Wednesday, November 6, 2013

Peaking Behind the Curtain

It is the oddest misdirection, slight of hand in the world of MS. One I have blithely practiced selective-blindness of for the past 13 years. That behind the various parts of me slowly, inexorably being lost—the wheelchair, the ostomy, the career loss, the nerve pain; the seemingly endless list of losses is one thing that I seem to have pushed aside. That the MS world keeps wrapped in a greasy cardboard box and sticks in the back of the janitor's closet. MS is a disease of the brain and all these years while my body was falling apart, so to was my brain.
Earlier this year I had my first series of seizures in the hospital. Not the stick something in my mouth, writhe on the floor, stuff of movies. But more where my body locks down, becomes rigid. Sometimes I can hear, often I appear to be sleeping, but internally my electrical systems are jangling on full overload. Lasts for an eternity but is really from five to 24 minutes. I come to lost, shaken, disoriented. The revered hospital neurologist declared it was either long-term sleep deprivation or whispered that it might be undisclosed trauma (the go to diagnosis of neurologists everywhere). She made no mention of seizures and MS. She did put me on a sleep med that scared me near to death and failed to mention that at higher doses is a powerful anti-psychotic. The medicine was a nightmare. Eventually I stopped taking it. Feeling better from that and hoping the seizures were related to being in the hospital or the exacerbation/infection I chose to put them back in the greasy box in the back of the closet. Given their silent nature and infrequency, it wasn't hard to do. At first.
With increasing frequency over the past two months the seizures are now front and center in mine and everyone's life who cares for me. I have days where hours go by and I can't fully rouse from the cycle. My brain feels like a layer of wet insulation is laying on it and electricity is coursing through it. Equally frightening is my speech has started to be affected. Often when I come out of an episode I can either not speak or the words come out in gibberish. What is so unearthly odd is that I can still write notes and think clearly. Even during non-seizure time chronic 'word finding' and saying nonsense phrases happens. It scares the people around me. Mid conversation I suddenly slip into talking in gibberish or rambling about something that doesn't make sense. The other morning I had an impassioned conversation with my husband, right in the middle of a normal one, about how tired we were after driving to Bend (a city two hours East of here) during the night. Later he questioned me about it and I had no memory of what I had said.
I am trying to research what is happening. As I understand it, it is pretty grim. The deterioration in my brain is getting into the connective tissue that the electric current flows through to keep me up and running. This is late stage MS. My Neuro says little else can be done. So now what? Do I find some way to live with dignity while my brain deterioration starts to be visible? Do I want to? Is there some way to fight this? I just don't know. I am terribly afraid.

4 comments:

Jill said...

Janine, I love looking at the photo of you in the ocean. It is pure joy on your face! I love you. Jill

Kim @ Stuff could... said...

The brain can be so scary. My dad was seeing people, getting lost in his brain, it was so scary for him and for us too.
Hope you get better

Nedarb said...

I love you, Mom. My thoughts are with you always.

Anonymous said...

My grandmother used to say, "fear is not of the Lord."
A very tough thing to practice in scary times. I haven't really been put to the test in life yet. A good mantra in times like this.
I am so tearful as my friend on earth starts to slip away. Our spirits are joined together in this world and in heaven. Love you, Cynthia