Open Letter to ALS

Dear Lou Gehrig's Disease:

I know you are never going to write back to me.  I know you are never going to answer or give me an explanation, an excuse or a reason.  I know that you are never going to offer condolences or an apology but I have to talk with you anyway.  I have to tell you exactly how I feel about you and what you have done to myself and my family.

You see, ALS, a year ago today you took the life of my father.  You robbed his slew of daughters, his Daddy’s Girls of  the man who fixed their cuts and bruises and broken hearts along with their frozen pipes and income tax.  There is a group of children that doesn’t have their Grampie anymore.  They can’t bounce on his knee, watch golf and hockey and paint him pictures and teach him games.  He can’t show them how to tie flies for fishing or the proper way to cast a fly rod or answer any of their questions about anything at all.  He was our father, he knew everything and if he didn’t, he’d certainly find out.  There are a few who will never remember the way he would hum to himself while he did his puzzles or the faces he made when was working on something.  They’ll lose on the benefit of knowing a true gentleman which he was in every sense of the word.

ALS you have to understand that even though he wasn’t a well educated man, he was a highly intelligent man.  A well read individual who devoured knowledge.  His ability to understand and learn made him, in our eyes, smarter than any doctor, lawyer or engineer.  This was because to us, his family, he knew the important things like tents and cabins and bedtime stories and not just inner workings of engines and understanding the cosmos and astronomy which were things he loved. 

I have to tell you that in the brief time we knew of your arrival, you took away his freedom to fish, to read, to do his endless puzzles – the crypto quotes, the crosswords – which were always beside him with a sharpened pencil and a glass of pop.  You took his ability to hug and hold his grandchildren even though he found other ways to show his affections.  In the short time you spent touching our lives through him you made us question our own faith and strength and stability.  You introduced a new fear to us in that even the strongest people in our lives, our rocks, the steadfast and steady comforting hands of our father could be quelled and quieted and made weak.

In the time that you lived with us we fought against you.  This fight brought us closer in that we made our decisions to fight together as a family and became that much stronger.  But you, ALS are a worthy opponent.  The weaker you made our father and the more you took from him, the harder we worked.  My sisters fought daily through exhaustion, schedules, medications, nurses and their own families t o fight the losing battle.  Our father fought daily to hold his spirits and keep his strength, both physical and mental.  Every day was a new progression as you worked your forces through him quickly.

I’m wondering how you could do this.  Don’t get me wrong here, I am certainly not speaking from a naive point of view as I have read the medical journals, reports, documents, pamphlets, websites, listened to the specialists  and so on and so forth.  I have listened intently to my favourite nurse (my sister) tell all of us in detail the ins and outs and medical ups and downs of you.  I know your symptoms and complications and your horrible truth.  I want to know why you picked my family, my father.  I would like to know why you would pick anyone’s family for that matter.  The answers are getting closer but my heart aches for the families like mine for whom the answers have come too late.

You taught me a lot.  You taught me the importance of valuing every day.  You helped me to learn not to take anything for granted.  You taught me that the people we think are going to live with us forever just can’t.  You taught me the value of family, the importance of siblings and the true meaning of what it is to be a daughter.  It is so much more than can ever be expressed in words and I’m sure that at this moment, from wherever he is, my father is shaking his head in his quiet, knowing way.

I think of you now and even though I’m still angry with you for destroying a strong man, I can’t help but think that I’m glad that he was such a worthy opponent to you as you were to him.  He gave you a fight and defeated you.  I know that it sounds odd for me to say that he defeated you because you were the one who took his life but it’s the truth.

ALS, in the last few days, hours of my father’s life you confined him to his bed and you had taken his voice.  My gentle sisters, our nurse and our sensitive, loving sister who is so much like our mother gave up their time, their lives and cared for him in our other sister’s home while I cared for a very young family and did what I could from where I was.  The one sister who has taken on his quiet and introspective resilience heard him before his final moments tell her that he loved her.  It was in that moment, when he spoke those words he defeated you, he beat you.  You took his life, you couldn’t take his love and that little bit of love proved more powerful than anything you as a disease could muster.

So you see ALS, we are a stronger force because of this and we will still keep fighting you so that other people can tell the ones they love that they love them day after day after day….

Yours truly,

~A Survivor

 

~~ Written in loving memory of my father, Joseph Young who passed away one year ago today:  March 5, 2008.  If you would like more information on ALS/Lou Gehrig’s Disease please visit http://www.als.ca/ – The ALS Society of Canada and walk for a cure.