I spent many years saying something was wrong. My earliest memory on the subject I was perhaps ten. I got blinding headaches, was stomach turning dizzy. I’ve never slept normally. My Mother tells me that started as a baby. As a young person I learned to adjust. It became a problem to hide from others when it became clear that no one believed me. Off and on it got so bad it couldn’t be ignored. Mom to her credit would try to get answers but there wasn’t much help for people that can’t pay for it.
As I got older I would just ride out these episodes by saying I had a bug, or I was tired from working too hard. That was easy to believe. I worked with children and I did work too hard. At around thirty I was ready to make someone hear me. The problem being that they weren’t ready to hear me yet.
I was suffering from depression. They medicated me for that and that was as far as they were willing to look. If you can’t understand it deny it exists. Good medicine? No. Common? Yes. The first doctor I worked with treated me as if I was a overly emotional woman. For years I didn’t go any further for the same reason my Mother hadn’t. I didn’t have the means to make them listen.
Over the last probably ten years it was impossible to ignore any longer. It started with pain in my lumbar. I couldn’t walk any distance without assistance. A cane or crutch at first. Even then it would come and go. At times feeling almost ‘normal’. I learned to deal with the pain or at least hide it. Over the last five years it became increasingly harder to hide. It was obvious to anyone observant enough to look. The ataxia the jolting movement and chronic fatigue.
As I had so many times before I went to my doctor . The family history of M.S. weighed heavily on my mind. My Father died from it, my Uncle did as well. My little brother was diagnosed at less than thirty with it. Cousins, Uncles ,Nieces and etc all with neurological issues. Her answer to me was rest more, we’ll increase your anti-depressant. I doubt it’s anything (Roll her eyes).
I didn’t give in ,I wasn’t giving up again. It progressed. Now I can’t hide it. The headaches, god the headaches were so bad I thought my head was cracking open. I tried again. Her answer? You’ve complained about this before are you sure it’s not your depression? THAT WAS THE FINAL AHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!
I’ve complained of it before therefore it isn’t a problem? WHAT? I admit yes I was depressed. Feeling like your body has mutinied on you will make you depressed. Being in screaming pain and having people behave as if you are lying will make you depressed. I can’t stand for long without pain. My legs got weaker, my back twisted with pain ,I couldn’t feel my feet but they always hurt. My joints felt like they were breaking. I told my doctor these things one last time her answer? I wouldn’t worry about it. My left arm is numb and I can’t use my fingers. I wouldn’t worry about it. Shake your hand until the numbness passes. Then the final event the defining moment.
I was in so much pain that Mom had to rush me to the e.r. Not once, not twice several times. They did x-rays, ctscans , M.R.I.’s. No answer but it was clear now I wasn’t insane I wasn’t playing for sympathy. I was in trouble. Something very frightening was happening. The e.r. doctors were at a loss to explain but they didn’t dismiss me. I went to two doctors they referred me to.
One a neurologist, one a internist a resident. The first the neurologist said yes it’s neurological. She was intelligent enough to admit she couldn’t answer the question of Why?. The second told me I was lying for narcotics and he could refer me to Adams Co mental health. I managed to leave without ripping his head off. I was sitting there in a wheel chair in pain that the narcotics didn’t even touch and he was using the party line. ( It’s All In Your Head)
Turns out he was wrong in more than one way. I wasn’t faking, I don’t take narcotics now and it wasn’t in my head. The neurologist helped me get Medicaid, then she helped me get answers. Suddenly they were interested because they could get paid. She referred me to a neurosurgeon. He sat down with me and thinking I knew what was happening. He explained a surgery that he said would help with some of the problems. I was dumbstruck. I left the appointment with a dear friend too shocked to speak. No one had even given me a diagnosis. Two weeks later Mom and I met with him again.
Now he was aware that I was totally uninformed. He explained with extreme patience. I have a congenital defect of the spine. Surgery would help some of the pain and a few of the issues . It was enough to be worth it. By then the numbness in my arm that I shouldn’t worry about was full blown paralysis. My left arm would no longer move. My left leg might as well have been gone.
I wish I could say the surgery made me whole. I wish I could tell you it’s all better now and I got on with my life. The truth is I am a paraplegic. The good news if there is some is both my arms function now. I can use a wheelchair rather than a electric scooter. The pain while still with me at times is usually manageable. It’s not the end of the story, or even the end of the medical fight. It’s a good start. I have some answers. Best of all being that I can say with all sincerity that it’s not in my head.