Not even plan b
It started in March. I had this strange numbness that went from my belly button down to my toes on the right side. It felt like someone had taken a band and cut off my circulation. It spread to my left foot and then my right fingers. Tests were ordered. A trip to the neurologist. Blood examined. 4 MRIs. Eye Test. A final spinal tap. I became one of those lucky 1 out of 5 who got that post lumbar headache. So add a trip to the ER and a blood patch and migraines just for fun. A diagnosis. A second opinion scheduled and diagnosis confirmed.
I have Multiple Sclerosis, the relapse remitting kind. It’s difficult to type those words. I’ve been speaking them, telling people in my life, but writing them. That seems so permanent. And it is. There is currently no cure. Multiple Sclerosis is thought to be an autoimmune disease where your body attacks the myelin sheath protecting the nerves in your central nervous system. Think of myelin as the outer covering to a live wire, now imagine the wire is exposed. So basically any of your functions connected to the CNS can be affected. Scars are formed on your brain and spinal cord called lesions. I’m not being very scientific, just simplistic in my explanation. You can google it if you really want the details.
They consider MS to be a treatable disease today with drug therapy, especially the kind I have. So I am now researching and trying to decide what drugs or if drugs. The drugs help to decrease relapses, thereby helping with quality of life, however there are so many side effects with these drugs that effect quality of life. It is not an easy or clear decision. There is also much to be said for lifestyle changes: diet, exercise, sunshine, vitamin D, meditation, rest. I have found great hope in the book Overcoming Multiple Sclerosis by a Dr. in Australia who has had MS for 14 years with no relapses because of how he has chosen to fight the disease. There’s also hope from Dr. Terry Whals, who after radically changing what she consumes, is now able to walk after not being able to do so for years. There are new therapies that haven’t been approved yet on the horizon, ones that won’t require someone to inject themselves every day.
When the second opinion confirmed MS, I sat in my car in the underground grey parking lot and cried. I felt such a heaviness. He recommended the drugs and said I’ve probably had it for a while. I asked him, so what now? I’m supposed to take drugs forever? He said, forever is a long time. You just take it day by day.
I’m feeling well. I still have a tiny bit of lingering numbness in my right foot, barely noticeable. And emotionally I’m up and down about it. I’ve been a very healthy person my whole life, so this throws me. I think it’s no coincidence now that the current book I’m writing/editing explores grief and pain through my main character. When I began the idea for the book, I had just lost a friend to suicide, so the grief started there. But the grief is now more personal, in that I feel a huge sense of loss with this diagnosis.
It’s the loss of my normal. My sense of self is being threatened because now it’s like there’s this huge stamp that’s been placed on my forehead. I don’t want disease to be threaded through my identity.
Right now I’m a little consumed by it as I seek to understand the disease, sift through all the information, make wise decisions about therapy… I know it’ll get better. I know there’ll come a day when it won’t be an annoying fly buzzing at the front of my brain, right between the eyes; it’ll move to the back and eventually I won’t even hear the noise. It’s like when you have a baby for the first time and you’re trying to get the sleeping schedule thing down. You think it’ll be hard forever. Forever. But it never is because nothing lasts forever. Eventually the kid sleeps through the night. Eventually you think you should have another baby.
I have decided to incorporate lifestyle changes as the frontline way to fight this. With food that means plant based, fish, non dairy, low sugar. So glad I live in Los Angeles where the server at the last restaurant told me, “if you don’t find what you want on the menu, let us know. We are here to serve your dietary needs.” Ha. It was in Silverlake, of course. I’ll be exercising five times a week. I’m going to work on getting eight hours of sleep a night and taking 15 min power naps when able. As far as supplements right now it’s just vitamin D, omega 3 and methylated B12. From the research, I don’t believe I’ll need more than that because I’ll be getting my main vitamins/nutrients from actual food, which is way better for you.
I’ll be making a more informed decision on the drug therapy over the next couple of months. That still scares me, but I’m willing to do anything to fight it.
Even though I’m sad about it, I still have hope. I cling to hope because all is not lost. I’m still in very good health. I have an amazing family. I have a wonderful community. I have a great job. I’m doing what I love. At the moment I’m listening to The National. It’s a great life. It’s not what I would have planned for myself. It’s not even plan B.
Some of the best things that have happened to me have not been the things that went according to plan: meeting David, my marriage, teaching HS, traveling the world, having a third kid, book awards, getting MS… but it’s been through these things that I’ve struggled and worked and become who I’m supposed to be. None of us are guaranteed to go through our lives without suffering. When suffering or pain hits, we act so surprised, shocked that it’s happening to us. The fact that there is constant suffering around us seems to get filtered out of our consciousness. That only happens to others, not to me.
But it doesn’t. We all suffer. We all have things that deviate from “the plan,” and for that I am grateful. Because it’s in the getting up off the floor, the standing and facing the fear and the pain head on, that you see miracles. You see hope. You see love.
You realize that you are stronger than you ever thought you were and you transform into something so beautiful and you stretch to touch the divine.