I’m sure you’ve heard the saying everyone gets 15 minutes of fame, well here’s mine. The only thing is that I’m already dead. My name is Durwin John Cadeau, I am 26 and I have ALS, Lou Gehrig’s disease. Maybe 15 minutes from now lots of people will have read this and my story will help make more people aware of ALS. I had a funny feeling from the first time I had a cramp in my leg that it was ALS. I remember telling my mom I had cramps and when I started limping on my right leg she would always say, “It can’t be ALS you’re only 26.” You see ALS runs in my family, my grandma, one of my aunts and two of my uncles all died from ALS. I also have an aunt living with ALS right now. My mom thought I was too young and I guess she was praying that I would not have it.
After seeing several different doctors in Timmins, and running lots of different tests, almost everything but ALS has been ruled out. I am scheduled for an appointment with an ALS specialist in southern Ontario who is the head of ALS research at the London Health Sciences Centre. Many of my mom’s family meet us there. The doctor welcomes me having already treated four of my family members (two aunts and two uncles) under similar circumstances. After a series of tests the doctor meets with us and confirms our suspicions, I have ALS.
I ask my mom to fly me to London for my second appointment. I want to go alone. I still want some independence. I know my mom is scared to send me and she wants to go, but she knows how much this means to me. I have trouble getting out of the airport. I ask an attendant if I could hitch a ride on the luggage cart. He doesn’t know that I am having trouble walking. I explain to him I have ALS, and he apologizes. Frustrated I wipe the tears away on my sleeve. The fact that my aunt and uncle are meeting me keeps my spirits up.
Some would say I am a free spirit, when I party, I party hard. To some I may have too many tattoos, but they all mean something significant to me, I have the French flag (my dad’s heritage) on one side of my chest and the Dutch flag on the other. My son’s name is tattooed on my stomach and his mom’s name tattooed on my right palm, a penny, actually a lucky penny. I love road trips; I can’t count how many times I have been down the 400 south, then made my way back north. I will never forget the places I have been and the great people I’ve met and friends I have made in my travels.
I have always wanted a boxer dog, so my mom and her boyfriend get me a small pup. I love my new dog and name him Rocky not only because he is a boxer, but because one of my favourite movies is “Rocky” and I love the theme song “Eye of the Tiger.” Like the lyrics say “Risin’ up, straight to the top, had the guts, got the glory, went the distance, now I’m not gonna stop, just a man and his will to survive”. Unfortunately I can’t keep Rocky for long. I can’t care for him; I can’t pet, walk or feed him. I give him to my brother and his family they will love him and he will be a good pet for my little niece. “Cats in the Cradle” is another great song. It makes me sad that I will never have a relationship with my son. I never thought before how it must have been for my Grandma to say goodbye to her 11 children. I now know.
I am 26, I love to play basketball and watch UFC with my friend, my favourite TV show is the Sopranos. I love to listen to music, especially Jim Morrison who ironically died on the same day as me at the same age. “Riders of the storm, into this world we’re thrown”, seems to fit exactly where I am right now.
I wonder if my son will like fixing up old cars. You see that’s my thing. I love to fix up cars. I guess I take after my grandpa, he was a natural mechanic. Eh, that’s something I wouldn’t mind passing onto my son. I had to sell my car. I couldn’t drive it any more because I had no feeling in my legs. I did get some new wheels however. I can still use my left hand and I steer my scooter around town a bit. People stop and ask me what happened. Did I have an accident or something? I try to explain what Lou Gehrig’s disease is. I can’t expect them to understand when even my own family doctor has never treated anyone with ALS.
Some mornings I wake up and feel great. I hear my mom and her boyfriend talking, I smell the coffee brewing, and the sun is warm on my face. It is not until I go to move my legs that I remember I have ALS. I am so frustrated. My voice is so weak that I find it hard to talk and others are finding it hard to understand what I want. I roll my eyes to gesture yes or no. My friends are not calling as often, they find it hard to hear me and I imagine it’s hard for them to talk to me. What can you say to a friend that’s dying and not able to move? How are you? What have you been up to? The calls become less frequent.
I sit on the examination table and my doctor and I watch as my body twitches uncontrollably. It feels like something is crawling under my skin; it’s unbearable. I try to press my skin to make it stop, but I can’t make it stop. The cover of the ALS manual says that people living with ALS often refer to living with the disease as a “journey,” well this is definitely not the “journey” I would choose. A journey to me is a trip, a holiday, a vacation, not ALS. According to the manual I should expect little pain with this disease, but I can barely stand the constant pain in my neck from trying to keep my head up. I have lost so much weight that my head appears big in comparison to the rest of my body. My eyes seem too big for my face. My feet are often cold, swollen and blue from not being able to move them around. My fingers are permanently curled. I have no use of my legs or arms and they dangle limp when somebody tries to sit me up to reposition me or to straighten my bed. I can no longer cough on my own. I depend on others to wrap their arms around me and compress my chest to help me cough up phlegm that collects in my airway, making it even harder to breathe.
My younger brother and sister are having a lot of trouble dealing with my illness. I ask my sister not to cry so much and my brother well he’s never been one to talk much about his troubles, maybe being the middle child he’s always held things in, well pretty soon his role in the family will change and he will be the oldest. It’s a tough job being the oldest, but I know he will do a good job, and I know it will be my little sister who will tell my story. I am angry about this disease and tell my mom how much I hate her for giving me this disease. Her feelings are hurt, but she’s my mom and she understands, I wonder if she hates her mom sometimes, or if my son will someday say he hates me for giving him this disease.
I’m 26. I am embarrassed to ask for help. I like to look and smell nice. I love Joop cologne. Everyday I notice a change in my body and with this I rely more on my mom and a few close friends. I can no longer shave, bathe or toilet myself.
I am in Iroquois Falls Hospital now with pneumonia, I have always had asthma so I’m really having trouble breathing, and the nurses suction my lungs every few minutes. They try to be gentle, but even my bedsores are bothering me more. My feeding tube is giving me trouble and I am so hungry for my mom’s lasagne and Caesar salad, even the food cart of hospital food parked outside my door smells good. A dear friend of my moms, and now a great friend to me, is sitting with me right now trying to make me comfortable. I tell her that I remember how good her chocolate brownies were and she rushes home to make me some. The doctor on call tells me it’s my decision if I want to eat. We both know everything will go into my lungs. She comes back with warm brownies and places a small piece in my mouth. I struggle to chew it, it is delicious, but I choke on it and can’t eat anymore. I lift one hand up to manipulate my other hand to scratch my head and my nose, I look up and my mom is crying, I know what my mom is thinking, she has watched her brothers do the same and knows what’s in store for me next.
In the hospital I feel genuine compassion from a nurse. She treats me like somebody with thoughts and feelings and her kind words touch me. I know I am a tough patient sometimes and I tell her I know if you would have known me before you would have liked me a lot I am a good guy. I tell my mom about her, I don’t know her full name but later my mom will find out and thank her for being so kind to me during my stay in the hospital.
I tell my friends from church that God is waiting for me in heaven and explain how I dreamt that one of my uncles said to the other you’re going to be surprised who just came to heaven. I know my mom will comfort my son as he grows up and let him know how he was loved. She will show him photos of me when I was little and then photos of him and me together. I know she will always be a part of his life. When he graduates from grade eight and wants to go on his first date she will give him a bottle of Joop cologne and tell him that was his daddy’s favourite. She will save some of my old ball caps for him to wear and give him the cross that I wore around my neck.
Well I am in the final chapters of my “manual” “end of life issues”. My doctor knows as well that I am there; he sits by my bedside and speaks to me sincerely and respectfully. He tells me of my choices of resuscitation. The hospital must know my decision in the event of respiratory failure. I have chosen a DNR (do not resuscitate) order to be noted on my charts. He discusses a tracheotomy and a ventilator which would assist with my breathing, but if I decide to go this way I will have to be transferred to a long care home facility, the closest one being in Southern Ontario. I stick to my initial decision. The doctor and nursing staff promise to make me as comfortable as possible and my pain will continue to be managed with a morphine drip attached to my side. I know my pain will soon be gone and I will be reunited with my other family members.
My mom promises to tell my son how much I love him and that I will always watch over him. I tell her I would like to be cremated and buried at her home in the country. I want a large rock with a bible verse, and a white angel to sit beside it. Psalms 61 verse 1-4, “Hear my cry O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tents forever and take refuge in the shelter of your wings. I would also like to have poppies planted around my rock as I feel I am a soldier of God and all soldiers have poppies planted near them.
It is July 3, 2006. Today everyone is still celebrating Canada Day while I quietly pass away in my sleep. It’s been a mere six months since I have been diagnosed. It will be six months later when my mom receives my autopsy report, telling her that they found two significant findings about ALS because of my autopsy.
So here I am again one last road trip, but this time it is in the back of a hearse, going to the London Health Science Centre. I have agreed to donate my brain and spinal cord to research hoping that it may help find a cure for ALS and save my family. I want a cure to be found especially because my little boy may already be caring this deadly gene with him as he plays carefree in the sand, and his mom may loose her son.
My mom asked me to let her know when I get to heaven; I wake her up during the night. I lay beside her and she knows I am gone. I then wake up my little sister. My older half sister asked me to leave a little straw on her windowsill to let her know when I am gone. She wakes up to see her straw wreath has broken and the straw is lying on her steps and on her windowsill. She will call my mom because she knows I am already gone.
My doctor asks my brother and sister if they would like to be tested for ALS. After a lot of thought they decide not to. My sister says it would be like a black cloud over her head if she was to test positive, as there is nothing medically anyone can do. There is no cure and it will appear when you least expect it. My mom doesn’t need to be tested. She now knows that she too has the Familial ALS gene.
I don’t want my family to lose out on living because they are so worried of getting sick. I want my brother and sister to live and love life, and when they hear the song “Live Like You Are Dying” by Tim McGraw, I know they will stop and think of me.
By Durwin Cadeau