I’m in the “thin, white, women under 50” group. (Yes!) So says my Nurse Practitioner. The privileges I have for being a part of this group are so abundant they drip from my thin, white, fingers. Also, the probability of a woman like me, who lives in Wisconsin, developing Multiple Sclerosis is 1%. Winner, winner, chicken dinner!
400,000 people in the US have MS. About 200 new cases are diagnosed each week. (Read more HERE.) IF a thin, young, white, woman has MS, her children have a 3 to 4% probability of getting MS in their lifetimes.
With MS, things can be normal and even great for chunks of time, then there can be (and almost always will be) a relapse. More myelin damage. More symptoms. Individual episodes can be mild and the body, the amazing, resilient body, can recover. The body can recover lost vision, lost feeling. The trouble is that sometimes they are not mild and could cause disability. Permanent disability. And the amazing, resilient body just can’t rebound. I’m getting used to the idea of giving myself injections every day to delay that eventuality. Six months ago, even six days ago, I was a resolute “no” on the subject of administering shots. To myself. Now, if I think of it as buying time, however, especially time with my children, I can see it. I can do it. I will do it.
Appointments in my neurologist’s office are humbling, to say the least. I ride elevators and wait alongside stroke patients, and people with dementia and Alzheimer’s. I don’t see people my age unless they are there with an older family member, excepting one woman with brain damage resulting from a car crash. I’ve seen three different neurologists, one nurse-practitioner, six ophthalmologists and every single one of their residents. They all ask for my history, then run through a list of damning questions, “Have you experienced any weakness? Loss of balance or muscle control? Bladder or bowel incontinence?” What? No. Why? What have you heard?!?
The clinic is located within the hospital and shares a lobby with Pediatric Neurology. I sat there two days ago and watched a little girl sitting with her mom and her grandparents. Happy. Mobile. Why is she here? Maybe she has a headache. Maybe she’s had a headache for three months and cutting dairy and dyes and adding magnesium and rest and ibuprofen hasn’t done anything. Maybe she’ll get better on her own. Maybe it isn’t serious. I hope she’s okay.
I haven’t been advocating for my five-year-old lately. I’ve been preoccupied. And yet…Pediatric Neurology called me this week and said they had a note to move my daughter’s appointment up from February. Because she has headaches every day and has since August. Because her Pediatrician is stumped. Because nothing works. Yesterday, we both were exhausted when she came home from school. I fell asleep for ten minutes only to wake up to her crying, sobbing really, saying she would “never, ever feel better” and that there was nothing that could help her. Inconsolable. Hello, motherhood, you’ve broken my heart. I haven’t been nagging her doctors. But someone must have. So now my daughter and I each have a neurologist. I keep hoping her headaches will just go away. Maybe we won’t need to go into the other side of that waiting room come December. Sometimes the headaches do fade…But they always come back. And she is defeated every time. “I just want to feel good. Why does mine forehead never feel good any more?”
I wish I knew.
The first time I met with my MS specialist, we started to hear a strange, repeated cry from a neighboring room. He stopped what he was saying. “Do you know what that sound is?” “I think it’s a child with Cri-du-chat.” (Thanks Genetics 466.) “I think you’re right,” he said.
We both stopped talking and looked at the floor for a moment. Because MS is lah-de-dah when someone next door to you is lucky to make it past their first birthday. ( From Healthline): “The good news: about one-half of children with crying cat syndrome learn enough words to communicate, and most grow up to be happy, friendly, and sociable.” Well, shit. That is fantastic!
So here we are, my daughter and I. Headaches. Demyelinating disease. But also thin, white, young, happy, friendly AND sociable.