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,
(letter inspired by letters at aimeeheffernan)