The day started off like any typical Saturday. It was April, so preparing for finals week was on my mind. Little did I know, however, it would be the last normal day of my life for quite some time. My name is David, and when I was 22, I was diagnosed with Transverse Myelitis – a neurological condition that damaged the insulation around my nerves, leaving me unable to walk or do much of anything else. Here’s what it taught me.
- Don’t Panic
Turns out that the ability to get out of bed in the morning is something you should never take for granted.
I had been feeling a bit under the weather that week, but I didn’t think much of it. My head was a little sore and I was running a slight fever, but I figured it was just a bug or something that I would fight off in a few days. Or maybe it was just stress from finals week coming up. But then, I awakened in the middle of the night with my back killing me. I knew immediately that something was very wrong, so I made my way down the stairs as the pain started creeping down my legs. I woke up my parents and called 911. As we waited for the ambulance and the pain in my legs intensified, I breathed deeply, and tried to stay calm.
- Trust Your Gut
My legs weren’t working, but thankfully, the ambulance was.
After the ambulance arrived, the paramedics told me they were taking me to the small local clinic that I had stopped by a few days earlier, hoping to get something to alleviate my headache and fever. The doctor there had told me it was probably just the flu and there was nothing they could do for me other than prescribe fluids and bedrest. I explained this to the driver, knowing this new development was something serious, but the staff was adamant about taking me back there. By this point, I was feeling even worse, so I persisted, and asked the paramedics to take me to the Cleveland Clinic, which was equipped to treat a wider variety of ailments. After some polite but firm lobbying, the staff relented, and we headed downtown.
- Keep Your Loved Ones Near
My girlfriend, Catie, stayed by my side the entire time.
We arrived at the Clinic and I was laid up in a bed where I was poked with more needles than I think I had ever seen before in my life. Still, even though my legs had gone from working normally to totally lifeless in a matter of hours, there’s nothing like being in an emergency room to keep things in perspective. My mom and dad never left my side for more than a few minutes for that entire day, and plenty of close friends and classmates came down to see me and keep me company throughout the week I spent in that bed. I don’t know how I could’ve gotten through that day without them, especially after the doctor came back with news that I never could’ve seen coming just 24 hours earlier.
- Keep Yourself Informed, But Don’t Overthink
Knowledge is power, but overthinking can burn you out.
That afternoon, the doctor walked into my little space and closed the curtain behind me with a serious look on his face. He looked me in the eye and gave me the news – I had Transverse Myelitis. “Will I ever walk again?”, I immediately asked. He simply responded, “I don’t know.” For what seemed like forever, silence hung in the air. “Everybody is different, but it could take years to even get feeling back. I just don’t know.” After he left, I immediately grabbed the phone off of my bedside and started googling everything I could. The dozens of sources I read echoed what the doctor had said – some patients get back to functioning normally, some never recover, but most end up somewhere in the middle. The pages of information kept my mind buzzing, but I reminded myself to stay focused on the present. What good would driving myself crazy do, anyway?
- Don’t Be Afraid to Laugh When You’re Uncomfortable
Can’t be too careful when it comes to fall risks.
At this point, I had a million thoughts running through my head, mostly centered around what the rest of my life would be like. “Will I be stuck in a bed forever? Will I need to use a wheelchair? How hard will the recovery be?” Eventually, the doctor returned and told me that the first thing I needed was a treatment called plasmapheresis, an artificial type of blood filtration similar to dialysis. After he left, I started chatting with the man lying in the bed next to me. “Welcome aboard. Sure sucks to be here, doesn’t it?”, he said with a smile. We chatted for a while, and he told me about how he was there with his third stroke, cracking jokes the whole time and temporarily taking my mind off of the situation. For a guy who spent about as much time in the hospital as the staff who was treating him, he sure knew how to keep things light.
- Progress, No Matter How Slow, Is Worth Working For
Every jump up felt like climbing a mountain, and every successful attempt felt like reaching the peak.
By my fifth day in the hospital, I started feeling a little bit better. I underwent five plasmapheresis treatments, and still had virtually no feeling or movement below my waist, but I was able to maybe – just maybe – wiggle the smallest toe on my right foot. The nurses tried to stand me up using a device sort of like a dentist’s chair. It would be my first attempt at being upright in over 72 hours. Well, that experiment quickly came crashing down – literally, because I immediately blacked out and ended up on the floor. Later that day, after I was safely back in bed, I discovered that one of the few doctors in the world who specialized in treating TM practiced at Johns Hopkins Hospital. The staff at the Clinic thought I was in no condition to travel, let alone six hours to another state. But my first few seconds upright since Saturday night were all I could think about, so I made a few phone calls. Then, two days later, not knowing what lay ahead but determined to get my life back, it was off to Baltimore I went.
- Work Hard, And Savor Small Victories
Slowly but surely, I gained my strength back.
After I arrived in Baltimore on Sunday evening, I was placed in the neurology unit of Johns Hopkins. My first night there, I was again awoken by my body – this time, however, because my heart felt like it was beating a million miles per hour. I literally thought I was going to die that night. I started screaming for the hospital staff who transferred me down to the ICU where I was diagnosed with a pulmonary embolism and put on blood thinners. The next morning, I saw the specialist who I came there for. He was upbeat and enthusiastic, looking me right in the eye and saying, “David, three things are going to help you get better: physical therapy, physical therapy, and physical therapy.” He told me that my sessions would be long and difficult. At the end of the first one, I had a little more movement in my foot than I did before. After all I had been through to that point, it was cause to celebrate, even if it didn’t seem like much.
- Motivation Goes Both Ways
My physical therapists pushed me hard, and every step forward was a step for them, too.
After three days of intense sessions, I was moved from Johns Hopkins to another nearby hospital for inpatient therapy. For around five to six hours per day, my therapists, Elise and Pat, pushed me as hard as I could go (which, admittedly, at that point, was not very hard). But as hard as they pushed me, I like to think that I pushed them right back too (especially the many times I fell over onto them!). They were so dedicated to helping me walk again that they even worked late to spend extra time with me. As much as I wanted to get better for my own sake, I could see that every bit of progress I made was almost as important to them too.
- Enjoy Your Time
Because you never know how short it might be.
After a month of hard work, I was finally able to walk again. I still went to PT three or four days per week, and I spent every other day in the gym, exercising and even playing some basketball. Slowly but surely, I started to get my old body back. And even though I had spent the past two months working as hard as I possibly could to try to walk again, I couldn’t help but think about just how lucky I was. Throughout it all, my friends and family stuck with me, and with a lot of help, I went from the prospect of never walking again to living a healthy, happy life like I used to before that fateful night in April. If that isn’t a sign that life is about what you make it, I really don’t know what is.