Planning to be alive

Last night, my husband and I had an interesting and unexpected conversation. He told me how much life insurance he signed up for himself at his new job and that he supports me going to grad school so I can have some real earning potential. But he also said I should try to be as dedicated as possible to paying down my student loan debt.

The reason for all of this: for the first time since my diagnosis, he has started to see the possibility that I may outlive him. Only a few months ago, we both believed the opposite would be true. I don’t need more earning potential so we can live large but so that I can take care of myself if something happens to him.

When I left my full-time job last year, I thought I was too sick to work. I bought into a lot of narratives from a lot of different voices, all of whom told me my MS had just gotten too bad to work anymore. Several people told me to apply for disability, which I did. When I got denied, I was strongly encouraged to get a lawyer so I could get Social Security disability.

It felt like I had reached a black wall that separated me from my future. In no small way, I fully expected to die young. In truth, the thought of staying home for the rest of my life on disability made me feel like an early death wouldn’t be so bad. I didn’t bother fighting back. I figured I was down for the count, out of the game, marking time until I died. I would be useless, my life more of a waste than I ever wanted it to be.

Now, suddenly that figurative black wall that was blocking me from seeing my future is disappearing. I can start to see over the top of the wall now and see something on the other side. I actually have a future.

I credit the change to several things, all of which cumulatively added up for my good. The first was getting the results of my neuropsych exam. I honestly think that was some of the best money I’ve ever spent because I learned about how functional I still have the capacity to be.

There are reasons to be critical of IQ tests but nonetheless, being told that my verbal IQ scores were still in the genius range, even after everything that’s happened to my brain, made me view things differently. If I still had genius-level verbal skills, it seemed like a total waste to sit at home doing nothing for the rest of my life.

Around that time, I also had another MRI that showed that my disease was stable and I had no new lesions. The attack I had in 2017 was indeed really bad but there hadn’t been anything since. I just did really badly while working because it was in the middle of a record heat wave (which makes MS worse) and I wasn’t sleeping anywhere near enough.

Another compounding factor in doing better was starting the disease-modifying drugs for my MS. I was so scared of them for so long because I had researched them to a point of paralysis. I assumed I would get every possible negative side effect because I usually do with other medications. And many of them have death as a possible side effect, which is a reasonable thing to find scary.

Instead, the first one my neurologist put me on worked. Within a couple weeks, I could tell that it was reducing the inflammation in my brain. I can now perform seemingly mundane tasks like looking at a phone number and being able to recall it well enough to repeat it a couple minutes later.

That may not be so impressive and indeed that used to be easy and normal for me. But I lost that ability after my 2017 relapse. Even the neuropsych said I had almost no working or short-term memory. And now I have it back again after being on this disease-modifying drug.

Many people have had to quit the drug I’m taking because the side effects were too intolerable for them. And yet, other than one or two days at first, I haven’t really had any significant side effects. Now I’m just hoping and praying my white blood cell count won’t tank because that could cause me to have to stop taking it.

I didn’t really have a choice about the MS meds since I was trying to get disability. Similarly, I also had to start taking antidepressants for the same reason. The lawyer told me it would hurt my case if I wasn’t doing everything I possibly could, which in this case meant I had to take medicines I previously avoided.

To my surprise, they worked. And I’m now getting better at a pretty dramatic rate. I’m even working again, doing as much freelance work as I did before 2017. I don’t want to keep doing it forever, but the fact that I can work again is remarkable (especially this much.)

Just a few months ago, I could only walk for about 15 minutes and would need to hold on to something. I had to have my husband go grocery shopping with me because I’d get too confused and overwhelmed on my own. My balance was incredibly poor and I often ran into walls or stumbled a bit.

Today, I’m walking 20 to 30 miles every week. Last night I even did some 1-minute running intervals, which was completely impossible before. (Granted, my feet went numb from that, but I still kept going even with numb feet.) The other day, I stood on a chair to change a couple light bulbs in my dining room.

I’m planning on going to graduate school in the fall. It looks like the 100% online program I was going to do may not work out. (I first applied and was accepted in 2017 but I’ve had nothing but problems with them since the beginning. They seem incredibly disorganized and that bodes poorly.)

So now I’m looking at doing classes in person. I don’t know if we’ll get my 16-year-old driving somehow before next school year so I won’t have to handle the transportation or if we’ll find some other solution. But the idea of in-person classes actually sounds fun, and like I’ll probably meet people.

All I know is that I’m choosing things in my own best interest for my future. And I don’t feel like I’ve been able to do that very much since I moved down here.

I often say that my illness was a gift and I feel that way even more so now. It gave me a wake-up call that I don’t have time to waste and that I have to fight for myself. The days of feeling pitiful and like my identity was the sick girl are over because frankly, they sucked.

I’m actually working toward a career that assumes I’m going to be around for a long time. Just thinking that I might really be around for a long time is a novel concept, so unusual I can barely wrap my head around it.

I might really live. And I guess I’m still pretty smart (with the exception of math, which I was never good at and which was even more affected by my 2017 relapse) so it’s time to try to build a career that could support me if something happens to my husband. I will get to be useful. Seriously, it’s just such a weird feeling to realize I might actually have a future.

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