Browsing through my comments, I could not ignore the first anonymous comment on my last post. Normally I never pay attention to others' negative opinions (I know my humor and point of view are not every one's cup of tea) but I am thick skinned and I don't want anyone to read that comment and feel bad about themselves because of it. Our healing processes are as varied as this disease is. That commenter has had MS for longer than I have been alive, and if, god(s) willing, I live with MS for that long I hope I will (never) give such sage advice. I respect every one's right to have an opinion. I respect every one's right to heal in their own way in their own time. I also respect my own right to keep to myself what I do for others and in what ways, if any, I give back -- I have a bad reputation to uphold here. One of the most damaging things for me after being diagnosed was such misguided advice as that comment was. It made me feel even worse that I hadn't come to terms with MS yet. Never let anyone ever for ever and ever and never for ever tell you how you should feel EVER. Let nature take its course and don't force what is unnatural. And if you get any detrimental advice, advise them to stick their advice... on their pillow so they can cuddle with it all night; I have found that a great place to store unsolicited advice. I am going to assume they meant well (they caught me in a good mood -- there was no diet ice cream left, only regular. "Oh darn! Guess I'll have to eat it anyway!") but adding guilt to this disease is making the burden too much. I had a stay in the loony bin and the scars on my wrists to prove it... but that will be my next post. Until then may your freezers overflow with full fat and calories (which we all know means full flavor) ice cream and keep healing in your own way. XOXOBlindbeard
I think the hardest part of having this disease is how it has changed the way I see myself. I feel so broken down and old and tired that I can't imagine anyone would want to be a part of my life. My family disagrees. They think it is time I rejoin the human race and get over having MS. I know most people would not care that I have MS, but it is so hard to put yourself out there and risk running into the few that don't have 2 brain cells rubbing together and think you are contagious.
I have fallen into a cycle of anti-social-ness that I am struggling to get back out of. For the longest time I would not wear makeup or any clothes that might give someone the impression that I am a girl. And to this day I would rather caulk my bathtub than have to go out to a hip and happening place. I do not fit in at hip and happening places. My scene is the slow and sipping on a soda places. I frequent the library so much the people at the front desk know me and know that I didn't hurt my leg. I wanted to shave my head for a long time too. My husband, which I am now separated from and going through a divorce with, didn't want me to shave my head. I thought a mohawk would be very fitting for me. It says, "Stay away. I want to be unattractive and I don't want to tell you the minutest details of why I walk this way." But he was very accepting of some of my other anti-social tendencies so I figured I could compromise on this one issue. Besides, he works for Union Pacific RR and is gone about 60% of the time and he didn't care what I did when he was not home. And what I did when he was not home involved some beautiful wigs of the mullet variety and in a rainbow of colors.
I toyed with the idea of getting a big repulsive tattoo, because I knew many people are repelled by such things. I didn't do it and I am glad. Having a 10 year old, I don't want to be too out there for her sake. I am hopelessly uncool as it is and I didn't want to make it any worse. I used the term "chillaxing" one day and she was mortified. She said my saying it made it uncool. I know that to kids we are terminally uncool and know nothing, so I really didn't want to make her even more embarrassed of me. Don't get me wrong, I am thrilled that I am not cool to a 5th grader -- I am not aspiring to be cool to 5th graders, for some reason that is not a big priority for me -- but I do not want her to be ashamed of me, and that is where I have to draw the line.
I am having a really hard time putting myself out there again, but I am taking small steps towards overcoming this reluctance to join society again. It is a major breakthrough that I even want to try. For a long time I didn't think I would ever want to be recognized as of the humanoid family. It is hard and I get very insecure in public sometimes, but I keep reminding myself that I would not think someone lesser than human with the same problems as me, so I should give others the chance to show they are the same way. This has been a harder thing than I thought, I feel like a hermit crab without its shell -- but I suppose that is how it is supposed to feel.
For my next few posts I want to address some issues that I had when trying to come to terms with having MS. They are not pretty, yet I cannot believe that I am the only one who went through some of these ugly stages. And in true Blindbeard form, I am willing to talk about the stuff others (sometimes that includes family and friends) don't want to admit to or talk about. I went through some stages that were totally out of character for me, against my basic beliefs and those of society in general. But I refuse to be ashamed of how I coped or the things I did, I would rather look at them in context and realize that they may be a natural way for me to deal with the anger/depression/sadness that came with this disease. Consider yourself warned, and if nothing else I hope a few people can relate and hopefully get rid of any guilt they may be carrying around for the things they did at one of the hardest times in their life. Its funny how we are so much quicker to forgive others instead of ourselves, willing to look at the reasons they acted in a certain way, yet not give that same consideration to our self. There is no shame in my game, as you will soon see!
Gimp's Log. Stardate, who knows? After attending a recent court hearing to determine whether or not I am able to work, I have been able to established that there are no intelligent life forms working for the Social Security Administration. Upon submitting my current status as a certified gimp and showing evidence that I am a deeply depressed/anxiety ridden/disturbed gimp, they still felt that I would be able to be a "bagger," of which I could not help but snigger at. These strange life forms felt that even though my right side is seriously impaired, I can't stand for very long, can't walk very far without support, cannot lift much weight if both hands are needed, and my vision is foggy and dim, I would still be able to bag their groceries. When shown that I would be unable to work even a month straight without calling in, they had to concede that maybe I would not be able to bag groceries. Due to the teleconferencing nature of this hearing, where both the judge and I were on TV screens, and with my short attention span, my focus wandered and I was more interested in the roundness of my face on TV. (Note to self: do not pursue a career in television.) Luckily for me the chairs were of an extremely hard and uncomfortable nature, which added to my leg cramps, overall stiffness and caused me to liss to the right side even more. If the chairs had been of the La-Z-Boy nature I would have been comfortable and looked better than I am. Adding up all the evidence I have been able to conclude that 60 to 90 days is a long time to wait to see what these... creatures final decision will be. As my observations showed limited practicality on their part, I can only hope for the best and not start looking for a job as a bagger -- especially as I am sure no employer wants a bundle of liability trying to bag groceries for their customers. This concludes my status report and unless proven otherwise I must stand by my original conclusion that the Social Security Administration only employes those that are shortsighted and always looking for a way to deny deny and hope they die.
About my second year after being diagnosed, when I still went to MS walks and such, (before I realized that I really didn't enjoy them) a woman, who is the head of the MS group in the town I lived in then, said something to me that stuck in my craw and has been lodged there ever since. While we were talking about this disease and all it encompasses, she said, "At least our husbands are still with us." Now, I can't speak for everyone, but the day I am thankful that any man "stays with me" is the day I start laying eggs and hatching my young. Yes, I have a disease that does not have a happy ending, but why should I settle for any man that will just stick around anyway? And I'll be a vermiciousknid's uncle before I am grateful that he is with me. Frankly, that kind of 50's housewife mentality is so opposite to everything I believe in (and she was much older, so I had to cut her a teeny bit of slack -- she was probably raised to believe that crap) that I just can't relate. I refuse to settle regardless of what is wrong with me. I would rather be alone the rest of my life than have to be thankful to some man for gracing me with his presence. If a man cannot see past what is wrong with me and see what is right with me, I have no interest in him. And I certainly will not be tickled purple because some man showed some interest. If he thinks he is doing me a favor by looking past my disease, he can stuff his good intentions up his ol' wazoo. I hope no one with any disease (or any kind of physical problems) ever settles for someone just because he will let you worship him for being with you. I'm a dumb beeotch, but I ain't that dumb. Accept all of me, or leave me alone. Now if you'll excuse me I am off to hatch my young.
In general I don't like to speculate where someone goes after they die, but I feel that Hitler is a sure bet. To my overwhelming shock/surprise/elation I am finally going to get my day in court to argue whether my disease is disabling or not. I go to court in 9 days, and I am as calm and relaxed as an iron bar. Due to the vast number of people filing for disability, I will be doing my court date via satellite with a judge in CA. I was reading about the average time it takes to get a court date, and I think it was somewhere around 550 days. I am over 800 right now. They said they are trying to get to the requests that have been pending the longest, which should have moved me up a little more, but what do I know? I was also reading about the whole disability process and some one who had worked for the claims department said it was all about, "deny deny and hope they die." While that makes me mad, I think there is a lot of truth to it. I went through the first 2 denials as quickly as possible because I just wanted to get to the point where I could get a lawyer and get this thing moving. I filed for a court hearing in March of '06, and am finally getting my day in court. I have been fighting disability for over 3 and a half years! (!!!!!) If you are not one of the few that has such a mild disease that it hardly, if ever, affects you, I would suggest filing for disability ASAP. It is such a llllllooooooonnnnnngggggg process that you will need to be able to wait and try to find a way to survive. I feel like it is waiting game, they want to see how tenacious you are and see who will give up first. But they are gambling with the wrong crackpot here. I know I have a legitimate claim and I am not going to just gimp away from this. Even the lady in the SSI office told me to not drop the ball on this. She said they would deny me and try to drag it out so that I would let it go, but not to give up because MS is a progressive neurological disease (I already knew this, but she was so kind and the advice was so welcome, especially coming from some one who worked for Social Security, that I thanked her as warmly as I could). So after this long and frustrating wait, it is finally nearing an end, and all I can think of is Hitler trying to find a partner so he can enter the pairs competition.
Side Note: One of the best parts of this whole crappy thing, is the jobs they come back with that you can still do. They told me that I was still able to work in retail. Never mind that my balance is off kilter, or that my right leg is numb and stiff so I limp, or that I can't walk very far without some kind of support, and my vision has "lost acuity," or that no employer would want me because I am a gimping liability, I can still do retail work. Whew! Glad they know more about my physical condition than my neurologist.
I must be a glutton for punishment; there is just no other good explanation for it. Every now and then I venture out of my dark hole to mingle with other MSers and it has never failed to irritate the shitakii out of me. I don't know why I do it. I think I am still holding out hope that I will find someone like me, someone who isn't pooping out rainbows and unicorns over having MS. Since being diagnosed with MS, some 3.5 years ago, I have only wanted to talk to some one about MS and all its implications realistically. Alas, my search continues. It seems that all I find are those who want to make it seem better than it is and sweep all the bad under the rug, which I can't help but think that must be one big rug. I'm not saying it is all horrible, or that it is the worst thing in the world, but why can't we talk about the negative once in awhile? I want to talk to those who have hideous, overwhelming depression that requires large amount of antidepressants, like me. Or those whose MS has been so aggressive that they have hardly had a chance to take a breath between attacks and have never recovered fully from any attack. Where are those whose life as they knew it was ripped away and they are still trying to piece together a life out of the tattered remains? I want to mingle with those who are willing to cancel that mattress order because we are not going to take this lying down. I want to do the things that I am not supposed to do; blow the lid off of anyone's assumptions about what a person with MS is supposed to be and be the opposite of what they expect. I don't want to link arms and sing Kumbaya. I want to sing, "I hate everything about you" with like-minded MSers. Being a true child of the 80's, it makes me want to spout off a bunch of uncool quips from that golden era, hence the name of this post. The only good thing about all this is that it fires me up and reminds me to keep up the good fight and continue not being what people think of when they think of MS. Now I must go gimp through some stores and tell the people who ask what I did to my leg that I have explosive diarrhea and if I don't lean to one side I'll sh*t my pants. Hope your day is as good as mine promises to be.