My Aunt Hannah was just diagnosed with ALS, otherwise known as Lou Gehrig's Disease. Its very sad. My mother is from a large family of nine. Her father died young, also of ALS. I never realized that ALS is genetic. Now mom tells me her cousin Lucille also died of ALS. HELP!! This is scary! All I need, CMT and ALS. THat should be a super fun combo. ANyway, of the 9, only a few of them got married and have kids. Her second sister, Lea died a few years back, and had alzheimers before she went. Now another sister Ida also has beginning onset of Alzheimer's. For now she moved into my mom's small apartment until they can figure out what to do next. And than Hannah found out she has ALS. They are not that old! I feel like i'm still a little kid....They are in their 60s.
I asked my mom 'what did you say when she told you' What do you say when someone tells you they have a debilitating, progressive and fatal disease? She basically said 'oh no. Is there anyting i can do, etc etc'. There is a drug that supposedly slows it but still its such a depressing thing to get hit with. It got me thinking a little -- compared to MS, ALS and a score of other diseases, CMT is a walk in the park. Sure its challenging. But its not life threatening and most people that i know who have it are still living long, full lives despite it. I really go back and forth about this issue a lot.
Is CMT an awful annoying disease that might also dibillitate and degenerate my children also? Sometimes I feel like that and thats kinda what the research makes it sound like at times. But for me, most of the time, its just an annoying part of my life that is on the back burner, its like the fact that to drive thorugh my neighborhood i have to pass through the ghetto....I dont like it and I do have to work harder to socialize, but it doesnt really affect my life so much.
I think this is one of the reasons I am so against doing things that label me as 'disabled'. That would almost be like admitting that this is a pretty bad disease, one that actually is disabling me. I dont want to be disabled. I know if I was more confident about myself and my body this wouldnt bother me as much but im scared to go there because I dont want it to be any worse than it is.
Theres a comment going around social networking where CMTers are posting that goes like this:
• YOU DON'T LOOK SICK! No, I don't. It's hard to explain to someone when they have no clue. It's a daily struggle feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (Anxiety, Bi-Polar, PTSD, LUPUS, FIBROMYALGIA, Crohns, Diabetes, Arthritis, chronic back pain, Epilepsy, MS, Depression, or for Me, CMT). ♥
So I get why this commetn is good. But I really don't agree with it. I personally LOVE the fact that my sickness is not obvious. How wonderful it is to be normal and at least not stand out the second someone sees you. I'm sure people with obvious diseases would be thrilled with a chance to just 'fit in', which thankfully I've been doing for my whole life. I also am not the hugest believer of spreading the fact that I have CMT to the whole world for this reason. Let me blog, vent when I need to, and go on with living for 90% of the time. Maybe others have it worse but I really feel sorry for those who are so debilitated or affected by any disease that it covers the forefront of their mind most of the time. There are those that blame anything they have, from memory loss to the flu to a fight with a spouse on CMT. And what a shame that is. Lets let CMT be what it is. Get the suppport we need. But dont let it take over our lives. I remember as a single girl signign up for a yahoo group and running the he!! away when I realized it was non stop complaining and groaning. i dont need that. I do love connecting with CMTers on FB and the like cuz i get to see their awesome sides. Most work, are in relationships, have full lives despite it which I love following.
Now all that being said, there are some times I do feel all sorry for myself for this awful disease that I didnt ask for. Why me? Why do things have to be so difficult and drainign at time. My husband, bless him, does not think CMT is a big deal. He generally does not pity me or wait on me hand and foot and sometimes it bugs me. But in reality its the best thing in the world becaues it reminds me that its just an annoying thing, not someting I need to blame for things or not do things for. If i really allowed it, CMT could give me an excuse not to work, not to have kids, not to clean, travel, walk, exercise, go otu with friends, etc. And I do it all. And i think i'm pretty darn good at most of it too. I cant judge others who choose not too because CMT really does affect everyone differently. And I should never come to a place that I really cant do things because of it. But for now, its really good that DH doesnt coddle me because it helps me to push myself. When I do really need his help, he usually is there for me. But attittude in general is so huge in cases like this.
OK, that was a lot of jumbling and mish mash and stuff. Whoever prays, please keep my aunts Hebrew name in mind that her ALS should progress as slowly and painlessly as possible and that a cure should be discovered soon! (While you're at it, pray for a cure for CMT. And CF. And everything else...). Her name is Channah Henya bas (daughter of) Shaindel