About the Book

The poignant true story of a young woman stricken with ALS and her coming to terms with the realization that she is dying.

All proceeds from the sale of this book will go to ALS research

About the Author

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Anne Bulger was a 44-year old technical assistant with a major Canadian insurance company when she began experiencing problems with her speech and mobility. After six months of tests and delays, she was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease. Given approximately three years to live, she died a mere six months later.

Anne Bulger was an unusual young woman. Prior to her illness she was known to be intelligent, earnest, and hardworking. It was during her battle with amyotrophic lateral sclerosis - ALS - that other facets of her character emerged, including an enormous courage and strength of will - as well as the shocking eloquence she revealed in describing her own illness and impending death.

ALS is not a good disease to have. It is a progressive and incurable neuromuscular disease characterized by gradual paralysis of the muscles of speech, swallowing, and breathing. Death usually results from respiratory failure 2 - 5 years after the appearance of initial symptoms. Most of my patients elect to prolong their lives with a feeding tube, but Anne Bulger would not accept this treatment. For all of us who cared for Anne, we accepted this decision as another expression of her courage to choose, even when the available options had dwindled to a vestige of their normal human abundance.

We have few clues as to the cause of ALS, a neurodegenerative syndrome caused by death of nerve cells that supply the voluntary muscles. Though inexorable and merciless, ALS spares many neurological functions, including eye movement, bladder function, and sensation. Mental function is also spared, so that memory, personality, and emotional life are sustained into the last hours of life, along with the precious interactions with family and friends. This is, perhaps, a good thing about a dreadful disease.

The consequence of preserved mentation is also a prolongation of the capacity to suffer. Anne clearly articulated the anger and sense of abandonment that a fatal illness can evoke in our self-conscious species. I last saw her in a palliative care unit about a week before she finished this journal, unable to eat or drink, still struggling to communicate by indicating letters on an alphabet board.

At that meeting, we "talked" about the faith that informs us of a reason for everything. You hold in your hands the honest account of a young woman's suffering and death. Its value is neither to instruct nor uplift, but to document Anne's ALS. It is surely the most harrowing testimony of this malevolent disease I have spent the last 20 years trying to treat and understand.

Dr. Neil Cashman, M.D., F.R.C.P. (C)

Director, ALS Centre,
G.F. Strong Rehabilitation Hospital,
Vancouver, B.C.

Professor and Canada Research Chair,
Brain Research Centre,
University of British Columbia,
Vancouver, B.C.

Comments

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"How wonderful that Anne's journal will be published. I think many people will find it informative and insightful."

"I am extremely happy to hear that Anne's journal is going to be published. Her courage will serve as an inspiration to many."

"I have, of course, read Anne's journal (more than once) and it is a truly inspiring piece of work. I was privileged to be a part of her life. She is in my thoughts often and I'm glad she can continue to be in our hearts with her journal. I sincerely hope it will be published to help others, as I'm sure she would have wanted to."

"I commend the publication of Anne's journal in book form. I think it will provide much insight into the emotional aspects of dealing with ALS for all, and be helpful to health professionals, victims and their families."

From the Prologue

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Page 13

I hope you can use this piece to help people in some way. I wanted to illustrate how something so seemingly insignificant can turn into a horror that is beyond belief. This might prompt patients to seek answers more aggressively, and much sooner than I did. I hope that if general practitioners read this, it will cause them to pursue a course of action they wouldn't normally consider. None of this will stop the inevitable, but a faster diagnosis might help people in the early stages of ALS come to grips with the emotional aspects of the disease before it progresses. From a practical point of view, patients also need to make plans before they are too far gone (i.e., leaving work, occupational therapy, personal care, estate planning, etc.). At the very least, I hope my story will let ALS sufferers know that they are not alone in their feelings of sadness, anger, and fear.

From The Beginning - What is Happening to Me?

Page 18

That's when it first happened. How odd - this morning I stumbled over my words, slurred my consonants, and my tongue felt strangely heavy and out of place in my mouth. It was subtle, yet noticeable and bothersome. The day before I had been fine.

Page 24

Then I noticed something peculiar. I was dragging my right foot as I ambled along the sidewalk. I was lugging a heavy load and I was tired, but in the past I had always managed to make the trip home without too much effort. I thought that perhaps I had twisted my ankle somewhere along the way in the ice or snow, without noticing it. I supposed it would clear up in a day or two, and decided to take a nap before my evening out.

Page 33

What happened next, I will never be exactly sure of. It was a mucky day but I don't remember seeing any slush or ice in front of me. I knew there was a curb on the sidewalk, I had walked over it hundreds of times before. However, I was very tired from working late and my mind was still full of clutter from the office. Maybe I misjudged the curb? I don't remember. One minute I was standing upright, the next thing I knew I was literally face down on the pavement. My chin actually broke my fall! A woman got out of the car that I was trying to beat and helped me up. My light-mauve coat was splattered with mud, and a few small drops of blood. I asked the woman if my chin was bleeding very badly and she said "yes", and she gave me some tissues. It suddenly occurred to me that my right foot had given out again, even though I hadn't felt it this time.

From The End of Life as I Know It - Living with ALS

Page 206

Throughout this journal I've dealt with only a small fraction of my life, my struggle with ALS. Yet as horrible and heartbreaking as my illness has been, it was the most significant event of my short life. It forced me to realize what things are really important in our day-to-day experience of this thing we call living. It also allowed me to look back and summarize where I went wrong in my life, as well as what I did right. Not many people have an opportunity to do this. If there was one blessing to having a drawn-out terminal illness, that was it. At least I had some time to reflect, on both the good times and the bad.