12/7/2011
15 years ago today, a high school boy asked a high school girl
if she'd like to hang out after she got off work. She said yes, so
he came over, carrying The Shining under his arm. His buddy had
told him that scary movies are good because girls will get all
scared and cuddle up next to you.
Well it worked. 5 1/2 years later, still laughing over their
first date, those two were married.
In July of this year, my husband and I celebrated our 10 year
wedding anniversary. It has been a hard 10 years. I was diagnosed
with MS 8 months after we were married, when I was a full time
collage student, and my husband was a carpenter after getting his
degree in Computer Animation three months before 9/11. Life was
hard for us as a young couple without the diagnosis of MS. We were
struggling with where our lives would take us, dealing with the
hard facts of life and an impossible job market.
Being diagnosed with MS was just another additive to the
bursting bubble of what we thought married life would be, what we
thought adult would be, what we thought life would be.
I knew life would have challenges, that hard work was essential,
but suddenly it didn't matter how hard I worked. Half the time the
harder I worked the less I was able to do. My MS hit me hard. Optic
neuritis quickly turned to leg weakness which turned to dizziness
which left me sitting on the floor, unable to walk, unable to go to
college, unable to talk to my husband who was so overwhelmed he
wasn't capable of helping himself deal with the sudden changes, let
alone his suddenly 22 year old crippled wife.
Life was hard and confusing and painful for the first two years
after my diagnosis. Soon I was able to accept my new life, having
grieved the life I thought I would have.
I began to communicate with my husband, gently pushing through
the barriers he had built between us because of his fear, anger,
and uncertainty over our future. I told him I was afraid he would
leave me, it seemed a get out of jail free card to me. He politely
declined the offer, held me in his arms, and told me that he loved
me, and always would, no matter how sick I got.
Some days are better than others. Some days I feel like a wife
and a lover, others I feel like patient and burden. But no matter
the day, my husband is there to take care of me. Let me rephrase
that: he does the best he can. Sometimes it gets overwhelming for
him, and he needs a reminder from me that I need him. But I also
need the reminders that, when I am sick for an extended period of
time, he needs a break too. He needs to remember that I am not his
patient, I am his wife. And I need to allow him to have time to
himself, to be a normal husband who can come home late, go out with
the guys, have time in the garage for his projects. This is what
keeps us married, and stops us from becoming patient and
caregiver.
Today was a difficult day for me. This is my husband and my 15th
dating anniversary. I must say, shortly after we got together. I
knew that we would be together forever. Sometimes forever seems
like a long time, at time it has seemed down right impossible, but
we have made it through those difficult times, to where we are
today.
And today I missed my Kindergartners Chrismas program because I
was at the infusion center being treated for reactions to my
steroid treatment. I was angry and felt that I had betrayed my son,
that my MS had betrayed me. As I tearfully held my son in my arms
and explained to him why I wasn't at his school on his special day,
he looked at me and said, "Mommy I'm not mad at you because you
didn't know that you couldn't make it. So it's okay." Of course I
then cried harder. But I think my 6 year old son and I learned an
important lesson today. Life is. Life is. Unpredictable.
Uncontrollable. Surprising. Wonderful. Heartbreaking. Inspiring.
Depressing. Loving.
Life is all of these things. 15 years ago, I had a date with a
boy. 10 years ago I married that boy. 9 years ago I was diagnosed
with MS. 8 years ago I became a mother. 6 years ago I had my second
child. 2 years ago I went on a 30 mile backpacking trip.
And 3 hours ago I missed my son's Christmas program because of
this damned disease that I cannot control.
As I held back my tears in the infusion center, with the nurses
bringing me blankets and heat packs to help with the chills, and
pulling down my pants so I could pee because my legs would not work
on their own, I cracked jokes and told them I would bring them
cookies tomorrow.
I cannot control this disease. I cannot control when I am able
to literally climb mountains, and when I am not able to climb the
stairs. I can do the basic things to stay healthy such as stay on
my therapy, eat healthy, and exercise when I am able. But I am
ALWAYS in control of my attitude.
Does that mean I have to be Suzy Sunshine all the time?
Absolutely not. Today broke my heart, and when I got home, I cried
and allowed myself to grieve this day that I missed. After I was
done with that, I sat down with my son and watched a blurry
recording of his program, not able to tell which kid he was.
I cannot control this disease. But my hope is that next year, I
will be in the front row, tears still in my eyes, watching my
children in these fleeing years of childhood.
On December 7th, 1996, assisted by The Shining, two 16 year olds
began their lives together.
I can say with absolute certainty that this is not where we
thought we would be on December 7, 2011.