, and event. Sometimes, the recovery is actually an ‘advance or an improvement.’ But often, I struggle to get back where I was before. So, I don’t attach any great meaning or significance to recovery. I simply can’t.”
She talks about how she works on her body not because she is intent on achieving a cure or focused on “recovery,” but “because it give me great pleasure to do so. I am so excited to see what it can do, to push it to its limits.” And how that work is not part of a drive “to work for total healing and cure because I have come to understand a different politics of the body, one in which there is neither cure nor giving up.”
I have been sitting with this since I read the post, and I believe these ideas have immense power for me. While my illness is of the mind, not the body, I think the idea of defining for myself what “getting better” means, what goals I am trying to achieve with my treatment and medications, how I understand my own cycles of event, recovery, plateau, and event, is crucial to reclaiming my agency.
When I first got sick, I had a very different idea of what getting better meant. I was so overwhelmed with suicidality and self-harm that my idea of ‘better’ was any situation in which I felt in control of whether or not I was going to harm myself seriously. I didn’t feel safe in my own presence – I relied on watchers, babysitters, overseers – and wanted nothing that to be able to be with myself without fear. Once I achieved that (thanks, Effexor!), my next idea of getting better was to get rid of the tension and energy that would overwhelm my body periodically, forcing me to pace the halls, back and forth, back and forth, for hours on end, even while my body groaned with exhaustion.
A few years later, my conception of getting better had shifted completely. In my mind, getting better would mean I didn’t have to take those hateful pills every single day, would cut the tether between me and that prescription bottle. It would mean I didn’t have to have yet another first appointment with a psychiatrist where I rattled off my litany of trauma and despair. It would mean I never again worried about what thoughts would come to mind if i saw an x-acto knife or a pack of razor blades. It would mean I could put it all away, be cured, be sane, be normal, be like everyone else.
Pursuing that idea of getting better caused me significant harm. (In short: taking myself off all my meds all at once with no psychiatric supervision and dropping all therapy and counseling while moving across the country to a place where I had virtually no support system turned out not to be the best thing for me, and it took me about a year to pull out of the hole I dug for myself.) That idea of getting better was incompatible with my first conception of improvement – not being constantly buffeted by the desire to die and the periodic storms of energy that made me feel like a puppet dancing on the end of a string controlled by someone else. And when it comes down to prioritizing conceptions of improvement, I will always pick “not dead.”
Today, my idea of getting better has evolved significantly. It has nothing to do with taking pills or not taking pills, it does not insist on or exclude any methods of treatment. It is focused instead on me – can I do the things I want to do? Do I feel safe? And it relies on some things I’ve observed about myself and my friends with disabilities and the qualities that make me feel confident about our abilities to weather crisis events, to come through the other side and keep moving through that cycle of event, recovery, plateau, and event. There are three qualities I think are essential: 1) the ability to know myself and my illness well enough that I know when things are starting to go wrong, when crisis is approaching, 2) knowing what things can help ameliorate or prevent crisis for me personally, and 3) being able to ask for help and having meaningful help available. With those things, I know I can move through the cycle of crisis. It does not mean I can avoid crisis – I no longer think avoiding crisis is an essential component of “getting better.” I now think my ability to survivie crisis and move through it and beyond it is what it means to get better.
Which means, of course, that I am better. I’ve done it. I’ve achieved my vision. And that is worth more to me than I can ever say. And that is the power of taking agency over these ideas, of defining the term for myself. (And only for myself – I do not believe I have the ability or right to define what ‘getting better’ means for anyone else.)
(Again, thanks to Wheelchair Dancer for such an amazing post on this, which I recommend you click through to read in its entirety.)
Thank you so much for this post, abby jean. It really means a lot to me. Incidentally, I recently wrote about a similar topic on my own blog about this—the concept of setting hypothetical finish lines for myself when it comes to dealing with my mental issues and how it’s only harmed me in the past, but how it’s extremely hard for me to break out of that mode of thought. Earlier this year, when I returned to my university after nearly a year of being on leave to take care of my OCD and anxiety attacks (your descriptions of scary thoughts arising from sharp objects are extremely similar to my own obsessive thoughts), I thought if I only made it through this semester without relapsing or having to be hospitalized again, all my problems would go away. Well, I finished the semester and got on the dean’s list to boot, but it was a very hard semester for me—I had to adjust to having my boyfriend around in person instead of long distance (and often my obsessive thoughts the prior year centered around fears of harming him) and I had to deal with SAD since my university is in a very different climate from that of my hometown. Plus, I go to Cornell and three students committed suicide by jumping into our gorges within a three-week period, so that triggered a lot of stuff for me, not least of which was, “That could have been me last year.” After having been through all that, I certainly didn’t come out with no anxiety at all. It was humbling, and I’m still trying to get into the right frame of mind about the whole situation, but now I know that there is no arbitrary start/finish line to mental illness—the only start and finish lines in life are birth and death, anyway.
In regards to meds, I am trying to cut back on mine very very gradually because I want my body to start producing its own serotonin again instead of having to get it artificially, but there’s no way I could go completely off it until I feel 100% safe with myself without them, and I don’t think that will be until I finish college, at least. Trying not to stigmatize myself for taking pills and still needing therapy from time to time is hard (especially since my parents still sometimes see the pills [not the therapy] as somewhat of a crutch), but I’m with you in that my main objective is just to stay alive. Take care.
This post means a lot to me and really helps articulate my own thoughts on recovery and cure, as a person with OCD, autism, and depression. In particular I found this part extremely meaningful:
“Today, my idea of getting better has evolved significantly. It has nothing to do with taking pills or not taking pills, it does not insist on or exclude any methods of treatment. It is focused instead on me – can I do the things I want to do? Do I feel safe? …It does not mean I can avoid crisis – I no longer think avoiding crisis is an essential component of “getting better.” I now think my ability to survivie crisis and move through it and beyond it is what it means to get better.”
Thank you.
Julia Bascom´s last [type] ..What I See
This post was especially poignant to me as a few hours ago, my mum handed me a card that my Nana had sent. She said she wasn’t sure if I would take it the right way and hoped I did. I opened it; it was a “Get Well Soon” card. Nana doesn’t know everything about my disability; she just knows that I’ve not been very well for the past few years.
I didn’t know what to think, because the concept of getting well/better is something I’ve talked about a lot with my psychiatrist recently. She and I have gotten me to the point where I can both accept that I am not going to be cured, but also acknowledge that if I can learn to cope with things more (I have depression and social phobia) then I will be able to feel like I have more control of my life and enjoy it more.
So your sentence: “I now think my ability to survivie crisis and move through it and beyond it is what it means to get better.” was especially meaningful to me, because it’s something I’ve come to understand recently.
I am relatively “new” to the community of disability bloggers online, and this post really reaffirmed to me how glad I am to have found people who experience very similar things to me. It helps me believe that I am not making all of this pain and fear up. Thank you ever so much for posting this, and for the excellent link.
I don’t have anything important to throw into this discussion. I just wanted to say thank you so much for this beautiful and insightful post. It really resonated with me personally as this kind of acceptance of my mental illness(es) is something I’m struggling with right now.
I find that I similarly can’t deal with people who are that concerned about my “getting better”. Some of my impairments are, thus far, progressive. Some of them progress slowly and steadily, others in fits and starts. I know this and have accepted it.
But I have had people (including staff people with a good deal of power over me) try to force me to do something that like… they can temporarily make it look as if I am “getting better” by encouraging me to go without some sort of assistive device I normally use. (Depends which one though, some of them I just can’t go without for any length of time.) And then they get all enthusiastic about how much they’ve helped me “get better”, and then get a giant ego trip about it. And then the period I can do this in ends, sometimes by a stressful event that uses all my spoons for something else, sometimes just by the gradual using up of spoons that is overdoing myself. And then I am “worse” again, and they don’t get it. Ever. One time, this one staff woman made me go without Depends, and was so excited she’d done this. She got another client of hers, who has severe CP, to walk a few steps and was excited about that. But I went back rapidly to needing Depends and he went back rapidly to needing his wheelchair, and I think both of us were less bothered about this fact than she was.
If it’s a friend, such people (if they refuse to get a clue) often rapidly become either not a friend, or not people I actually talk to or spend time with. Because just dealing with that expectation causes stress and therefore loss of spoons and I can’t afford that.
It’s also a slap in the face because it shows they conceive of my impairments (which like it or not are a large part of my life) very differently than I do. In ways that are insulting and patronizing. And I don’t have the energy for fighting this in my friends all the time, so I just don’t interact with them if they’re going to be like that.
Amanda´s last [type] ..Paintings of language overload and its opposite
I’m probably about as good as I’m ever going to get, right at his moment. I may be able to get a little “Better” and I could definitely go downhill but if this is as good as I can get, then I think I’m okay with that.
Right now I’m in a position where my pain is pretty well managed. It’s not gone 100% but a lot of the time it’s very low or absent, and I know some things I can try in order to rein it in if it gets real bad. I can do some stuff now that I couldn’t do a few years ago. But I still have some maintenance that I need to do in order to keep doing such things and some activities will remain out of reach.
But my family members, for them it’s more black and white. Either I’m all better or I’m not, so they might say to me stuff like, “I thought you were all better!” Well, yes… and no. Uh it depends on what you mean by “Better.”
Thing is, I know the pain could come back at any time. Don’t know what caused it in the first place, after all, so we can’t really “Cure” what we can’t find. I don’t want it to come back. But it could. So what then? Was I ever really “Better?”
I’m lucky in that with my emotional disorders, from the start I thought that getting better meant feeling better and being less symptomatic. I always assumed that medication, which has for the most part worked well for me, and talk therapy would be part of that process and part of my life long-term.
The physical stuff, though…I’m still learning that ‘getting better’ does not mean ‘being able to act like ABs’. I think I’ve mostly got the hang of that now, after 3 years of running myself into brick walls over and over and over. I’ve had to accept that my life doesn’t look like it used to, or like theirs, and that’s okay. Right now, I hope ‘getting better’ will mean getting back to being able to dance a little. I’m working on not expecting to go back to dancing at a low competitive level, which feels a little silly since I know I can’t do the 10-15 hours a week I needed for that. I know I probably only have an hour or two a week. And yet, I yearn to get back to that level of flowing, that level of precision, that level of automatic muscle memory that made me a surprisingly good dancer. *sigh* One more repitition of ‘that isn’t what getting better means for you’. This one I find particularly disheartening, though, to the point where I sometimes wonder if it’s worth trying to get back into dancing at all, even though I sometimes feel like all of my being craves it.
~Kali
thank you for this post. it is beautifully articulated and so important.
i think an alternative to the “getting better” paradigm was one of the first personal benefits i got from the disability rights movement. my mental disorder(s) are supposed to be “curable” – and all my therapists still think of things in those terms.
i have gotten a lot of hope from the idea that i might not “get better” – from realizing that i will probably always have social anxiety, and it will probably always be pretty severe – realizing that avoiding many social situations might be a valid *lifelong* approach. that i will never be able to work full-time. it feels like permission. it even makes it easier to be as functional as i *can* be, if i don’t *have* to be.
i guess many TAB people would find it strange to get hope out of letting go of being cured. but it really lets me appreciate what i do have, without feeling like i need to push for more.
of course, putting all these wonderful ideas into practice, and learning that it’s ok not to do something or ok to take a break, is another lifelong practice. good thing i’ve got time…
Echoing the “thank yous,” abby jean. I’m adjusting to coming out of either a six-month major depressive episode (MDE), a three-month break, and then a nine-month (MDE) or a single eighteen-month-long MDE–I tend to look at it as the latter. In the early stages of the MDE I was diagnosed with generalized anxiety disorder–and on the one hand, it was such a relief to realize that I wasn’t inherently defective, that the feelings I’ve been having since I was old enough to think in words happen to other people, too. On the other hand, it means accepting that according to the medical community, I’m always going to be ill. I’d long ago accepted that I’m not normal, but it’s different to discover that my brand of not-normal has a name with capitalized letters.
And that’s an issue I’m really only starting to deal with now, slowly. Getting better means not hiding under my bed because if I see my pills, I will take all of them at once. And I’m there. Getting better means not compulsively checking if my keys are in my backpack even though I distinctly remember putting them there, and I’m there. Getting better means striking a balance between accepting the times when GAD makes things difficult while also recognizing that I have tools to manage the difficulty it creates–not letting it stop me from doing things I really want to do, but also not beating myself up if that ends up being the case. That’s the place I’m working on getting to now.