by Jenny Blaser
This is my most recent narrative. It is one that I am still living and experiencing in a number of ways. It is a story that undoubtedly will shape the person who I currently am and define how I continue to grow and live my life. I want to share it because it is a story not often told – one of disability, sickness, pain, support, and change. This is a story of forever shifting needs and mobility and how I have come to experience it as a Deaf, Disabled, Queer, young Woman. I hope to use my story and my experiences to open up a dialogue about support systems, internalization, mourning, pain, institutionalization and privilege within marginalization and oppressive systems.
The story starts with me sitting in exam room two. It’s my family doctor’s office — a monotonous space that I have come to know quite well. The nurse is across from me talking me through the injection process. I am paying close attention, cross referencing what she says to the information I remember from the video I had watched. I am acutely aware that I am expected to do this to myself someday soon. My guide dog, Penny, has her head on my lap and I stroke her to help ease my anxiety. The nurse picks up the small insulin needle and explains to me how you pull air into the syringe, inject into the vial, and then draw up the solution into the syringe. The solution in question is methotrexate — a chemotherapy drug used in low doses to treat rheumatologic diseases. This was my next step towards achieving Behcet’s disease remission. Or so I thought.
Before we keep going with this one, you may want a bit of background knowledge …
Behcet’s disease is a rare autoimmune vasculitis that affects less than one in 1 million in North America. The main symptoms are oral and genital ulcers, eye inflammation, skin lesions, G.I. symptoms similar to that of Crohn’s disease, joint symptoms, and general chronic pain. My diagnosis of Behcet’s disease came after many years of searching for the cause of my bizarre constellation of symptoms including one particularly horrible year misdiagnosed with Crohn’s. Although I started to display symptoms at the age of about eight, it took until I was 22 to finally get a diagnosis. This was only after lots of time spent with a very dedicated family doctor and a motivated rheumatologist. I am one of the lucky ones because I was diagnosed. There are many others who will never see diagnosis or treatment.
Now back to where we left off …
I watch as the nurse quickly darts the needle into my leg, and pushes the solution in. I smile and exclaim “I did it!” while turning to beam at my friend who is there for moral support. That was it! Or so I thought.
As with all new medications, I am asked to wait around for observation. I have a history of severe reactions to an array of drugs which has led us to always err on the side of caution. The first 30 minutes or so are fine. I am aware, chatting, and still thinking “this is it! This is the drug that will bring my remission!” And then I start to feel funny. Really funny. I am lightheaded and the world is spinning. I tell the nurse, who brings the garbage can closer, and as I lean over it — retching and vomiting — I know that this is not going to be good.
I move to the edge of my wheelchair for easier access to my puke receptacle and the first spasm hits. The muscles in my back contract and contort, sending me flying forwards and my wheelchair flying backwards. I barely have time to brace myself before I hit the floor and now I am on the cold, hard ground of the doctor’s office. Surprisingly, it is a familiar place where I have found myself a few times before.
Slowly but surely, spasms take control. What started in my back is now traveling down to my legs and into my arms. Before I know it, I am writhing around on the ground, unable to control any muscle in my body, and telling the nurse: “I’m fine! Just call Shoshana to come get me and drive my car home. This happened with morphine too!”
[Part 2 will follow next Wednesday.]
Jenny Blaser is a young, Deaf and Disabled Queer who loves all things pink and butterflies. She is a chronic story teller who uses narrative as an act of resistance and reclamation of identity and experience. To learn more or to reach Jenny, check out http://fiestydeafanddisabled.wordpress.com/