From Chantal

Dear MS,

I was scared when I first met you. I mean, making me numb from the waist down? You really know how to sweep a girl off her feet!

I seriously dislike how you made me scared for the future. How you tainted the thought of having children for me. Instead of being excited for them, you have made me worried I won’t be able to run around and play with them. I don’t hate many things, but I do hate the fact you have burdened the people in my life, people I care about. Because of you, they worry about me…a lot. This is the one thing that pisses me off the most. They never asked to have you in their lives.

I keep you deep inside me wherever I go, no matter what I am doing. I know you are always lingering, waiting for that moment when I am at my weakest. Most of the time, you are just a whisper as I continue on my mission for a fulfilling, happy life. Despite your biggest efforts, I am the happiest I have ever been, in spite of you.

Like a lot of people who have met you, you have challenged me. You have made me, hurt, numb, embarrassed, confused, sad, angry, bitter, lonely, pitiful but most of all, you have made me strong. You are one of the most important teachers in my life. I have found resilience deep down inside of me that YOU have brought out. I hold my head up high with confidence, knowing that like most people, I am surviving you. I keep those who you have deeply hurt in the back of my mind always, and close to my heart. They are always in my thoughts & are my inspirations.

You have made me stumble, but will never make me fall.

Sincerely NOT yours,

Chantal

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Patricia to MS

When I was diagnosed with MS twenty one years ago, I was devastated.

My immediate thoughts were I wouldn’t see my daughter grow, date, let  me
help pick out a prom dress and watch her grow and change.  When MS was the
diagnosis, I felt hopeless. I had a four year old daughter and a happy
marriage and a great job in a coronary step down unit. My primary symptoms
were dizziness, fatigue and heat intolerance.. I knew very little about MS
and dived into all the medical research I could. I have been incredibly
lucky and believe me, I know it. I have been blessed with a daughter who
lives in a different state and yet, it seems, tracks my every symptom.
Sometimes it frustrating, but I love her for it because she has my best
interests at heart. I have continued to work, most recently 12-14 hour
shifts with 25 men with behavioral disturbances. I do get fatigued, however
it seems I do so when I have time to rest. Heat is a major problem,
especially with humidity, but hey, that’s way there is AC.  Dizziness comes
and goes but it’s something I can deal with. A few more symptoms have
cropped up, but I intend to deal with them with a positive attitude, along
with the love of family and friends.

It goes without saying that there are times I say “Why me?” And then I look
around and see people who suffer in a multitude of way far worse than
mine. Kind of puts me in my place.

MS is unpredictable, painful, exhausting and scary. I can treat the pain and
and sometimes fatigue, but I have no control over the MS or other symptoms.

My daughter has walked the MS walk for me for 8 years, 7 as a team leader in
different states. Her friends walk for me no matter where they are and they
have been all over. I love them all for there concern for me. My husband
prefers to believe that because I do so well, as well as try to hide the
symptoms from despite the symptoms, that MS hasn’t affected my life as it
has. It may sound funny, but that gives me even more strength to fight.

Well, that’s my story in a nutshell.

Patricia

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DB in Colorado, 22 years with MS

M.S.,

What I want to know is “What have I done to deserve you?”  All I ever hoped for was to help people feel good, to recognize they were special in some way.  Because they are.  And what have I gotten?  Nothing but limitations and barriers.  I guess I was hoping for way too much; selfish really.  People tell me I don’t understand how difficult their life is, that I have been blessed and favored.  They think I am annoyingly optimistic. I continue to hear, “you are so lucky.”  I can only hope that makes them feel good.

You have taken pride in watching me repeatedly stumble and fall, bringing me down to the level I must deserve.  Maybe now reality is going to help me wake up and smell the sewer.  Then maybe I will start to understand.

You look for good people, don’t you?  The other victims I’ve met are almost universally talented and open hearted.  In that way you have done me a favor — I couldn’t ask for better friends.  But that favor is tempered with the pain of watching them struggle.  Every minute of every hour of every day.  And the only way to help is the same way they help me — by being a friend who listens and understands.  I can do that.  Not that you won’t find a way to put boundaries on my listening and caring.  Limitations are your specialty, aren’t they?  And you are incredibly good at forcing them on us.  What you can’t put a limit on is how much I hate you and this disease.  Sorry — that is out of reach, even for you.  Live with it, like we do.  You deserve it — we don’t.

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A.L., NJ, dx’ed 2005

To M.S.,

You blew into my life nearly six years ago, wholly uninvited, and you stole the last half of my senior year of college.

When I should have been finishing my last term and saying my goodbyes, I was instead waiting for my double vision to cease, getting MRI after MRI, buzzing with corticosteroids, trying to make peace with injecting myself every day for the rest of my life. Oh, yes, and crying…. there was lots and lots of crying.

When those doctors crowded around me that January day and told me what was wrong with me, the air went out of my lungs. You snuffed out whatever feelings of invincibility had survived past my teens. You reduced a happy and otherwise healthy 21-year-old to a fearful child. You made me anxious of my body’s every twinge. You drowned me in panic with thoughts of a life spent in a wheelchair.

You made me afraid. And for that, I will always hate you.

I hate you because no matter how fast I go, I can’t outrun you. You’re always just a step or two behind, breathing down my neck to make sure I don’t get too comfortable.  You’re a tireless enemy who only feigns surrender.

Of all the things for which I hate you, however, I hate you most for the look on my mother’s face when I told her what I had. When I said “multiple sclerosis,” her heart cracked. All she could say was “no,” and I watched her literally sway with the pain of it. If only for that single memory, for the look on her face that I will never forget, I fucking hate you. And for every moment you’ve taken away from her since because she’s spent it worrying about me, I hate you more.

I hate you for isolating me from my peers, who can live lives with just conventional worries.

I hate you for the hours I’ve spent in MRI machines trying to lie perfectly still, worrying what the results will say.

I hate you for giving me secrets to keep — from new friends, new employers, new love interests. I hate you because anyone I date seriously ultimately has to learn that I that I am much more flawed than normal, that I’m out-of-the-box defective. I hate you for making me, at times, feel less worthy of another’s love because I don’t ever want to become a burden.

I hate you for making me hesitate to ever plan anything too far in advance.

I hate you for making me fear becoming a mother — for the fear of the guilt that would swallow me if my child couldn’t skip out on these bad genes…. knowing I could have prevented him or her from ever having to stare down the barrel of a life with you in the sidecar.

I hate you for so many more things, but I’ll stop now to tell you that, to your chagrin, you have not wrecked me in these six years.

You’ve certainly changed me, worn me emotionally — and being the merciless, caustic thing you are, I’m sure you’re not quite done with me — but I’m still here, still kicking, and I‘m pretty tireless too.

I just wanted to make sure you knew that you will never define me.

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