Living and dying with ALS
 

By JERRY GLADMAN -- Toronto Sun--

December 21, 2003

 When I decided to write about my adventures in the land of ALS, I approached it in the same fashion as any previous personal story.

I thought it through carefully -- composing a good portion of it in my head -- sat down at the computer and let my fingers fly.

Normally I don't fret much over how a piece will be received, but I'd be a stone cold fibber if I said I didn't think of the potential impact of this series. I knew it was an important story that had to be told and that my decision to hold back nothing would make it a most compelling read.

Folks, I had absolutely no clue what a reaction my little essay was about to unleash.

On the first day of publication, the e-mails began to come in waves, first from every corner of the city, then the province, then the rest of the country and into many portions of the U.S.

The onslaught would continue for most of the week and into the next. At one point, Norma and I calculated we were getting one a minute for most of two days straight. Hundreds and hundreds. Six weeks later, I still get a handful each day.

We quickly developed a routine whereby we'd take turns at the computer, have a good cry and then move on to the next batch. Time and again we were so moved by the wonderful and thoughtful responses from so many strangers.

The majority of the letters were from people with ALS, family members and friends or others who had lost someone to this wretched illness, which surprised me. For one thing, the number of sufferers is minute compared to other diseases. In fact, prior to writing the series I never actually knew anyone with ALS, other than through the media.

Then, within a few days, I knew hundreds. I knew their loved ones and their friends. I knew all about their lives. I suddenly became a member of a very exclusive club in which all of us share so much. And it's so gratifying.

I learned that a great many of them followed the same path as me seeking a diagnosis and that they encountered similar roadblocks, some with the very same doctor.

Oh my God, it is all coming back to me. I have just read your first article in the series about ALS and it sent shivers down my spine it is so close to home. You see my brother was diagnosed with ALS in 1997 at the age of 64. Your story is so true in describing the wait for tests and results, the way the diagnosis was given so coldly. It is unbelievable!

My brother received the news himself -- shockingly. His wife had let him off at the door of the medical building as he had difficulty walking. By the time she parked the car and was coming into the building, he was in the lobby waiting for her. He had been in to see the doctor and was ready to go home. He told her in the car what the diagnosis was -- not a good move as she was driving the car.

I've also learned so much from so many of them, particularly how to deal with this disease with dignity and on your own terms. Whenever I'm feeling down all I have to do is read a few of the e-mails and I'm quickly reminded that despite being dealt this crummy hand, there is still so much that life offers.

Fully aware of what I was up against, it became clear to me that I had a decision to make, perhaps the most crucial and important one of my life. I had to decide how I was going to live out the years I had left. I could give in to the feelings of anger, impotence, frustration and despair which inevitably would lead me into a general state of depression from which I could hardly escape -- mainly because in a progressive neurodegenerative disorder such as mine every new day comes with bad news: Something you could still do yesterday, is impossible to do today no matter how hard you try. Or I could hold on to my shattered and diminished faith and lean on God's love and the love of family and friends and live my life intensely, with optimism, happiness and joy.

The first thing I learned was to value and truly appreciate all those things we take for granted: One's health, being able to walk, one's wife, one's children, a new day, a new sunrise, being able to talk, one's friends and all those precious and wonderful gifts that God gives us every single day.

Some have even become my personal heroes. Their situations are far more dire than mine yet they live each day with such joy, with such determination and with such dignity they will never know defeat.

I was also heartened by the number of folks who were simply touched in some fashion by my words and took the time to sit down and drop me a line. Several admitted they were so affected it inspired them to make changes in their own lives.

Nothing was more rewarding than the people who thanked me for helping them now understand what their loved one went through during the illness but couldn't express.

I guess I just wanted to write to you to tell you how much your articles have helped me understand. I have read about the disease in so many books but this was the first time I had read something real, someone just pouring their heart out, however tough it may be. It really made me understand what my Opa felt and reassured me that although frustrated, he was not in pain. You are an inspiration to me and to many others that have been affected in some way by ALS.

A close second, of course, were professionals in the field who commended me for not only bringing greater public awareness to ALS, but for doing it in such a competent and professional manner, as well as giving such detailed information on what daily life was like in ALS' grip.

It is wonderful that you decided to apply your talent and skills as a writer to document your journey as a roadmap for others. I have kept copies of all the articles and I know that I will reread them many times to help me understand the personal experience of ALS better and better as I continue to work with (patients). Your facts and personal insights are better than any textbook for students new to the field of ALS.

Countless times I was stunned and brought to tears by the number of people who were now including me and my family in their daily prayers.

Of course there were a ton of people with medical and nutritional advice, magical potions and ancient remedies -- several worth investigating -- as well as Web sites offering same.

The biggest downside to all of this tremendous response is I couldn't answer them all and I so wanted to. Heaven knows I tried, but I just kept falling more and more behind. So any of you who were awaiting a response, now you know why, and that I shall keep trying.

But most of all, thank you. Thank you for writing and thank you for caring.

"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face." Eleanor Roosevelt

 

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