I’ve heard people say before that when you get really sick of the status quo, that’s when you’ll truly make significant changes. I can verify from experience that it’s true.
All along, I thought that I didn’t really have that much power over what happened to me. Especially once I got that multiple sclerosis diagnosis: a lot of people started to see me as horrifically sick. Not just a little challenged, but doomed. Incapable of doing anything challenging ever again. If you need a month off every year to recover from a relapse, the solution is to not work the other 11 months, rather than looking for alternate options.
I was strongly advised to just go on disability because, you know, I was so sick and would never get better. I should just collect my money and sit at home, feeling miserable and waiting to die.
All of a sudden, though, once I sought help from an attorney, I started becoming even more certain that I really didn’t want disability.
From there, I paid for the grueling 8-hour exam by a neuropsychologist of my functioning and an MRI of my brain. The original intent of those was to prove how serious I was about trying to get disability and how much I needed it.
Similarly, since my disability claim was for both depression and MS, I had to take medications for both to show that I was trying.
To my surprise, all these things I’ve done have made me feel much less like I need disability. I finally got on the right combination of meds for depression. Even though none had ever helped me before, these ones actually are.
I’m actually taking the disease-modifying drugs for MS, which I still don’t love. But I’m very hopeful they’ll keep me from having my typical annual relapse in August.
The MRI I had showed no new disease activity in my brain since the relapse in 2017.
The neuropsych found that my math skills were impaired, which was confirmed by the areas of my brain damaged by my last relapse. But I still have a “genius level” IQ when it comes to verbal skills.
I’m doing so well that I almost feel guilty applying for disability. So many people need it so much more than I do.
Now I have some hope. I thought of a viable career option that will get me out of the horrible freelance writing I was doing before.
I’m starting to exercise every day. Yesterday I did an hour and a half on the treadmill, walking a total of 6 miles. I got 15,000 steps the whole day. The day before, almost 12,000 steps.
Can I still tell that I have MS? Absolutely. After about 55 minutes on the treadmill, my right leg went numb from my foot to my calf. I kept walking and the numbness traveled up to a tight muscle spasm in my thigh.
But I kept going.
My husband always worries about me when I do stuff like this. But I’m fine. I think it’s good to push myself. Because the day may come when I can’t, and it’s more likely to come sooner if I baby myself now.
Facing disability makes me realize what’s at stake. Yes, I’d get a monthly stipend. But I’d also see myself as sicker and more helpless before my time. I could lose the ability to walk, the ability to drive. It’s important to do these things while I can, in hopes of staying off further progression.
What does the future hold? I don’t know for sure. I still want to go to grad school and become a licensed clinical social worker or licensed professional counselor (probably the former.) It remains to be seen how I’ll do with grad school and what my brain can handle.
But I am optimistic that it will be okay. That I’ll get the degree and will do well like I did before and have a career that I like. I still love libraries, but that was what I was thinking of for a part-time job if I had disability. I really want a professional license and a good full-time job.
Suddenly realizing that things could turn around is giving me so much hope. The future is so much more open than I thought. I want to see what I’m capable of.
I’m praying for something close to a miracle. This one seems like the odds are in my favor. I’m going to give myself a try.