This is a copy of the speech I gave tonight during the RAMS (Rockin' Against Multiple Sclerosis) Speakers Forum. Honestly, I think it is written better than I delivered it... :)
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Hello! My name is Emily, and I am from Kansas City. I work for Reigning Grace Counseling Center, a biblical counseling center in KC. I am working on my certification to become a biblical counselor… slowly. J I am finding it is difficult to read a book and turn around to write a paper these days,compared to the paper writing madness of college!
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Hello! My name is Emily, and I am from Kansas City. I work for Reigning Grace Counseling Center, a biblical counseling center in KC. I am working on my certification to become a biblical counselor… slowly. J I am finding it is difficult to read a book and turn around to write a paper these days,compared to the paper writing madness of college!
In August I will hit 13years of living with a disease that everybody knows so much about, yet nobody has a clue what causes it or how to fix it. It is unpredictable. It is random. It can be vicious. It can be annoying. It has been my biggest blessing and my greatest nemesis, all at once. I will explain that more as I go.
I’ve lost count how many times I’ve stood up here in front of untold amounts of college students, grasping at straws, trying to figure out a way to explain to you what living with something like MS is like. For some of you, those of us sitting up here onthis stage are the first people you have ever seen with MS before. For others of you, you have family or friends with it—maybe one of you out there has it yourself and you’re afraid to tell anyone about it, or you’re just afraid of public speaking, which is why you’re out there, and not up here… I understand that, too. I have learned that my life is not my own, and the things that happen to me are often for the benefit of another. That’s why I’m up here, and hopefully a little bit of my story will help you understand it a little more.
You’ve heard a LOTabout MS over the last half an hour or so. Either your mind is on overload mode, or you’ve not heard a word yet because you checked out at the first “hello” and you’re thinking through your routine for Rock It. Before you get up on that stage and dance, though, I want you to think about what you’re doing as you get up there and raise money for people with a disease that doesn’t necessarily make a lot of sense to you. Every step you take on that stage, every move, every jump, every twirl or whatever you happen to do, you are doing something that I struggle with. When I twirl, gravity helps my face meet the floor in very… artistic… ways. You’re doing something that a lot of people with MS cannot do. I could do this (a little more successfully, at least… without fallingover my own two feet) when I was 18, sure—I think there are a lot of you out there who ARE 18 still! Think about it—because that’s when I was first diagnosed.
I had just graduated high school, and was packing up my life to move to Columbia and start college here at MU. Eight days before I moved, I had that inevitable meeting with this new neurologist—“You have MS” were not two words I wanted to hear, but what doyou do? You roll with the punches. I moved to Columbia. It didn’t take long for me to learn of the MS Institute, meet Deanna Harper, and try to figure out what my life would be like with MS. At first, you would never know I had anything wrong with me. I went to a support group meeting they had for people with MS at the Institute, and it slightly freaked me out. I was the youngest one there,and I didn’t have visible symptoms. All I could think was, is THIS my future? Awheelchair and sitting around, talking about all that I couldn’t do anymore? I didn’t have that in mind as my future. I didn’t know much about what my future looked like, but I sure knew what I didn’t want it to look like. I didn’t care how those people had their own stories, and who really WANTS to live in a wheelchair, anyway? I wasn’t there to help anyone else, I was too afraid to face a very scary reality—so I didwhat I do the best, and avoided it. I went to the meetings on special occasions… but I wasn’t a support to anyone else, let me tell you!
I made it through most of college with MS. Everyone has those few funny stories of how MS screwed something up and made it hilarious(if you can’t laugh at yourself, who can you laugh at?!). My favorite happened during a speakers forum,actually, proclaiming to everyone how hard it was to keep my thoughts straight and bear with me, because my scats were thoughtered… and that verbal truth literally was on accident. This is,truthfully, how it goes… and if I ever write a book about living with MS, that will be the title!! It explains my brain VERY well.
I didn’t graduate from MU. For some, that’s a total fail. For me… it isn’t a total fail, but a sore spot. I wish I had graduated. I really would like that dumb piece of paper to accompany all the student loan statements I get in the mail! I kept getting sick from the MS, and it was just too much. I pulled out—but I didn’t lose. My time here was one packed full of experiences I will never trade. I learned a LOT about myself, consumed my weight a few times over in coffee, lived in Memorial Union (almost literally), and most of all—I learned what it meant tohave MS and survive on a day to day basis. I look normal. Few people understood why I was struggling with my vision, or why I would fall in such a fantastical manner in the middle of the street and just sit on the ground laughing (sometimes, that’s all you can do… ). There were about two, three weeksout of the year where people got it—and it was right after Speakers Forum. Iwould be working away in our little coffee shop, and someone would come up andask me how I was doing, if I needed anything… I mean, how many of you are outthere, versus one of me?! You hear my life story… I would stand there confused,wondering if I had forgotten someone I had met AGAIN, when in reality, I never had met you before. That confuses anormal person; add someone who would forget her own name were it not for thenametag on her shirt, and see how confused YOU get…! J
13 years has changed me—MS has changed me. No longer am I the teenager looking for ways to creatively forget my injection of Copaxone or writing post it notes with messages like SHOOT YOURSELF and taping them to my dorm room door in order toremember that same shot… I am no longer afraid of shots (although I still hate needles). I’m not afraid to tell people that I have multiple sclerosis. I DO get tired of explaining that no, it is not what Jerry Lewis raises money for over that labor day marathon… that’s MD, not MS… and the snide comments of the uninformed who say, “well you don’t look sick” and “well, let me tell you what you will be like in ten years…” get a little old, admittedly. You learn to answer creatively to these people, and ignore them. There isn’t much else you can do, other than throw your cup of coffee at them. Tempting, a few times…
Two years ago, I switched medicines. I went from the rigamaroll of self-inflicted torture via injections to a monthly torture of infusions. The only reason this is torture is the fact my veins are HORRIBLE thanks to the many doses of IV steroids I have had from many MS relapses, and it takes one too many sticks to start an IV.This medicine is called Tysabri—they tell me it is risky, compared to the other medicines. I’ll tell you more about that in a minute.
I went on Tysabri because the MS was progressing, and in a way I didn’t want it to! I went on social security disability three years ago. I was using a walking stick everywhere I went (I’m not old enough for a cain… unless it is really cool looking…). I was having more relapses than not. It was not a pretty time in my life. I was NOT happy about it. I was told that whatever you are like at the 10 year mark is just about how life would be like for you… and I was rapidly approaching that 10 year mark. I was facing a life of permanent disability, losing my ability to walk, slowly losing my vision, and struggling with greater levels of fatigue and cognative problems. None of this was good. My neuro mentioned Tysabri, and at that point, I was all for it—anything to STOP this disease from progressing! I started the infusions, wondering if it would make much of a difference. Has it helped? Well, I’m standing here in front of you,WITHOUT a walking stick. That, right there, is worth celebrating.
Let’s not stop there… Iwant to tell you about a group called the Heartland Border Walk for MS. Not only am I able to walk, but I have started walking with these people. This group sponsors a three day, fifty mile walk. They raise money, just like you are doing through RAMS, for people in the KC metro area (Kansas and Missouri), and to help fund research through a group working out of the KC area. These people remind me a LOT of the MS Institute here in Columbia. They do things for the people with MS, which impacts lives. The first year, I rode a scooter on this walk. I mean, fifty miles… c’mon… last year, I walked almost TWENTY MILES outof the fifty. TWENTY. Without a walking stick. This…was an accomplishment for me. I am walking again this year… and I’m going for thirty miles. J Who knows… maybe fifty?!
Tysabri is risky, because it is easier to contract a disease called PML—progressive multifocal leukoencephalopathy (say that five times in a row…!). PML is a nasty disease. PML is fatal, whereas MS won’t kill you (you could die from side effects of the disease, but MS itself is not fatal). PML is a nasty little bugger I do NOT want! Basically, it is where the white matter of your brain is attacked, starts to shrink, you literally go crazy, and you die. It is very rapid, too. I started the medicine knowing the risks, thinking nothing much of it. Then they started to test people for this virus in your blood that over 50% of the population has, called JCV. JCV stands for John Cunningham virus, named after the lucky dude who brought about this diagnosis. This means at least half of you out there has JCV. JCV by itself isn’t a big deal… until you have asuppressed immune system (like someone with MS has), and you add an immunosuppressant drug (like Tysabri)… then you’ve created a perfect storm. Perfect storm… to get PML. I found out a few months ago that yes, I do have JCV. So here comes the crisis moment… do I stay on Tysabri?
I stopped for a few months, and suffered for that choice. I spent a lot of time in prayer about this choice. I am not afraid of dying, I know where I’m going when this life is all said in done. I just don’t want to take the most painful route! I am afraid of PML. I sought a LOT of counsel—I GRILLED my doctor about this. Apparently, ALL of her patients, minus two, tested positive forJCV. So, I’m not alone. I had my first infusion after the JCV diagnosis last week. It is working… and I’m thankful. So thankful!
MS is a challenge. I’ve learned a lot about life from challenges like this. My life is a challenge, but I’m not on this earth for a life of ease and comfort. I am here to worship my God, my Creator, who lovingly placed this challenge in my life. It isn’t one I would choose for myself, but were there another way for God to bring about the changes in my life that conform me more into His image, apart from me having MS, He would have chosen the other way. I believe everything that has happened in my life, and everything that continues to happen in my life, is purposeful and intentional. I know I have MS for a reason—it puts me up here in front of all of you, for example. It opens up doors of conversation I would NEVER get to have otherwise. I understand when someone comes up to me and says they hurt because of disease, they are depressed, they are scared—I’ve struggled with all of this, and some days I struggle more than others! I can stand up here,though, and tell you—because I’ve been there—that God has a plan, this was not on accident, and yes, He cares. This is why I started to study and learn about biblical counseling, because it offers something a diagnosis like MS does not—it reminds me of the HOPE I have because of my relationship with God. It isn’t a crutch or something to make me feel better while dealing with a chronic disease—hardly! But it gives me ultimate purpose and meaning, in spite of MS.
That’s what day to day life is like for me. It’s like an obstical course—you can either lay down, or work at it. I’m working at it. It isn’t always pretty—but it is a heck of a lot better than giving up.
Thank you!
