Monday, March 30, 2015

A New Normal--Or Is It?

In a previous post, I mentioned that the fatigue that held me captive for most of 2014 should have scared me more than it did. This is one hundred percent the case. Recently, a friend--who is a nursing student--mentioned that the time I got sick after walking the five blocks from CVS to Panera definitely concerned her. I remember believing that day was a fairly good one, but now, from a place where I am physically better, I wonder why I wasn't seriously freaked by that occurrence--and the myriad of similar ones I can point to over the past eighteen months or so.

Let me be clear: I was not okay with the turn my health had taken. I was exhausted, miserable, and demoralized. I was also resigned. The severity of my disability has fluctuated over time; I'd had multiple surgeries--and a couple of post-op infections; I had mild, but chronic, depression and my meds needed adjustment; my back still hurt, which had me on pain meds. All of this is to say, I had excuses. They're all valid, as is my most recent explanation--after my last surgery in November, we discovered I'd become pretty severely anemic. No one knows when it happened, thanks to a mix-up regarding my pre-op labs prior to my past three surgeries. Since I began treating that, and got my other meds fixed, I've felt much better. None of these excuses explain my resignation. I accepted the situation as my new normal--even after a period of sickness caused by running out of my anti-depressants after which I told myself to never accept sudden new symptoms as "normal." 

The fatigue wasn't new, after all. I've always had less stamina than most people. Always needed more sleep. Always had some insomnia. But during this period, I exaggerated my past issues in my mind. Really, if they had been anywhere near as severe, I would not have been able to make it through grad school. On the Panera day, I told myself that of course I got tired walking, I wasn't doing much of it. Never mind that in the past I could go from zero-to-trapsing around a new city in a couple of days. It would cause me to sleep later the next day, sure, but not to be afraid I'd pass out within the next three minutes. That was not a thing I should have accepted. Inability to function to that degree was not an okay thing. And even if it had been something untreatable, a new facet to my condition, I should have questioned it more. I know that on this side. Will I know that if my iron levels drop again?

I can only hope so.

This post doesn't have a firm message of: this is what I learned, or this is what you can do, except that you should never accept being miserable as a "new normal." Something is causing that misery, be it physical, mental, or circumstantial, and you are allowed to fight like hell to determine and eliminate that thing. It may take time. It may not be something you can change--but at least you can identify it. That's step one in making things better.

And you don't have to do it alone. If you have a good day, tell a friend Hey, if I try to pretend a bad day is the best things can get, remind me of this. If you haven't had a good day in a long time, hold up one from your past as an example. You may not be able to get to that place again, but it doesn't mean you can't get close. Every time you think something is normal, ask this question: But can it be better? 

It's okay if the answer is no. But if it's yes, then keep asking questions. That may be all you can do, but hope is so much better than resignation.

Wednesday, March 25, 2015

A Quote Out of Context

Many of you will be familiar with Stella Young's TEDTalk. In it, she introduces the idea of inspiration porn, which is--strictly speaking--a method of using disability in media to encourage the non-disabled, rather than to reflect the true lives of the disabled. Stella's talk is wonderfully articulate, and though she passed away at the end of last year, I imagine her ideas will be a part of the conversation in regards to disability in media for some time to come.

However, always a however, there is a quote from her talk that takes on a different meaning if you analyze it from the point of view of a person with certain types of disabilities, and to apply her concepts correctly, one must do this. Here is the quote: "I want to live in a world where a 15-year-old girl sitting in her bedroom watching "Buffy the Vampire Slayer" isn't referred to as achieving anything because she's doing it sitting down." In context, Young is making the incredibly valid point that to get out of bed and watch Buffy isn't an achievement in and of itself, even if you are a person who uses a wheelchair. What she doesn't acknowledge is that for some people getting out of bed and into a chair (wheels or otherwise) can be a big deal--to them

Let's make this personal. In October of 2013, I had major spinal surgery to correct a severe scoliosis curve. Since then, I've had five surgeries, developed anemia that required a transfusion to correct, spent about three months in the hospital overall, and dealt with the pain/fatigue/depression that's just par for the course of my disabled life. Prior to all that, I was very much the type of disabled person who believed I didn't deserve a medal for getting out of bed and growing grocery shopping, because at the time that wasn't an achievement. Finishing grad school with two Master's degrees and chronic back pain, well, yeah, that was a big deal, but it wasn't something no one else does. In the scheme of things, it didn't seem like a big deal. 

And then came the summer and fall of 2013, along with the odyssey that followed. Suddenly my personal bar fell. It fell far. Pajama days became pajama weeks. At night, I undulated between bouts of severe insomnia and sleeping for twelve hours at a time. I couldn't get out of bed before ten for most of 2014. I had a period wherein any exertion--walking a few blocks, for instance--caused exhaustion to the point of nausea. It scared my roommates. It should have scared me more than it did--but my own skewed reaction is another post in and of itself. Most days, I got to the couch, and that was it. I subsisted on bananas, yogurt, and delivery sushi. Generally, I read, but there were days when I'd wake up and realize I hadn't consumed a real book in weeks. What had I been doing? Trawling the internet, mostly. Sleeping, in between doctor's appointments. Rewatching web series. Laying on the couch for all of it.

During that period, days where I sat up to watch Buffy--figuratively, and literally--were good ones. I'm coming out of it now. I get up every day. Shower. Eat food on a regular basis. I have energy. Yesterday, I bragged to my friends that I woke before 8:30, dressed without stopping to rest mid-shoe tie, put on make-up, and went to meet a friend at Panera to work on a project. They were duly impressed, because they understood that this was an achievement for me--but not one that I deserve accolades for. It is an achievement because it means that my body is recovering enough for me to do the things I would do on a regular basis if I were physically able. There are certain milestones of physical ability that are a result of hard work and dedication. A person with cerebral palsy might build up their muscles to be able to use a walker for longer periods of time. This is a matter of making a goal and working toward it. It is an achievement that deserves attention, sure. But even that is not something that a non-disabled person should use as an "if they can, then I can," because this achievement is not about the non-disabled person. It's something that is deeply personal to the disabled person, who would be doing this task without thinking if there body would only cooperate with their mind. 

That's the thing. Many of the achievements that get held up as so-called inspiration porn are merely a disabled person doing something that a non-disabled person does without thinking. It is a body allowing you to do something simple, something required to move on with your day and then take on the tasks that you actually want to do--that you would be doing already, if only your body would cooperate. And this is where I come into conflict with the social model of disability that Young is advocating--consciously or not--it is the view held by some folks that disability would not be an issue if only society did not put up roadblocks for the disabled. Most of the changes put into place by the ADA are meant to eliminate these obstacles. However, for some, no conceivable societal changes would change the fact that the body--be it the visible, physical body, or the invisible workings of the brain--are keeping us from achieving the tasks our mind is more than willing to do--tasks that the majority of people do without consideration. And when those tasks become possible, well, it is a big deal. But it is not a big deal that the non-disabled get to claim. Rather, it is a personal win in the battle between desire and action that many people with disabilities fight on a daily, if not hourly basis. 

So, no, a fifteen-year-old girl does not deserve a medal for sitting in her room watching Buffy just because she's sitting in a chair. However, if she was unable to sit in that chair yesterday, though she desperately wanted to, she is allowed to feel that she has achieved something--something nobody, not even hers, can take away.