Perspectives on Being Newly Diagnosed

By GG deFiebre, SRNA’s Director of Research and Programs

I was diagnosed with transverse myelitis over 12 years ago, and if you had told me while I was in my hospital bed that a decade in the future, a significant and meaningful part of my job would involve speaking with people who are newly diagnosed with transverse myelitis or related conditions, I would’ve laughed at you. I probably would’ve cried too. I expected myself to be up and walking around and living the life that I had envisioned for my future self. I didn’t expect to remain a quadriplegic and use a wheelchair for the rest of my life. My rehabilitation hospital tried to set up meetings between me and other people with spinal cord injuries, and I remember being so uncomfortable and uneasy about meeting them. I didn’t identify as disabled. I didn’t identify as a wheelchair user. I didn’t want to be “one of those people.”

Looking back now, I cringe at my internalized ableism and my rejection of other disabled people. I am so sad that I thought those things. I also see others experience these emotions in my interactions with them when they are newly diagnosed. I have had people tell me they’d rather be dead than be in a wheelchair for the rest of their life. Statements like this punch me in the gut. They sting and burn, and for a moment, make me question my worth as a disabled person. But I also understand where they are coming from. I understand why they don’t want this diagnosis. The world isn’t built for disabled people, and we are taught from a young age that our lives are not worth the same as non-disabled people. Even though I understand, it doesn’t make those statements right or okay. I usually push back, holding back how hurt I feel, but also keeping in mind that the place they are in to make those hurtful statements is a raw and painful place, and that I have been in that place too. But I do push back, because I know that my life is worth living, wheelchair or not, disabled or not, and that theirs is too, if that’s how their diagnosis progresses.

One of the more difficult conversations I have on the phone with newly diagnosed people is when I reveal that I was diagnosed with transverse myelitis in 2009, and the person on the phone responds almost excitedly, likely assuming that I recovered fully and that I am “back to normal,” and asks “How are you doing now? Did you recover?”

I basically have a script now that I employ – words I have said over and over again in these situations. I, of course, must tell them the truth – that I didn’t ever regain the ability to walk, that I use a wheelchair, and that I am a quadriplegic. But I also don’t want them to assume this is their trajectory. Many people with TM recover far more than I did. I want to be honest, but not discourage them, but also reiterate my worth as a human being with a disability. Remind them that I and other disabled people still lead meaningful lives even though the world is significantly more challenging to navigate now.

My response typically goes something like this, and some of you reading this may have heard a version of these words while on the phone with me: “Well, I was pretty severely impacted by transverse myelitis. I basically became paralyzed from the chest down in a few hours and didn’t really recover as well as I had expected. Most people recover more than I do. I am still a quadriplegic and use a wheelchair.” They usually follow with something like “Oh… I am so sorry to hear that.” And I respond with something like “There is nothing to apologize for! Even though I may be what some people might consider a ‘worst case scenario,’ I have adapted and have amazing people in my life and in many ways, I am happier than I was before TM. Life may be more challenging in some ways due to the inaccessibility of the world and people’s perceptions, and I certainly have bad days, but overall, I am quite grateful for the life I have.”

In these conversations, I am always trying to find the balance between providing hope, help, and also, reiterating that disabled people like me deserve to exist and be valued. I haven’t fully figured it out yet, but I’ll keep trying.