Twenty/20

“Twenty/20″

I like numbers. I like what they tell us, what they signify, their symmetry, and how they have occupied my time over the years. Dates and anniversaries are the epitome of the power of numbers for me. I’m one of those people who can tell you the dates of almost any significant thing that has happened in my life, and even some of the not so significant things, or at least they are not traditionally significant dates but are mostly important emotional dates for me. I started playing with numbers in my room many years ago when I was very ill. I could barely keep ice chips down and needed distractions. The digital clock provided a quick answer. I arranged the numbers to get to the lowest number to which they could all add. If it was 11:24, I would take the first two numbers and add them giving me 224. Then I added the first two remaining numbers to get 44, and finally I was left with 8. Eventually, I realized that 9 was a significant number. For instance, if it was 9:21, I would get 111, then 21, and then 3, such that if 9 was included in a combination, whatever numbers besides 9 added up to the final number. Even if it was 8:21, I got 101 and then 11, and finally, 2 because 8 and 1 added up to 9. Get it? Good. It was pretty fun for a nerd like me. I alphabetized the letters of words in my head as well. I still do this. I used to like it when they came out with an even numbers of letters, but now I prefer there to be a flow of letters rather than a specific number. This one is much harder to explain in writing, so I’ll leave you with the simple understanding that numbers, symmetry, and significance are very important in my mind, heart, and soul.

Before my number and letter tricks, though, came a couple of significant dates that have followed me for 20 years now. Today, September 30, 2010, marks the 20th anniversary of the onset of my paralysis due to transverse myelitis (TM). It is beyond significant to me. My life and my family’s lives changed in a matter of hours, or minutes really. The dull back pain that held on for a couple of hours changed within seconds to excruciating and then within a few more seconds faded into numbness and tingling and a few minutes later into paralysis. Twenty-three days later, on October 22, 1990, I was admitted to Shepherd Center for over three months of rehabilitation.

Many anniversaries have passed through the years. Many have been insignificant. Not that I have ever forgotten them – I never forget, even if I never say a word about them, I always remember. It’s my thing, the dates and anniversaries and numbers. I wonder about the people who do not remember the date of their injury or sudden onset of disability. I have been asked by medical personnel many times for my date of injury. I always know it, and I always clarify that it is a date of onset of transverse myelitis. It’s kind of fun, in a strange way, to be the outlier. I have plenty of experience being an outlier. TM was not my first and it certainly hasn’t been my last.

My thirteenth anniversary was significant, probably the first special anniversary. I had just graduated from college a few months prior and had unmasked myself in ways I never thought possible. I was scared and felt safe to confess my fears, my young misgivings about life as a disabled adult unsure of almost anything, unsure for the first time in a long time and unavoidably confronting adulthood for the first time. I had just started a very part-time job and had lots and lots of time on my hands to ponder my identity and my future. College had been a five-year high, but what came later was a roller coaster of unresolved and newly appearing issues. My emotions ran high, and it seemed okay to talk about my anniversary and my reality of disability for the first time. It was the beginning of my disabled identity, even though I didn’t know it at the time.

My seventeenth anniversary was filled with anger. Disability had again figured prominently in my life but in a wholly negative and terrorizing manner. I was low, had been pushed and shoved over and over again too far down underground, in a deep hole, tired of fighting to climb up just far enough to fall down harder the next time. I felt alone and nothing soothed me.

By pure coincidence, eighteen and nineteen were significant on October 22 instead of September 30. On October 22, 2008, the 18th anniversary of my Shepherd rehab admission, I successfully defended my Master’s thesis on disability and sexuality issues, a goal I still cannot believe I attained. Then, on the 19th anniversary of my Shepherd admission, I spoke to a college class for the umteenth time about my life pre- and post-paralysis. They were empowering anniversaries, dates significant because of my disability, and dates symbolizing my life lived in tune with, in concert with, in harmony with, in celebration of disability and who it has made me and how I grow with and do good because of my disability.

Now year twenty feels different. Disability has changed me and is part of my every breath and my heart, soul, and whole being. This anniversary is one I could have never imagined. The word I keep seeing is possible. It feels possible to be me. It feels possible to come out of year seventeen and everything before and after it and feel good, feel empowered and full of life and love. It feels possible to dream, and my dreams are coming true. It feels possible to advocate for myself and others, to be a voice of reason and calm when things seem horrible. It feels possible to tell the naysayers I come across in the medical field to listen to me, that I am in charge of my body, and I know my body better than they ever will. My fears and anger at the system persist, but my success in the face of near impossibility temper those fears and that anger enough to keep me going most of the time.

I have always been intensely aware of my body, pre- and post-disability. My awareness of my post-disability body is far more nuanced and mature. The past twenty years have been filled with new presentations of my body to new people. Sometimes I catch myself and remember that I am the one who is not like the others, but most of the time I zoom around with an average amount of confidence. The past few weeks sitting in front of my class and zooming around campus have reawakened a more intense awareness of my post-disability body. I caught a glimpse of myself in a mirror the other day before class and remembered those things, those markers of halted development from my flat chest to the curvature that remains amidst the metal rods in my back, that I have taken for granted as normal for me but abnormal to new folks. I realized that class after class I present a disabled person to a small sea of faces pointed toward me. I talk about examples of disability and my own life when illustrating points. I realized how far I have come and how far we have all come. I realized how raw it still feels sometimes to be different.

I have told “my story,” as most people like to call it, many times to classes or groups when I do a presentation on disability awareness. The human service worker and sociologist in me likes to disclose my social location. I give the short version because that is all most people really need or can digest at a time. It was all I really kept in my own mind, heart, and soul for many years. Until two or three years ago, that is. I was “rehearsing” for one of my talks and slowed down for a moment. I moved from my point of view and visited what might have been my parents’ points of view in a way I could not have done previously. I was humbled. What could they have truly thought and felt during those first few moments and then during those first few months and years? How would I have felt if I had been them? What about my little brothers? Twenty years allow for these sorts of perspectives.

Twenty has not been my only significant number this year. I turned 30 earlier this year, and I have been living in Marietta for 15 years now, having spent half of my life here and the other half of it in Savannah. I finally won my battle with weight after twenty years of gut wars, a feat everyone thought impossible and for which no one had a winning plan of attack until now.

When I was much younger, I could never have imagined my life the way it has unfolded. Never. I only had my family, friends, books, and television as guides. None could have predicted a disabled life or shown me how to live well with disability before we had to learn together. But we have learned. Well, television has a ways to go, but my family, friends, some books, and I have made tremendous strides.

My family does not generally mention my anniversaries; maybe they don’t always remember. In fact, my dad and grandma still say, “when Laura got sick,” taking a largely medicalized view as is typical of their generations. That’s okay. I know what twenty years means to me. Twenty years of self-discovery, battles, fears, joy, embraces, incredibly significant people, and love.

11 Comment(s)

  1. Laura, This is a powerful and awesome piece of writing! I hope it is picked up somehow for wider publication. I can actually envision a more in-depth series of pieces –more specific about your experiences leading up to the 17th anniversary, and those with medical protocols.

    One word I especially liked was “unmasking” in reference to your disability identity.

    I could go on and on with comments, but for now will simply thank you for sharing this on your 20th anniversary–Namaste.

    Carolyn Hitt | Sep 30, 2010 | Reply

  2. Thank you so much, Carolyn! Oh, yes, and I could go on and on, too.

    Namaste….

    Laura | Sep 30, 2010 | Reply

  3. I’ve been really looking forward to this, and so enjoyed it. I liked how you gave us a sense of the importance of numbers first, then expanded into talking about certain anniversaries, and then talked about this one, the 20th. The part I loved best was the emphasis on the word “possible”, and I so appreciated how you elaborated on how you now applied that word in ways you never would have thought, uh, possible before. It was moving and thrilling. Hurrah to you on this momentous anniversary – and on seeing all that’s possible.

    Rachel Simon | Sep 30, 2010 | Reply

  4. Laura,
    Could you specify what you mean when you say “television has a ways to go?” I would very much enjoy reading your sentiments and vision for what you would expect the landscape of Disability media to look like in the future.
    I love reading your work, and believe you have the makings of a powerful memoir/narrative video! I do not believe it, I know it, and am very much looking forward to reading it. Thank you for your candor, illuminating activism, and poesy!
    Alex.

    Alex Kaminsky | Sep 30, 2010 | Reply

  5. Rachel – thank you!! What wonderful feedback everyone is providing! Your support means so much and makes so much more seem possible.

    Alex – thanks for your kind words. I will write more about TV soon. My mind is exhausted tonight though ;)

    Laura | Sep 30, 2010 | Reply

  6. Laura, I was profoundly touched by your writing piece. You are more “abled” than most and definitely possess more strength and tenacity than almost anyone I know. Continue with your work and your writing. As one who remembers “before”, I’m proud to know you now. Blessings to you always.
    Iris

    Iris Sims | Oct 1, 2010 | Reply

  7. Thank you so much, Iris, you are so sweet! All my best to you and the rest of the Lanier crowd!

    Laura | Oct 1, 2010 | Reply

  8. Laura,
    I found your blog a few months ago through my travels on Google. Since then I can’t tell you how many times I read it and thought how did she know what I was thinking? I have had cerebral palsy my entire life so there is no anniversary for me to acknowledge but I’ve still had to come to terms with being disabled. Reading Lefty by Default reminds me of what is possible in my own life and to also to acknowledge the gifts I have received simply because I have CP.

    This was a long-winded way of saying thank you for letting us into your life in general but specifically on your 20th anniversary.

    Margie | Oct 3, 2010 | Reply

  9. Oh, thank you, Margie! The internet is an amazing connector! Yes, we have received so many gifts from our lives with disability. Keep on celebrating and finding the possible!

    Laura | Oct 3, 2010 | Reply

  10. Laura, what a brave post. I especially loved the line, “I know what twenty years means to me. Twenty years of self-discovery, battles, fears, joy, embraces, incredibly significant people, and love.”
    There’s such conviction + strength in it, and also, in you.

    Caroline McGraw / A Wish Come Clear | Jun 25, 2011 | Reply

  11. Thank you, Caroline, and thanks for visiting! That’s one of my favorite parts as well. We are both doing good work.

    Laura | Jun 25, 2011 | Reply

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