I remember that not too long ago, someone posted on Facebook a video of a young woman who was born with no legs – who through hard work and determination had managed to become a professional gymnast and was able to be employed as a gymnastics instructor. There were a ton of ‘Likes’ and comments along the lines of: “If she can work anybody can, these people who say they can’t work, need to look at her and then….”, and comments like, “I am sick of all these people who complain about their illnesses and say all the things that they can’t do…”. Maybe my hearing a lifetime of comments such as these is why I probably downplayed my symptoms to doctors. Also, hearing other’s opinions about disability is probably why I have huge fears about the disability process and guilt (maybe some shame too).
I put on my best face in front of friends and especially my wife’s family and parents. They sometimes noticed that things didn’t seem right, and would say things like: “You look tired!”, “Did you hurt your leg again, you’re limping?”. I would smile and say,”I am fine”. On one occasion, we did tell them that I had Parkinson’s, but they either forgot or dismissed it, seeing me on other visits appearing more normal after my Sinemet was initiated.
A few months ago as I became more aware that my abilities and my job was crumbling around me, I resisted the idea of going on disability. “I am young, and look fine.” I sent out a massive amount of resumes and job applications. Nobody called. It was if there was a file on me somewhere that said, “This guy has Parkinson’s and is struggling – please do NOT hire!”. Maybe, I was somewhat selective in what I applied for – after all, when you see things like: “frequent travel required, must type X words per minute, must be able to have good organizational skills”, then you get kind of disheartened. I had even told my movement disorder specialist doctor that I was going to fight this, that I was going to find a job, and he supported that with a “good, it is best to do something, anything, that you are able to do”.
I also imagined these hypothetical situations, such as not being present when one of my wife’s family members were visiting with her parents – and them saying to them something like – “Well, I hear that he is saying that he can’t work, because of his alleged Parkinson’s – he has your daughter convinced that he is disabled now.” At which, I fantasize my wife’s father saying: “Bologna! He can too! He needs to find a job!”. Or picturing my wife’s mother looking concerned at my wife and saying: “Is he really not going to work? How are you all going to make it financially?” Then, there is my daughter, who always needs clothes and items, and who sees me as an invincible strong abled guy, I know that she will be sad, angry and react upset when I tell her we can’t afford for her to dress to her standards of her friends.
For these types of reasons, I resisted the disabled word. Even prior to really getting in to researching what forms or documentation I need to start the process, I had a stream of guilty thoughts: I am going to have to play up my symptoms. I lost my job because of my boss and hours cut. Have I become lazy?
Then, when I actually started documenting, looking at the questions, looking at forms and requirements online. It dawned on me: Wow, I really can’t write. Wow, I really did have to have major assistance at work. Wow, I piss my pants at work all the time and have to interrupt my sessions with clients to run to the restroom. Wow, I can’t stand very long. I don’t get sleep. I can’t operate buttons and coordinate machinery. I do require frequent rest breaks! My condition is not going to improve in 60 days! I am not retrainable, how could I focus or take courses if can’t write, type notes or remember crap!
Then, the terror hits: Will my doctors support this? Will I go through all my withdrawn retirement before I get approved for disability benefits? Will the government even approve me? What if I can’t survive financially?
Keep in mind I am a highly self-conscious person. I currently have bronchitis – which, for some reason, whenever I catch a virus or get an infection, it seems to nullify my PD meds. I tend to carry this guilt/shame (which I have told clients for years not to do). For example, I will only park in a handicapped space if there are plenty of these spaces available and I am truly in a bad place at the time with being in an “off’ time of medication effectiveness (and yes, I felt guilty about getting that parking tag too when I was given it by my doctor) – yet, even with my bronchitis, shortness of breath, and pain in my feet, I feel like I am committing a crime by parking there. Guilt and shame!
So right now, I am at the mercy of my doctors and the government in getting disability approved. Meanwhile, I have to hope that I don’t owe big on my taxes this year, also – that no cars break down, and that life cooperates.