Tuesday, July 3, 2012

About this time last year...

my life changed. I had an episode of meningitis.That's nothing new for me. I've had recurrent, non-infectious meningitis known as Mollaret's Meningitis twenty-five times since 1984. It's been a constant in my life and those of my family. I always recovered completely. But this time was different. This time, for some unknown reason, the slight essential tremor I've always had was morphed into a debilitating tremor that resembled Parkinson's Disease. After receiving completely indifferent care from Neurology Associates, the Neurology group I had on hand to treat me should I contract another case of meningitis after moving back to Hickory from Durham a few years ago, I contacted my former neurologist, Dr. Douglas Jeffries. His office is about an hour from my home, but I was so relieved to see him, but by the time I got in to see him, the tremor was terrible. He tried me on several medications and nothing helped, and then referred me to his partner, a brilliant movement disorders specialist, Dr. Porter. Dr. Porter tried more medications to no avail.

We then began discussing Deep Brain Stimulation, or DBS. DBS is a procedure that requires brain surgery to implant electrodes deep into the brain into the thalamus. Total head-shaved brain surgery. The wires are then tunneled down the neck and into a pace-maker type device in the chest wall. It's a two-part procedure requiring two separate surgical procedures. The first part where the drilling and wire placement is done with the patient totally awake. I can say that with the clinical separation of an RN, but it's very different when it's you on the table.

My life degenerated into a deep, dark place. I had put down my camera--I couldn't hold it still. I could no longer do any of the hand-work I so loved, and with two babies on the way, that was depressing in itself. My daugher and daughter-in-law were both expecting at the same time. I had to go onto first short-term and then long-term disability from work. I hesitated to go out into public because the tremor was so bad. Once, in a Chinese restaurant, the woman up front who took my order called the entire kitchen staff up front to look at me. No kidding. I couldn't write, and typing on my keyboard became so frustrating, I eventually stopped even opening my laptop. My standard of living changed drastically. I went from the salary and benefits of being an RN to many times not having money for medications and groceries. I stayed in; I became a hermit. I wouldn't even be around my beloved Laney for fear of scaring her.

The bright side was that in October,we welcomed Emelia, or Mimi to our family. And then in December, I was blessed to be able to be present for the birth of Isadora--known affectionately as Izzy or Isadorable.

My first procedure was scheduled for February 7 of this year. It went surprisingly well. Dr. Bell and Forsyth Hospital in Winston-Salem, NC, would be my recommendation for anyone requiring brain surgery. Hopefully, that will be few people. I went to my daughter's in Durham for a week of recuperation and to spend a few early days with Isadorable. Then back to the hospital on my birthday, February 14 for part-two. The staff in the OR had balloons and cards for me. See what I mean about Forsyth Hospital? And I got to go to sleep for that procedure and stay in the hospital overnight before the long drive home. My son, Adam, stayed with me a night or two and then I was on my own. Oh, by the way, I had moved in the interim between December and January into a smaller, more affordable place. So I was in an unfamiliar setting. And I had fallen in January, fracturing several ribs and a spinal bone. So I was pretty uncomfortable before the surgery took place.

The surgery is really for people with Parkinson's Disease, so we really didn't know what my outcome would be. Or if it would affect my auto-immune disease that causes the Mollaret's. It has helped pretty drastically. I still shake, but I don't gyrate. My fine-motor skills may never be the same. My balance has been affected. My short-term memory was affected at first, but it seems to be getting better. I've applied for SSI, because I can think of few things an RN would be called upon to do that I can do now. I never dreamed I would ever have to do that. It's difficult to maintain any dignity with a shaved head and being so different from how I was a year ago.

But life goes on. I have two beautiful new granddaughters and Laney has graduated from pre-school and is headed to Kindergarten this Fall. She assures me that I look fine with or without my wig. I've rekindled a relationship with my one remaining aunt, from which I was estranged several years for some silly reason. I have had enough. I have been enough. I have had a family who cared enough to help me through.

I have picked my camera back up--although I've had to relearn many things and I use a tripod or monopod a lot now. It feels good. I've decided to resume this blog, because I've decided it is important. Many things are important I never thought about a year ago. I came across a beautiful line sometime this year. I believe it was attributed to Ram Dass. "We are all just walking each other home." And we are. I've just been lucky to have walked this far with the love and encouragement of some pretty special people.

May we all be filled with loving kindness...


  1. Jan - First of all, thank you for sharing this link with us at PA. Please, don't ever be shy about sharing with us there.

    Most important though, is that I am so sorry you had to experience this year from hell. It sounds like you're on the upside now. I'm amazed at the inner strength that got you through your ordeal; strength I'm sure you never knew you had. It's scary, isn't it, to think about that?

    Continued love and prayers,

  2. Jan your journey has been an amazing tribute to your strength. You made it through, and you see the "important" things in life. So good to see you are healing. So good to see you are writing and shooting pictures. Happy happy days for you with your grandchildren!

  3. Oh, Jan. I just found you here through PA. How happy I am to know that things are improving for you. I cannot imagine what you have been through. Fear alone must have been overwhelming but here you are, different but strong. So happy you are enjoying your granddaughters and your camera again. I wish you happiness and health.

    Hugs to you,