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PPS: Post-Polio Syndrome is what I have and it is definitely not for wimps. I had polio when I was 9 months old. I know this because my parents told me so. I have never known what it was like not to have polio in my life. Yes, polio has been eradicated from the United States but it is still in the world in third world nations.
I try not to think about it. One of the things I read about polio is that it affects all the nerves not just the nerves in your legs. I try not to overdo it but it is difficult when you want to do so much. I can always tell when I'm going to have a bad day. First, I get cold. Then I get headaches, then my legs don't work. So I try to stay warm with hot baths, warm clothing. And sometimes I will have an electric heating pad on my legs.
Also, I try to keep a notepad around. Another symptom of pps is being forgetful. I can be in the living room and need something from my car. I will walk into the garage and by the time I've gotten there, I forgot what I was going to get from the car. It's horrible. Most of you may know that I was a mortgage loan officer for almost 5 years. I resigned my position last year. I could tell that my memory was going and I felt that I could no longer function as well. Loan documents are very important and I did not want to take a risk with important financial documents.
When it comes to auditions, well that is another story. I love to read. I am an avid reader. I usually read 2 or 3 books at a time. When I was a little girl, I couldn't really keep up with my brothers & sisters. So, I stayed indoors and I read books. When you grow up in Ohio, many months are rainy and wintery. So books can take you away to wonderful places. I believe that books helped my vocabulary and my imagination. Back to auditions, I can memorize an entire script. And then I will have an audition and forget the entire paragraph. How is this possible?
I was officially diagnosed with post polio syndrome. I was shocked. I only went to the doctor because I noticed changes in my sleep patterns, energy level, headaches and of course, leg pain. I was hoping to get a prescription and then leave because I hate hospitals. I was there for several hours and met with a doctor, a physical therapist and an orthopedist.
I was told my legs are getting weaker and so are my arms. I was measured and fitted for leg braces and made another appointment to come back for a wheelchair evaluation. I was told I would need and should get a wheelchair. My head was rushing, my head was reeling. Thank goodness I was sitting down because I probably would have fainted. I had no idea that all these many years later of trying to keep up with everyone else, I was hurting my body.
I was all alone with these medical experts whose specialty is polio. Out of the depths of this despair, I wrote "Frida & Me". So now yes, I sit here in my bed and try to stay warm. I sit here with my cat by my side and my trusty laptop. I am supposed to be in Los Angeles this morning to attend a seminar with guest casting director, Lisa Pantone. I was supposed to go to the theater this evening to watch "Frida" at the Frida Kahlo theater. I am in bed and this is where I will stay for the next 2 days. Can you say, "this sucks!"
I am saddened that people don't know how difficult this is for me. I have always been a very independent person. I lived at home with my parents till I was 21 years old. I had never been on a plane. Our large family always went everywhere together like church, out to dinner, to the park, etc. When I was 19, I went to London all by myself. I was working as a secretary at Owens-Illinois. I got my passport and took a trip to see all the things I'd always read about in books. I have a fascination with English history and American history.
When I call people and say that I miss them and want to see them, it is because I miss them and I want to see them. And I am amazed how many people tell me that when they have some time they will call me back and we can schedule a time to get together. Of course I don't tell them that I am lying in bed and just to get to the other room can be a struggle.
Thank goodness for my trusty laptop. Thank goodness for my cat that keeps me company. Thank goodness for my husband who looks out for me and does what he can for me. I think he thinks if I take some daily aspirin that the pain will go away. Maybe demerol, or morphine but not aspirin. Nope, not aspirin.
I know I should be grateful. I don't have cerebral palsy like my friend, Andy. Most days I can walk and drive. But on days like today when I have so much to do and my body says, no way! Well, it is frustrating and it pisses me off.
I remember when I was a little girl I told my mother that I wish I had extra legs. You know, like extra shoes. When my legs would get tired and failed to work I could just take them off and put on new legs and keep going. But now I need new shoulders and new arms and a new neck to hold my head up. PPS is not for wimps.
I will take a hot bath and get dressed. I will make myself some breakfast. I will read my new book and perhaps look at some old photos. I will watch a movie and much later when my husband returns from teaching, we can make lunch. I will try to be strong for him. I want to be here for him. I feel like a shell of the woman I once was. Damn polio, I hate you.
