A week after this photo of me hiking was taken, my right leg became virtually paralyzed, and I needed a cane and a wheelchair just to get around. And that’s really the most frustrating part of this disease: I never know what’s around the corner. I don’t know if tomorrow is going to be a good day or a bad one. I don’t know when the next relapse is coming or what it’s going to do to me. I could be hiking up mountains one day, but unable to walk across the room the next.
The second time that I was admitted to the hospital for a relapse, a young nursing student was assigned to me. She confessed she didn’t really love neurology. She wasn’t particularly good at it which I accepted as a personal challenge because neurology is my passion. I taught her how to do a thorough neuroassessment using my own broken body as exhibit A “Note the absence of deep tendon reflexes”, I exclaimed as she unsuccessfully taped on my knees with the reflex hammer.
That’s because of my spinal lesions. I taught her how to memorize cranial nerves, and when she came back the next day she had that look in her eye. It was the look of a student who finally understood a concept, that they never thought they would, and it felt really great to have played a part in that. And that nursing student planted a seed in me that would begin to sprout very soon but later, after I left the hospital, I was reading one of the notes my doctor had written about me. It said, “Advise patient to pursue new career options.” Prognosis, “Poor.” And that was when I realized something: because I was diagnosed so young chances were good that I would live with this disease for more years than I ever even knew what it was like to live without it. It was up to me, and me alone, to set the tone for those years. I didn’t want to be a victim for the rest of my life. I saw no good reasons to give up on my ambitions so I took charge.
I decided not to take a leave of absence from school, and I read every neurology textbook that I could get my hands on making myself a virtual expert in the pathophysiology of MS. Then I decided to put my knowledge to use in the best way a graduate student knows how: by taking an exam. And that’s how I became a board-certified MS nurse just six months after being diagnosed with MS myself. I initially took that test as an act of defiance, to prove to myself that I could get more out of this disease, than it could ever take from me. I was still really focused on my anesthesia career, and I didn’t know if I would ever put it to use, but it was really gratifying to hang up that certificate on the wall, and add a few more letters after my name.
But not long after that, my neurologist called me. She needed a temporary staff nurse and wanted to know if I’d be interested. I took the job, and I loved it. I found that I could use my personal experience, combine it with my professional expertise, and use that to have a positive impact on the lives of others. But now I had a tough decision to make: stay in the anesthesia program, that I’d worked so hard for in the first place, cope with my MS, trying not to let it change me too much, or do the scary thing: blaze a new career path for myself and see where it takes me.
I decided to change my focus to become a nurse practitioner, and I hope to continue working with people who have MS for as long as possible. Being an MS nurse has taught me so many valuable things. One of the first things I learned is that everybody has the same questions I had when I was first diagnosed, “What’s next?” “Am I going to die from this?” “Am I going to end up in a wheelchair?” “Can I still have children?” It’s a lot to take in. So I decided to start a website, and I used those questions as my launching point. The unfortunate reality of our current healthcare system is that not every provider has the time that it takes to teach every patient everything there is to know one-on-one.
And a lot of people don’t even have access to the specialist who can give them that information in the first place. I wanted my site to be a resource for those people. I wanted them to walk away having learnt something new and being more capable of being an active participant in their own care. And I suddenly had people from around the world writing to me saying they’re actually moved to tears because they have lived with this disease for decades, but this was the first time that they understood what was going on with their own bodies. Can you imagine what that would be like? Living with a chronic incurable disease that slowly took away pieces of your mind and your body, and you didn’t even understand what was going on? I’m not offering a cure, but I’m empowering people, and that can go a surprisingly long way.