The shadow

It’s almost Christmas and I should be cheery. So if you’re looking for seasonal cheer and an uplift to your spirits, feel free to click away.

Because I’m going to talk about a topic that’s not at all Christmassy: the shadow of death that looms over me. Sometimes it goes away, but it always comes back.

To be clear, I didn’t fear death until my multiple sclerosis diagnosis. But since then, the fear has always been there to some extent.

Within a year of my official MS diagnosis (and thanks to the help of many friends who funded the first step of my journey), I moved back to Texas. I was terrified that I was going to die in Michigan, where I was so miserable. And yet ironically, I also really wanted to die.

Alternating between really wanting to die and being stark terrified that I will are two contradictions I often deal with, sometimes at the same time.

I thought I’d have more time to pursue my purpose, maybe go back to grad school, once my kids graduated. I had these great plans for a second act. What I did not anticipate was getting sick to a degree that it wasn’t as likely to happen.

I’ve tried to get myself through the fear that I’m going to die by reading a lot about the statistics about MS. I know that the average life expectancy for people with MS is only about six years shorter than for people without MS.

On the other hand, I’ve also read studies like this one, which says that the risk of premature death is double in people with MS compared to without — and nearly triple in my age bracket.

That study also says that multiple sclerosis (or complications from it) is still the main cause of death for people with MS, which also dispels the oft-repeated lie that “you can’t die from MS.” Apparently, you can and most people do.

The fact is that my health has been on a steady general decline for most of the past five years. And it got dramatically worse after my relapse a little over a year ago and never really bounced back again.

Considering the fact that I already dealt with anxiety before diagnosis, it hasn’t been easy to shake my fear of death since I got diagnosed. It has only increased since my major relapse last year.

I used to assume I’d live a normal lifespan. I don’t take that for granted anymore. I was talking to my mom the other day about someone we know in their 80s, and she said, “I hope I’m like that at that age.” My immediate thought (which I didn’t share with her) was that I didn’t think I’d still be alive at that age.

On the one hand, none of us are guaranteed the average lifespan. Any one of us could die in a car accident, get diagnosed with a fatal cancer, get impaled on something at Home Depot. And it’s a fallacy to think you’ll always have time to do what you want, which leads many people to procrastinate their life away.

But on the other hand, knowing for sure that you have a disease that is most likely going to shorten your life is something else entirely. The unpredictability of the disease makes you completely unable to know if you’ll get the “almost totally normal lifespan minus 6 years” or if you’ll be one of the ones who dies in their fifties.

If I’m one who dies in my fifties, that’s only a little over five years away. And that’s terrifying.

I have so much I wanted to do that I didn’t get to, that I might not ever get to. I still have so many things about myself that I have to fix.

I still have to find out what my purpose is or even if I have one. And I feel like my time for doing the things I want to, for fixing myself, for finding my purpose, is all limited in the here and now because I’m sick. I don’t have the energy, motivation, or (to a lesser degree) money to work on the things I need to do.

Right now I feel like my life will have been a waste. I’m afraid of being like my grandma, a person who was surely complicated and dealing with her own stuff, but who is not widely missed. She was only greatly beloved by my grandfather, her husband, who misses her as his companion. But even in the rest of her family, among her children and grandchildren, she isn’t missed that much. I know that’s horrible to say and I feel awful for feeling it. You’re never supposed to speak ill of the dead.

She didn’t let anyone in. She didn’t have many close relationships. As far as I can tell, she never tried all that much, though who knows what people deal with in private. I do know that until I moved away, she was always resentful that no one went to visit her enough. Whenever I did see her, she was mean. And she never put in any effort to maintain those relationships in the first place, so it wasn’t like she was ever on the top of anyone’s list to see.

How do I know that I’ve done any better? I’m not as mean as she was, but I’m still pretty isolated and have few close friends. Ever since I joined the stupid evangelical church here (which I left over a year ago), most of my old friendships ended. And now I’m trapped in this depression cycle of being afraid to meet new people and having few opportunities to do so anyway.

I’m learning about how certain types of unhealthy family dynamics are passed down from generation to generation. Like of people wanting control and not knowing how to communicate openly and having lots of dysfunctions. The family I’ve created has fewer dysfunctions than the one I grew up in, certainly far fewer than the generation before my parents. But it’s still there to some extent. I wish I had known about it earlier and had known how to break the cycle.

Now I feel like time’s going to run out, like I’ll get to the end of my life (soon!) and no one but my husband will miss me and it will all be my fault. I regret not doing better when I was younger. It’s all just wasted time.

I just want more time. And I want to recover well enough again that it doesn’t feel like every day is like trudging through quicksand, so I can actually get more done.

I know I also need therapy. But right now I don’t know how even our basic needs will be met or how we’ll get health insurance again, because so much is uncertain with my husband’s job. I’m going on faith that he will get another job and get health insurance again and that those things will turn around. I just don’t know when.

Even if I can’t ever afford the IVIg treatment to help my brain, I still have hope that something could make me feel normal again. But trying to figure it out as a DIY project is a bit much given the limits of my brain right now.

But can anything take away that shadow, the choking fear of death? And how much can I trust that the fear of impending death is real?