Jeff was diagnosed with ALS in 2008. Though we hadn't met I was familiar with Jeff as he was a Doctor in town. As Susan and I spoke with them we were soon amazed by the similarities in our families circumstances; both Jeff and I were in our 40's (and we thought relatively healthy), both professionals, both raising young families, both charming, funny and witty and both with ties to the east coast. They were so gracious immediately and offered whatever help they could to maneuver the "ALS waters".
Since that meeting, Jeff has become my "ALS big brother"... answering questions, sharing equipment, providing advice and letting me know what's ahead when I ask. It's not like he doesn't have enough to worry about and do, but he always finds time for me when I come a calling! Darlene has been much the same with Susan. Quite simply, I'm not sure where Susan and I would be without the kindness and compassion of the Sutherland's.
Recently, Jeff wrote a poignant and honest essay about his battle with ALS. He was kind enough to allow me to share an excerpt from it.
Here it is...
Animate Me
Life was changing
quickly and I hadn't even reached my 43rd birthday. In the twilight of my
career, I was given numerous awards to recognize my contributions. Each award,
however, had the stench of disease and with this a feeling of unworthiness. At
the end of my second year with this disease, I had to end my life's calling. My
arms no longer had the strength to lift a stethoscope to a patient's chest. On
my last day of clinical work I drove my power wheelchair home that afternoon.
The sky was a brilliant blue at the start of our journey but over five minutes
the sky darkened and we were suddenly greeted by a thunderstorm. I wondered if
this was a forecast of what was to come!
Slowly, over the next four years, I became inanimate. Singing, speaking, eating and swallowing even the saliva in my mouth was lost and replaced with nothing. My eyes have become my guide to independence as their movements are the only muscles I can still voluntarily control. Through my eyes and the wonder of technology, I can speak, write, learn, teach and explore the world. Some people talk about the evils of the digital world but without it I wouldn't want to be alive...Without it I wouldn't be alive.
"Mr. Sutherland, we are ready for you ", they don't know how this grates at my already fragile motor nerves. My inner voice calls out like McCoy on Star Trek, "I am a doctor, God-damn it!" "I was just like you" I never was much for titles when I was "normal" but having it taken away from you makes the longing for it that much more intense.
"I hate what I have become! " She exhaustively states "I feel guilty all of the time" she continues. This is the toll that ALS puts on a couple. My brain interprets the statements to a single message. "The breaks aren't long enough and now I feel lost in the forever of our circumstance." On these dark days, I think to myself "Why make two lives miserable just for a limited existence." My happiness is unfairly derived from her happiness. Without it, I feel responsible for every tear that falls. My guilt is overwhelming. She feels guilty for being able, I feel guilty for being an obstacle for her to be physically hugged, kissed and caressed-from having a normal husband.
From the onset of the diagnosis of this illness every moment of life has been tainted with the question, "Why us?" and" What would our lives be like if we had no illness?" Questions that remain in the unspoken because to utter them too frequently would demean the attempt "to live in the present ". My friends and peers are in the peak of their careers, each one climbing higher and higher up the ladder of success, while I am paralyzed to join in the pursuit. The power years of the past will never come again. Why keep on going you might ask? A good question would be my reply. My stubborn body refuses to quit right now. I know that there will come a time when it will just give up. I hope that it comes at a time when my family will be okay. I know now that time is near…
"The time has come" my body tells me. Reflexively, my body clenches and my tongue rolls back. "Holy shit! I am dying "I recognize the irony - dying in the place in which I have worked my whole career saving lives. My brain hears the frantic noises around me. I hear my wife plead, "I am not ready for him to die!" My brain fires random thoughts as it becomes more and more anoxic. The last thing I see is the pencil drawing side profile of the head of a young boy. My brain names him Josh. While waiting for a bright light to guide me, suddenly all goes black and my brain stops. I want to have the out of body experience that many have had in similar circumstances but I am left in the blackness, feeling sad, alone and afraid. An eternity passes and I open my eyes. I now want to live and I know that this is not my time to die. With my body finally forsaking me, it is now me who will not quit. I add to my arsenal of technology a permanent ventilator.
Now I am without movement. As if I was a rock in a wheelbarrow I get transported from location to location through the exertion of someone else. Some relationships which I never thought would be compromised before illness are gone forever. However positive I try to be, some people can't deal with my new realities. Abandonment at the time of greatest need is something I can't personally understand. Families can be destroyed when this type of adversity is faced. Other relationships flourish under the same circumstances. The incongruity of this boggles my mind! The new normality doesn't seem abnormal anymore. Adaptation is the key to survival. I think of the many obstacles in my path but I have found what is essential for my happiness; a dash of hope, some purpose, independence of thought with the ability to explore my environment and most importantly to be loved and to be able to communicate love…Even if this is expressed through a synthesized voice.
The alarm clock ring from the other room returns me from the wilderness of my brain. "Please don't press the snooze button my big toe is bent and is killing me" my inner voice pleads. I am pinned to the mattress. Gravity can be an overwhelming wrestling foe. My beautiful partner, the person who married me twice and vowed, "in sickness and in health, through the good times and bad times, until death do us part " comes to my aid. Still half asleep, she turns me in bed and the view of my prison changes. New stainless steel bars come into view, the beige walls are replaced by windows and I can see the first light of the new day. Comfortable again, I nod back to sleep, ready to dream of being animated once again. My mind falls asleep to Stephen Hawking's synthetic voice saying "Where there is life, there is hope!"
Slowly, over the next four years, I became inanimate. Singing, speaking, eating and swallowing even the saliva in my mouth was lost and replaced with nothing. My eyes have become my guide to independence as their movements are the only muscles I can still voluntarily control. Through my eyes and the wonder of technology, I can speak, write, learn, teach and explore the world. Some people talk about the evils of the digital world but without it I wouldn't want to be alive...Without it I wouldn't be alive.
"Mr. Sutherland, we are ready for you ", they don't know how this grates at my already fragile motor nerves. My inner voice calls out like McCoy on Star Trek, "I am a doctor, God-damn it!" "I was just like you" I never was much for titles when I was "normal" but having it taken away from you makes the longing for it that much more intense.
"I hate what I have become! " She exhaustively states "I feel guilty all of the time" she continues. This is the toll that ALS puts on a couple. My brain interprets the statements to a single message. "The breaks aren't long enough and now I feel lost in the forever of our circumstance." On these dark days, I think to myself "Why make two lives miserable just for a limited existence." My happiness is unfairly derived from her happiness. Without it, I feel responsible for every tear that falls. My guilt is overwhelming. She feels guilty for being able, I feel guilty for being an obstacle for her to be physically hugged, kissed and caressed-from having a normal husband.
From the onset of the diagnosis of this illness every moment of life has been tainted with the question, "Why us?" and" What would our lives be like if we had no illness?" Questions that remain in the unspoken because to utter them too frequently would demean the attempt "to live in the present ". My friends and peers are in the peak of their careers, each one climbing higher and higher up the ladder of success, while I am paralyzed to join in the pursuit. The power years of the past will never come again. Why keep on going you might ask? A good question would be my reply. My stubborn body refuses to quit right now. I know that there will come a time when it will just give up. I hope that it comes at a time when my family will be okay. I know now that time is near…
"The time has come" my body tells me. Reflexively, my body clenches and my tongue rolls back. "Holy shit! I am dying "I recognize the irony - dying in the place in which I have worked my whole career saving lives. My brain hears the frantic noises around me. I hear my wife plead, "I am not ready for him to die!" My brain fires random thoughts as it becomes more and more anoxic. The last thing I see is the pencil drawing side profile of the head of a young boy. My brain names him Josh. While waiting for a bright light to guide me, suddenly all goes black and my brain stops. I want to have the out of body experience that many have had in similar circumstances but I am left in the blackness, feeling sad, alone and afraid. An eternity passes and I open my eyes. I now want to live and I know that this is not my time to die. With my body finally forsaking me, it is now me who will not quit. I add to my arsenal of technology a permanent ventilator.
Now I am without movement. As if I was a rock in a wheelbarrow I get transported from location to location through the exertion of someone else. Some relationships which I never thought would be compromised before illness are gone forever. However positive I try to be, some people can't deal with my new realities. Abandonment at the time of greatest need is something I can't personally understand. Families can be destroyed when this type of adversity is faced. Other relationships flourish under the same circumstances. The incongruity of this boggles my mind! The new normality doesn't seem abnormal anymore. Adaptation is the key to survival. I think of the many obstacles in my path but I have found what is essential for my happiness; a dash of hope, some purpose, independence of thought with the ability to explore my environment and most importantly to be loved and to be able to communicate love…Even if this is expressed through a synthesized voice.
The alarm clock ring from the other room returns me from the wilderness of my brain. "Please don't press the snooze button my big toe is bent and is killing me" my inner voice pleads. I am pinned to the mattress. Gravity can be an overwhelming wrestling foe. My beautiful partner, the person who married me twice and vowed, "in sickness and in health, through the good times and bad times, until death do us part " comes to my aid. Still half asleep, she turns me in bed and the view of my prison changes. New stainless steel bars come into view, the beige walls are replaced by windows and I can see the first light of the new day. Comfortable again, I nod back to sleep, ready to dream of being animated once again. My mind falls asleep to Stephen Hawking's synthetic voice saying "Where there is life, there is hope!"
