I find that as much as I try to share, that I have a hard time articulating what "a day in my life" truly is like. So I wanted to share what I found in a fellow MSers Facebook page, 'cause even though I didn't write it, it says so much of what I want to say. He's also from my tiny town of Fairfield and he's the 3rd (including me) person I know from there that has Multiple Sclerosis. Coincidence? I think not. My friend Christine, a fellow MSer was sharing info about a study she read about the possible cause for MS. She said that even though I'm Hispanic, and we're not known for suffering from MS too often, that the study said it could be all about having the pre-disposition to have MS and where you live for the first 15 years of your life. That got me thinking, since I moved from Peru to Iowa when I was 11, and then developed MS by around 19 (even though I wasn't yet diagnosed my numb torso said it all, I just didn't know it then). I've always considered Fairfield my safe haven, the place where my family and I went to when the crime in Lima got to be too much (that's a whole other story for another post ;-) ). To think that my safe haven was also the cause for the worst thing in my life is a bit sad to think about. Who was to know that I had this pre-disposition, surely my parents wouldn't have moved us to a place with such marked seasons had they known. All water under the bridge I suppose. But I'm left with dealing with the awful remnants of a decision we had no idea might define my life. There really is no point in obsessing about this fact, I just thought I'd share this tidbit with all of you. Please see below for the letter and poem that say all that I've been unable to say:
LETTER TO "NORMALS" By: James Carmack
Having MS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident , most people do not understand even a little about MS and its effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me. Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with sometimes, but I'm still me stuck inside this body! :) I still worry about work, my family and friends, and I'd still like to hear you talk about yours too. Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, now imagine that I've been sick for years, though luckily I'm not in pain 24 hours a day every day (thank God!). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy, that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, your sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome to. Please understand that being able to stand for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour, and just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what MS does. Please understand that MS is variable, it's quite possible (for me, its common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes, may frustrate me to tears. If I was capable of doing these things , don't you know that I would? Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously MS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, MS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it can't be put off of forgotten just because I'm out for the day (or whatever). MS does not forgive. In many ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you . ...and, as much as it's possible, I need you to understand me. GIVEN TO US BY SOMEONE WHO FOUND THIS WRITTEN BY A FELLOW MS'ER
A GOOD DAY Poem by: Kimberlee Waag
Because EVERYDAY can and will be A GOOD DAY!
Everyday I can hear 'I love you, mom" is a GOOD day,
If there comes a day where the pains too much, then
Everyday I can feel a hug from my husband and kids is a GOOD day,
If there comes a day where I can no longer see, then
Everyday I can still watch my boys grow and play is a GOOD day,
If there comes a day where I can no longer walk, then
Everyday I'm still walking is a GOOD day....
So yeah, I am in a bit of a nostalgic mood today. I am tired of my legs giving me problems, I miss the days where life was easy, but today I can walk, see, hear, feel, speak so today is a GOOD day :). But that doesn't mean that I'm throwing in the towel. I will never stop fighting for a way out of this mess. I know God hears my cries and I feel him closer to me today than I have in a while. It seems that when something brings me to my knees that God takes that time to remind me he's right next to me, always. Makes this so much easier to deal with, I am TRULY not alone in this. :)
Happy on a Monday and with MS crap piling up, go figure! :) Stay tuned for whatever else my crazy brain conjures up. :)
2 comments:
I feel lucky because, by comparison, most of my days are good days, physically and in other ways. But, as these other MSers shared, it all depends on the day. I have problems at work, because they expect the same level of work from me however I feel. That sucks. Giselle, thank you so much for sharing so much information about your own situation, and borrowing the words of others to connect us all. I hope today is a good day for you, my friend.
I am SO happy to know that I'm one of the few, not the majority (out of my friends at least) that has to deal with MS at this level Adriana! I don't wish this on my worst enemy let alone my friends so it is GREAT to hear that you can't relate to this. I hope you will NEVER be able to relate! :) Today is a good day 'cause I choose for it to be, I only have control over the way I react to life. So we are all gonna have a great Monday and a great week. Hugs to you amiga! :)
Post a Comment