Tuesday, May 12, 2009

Dear MS

(photo via marthastewart.com)

You are in my thoughts today and I can't shake you. It's been almost 4 years since you have entered my life and let's be honest, you have more than outstayed your welcome. Or can I really say that? Have I ever welcomed you with open arms? I have dealt with, and tried to understand, but welcomed? No. I think not.

A few weeks ago you made my husband sick. You lowered his immune system so much that the slightest runny nose immediately turned into a monstrous cold. And then he became sick for days. And it happens often.

Oh, only a cold? I should be grateful, right? He can walk and see. His memory is working well. It's as though you aren't even around. But you are. Each night as he takes his shot to keep you at bay, you are there. Every doctor's visit, every MRI, every outrageous medical bill reminds me that you exist. That you are here with us. Every second of every day.

I didn't do the MS walk this year. I was registered and my team raised a good amount, but I didn't walk. There was so much going on, and the day just slipped by. How could I let something like that just slip by? It was as if didn't fight you this year, and that makes me mad. As if I pretended you did not exist. As if everyone pretended.

But you do exist. Every day I wake up knowing that today might be the day. The day you take away my husband's ability to walk. The day you take away his eye sight. The day you take away the memory of piggy back rides with Daddy and walks on the beach. The day you take away my husband.

My mind often drifts to that first year you came to us. Half of that year was filled with numbness and paralysis in my husband's left side. I drove and drove and drove that year. He couldn't. 40 minutes to work. 40 minutes back home. 40 minutes to work. 50 minutes back home in traffic. 32 minutes to the doctor. 25 minutes to the MRI. 10 minutes to Trader Joe's to wait for the MRI. 10 minutes back to the MRI. He was up. He was down. He took a form of steroids to help him get back up, but it made it worse for awhile. He was so sick because of you.

I remember standing at the airport waiting for our flight to go home for Christmas. I had a baby, and a 5 year old, and luggage, and a dvd player, and snacks, and a bottle, and my wallet out to be checked, and you had him. He was just sitting there, nauseous, with a lack of physical stability and numbness in his leg and arm. I was all alone because you had him.

Thankfully a month later we were able to start a new medication that helps keep you in the dark. He even climbed a mountain to say, "Hey look at what I can do, MS. You can't beat me." But (sigh) you still won't leave.

Oh I hate to be all doom and gloom. "Don't think about the what if''s," they all say. But don't you believe that understanding who you are and what you can do better prepares us for what may come? It's as if saying, "let's not study History because what good will it do? We certainly can't learn anything from it."

Sometimes, I have to be doom and gloom, because that is what you are. You are not nice. You are cruel. You are unwelcome. I don't like you.

I am tired of pretending that everything is alright. I'm tired of acting like I'm okay with you around. It's all a lie, and I'm tired of lying. We are stronger because of your existence, but at what point do our arms falter from your weight? At what point is it okay to no longer be strong? I have to wonder, what will you do to us then?

And so, I will remain prepared for you. I will continue to wash your sheets and make up your bed because I know you are here to stay. But you must know the truth... I wish you would go.

Unhappily your hostess,

Carrie Stroud

(letter inspired by letters at aimeeheffernan)

11 comments:

wilkinson_fam said...

Carrie,

Thank you so much for sharing your feelings on this oh-so-sensitive-and-personal subject. You and Aaron TRULY amaze me. Your letter reminds me of one my friend Aimee and her family wrote to MS as well (perhaps you've read it). MS affects so many people that I love. We are ALL praying for a cure and - in the meantime - praying for the strength of those who must deal with its effects on a daily basis.

Love you, girl! You are not alone.

Carmella 'n Sydney said...

You are not alone... You can share in person also. Posted my feelings today a bit on my blog. Love Ya! Ella-Bella style!

aimee heff said...

Dear MS,

You suck.

And just for the record, you will not with this fight. Not with my family or the Stroud family.

too familiarly yours,
Aimee



Beautifully articulated, Carrie. Writing the letters were very therapeutic for our family. I am glad you did one too. It is helpful to externalize MS.

Lisa said...

Thanks for sharing your letter. (I'm Aimee's sister see above.) I just hate all the, "What if's!"

Sarah in the Middle said...

Really well written, Carrie. Thanks for sharing it! I'm glad that we were able to walk with you guys through a little part of your journey. We love you!

Warner's said...

Okay so funny thing first...I thought you were ranting at first about Martha Stweart (MS). The picture made me think that and then I started thing...how in the world did Martha Stewart make Aaron sick! Funny huh?

Anyway...I'm sorry things have been kucky! I'll keep you in my prayers!

Stephie said...

Your letter is so inspiring and heart rending at the same time. You are dealing with such a difficult and scary disease, but I can see there is also so much happiness and love in your home. You are such strong woman, Carrie, you amaze me. We will keep you in our prayers as well!

Palmer Family said...

I just finished the testing for MS and the Dr. said, "For now it is negtive." I have some other things going on and we're still trying to figure it all out. Knowing that you or someone you love has a chronic, life altering disease is very scary, unsettling, heartbreaking... I'm sorry that your family is struggling with this. Sending you love and strength from Michigan.

Shannon said...

After meeting you tonight I had to re-read this post (and it was my older sister who commented -- how could I not have -- my apologize) :)

Very well articulated!
My favorite part was when you were at the airport alone, because MS had your husband. MS you do suck.

It was good meeting you tonight. seems our husbands got along great as well?! Here's to potential couple dating :)

Jocelyn Christensen said...

This is a great letter...What a great way to vent your feelings. The creep probably didn't even write back,though, I bet! :)

...typical!

Jennifer Kuhlmann said...

I'm so thrilled to have come across your blog. I am LDS, and I am waiting for what now seems the inevitable diagnosis of MS. You capture what I've been feeling so much of.
Six months ago out of the blue it seems came Lupus, and Hashimoto's, and Raynaud's, and APLS.
And now....this
Thank you for sharing your feelings, and giving other's permission to express theirs.

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