Many of my loved ones have told me that it isn’t fair that I should have been given this disease.  After all, they say, I was always strong, healthy, vibrant, optimistic, smart.  I took excellent care of my health, especially abstaining from meat and birds for over thirty years.  I have exercised religiously, taken great care of my skin, hair, muscles, always so concerned about my appearance.  They love me, so they believe it just isn’t fair.

I ask myself, “What IS fair in this life?”  Watching the news, hearing of children everywhere starving and dying, the most recent figures show that 400 children die every hour in the U.S. of starvation.

I was a social worker in Maine for many years.  I made home visits to children who had developmental and other disabilities.  I watched these families struggle with the countless challenges caring for their children brought.  It effected the other siblings in a mostly negative way, as most of the attention went to the child who had the disability.  The stress in these families was palpable.

I remember a tiny boy, blind from birth whose single mom worked diligently to help him become self-assured and happy.  He was a beautiful little one.  On one home visit, a man appeared in the home.  He was very loud, rough and arrogant.  He introduced himself as Ryan’s father.  I did not like this man.  I had very negative vibes about him and I watched Ryan’s mom carefully as she tried to balance motherhood and being a wife again.  This man had been in jail.  I never learned the reason, but I was unfortunate in witnessing the havoc he wreaked upon this  family.

As most moms know, transitioning babies from smooth food to chunky, textured food can be very difficult.  Imagine how difficult this might be when you are feeding a blind child!  Well, Ryan had a big problem when this new food was introduced.  It was very painful to observe the process, even though his mom did everything that the occupational therapists suggested.  It didn’t take very long for his father to lose patience and take over.  I never saw this with my own eyes, but Ryan’s mom finally told me of this mean, angry man forcing food into Ryan’s mouth.  She had been ashamed and took weeks to tell me.  I had wondered why Ryan cried all the time now and looked so frail.

Ultimately, he had to be hospitalized and tube fed to save his life.  A full-blown eating disorder and this tiny one was under four years old.  It broke my heart.

There is more to this story which would reinforce the depth of this man’s bad behavior, but, suffice it to say, he was put back into prison, thank God.  I always wondered whatever happened to Ryan as the years passed, and can only pray that his mom and loving therapists were able to put him back together.  And I ask, was life fair for little Ryan?

I have so many stories like this.  It was the most difficult and rewarding job I ever had.  I loved those kids and their families, who so generously allowed me into their homes to work with all of them.

This past summer, one of my oldest and dearest friends suddenly died.  She had a hip replacement and died alone in her bed, five days after returning home from the hospital.  She thought she had gotten the flu and that she would soon be better.   She was vomiting and people begged her to see the doctor, to no avail.  Anne was a strong woman who ate organic foods, and didn’t like to go to the doctor.  Agreeing to a hip replacement was huge for her and a clear indication of how much pain she was in.

She had come to Colorado from Maine after her divorce, at my urging.  We had worked together for the Bureau of Children With Special Needs for years, and, over those many years, we became good friends.  Anne was the quintessential social worker.  She was committed to the children and families she worked with.  She was a wonderful mother, grandmother and good friend.  Losing her is still very painful for me.

Hip replacement surgery is common place today, but my friend died.  Is that fair?  Does it even make sense?  She gave so much to so many and had so much more to give.  The world is not better off without her, and neither am I.

So, what IS fair?  My friends, life is NOT fair.  It was never meant to be.

I believe that our souls live forever.  Each time we are ready to return for a new incarnation, to take on another life, we have things we have to learn.  Those lessons are learned through the challenges we face in our lives, and I believe that each time we do it, we become closer to the spiritual beings that God wants us to be.  So the challenges are as diverse as we are and we deal with them in our own ways, doing the best we can.

Would I have chosen ALS?  Or cancer, or mental retardation, or abuse, or starvation?  With our egos intact, none of us would make a choice such as this.  I believe it is all carried out the way we agreed when we were part of the spiritual realm.  This may seem too far-fetched for some of you dear readers, but the belief is mine.  You have heard me say many times in this blog that this is “my journey.”  Now, perhaps, you can understand why I believe that.

I would never have chosen ALS, but I am learning about life, about people and love every single day.  It teaches me.  I watch my husband care for me with tenderness I could only have dreamed of.  My family and friends comfort me, worry about me and feel sad already as they accept, little by little, the fact that my days are numbered.  They, too, are learning.

As I live with the countless losses that this disease has already wrought, I am acutely aware of how much joy there is in the simplest pleasures.  I shall dwell in this experience and truly embrace each gift.  The gifts that come in kind words, the rain, the autumn leaves, my animals, my friends, my ability to share my thoughts and feelings with all of you.  And, for that and so much more, I am eternally grateful.

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