I am Yvette Wilson

living with ALS

New Mexico

I don’t know how long I will be able to use my hands or how long I will be able to talk.  I don’t know when my husband will lose his wife.  I don’t know when my children will lose their mother.

Almost five years ago, my husband and I nervously waited for the doctor to discuss his findings, after several months of continuous testing.  We went into his office, knowing that whatever news we learned that day, it would not change the love we had for one another.  The doctor kept quiet, reviewing his notes and staring at the computer screen, as if looking for the smallest of mistakes in his findings… so he wouldn’t have to deliver the news.

Finally, the doctor looked at us both and spoke with a heavy heart, “I’m sorry Mrs. Wilson, but all the test results confirmed that you have ALS.”  Today, the shock from being told the weakness in my legs was the first step of a uniformly fatal disease has worn off, but all of my fears are the same.

There is very little strength left in my legs today, I don’t know how long I will be able to use my hands or how long I will be able to talk.  I don’t know when my husband will lose his wife.  I don’t know when my children will lose their mother.  Right now ALS is still a one way street.  The same as it was for Lou Gehrig 75 years ago.  The same as it is for the over 5,000 Americans diagnosed each year and the over 5,000 Americans who will die from the disease this year.

ALS does not affect individuals, it affects families.  When my husband goes to bed each night, he silently prays for a miracle.  I struggle with everyday things, such as getting dressed, transferring from my bed to my wheelchair, bathing and eating meals.   My husband has stepped up, by retiring from work… in order to become my full-time caregiver.  Even something as simple as combing my hair has become difficult, but Greg googled how to braid and style my hair each day.

The burdens on our family are real, but we are incredibly thankful that I am doing much better than we thought I would five years ago.  Right now my limitations are incredibly small relative to the love we share as a family, the laughter we share as a family.  And with the continuous help from family members and friends, we feel truly blessed.

A big part of living with the disease is facing the future.  I sit in the front yard, laughing and watching my husband and son, play basketball… and I catch myself wondering how we will manage when I lose all of my physical abilities.  If I couldn’t move, if I had to talk through a computer, if I could no longer be able to share in the enjoyment of life with my family, would it be worth it?  Today, the answer is still easy.

Today, my life is amazing, and facing the future, the pros still far outweigh the cons.  But with ALS that becomes the question.  Can you make the joy of living outweigh the burdens?  Not only the mental burden of relying totally on those around you, but does the joy and purpose of your life outweigh the physical, mental, and financial burden you place on loved ones who know it is up to them to keep you alive?  Steve Gleason, O.J. Brigance, Augie Nieto, Tom Ohlson, Scott Lew, Eric Valor… These are people who have lived each day to the fullest their entire lives, and refuse to let ALS take that from them.  People whose spirit and faith and stubbornness won’t let their physical limitations keep them from running organizations, writing movies, and conducting medical research.  They give me faith that we as a family will be able tackle whatever comes next.

Facing the future is different than having no hope for the future.  The understanding of this disease improves by leaps and bounds.  Treatments have been developed for other difficult diseases.  They will be developed for ALS… I have faith, one day they will find a cure.

Today, I don’t look too far into the future.  I’ve decided to savor today and the memories that I’ve made, with family and friends.  To treasure what I am able to do and accept help from those around me… not the easiest the thing to do, but I’m learning.  I may have to adjust the manner in which I do things, but this makes me a stronger person… because I am still here.
I refuse to let a day go by, without letting those in my life know… just how special they are and how thankful I am, for being a part of my life.  When my mother died almost 4 years ago, I felt as if a part of me died too.  No longer could I hear her voice, ask for advice and spend time chatting about the silliest things imaginable… she was gone.  There are so many things I still wanted to say and I was robbed of that time with her.

I think that loss has made me who I am today… a little wiser and one who now cherishes every moment with my loved ones.  I don’t want to miss a moment of their lives and I hope they will treasure the memories we’ve created together, without regret.  I don’t want them to ever see me quit… I want them to see a fighter!!

So with my new found freedom, in the form of “Big Red”… I’ve already found a new sense of self-confidence and strength to overcome every obstacle I may encounter.  No longer do I see limitations, either physically or mentally… only the desire and drive to take on the world.  I am still alive… I am still here!!!

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