Living with Narcolepsy

My name is Shane , and I was diagnosed with Narcolepsy with Cataplexy in 1990 at the age of 18 shortly after dropping out of school. I live in Wisconsin, and I was married about that same time, and we had a child. We ended up in a divorce, we shared custody but she ended up with placement, and the state awarded her child support.

I made a small protest to paying support because, even though I didn’t notice, my Narcolepsy was severe at THAT time and we were just starting the years of medication switching and things like that but there were already times that I was not able to do anything. I even had a doctor write the courts a letter, but to no avail, too poor to afford a Lawyer, was ruled against ending up with payments due weekly at the rate of 17 percent of Minimum Wage while working full time.

I was told that if I have Excessive Daytime Sleepiness, I can go and work a night job and pay support that way. I agree that support is deserved, and NEVER said that I wouldn’t pay, I just wanted them to understand that at times I would be incapable to work or even socialize, but they don’t care because what I have isn’t a disability. I have also in the past tried applying for Disability in Wisconsin and Michigan when I lived there too. Michigan was going to approve me almost immediately, but without people like family being there to help me at times, I couldn’t stay there on my own and moved home to Wisconsin. Wisconsin Disability turned me down flat because Narcolepsy “can be controlled with medication”. I have a pretty severe case of Narcolepsy and I have developed many other symptoms that coincide with this disorder like Sleep Paralysis, Hypnagogic Hallucinations, and Automatic Behaviors over time thus, as many of us know, prevented me from working for periods of time here and there. Child Support in cooperation with the State of Wisconsin, are now charging me with “Intentionally not paying Support for more than 120 days at a time.” This is, in Wisconsin, a CLASS 1 FELONY!!! They are charging me with 4 counts of this yes, 4 COUNTS!! Each term carries a 3 and ¹/₂ year sentence IN PRISON. not jail. PRISON and or a large fine; it is in the books as Wisconsin Stats. 948.22(2).

My problem is this I’m being charged with INTENTIONALLY NOT PAYING! If my life has proved anything to me, it is that Narcolepsy is what I have to work around, and I am a slave to my body. Wisconsin has until recently had no state medical help for males between the ages of 18 to 65 without children of their own living with them in their household. I was told by one worker, “You should just be normal, and if your not just act like it, because you won’t get any help from us.” But now that we have Badger Care Core Insurance, trying to find a doctor is a GIANT problem and I am not the only person having this issue either. I have talked to a worker by calling the number on the card, and he said to call around if I can find someone that will take it they will pay for it, but as it stands there are no lists of Providers available for recipients of BCC. My life is a series of “catch 22’s”, and I am at my wit’s end. My family has paid for a retainer for a Lawyer to help me, Robert J. Sisson but he seems to think that if they put me on probation it is an acceptable punishment and he told me I should have convinced the courts years ago that Narcolepsy was like this, and seems to be ok with the fact that they don’t care about that. Well if the sentence of 14 years isn’t applied and I get probation, I would be looking at something like 25 years of probation. This means holding a job constantly, and jumping through legal hoops for the next half of my life, or I go to prison!! I would rather DIE thank you!! I am NOT suicidal, probably depressed, but I wouldn’t take my life because I have issues with my life and the way it has gone. But if I have to go to prison Suicide looks like a better choice! I will not let them punish me because I have a condition that prevents me from living like a normal person! Have I mentioned I was already in jail, and served a 6 month sentence due to all of this child support stuff? Yep, and I have spent the FIRST 36 years of my life staying out of trouble with the law, and out of jail. I have NEVER remarried and only have one child, my son, whom doesn’t even talk to me because he thinks various things about me due to Narcolepsy, and people filling his head. He has JUST turned 18, and I didn’t even get to see him or talk to him on his birthday. It’s not like I have gone out and just kept having kids, and refused to pay my support, I just wanted some UNDERSTANDING, but NOBODY UNDERSTANDS!! I am currently on a $10,000 signature bond through Winnebago County, and court is up again tomorrow, Tuesday October 20th 2009. I have no idea what is going to happen to me, but I needed to write someone and tell them what’s going on and see if there is ANYONE out there that can help me or direct me to someone that might be able to help! I mean really does this sound like it’s unconstitutional to anyone else?!?! I will be sending copies of this to a LOT of places because I don’t want to re-type it over and over. It has taken me a whole day to write this on and off.

I would like to say to anyone reading this: Judge me however you want. My life could have been many different things with or without this crazy condition and my choices that led me here weren’t always based on “giving in” to my condition. I have tried MANY things and failed, and also left many things unfinished out of fear of failure yet my life isn’t full of failed attempts as far and few between the successes might be. Narcolepsy, TO ME, is a HORRIBLE condition to deal with, and VERY disabling because I never know what to expect both ON and OFF my medication. Nobody understands what it’s like to live every day not knowing if you might actually be able to watch a whole TV show, or sit down and hold a conversation with a loved one without nodding out or sometimes if you can eat dinner without falling asleep chewing your food. Try having to live your life without FEELING anything, because the actual act of feeling laughter, or anger, or surprise or any number of feelings could make you drop and wake up on the floor. I have lost many jobs, and yes I have gone long periods of time without working, but LAZY I AM NOT. MISUNDERSTOOD is what I am! Now on top of all the rest of the things I might or might not be we can add CRIMINAL to that list, because it sure looks like I am headed for a State Prison, all because I have a Medical Condition that is just as common as Parkinson’s Disease or Multiple Sclerosis and Cystic Fibrosis and JUST as disabling to ME!! But the people that sit and make decisions for child support in my state don’t care about these sort of things all they care about is that I am a man that was in a failed marriage and we had a child, so therefore I HAVE to PAY NO MATTER WHAT, or I am what they call here in WI, a “DEADBEAT DAD” regardless of circumstance! I am NOT a deadbeat, and I am not LAZY. A good day for me is filled with FATIGUE from awake until bed time, and a bad day is one where I might be able to stay awake for an hour straight regardless of what is going on around me. As of late, I have more bad than good by a large ratio. I have lost too many friends to count, and the ones from my past I have re-connected with on the internet, I am too embarrassed of myself to meet with or talk about “LIFE” with. I do not talk to much family because I’m just a lazy bum in their eyes, and the ONE that tries the hardest to understand me is my Mother who is not so healthy herself, but even she has her limits of what she can understand and gets frustrated with me also. I have not had a successful relationship, and many of my Ex’s have me pegged as a “loser” or “having no future” or “LAZY”, and after almost two decades of failed relationships and getting cheated on I have given up on them also. I have enrolled in ITT TECHNICAL COLLEGE currently pursuing a Bachelor’s Degree in Video Game Design, quit smoking, and have learned a lot about computers in the last couple years. But all for not, because now it looks like I will be spending my life as a 4 time Felon possibly behind the bars of a prison, so there goes any job I might have had and no more school loans to finish college. I’m feeling very lost and alone, I can’t seem to focus, there is always some dark cloud looming over me and I have no vision for the future. My life is over, and I don’t wish this kind of thing on anyone. It’s a crime to punish people that have legitimate problems whether the courts seem to think so or not. And I’m writing this to tell you, that Narcolepsy is one of the Legitimate problems that are being overlooked! You can make this letter as public as you wish. I can only imagine in horror how many people that suffer from this have gotten “punished” in the past for any number of reasons that were beyond their control! Just remember I’m getting it for “Intentionally not paying” even though that’s not the case. And will they convict me without showing proof? Probably!

Thank you for taking the time to read this,
Sincerely,
Shane