On The Road Again

Hello friends,

I didn’t realize how much time has passed since we last spoke. I have been so busy. I have moved all of my previous entries to the new site, so please don’t forget to go to www.othersideoftherails.blogspot.com if you would like to continue following my blog. 

On another note, last Friday I drove myself to work for the first time in what seems like an eternity. I cannot tell you how wonderful that was for me. Of all of the things that I lost during this experience, the loss of my driving privileges and the accompanying freedom was the worst. Even more so than losing my physical mobility. I know that probably sounds odd, but what can I say? I am from Detroit, the Motor City, driving is my birthright! I am humbled by the kindness of my friends for helping to make sure I was able to do everything I needed to do. Thank you Carole, T.J. and Kristy, I really appreciate your help. With a special thank you to Cheryl who had to endure my complaints about her driving, when most of the time I think I was just mad that I wasn’t driving. She just might be the only person who is just as happy that I am driving as I am!

 Each step back into my life compels me to reflect on living through the experience of suddenly becoming disabled and the journey back to independence. Reflecting on all the things that I have taken for granted and all the things I ignored altogether. Of course being a therapist I had to analyze it LOL. In my training and professional experience I have often discussed grief and loss, but it is really something you have to experience to fully understand. It is an incredibly visceral experience. No amount of education or training can ever really prepare you for something like this. I have experienced loss and death in my life, but somehow these events were external. This experience has been absolutely internal and personal. I think being able to write this journal has been essential in keeping me from getting lost in my own head.

I thought about the famous stages of grief. I definitely had a period of denial. During the first few days in the hospital I scoured the internet trying to complete my own differential diagnosis. I heard what the doctors were saying, but I knew this couldn’t be happening to me. I have watched enough episodes of House to know that you have to go through a few guesses before the great epiphany comes along! In a way this helped me more than any of the information the doctors were giving me. Or the reassurances from well meaning loved ones that it might be something else. As I reviewed every conceivable condition for my symptoms it became more and more obvious that nothing else fit my list of symptoms.

Then there was a thankfully brief moment of depression. My cousin’s father died of MS a number of years ago and when I finally accepted the diagnosis, he was my first thought. It came over me that I had witnessed my own future as a child watching the progression of this disease. Over the years I watched him slowly lose the ability to walk and became confined to larger and more automated wheelchairs. He lost the ability to uses his hands and unable to use the wheelchair. He was eventually confined to a hospital bed with his entire world reduced to a single room. I thought about the last time I recalled seeing him before he died. He was lying in bed, impossibly thin and frail for a grown man, with a gaunt face and constricted limbs. His face drew into a strange grin. To my ears his speech was indecipherable, but his eyes were alive and showed so clearly his desire to communicate, to engage. I remember that even in that moment in his feeble condition his eyes still contained happiness. I don’t know why, but this memory has stuck with me over the years since his passing. I am sure the details have been corrupted by time and my own perceptions, but there it stayed in the back of my mind. Since his passing, I have rarely entered the room where he spent his last days. I don’t even think that my aunt knows it, but something about that room has made me uncomfortable since he passed away.  I like to think this is some empathetic response to another human beings suffering, but I wonder if it was something more.

When it finally sank in that the disease that had claimed this man’s life was now a part of my life, I lost it. I fell apart and cried in a way that I never had before, and pray that I never have to endure again. It was painful and gut-wrenching. It felt like pain and sorrow rushing up from the deepest recesses of my heart and soul. I remember just shaking and crying out, “I don’t want to die like that”. I was so upset the nurse ended up giving me a sedative. When I woke up it was all gone. The self-pity, the anger, the sorrow, the frustration; they were all gone. It was like they drained from my body with the tears that had flowed so freely the night before. When I woke I just knew that it would be different for me. It may be more denial, but I know I will get better. I know that I will find a way to live with this disease and not just live through it. I haven’t cried for myself since that night and I don’t plan to.

This isn’t to say that I don’t have my moments. There are definitely times when I become frustrated with the things that are still difficult for me. Times when I feel ashamed of my strange way my body moves when I walk and the random tremors that cause people to stare at me. What I am saying is that I try to make those moments as brief as possible. I still have an amazing and wonderful life surrounded by people who love me walking or wheelchair. No matter what happens in the future, my eyes will be filled with happiness. I wish the same for you.

Thanks for listening. Talk to you again soon.