My Time at Camp, a Retrospective

By Landy Thomas

Hi, I’m Landy Thomas. Some of you may know me, some of you may not. I used to go by Ireland. I have had Aquaporin-4 positive NMOSD since I was 6 years old, which is incredibly rare, as that disorder has an average age of onset of 41. All this to say, I was desperately in need of support, and found that support through SRNA’s Annual Quality of Life Family Camp, which I attended from age 11 onward.  

At age six, I developed a longitudinally extensive spinal cord lesion which greatly impacted my mobility. I could no longer stand for long periods of time, as I had developed limb weakness and fiery neuropathic pain in my legs. When my mom and I would go to the grocery store, we would walk for a bit and then I would go and sit on the grimy floor of the store, while my mother, perplexed, would have to ask me to stand and keep walking. I could, but was so pained, and had no real words to articulate what was happening. I was all but trapped in a child’s body with a child’s mind and could not get the help I needed. 

It was because of my inability to verbalize that my pediatrician disregarded my case. When I tried to tell her what was happening to me, the fiery pain, the weakness, the excruciating burning on my spine that would arise whenever a new lesion would form—she said all of that sounded like growing pains, or more embarrassingly, constipation. She did no testing and suggested I try eating prunes. 

My condition worsened over the next two years because my pediatrician did not believe me and I wound up becoming blind in my right eye overnight. Then, and only then, were we believed by doctors. I was eight, and with a little time for blood work to come back, my family and I knew what I had: NMOSD. 

I was in too much pain and I was scared and I was so very alone. I could not sleep well at all in the hospital—I’d wake at the slightest sound, at the quietest movement. The blood pressure cuff, the beeping of all my machines incited me, terrified me. Even my child mind was flight-or-fighting. It was like a two week long panic attack, eyes scanning the room for a threat, but my eyes could only find one when I looked in the mirror. This body, me, my own enemy.  

Sleeplessness didn’t help my case. I recall bawling my eyes out, begging the nurses to just leave me alone. Getting checked on every 30 minutes, every hour for the thousand little tests was killing my spirit—I hadn’t slept for longer than 20 minute periods in five or six days, and I became like a small animal, unable to do anything but beg them to stop trying to help me. But when you’re in the pediatric intensive care unit, you are able to die at any point, and so this maddening monitoring is a necessary practice. 

I survived. Somehow, someway, I made it—despite the rarity of the condition attacking my tiny body, despite the doctors that did not believe I had anything more than growing pains, I made it through. It was not a battle—I can’t describe it as that. I did not fight my illness, and I am no warrior. Instead, if anything, I felt as though I was a building burnt to the ground. Nothing felt the same—my body was different, my life was different, and everyone treated me different. My family all saw me as fragile—and people at school hurt me, calling me fat, running away from me knowing that with my disability I couldn’t keep up, and just, in every way, misunderstanding who I was now as a person and how to treat someone who just went through one of the worst things a child can go through.  

Family can only do so much. When again and again the people your age reject you, you can’t help but feel like a monster. Being ostracized was in some ways as bad as being hospitalized—it just confirmed what I feared was true, that there really was nothing left of who I was before I experienced symptoms of NMOSD.  

But when a building burns down, what do you do? You rebuild. After everything happens, after paralysis and more blindness and fatigue and terrible pain remains, I pull apart what’s left of the debris, I sweep the ash. I’m shocked to find the foundation is still there of the girl I was—something to build from, something to remember it all by.  

And so, I keep living. I try to keep my head up, even when tears are rolling down my cheeks. I’m alive and I’m still scared and I’m so so young and I’m incredibly lonely. Building a house by yourself is all but impossible—most days I’d spend sitting in the ash. But what’s the solution?