I know I talk a lot about my health lately, but 2010 and 2011 have really impacted my life and opened my eyes to goals I must accomplish in 2012.
After my first partial complex seizure and subsequent diagnosis of tuberous sclerosis in 2010, I had profound weakness in the right side of my body. I was discharged with a walker, and my doctor instructed me I couldn’t drive and I should apply for a handicapped placard for my vehicle.
In 2010, I was confident of my recovery and eager to attend physical therapy which would help me to walk again. I was sure that the handicapped placard would be temporary, and I indicated on my application I would like the temporary rear view mirror hanger to only last 3 to 6 months. My neurologist, however, felt differently: he played the “what ifs” game.
- What if rehabilitation took longer than 3-6 months?
- What if I suffered another seizure affecting my motor skills?
- What if I never fully regained my ability to walk?
He changed my checkmark to permanent while I was left to consider his warnings.
I remember leaving my doctor’s office depressed. Automatically, I earned the label disabled, at least by the DMV. What if this was going to be my reality for the rest of my life?
After 10 months I was walking with a cane. I had a few bouts of stuttering and multiple atypical absence seizures but no major seizures. I asked my neurologist if I should apply for federal disability or continue my search for a job. He told me to look for a job.
I started working in December, and within a month, I was back to using my walker. I often became confused and frustrated. At times my speech was slurred, I would say the wrong word, or I would mix words together like a word salad.
Four months after I started working, I experienced a second partial complex partial seizure; in June, a third. In addition to the tuberous sclerosis, I was newly diagnosed with conversion disorder which explained why I was now unable to speak or walk.
I was simply not ready or perhaps unable to work, and it was time to consider disability.
I certainly won’t say it was an easy task, but I was able to secure state disability and then federal disability by October. My attorney claimed his fee, but I still owe him a million thanks. While I now was earning a stipend and had medicaid, I also had realized my worst fear: I was officially disabled, not just to the DMV, but now to everyone.
As I reflect back on 2011, I am reminded of the optimism I had leaving 2010. I was working and walking with a cane. Things could only improve in 2011. But, there was no improvement, only deterioration. I am still unable to walk or speak, and my depression and anxiety have increased to an almost unbearable level.
What can I hope for in the future? The optimism I once had has completely disappeared. I can only ask for the simple things: to be financially, emotionally, and physically healthy.