Loss, longing, and love (part one)

It’s been a difficult week, as part of a difficult academic year, as a piece of a difficult series of months. In spite of this or perhaps because of it, the universe was kind enough to remind me that I am doing good work, and for that I’m very thankful. In turn, this has made me want to write things. In the interest of space, I have decided to create a series of posts on the same general topic as to avoid writing a magnum opus.

Tuesday was my two month post-op appointment. My surgeon gave me good news: the bones are fused, the incisions are healing nicely, and I can resume “normal” activity using pain as my guide. What I did not expect however was the fact that it can take up to a year post-surgery for my body to return back to normal; meaning, I can still have pain and swelling until November.

I still wake up every morning in pain, and still require far more pain killers than I (and probably my liver) would like.  Putting on pants still hurts every single morning, and I have new pain where the steel plate was screwed to my metacarpals. I am (still?) trying to figure out what my arm and hand can do and often find myself in situations where I try to do something I could in October or last November, and not understand why my body won’t cooperate. For example, today, when cleaning my tub, I tried to catch a falling bottle of shampoo. I couldn’t do it. Add it to the list.

I am mourning my old (pre-December 2013 [pre-August 2010? {pre-2006? I don’t even know anymore}]) body. I miss the times where I did not have to consciously think about how I was going to complete a task because I now have to do it differently. It is much harder for me to adapt as an adult than it was when I was a teenager, child, or baby. I am looking forward to the time when I am capable of handling a normal work week, where I am not stuck in this liminial position between able-bodied and dis/abled. There are parts of my body that I still appreciate–that I heal relatively quickly and build muscle mass easily for example–but it’s been eighteen months of me going through stuff that no one else I know or have been able to find is or has gone through.

The average age of someone who goes through a full wrist fusion seems to be somewhere between 32 and 49, and participants are mostly male.  Pain relief is not guaranteed after the surgery, especially with “heavy” use of the arm and/or hand.  The metal plates used to fuse the wrist are known to cause irritation–something I am fully aware of because of the problems I have with my ulnar plate–and thus usually have to be surgically removed.  This means that November’s surgery will not be my last. It looks like at some point in the (perhaps not-too-distant) future I will have an eighth surgery to remove both of my metal plates and all of the screws. Given how ridiculously painful this last surgery was, I suppose the best part of this hypothetical future surgery will that I will be able to add to the tattoo once again. If this surgery doesn’t work–meaning I have to rely on narcotics to “function–there are no other options for me. As my surgeon said, I’ve reached the end of the algorithm.

This is why, random people on the internet, I am in the third year of my program and I have maybe 10% of my candidacy draft completed, when I “finished” my classes in December 2013 (technically it was April 2014 because I needed extensions on my final papers because of last year’s surgery and subsequent recovery, but hey, who is not remembering this bitterly?). I know I have a good project, I know I am capable of doing the research, I know I can write well, I believe the work is meaningful and important, and it really feels like this is the work I am meant to do. But it would be a hell of a lot easier if my body would cooperate.

There is one thing I am going to do for me; maybe it is actually something I have to do for me.  Sometime in the next two weeks or so I will find out if I am presenting a particular paper at Congress in the spring.  This paper has nothing to do with any of the work I will be completing for candidacy, or have completed as part of my coursework (sorry MS-H…). It is simply something I need to do for me: I need to get syndactyly out of the pathologized world of medicine, if even just once. I need to finish, and publish academically, my deformography (a portmanteau I’ve taken from Marilyn Manson and have assumed means a combination of deformity and autobiography). I have about 28 years of experiences in need of catharsis, many of which are the result of interactions between my peers and teachers in my K-12 education (reason #1 why I hate the K-12 education systems that exist in Canada: dealing with a long list of ableist bullshit).  I want to use this process–of writing, re-writing, re-re-writing, and submission–as a way for me to become more comfortable in my own skin.

As much as I have modified my body in non-permanent (e.g. cutting, dying, or shaving hair), semi-permanent (e.g. piercings), and permanent (e.g. tattoos) ways over the years, and as much as I enjoy those processes, I cannot change the fact that I have syndactyly. Despite all the pain it has caused, physical and emotional, it will always be a part of me (and maybe my genes? Need to figure that one out at some point). I need to learn to love myself because of it.

This entry was posted in Diss/ability, Personal, PhDing (in doubt) and tagged , , , , , , , , . Bookmark the permalink.

3 Responses to Loss, longing, and love (part one)

  1. Pingback: post. thirty six. (loss, longing, and love [part two]). | danielle dissertates

  2. Pingback: post. thirty six. (or longing, loss, and love [part three]). | danielle dissertates

  3. Pingback: Representation is Important | danielle dissertates

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