Another December

Every year at this time I get a little depressed and kinda frustrated with life. It’s no wonder when I had to file for disability on December first and my birthday is the 11^th and then there are the holiday and finally New Year’s Eve. It marks a lot in my life that I am missing out on and will never get back and while that seems small in the scheme of things it just marks another year that I am missing out.

I will never forget the November I passed out at work for about half an hour and was sent home in a car being told “this was not that they signed up for” as my butt was not so politely pushed into the town car that would take me home and not “return me until I could do what they wanted without being sick.” It was like I asked for this ridiculous disease and all the hiding in the bathroom and gossip I could clearly hear about how pale I looked or non-peppy I was being when I hid behind closed doors in my office looking over 42^nd street in NYC. God, I have never felt so crushed in my career as that day when it was made well known throughout that this was not an example of a good employee. As if I had any say over the matter! My heart breaks to think I could have worked for a healthcare company that was kicking me out for being sick, not making any amenities to work from home partially when I could under the Americans with Disabilities’ Act and then fired me promptly for being sick too long. What a bunch of snobs and I hope they never have to go through what I have been the past four years.

This year I found out on the same date that I would not be having surgery and December 1^st was another emotional letdown for me. Another year I would be further from a cure or answer. It is as if I want them to “cut me open and find the golden key or reward that says this is it, you may now have your life back.” It means another year of being labeled disabled and another year without a penny to put in the coin jar for my vacation. And it means the possibility of having another year pass by with the same results as last, while I hope this is not true, when you have been through as many as me it is hard not to think about it for a second. To let your heart break for a second and then try to pull it back together. To have to find all new docs and specialists because the last 50 let you go by without a word of wisdom so you can try to find the next diagnosis and chase it down with a cure. And then, you have the people who think it is just another phone call but little do they realize that people are turning me down because of my complications. And I have to make a dozen calls to one office trying to explain my situation which they will then schedule me an appointment for months in advance or will see me quickly but also shove me out the door like a heap of trash since I “scare them.” All of this adding up to more calls and emails to friends of friends than one can imagine. This time it was about 100 emails and 50 phone calls to get one doc to take a look and it turns out they might not treat me because they don’t take my Medicare…what happens to people like me where your medical bills exceed you Social Security but they say your Social Security is too high…no it’s about 10k too low at least in a non-surgical year. Where do people like me fall in or where do we get help since no one actually wants to look at your bills and your debt that needs to be made to try and live. Literally to save a life. Maybe this year I might not make it to next Christmas or December 1^st, who knows at this rate the date to expire is gonna come sooner rather than later.

So then swiftly another birthday goes by on December 11th. I started this on my 29^th year of life and am now 34…where are the years of celebrating your career accomplishments and your love life…I finally have a love who takes me as I am and I can’t even enjoy him because I feel guilty for yet another year gone by and asking him to wait some more. It’s sad enough for me to miss out on life but it is even sadder to watch someone you love do it because leaving you would be bad or because they think you will get better because you have the spirit to do it. It’s exhausting all this guilt and all these letdowns. I am reading books about people in similar rare disease situations and while we can find comedy and light people do not want to read our books and know about our situations because they would realize we are real people. Instead they like to make you feel bad because you feel asleep during a visit they made to your house. I can’t help it I am emotionally, physically and mentally exhausted. What am I supposed to do since I don’t look that bad on the outside – tricks? Maybe they could read a book or two and realize we are the same people we just got sick. More on this later and I know I have said stuff about it in the past but people need to learn how to deal, I did and I am not even ready to deal with dying or making these type of decisions. Perhaps I should let them make the decisions…or pay my bills which even I can’t make the minimum payments on anymore. Nor can my family or anyone in my life so don’t even go thinking that…but people forget this has real life consequences beyond the physical and emotional tolls.

And then the holidays come in all their bright colored lights and glory and happy songs and all I can think is will I see another? I wish I could be going on a cruise or skiing for a vacation right now. And while I am positive this time of year sucks it out of you. People also expect you to drag your butt to holiday dinners and act normal…but you can nap too…and in reality the trip is enough to put you down for the day and you get no enjoyment. The pressure here and guilt is fun as well and makes me want to crawl in a hole. I want to hibernate with the bears, at least they won’t wake me up or ask if I have made dinner or brought gifts wrapped or have I done all my decorating. Another year of not getting what I want from Santa…a cure or at least a diagnosis has passed. What want is not that hard but it seems miles from what I am going to be able to get any time soon since I have had to start all over again with a new set of docs.

So when it gets to be December and you hear of the people (healthy ones) botchy and moan about how they hate the holidays or this time of year or whatever they want to call it…I want to reach down and sock ‘em with a snowball and say get out of your mood Scrooge, at least you have your health and could do anything you please but don’t have the guts to do it…get some and do it! Think about those of us who had to go for medical tests on Christmas Eve since they need them done as soon as possible or even the days between the holidays because you need to have them done. Remember how tired and guilty you make us feel when you want us to drag our unhealthy butts everywhere and expect us to perform 9act healthy) for their holiday enjoyment (aka – so you don’t ruin it for them by making them think about you being unhealthy because sick would be a bad word to say at this time of year.

I’m exhausted and honestly I just want to enjoy a small Christmas and watch movies all day and think about what I want and take a nap and eat a nice meal and nap while cooking it of course. But it is also the time when bills roll in like snakes and bite you in the butt…

So with that said, my thoughts go out to a couple of good friends who recently had bad news about a family member and all of my sick friends who know exactly what I mean when I write this…not in mean-spirited but hopefully to open a few eyes and change Christmas celebrations for a few by reading this. I do love this time of year and the fact my illness seems to overlap with it is another torture that I hope I will not have to repeat…

With that, good night and more later as I am feeling inspired and will be writing a great deal this holiday season – and yes some of it with the dark humor so many in my writing class enjoy…’Twas the night before Christmas and all through the house not a creature was stirring, well except me!