Regarding my mother(s), who I love, and MS, which I fucking hate.

Regarding my mother(s), who I love, and MS, which I fucking hate.

tl;dr: Go here and read this article by Nicola Griffith about a new direction in Multiple Sclerosis research. If you care why this matters to me personally, read on.


I am a very fortunate person to be a part of two separate but equally wonderful families. I have a birth family, and an adoptive family–as a result I have two women who I refer to as “my mother.” Interestingly, they were both social workers who worked with children. One of them is a strong, brilliant, vibrant mother of five, living in Colorado. The other I didn’t get much of a chance to know. This post is about, and for, her.

My birth mother was already the single mother of an energetic boy when she discovered that she was pregnant with me. She wisely realized that being the single mother of two was not going to make life better for any of us, so she quietly put me up for adoption. It was 1971, and closed adoptions were the norm–she was told just enough to comfort her, specifically that I would be given to a family in Santa Ynez. There was something about horses. She was (I hope) satisfied that she had done the right thing–she had. I was raised by my adoptive parents to understand that, and have never once wavered in it: She did the best thing she could have done, for all three of us.

What happened next is a little uncertain. What should have happened is that the family who had gone through the adoption process would know full well that their new baby was coming home soon. Presumably that family in Santa Ynez did know, if they really existed. It’s possible that I was even there for a few weeks, because there was a six-week gap between my birth and my arrival at home. What we know for certain was that in December my mom and dad got a call saying, “We have a baby for you. Now.” They were completely unprepared.

But in mid-December, they brought me home.

Mom on the right, with her parents who eventually cared for her full-time. The small thing is me.

Six months later they had a final court date. This was it–I wasn’t really theirs until they got through this. They sweated it out, and I imagine said as little as possible, because something had happened that they didn’t want the court to know about: The week prior, my mother had been diagnosed with Multiple Sclerosis.

I remember pineapple upside-down cake with little halved cherries. I remember Mom chiding my dad and making him bring me scrambled eggs in bed because he had sent me to bed without dinner for some infraction. I remember the autistic kids she worked with sometimes coming to the house, and her telling me how lucky and blessed we were. I remember her knocking politely on my bedroom door and not freaking out at all when she opened it to discover that I had cut all of the beads apart on my beaded curtains and was busy sorting them on the floor.

And I remember her walking me the two blocks to kindergarten, and having to rest half-way there. I remember the cane that she used after that. And then the stair-cane. And the walker. And the wheelchair.

I’m not sure if it was Primary Progressive, or Progressive Relapsing MS. What I do know is that after the first couple of years there was no relief for her. By the time I was seven, she was confined to a wheel chair. By nine, she was confined largely to her bed. When I was eleven she nearly choked to death on a bite of hot dog in front of me, and a feeding tube had to be put in. She didn’t eat anything by mouth for the last four years of her life. She couldn’t speak for the last two. In 1987 she died in a convalescent care center at the age of 44. She weighed 77 lbs.; the constant, uncontrollable tremors took every calorie they could possibly feed her and more.

I fucking hate MS.

It’s a baffling disease. When I was a kid there were experimental treatments like cobra venom, and standard treatments like Prednisone and Vitamin B12 injections. It seemed to be an auto-immune disorder, but nobody could seem to get much of a foothold on a treatment that worked.

The reason I’m writing about this today is because today a paper was published in the Quarterly Review of Biology that may explain why we’ve got exactly nowhere with this evil goddamn disease. The paper posits that it is not an auto-immune disease at all, but rather a metabolic disorder, much like atherosclerosis. There is a layman’s explanation of the paper by Nicola Griffith here.

I sincerely hope that this is the new direction that’s needed in treating and possibly even preventing Multiple Sclerosis. Nobody should have to go through what my mom did. I became a supporter of end-of-life choices at a very young age precisely because I watched her deteriorate and suffer horribly for a decade and a half, and she expressed to me her wish that she could just die. From what little we knew that seemed like the only option as the disease progresses. This paper may provide a ray of hope that it never has to come to that.

I couched this in a narrative of two mothers, so I suppose I should come back to that. I found my birth mother when I was twenty, and along with her my older brother and three younger sisters. Ma, as she is known, is a wise, witty woman and has been my de facto mother for many years now. I am certain that Mom would have liked her, and would be glad to know that I do still have a mother, when MS robbed us both of really knowing what that was like.

I hope that Dr. Corthals is right, and that the mothers and daughters and fathers and sons of the future will get to face MS with hope instead of despair.

Virginia Catherine Hohmann Yant, 1943-1987

2 thoughts on “Regarding my mother(s), who I love, and MS, which I fucking hate.

  1. Thank you for sharing that. I have and had people in my life with MS, and I agree it’s fucking terrible. Any progress is something to look forward to.

  2. This made me teary. A lot of the struck home for me, for personal reasons. I’m a bit in awe of how you wrote this, and I’m at a loss for words.

    Thank you for sharing this.

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