I walk slowly down the path. Myrtle Mae and I are headed to the bus station. This path isn’t always clear so I’m glad that Myrtle Mae is out guiding me and protecting me from dangers I can’t see. It is more than that though: Myrtle Mae warns people I might not see them.
Five years ago I did not walk tall. I was in fear of the night, lived in fear of getting home from a strange destination and Amsterdam was a nightmare to navigate. I didn’t think there was hope or help.
I walk carefully but proud within my life. I can hold my head high because I deserve to. That is when I pause and remember the many who feel that they aren’t deserving of holding their heads high. I think of the fight I waged and memories come back but other thoughts come back as well.
It began when I was 10. I wanted contact lenses. The doctor said “NO” and wouldn’t say any more. The next year I asked that same question and again I was told no. It was then that I became mad. I remained mad until 13. “OK you tell me I can’t have contacts because of my nystagmus. If I come in here next year and you can get enough of a measurement THEN can I have contacts?” Sure, he says. I go home and for that year I close myself off in a dark room and shine a light into my eyes. I do it enough to calm my eyes.
Then the next year the visit was one that changed my life for several reasons. First: The doctor pointed down the hall and told me who I needed to see. Second: As a person with disabilities I took control of my medical life. I took control of my entire life at that moment. It really was my body, my life and I was in charge.
I began to stand up for what I knew I needed both medically and educationally. I had begun the process at 12 with my education but it was at 14 that I really got down to business.
Many years have passed and I’ve been pretty quiet about and within my life but the desire to stand for myself and others has never faded. My desire to speak for the disabled has not gone away. Recently I woke up wondering why I’m not making more noise.
Did I get lazy? Have I grown complacent? Did I get side tracked? Maybe it has to do with the learning I’ve been doing. Maybe it was my own journey that side lined me. It wasn’t lack of passion was it?
No. it was life, the journey, learning, growing and calming in a new way. It was gaining an understanding of some needed issues and mourning the damage that someone with a disability has to come to terms with. Yeah, it was “life, the universe and everything.” (See Douglas Adams Hitchhiker series)
For me this latter aspect of life began when I was 21. She was a nice internist and I had to ask the question. Logically I knew the answer but I still needed to hear a medical person tell me what I knew intellectually. Yes, you can conceive a healthy child and it won’t be affected by your congenital issues. For a woman with a disability this is a real concern.
My 20’s were spent exploring, learning and trying to figure out how to pull off my 30’s. Could I really do, with my life, what I really had envisioned at 16? How would I do it?
When you have a disability you have to know how to knock down the fences and walls that stand in your pathway. You have to carry a sledge hammer and hit hard. You have to understand that 3/4 of the time you are going to be challenged. You have to learn to fight without apologizing. You have to cultivate a deep inner strength.
Life is never smooth. Life has many a detour along the way. Abled or otherwise life is going to present you with some nasty curves and bumps in the road. So sometimes you have to walk slowly down the path and other times you can run.
No matter when you get hit with the disability, either at birth or later on in life, there are some common issues. You are going to face depression, doubt, fear, uncertainty, challenges from others and challenges within yourself. To move through life you and you alone, are going to have to tackle each one of these charming little obstacles. Society will be a giant obstacle and your family might also be an obstacle. YOU CAN WIN provided you learn how to do so.
You are going to have to come to terms with patting yourself on the back for a job well done. You are going to have to celebrate the tiny victories along with the great victories. You are going ot have to learn to stand or sit tall and stand or sit proudly in life. I won’t lie it isn’t easy: it is worth it though.
I have a question for my readers. You know: all of you who prefer to read and not say anything: What is it like to be you? What is it like for you to travel through life with your limitations and your talents? What is it like for you to walk tall and stand proud?