Kathryn: How did Jim know he was sick?
Marilyn: Jim was in pain. He had to sit down walking halfway through the Oshawa Centre. This is a man who went to the health club everyday of his life, even after working a twelve–hour shift. That was Nov. 26th, 1996. He said his shoulders and neck really hurt and he didn't have any energy. He went to a neurologist in Oshawa who did a bunch of blood tests. The neurologist in Oshawa phoned and told Jim to go to Toronto to see another neurologist there. That was booked for February. He could feel his muscles deteriorating especially in his arms. His left hand was starting to get really weak and it would take a lot of energy to write or hold a pen. He could hardly do it.
Kathryn: How did he react to the news that he had Lou Gehrig's disease?
Marilyn: On February 21, in 1997 he went to see the neurologist in Toronto. He told me the doctor was only going to do some tests so he told me not to go. I wanted to go but he said no. So I went to work. When I phoned home and asked him how he was, he said he was fine. The kids were home from school. I asked them where daddy was now and they said he was outside shovelling the snow. They said yes he seemed fine. I finished work and went home and he wasn't there. He had gone out. You assume someone is fine if they've gone to a doctor and come home and then gone out. They've shovelled snow so you figure everything is ok. I made dinner and got everything ready for the kids and in he walks with a serious face. I knew something was wrong. He sat down in the family room and he started to cry. He said he had Lou Gehrig's disease.
Kathryn: How did you feel?
Marilyn: My immediate reaction was how do you know this? How could they possibly know this right now when you've only seen one doctor? You know you can go hundreds of times to doctors before they tell you anything. He said the neurologist in Toronto did some tests where you put these things on your body and then she turned to him at the end and said, “Mr. Gillespie you have Lou Gehrig's disease. The deterioration starts at your neck and moves up. I'm sorry there's nothing we can do for you.” I was astounded that any doctor would say this to anybody knowing that they had driven 45 minutes from Whitby into downtown Toronto by themselves in a car on the 401 and had to drive back home at rush hour. I couldn't figure out how any human being could do that to another human being. I was outraged that someone would put someone on the road with a death sentence.
Kathryn: How did Jim cope with knowing that he was dying?
Marilyn: He didn't. He just went to the health club. Went to work. He didn't talk to me. Didn't talk to the kids. He was really angry. You didn't dare tell him anything that would go wrong in the day. How could that be any worse than dying? he'd say. I've been given a death sentence. There's nothing anybody can do.
Kathryn: How did the children handle the news?
Marilyn: Nobody handled anything. Mike was 16. He withdrew. Started hanging out more with his friends. Mike was very angry. He had a hard time accepting the whole concept that his dad was going to die. Jennifer was 22 and she broke up with her boyfriend she'd had since she was 16. She started going out partying. Melissa, then 20, who we had been in the process of finishing the basement for her and Jeff, broke up with him. Every relationship started to fall apart. Mike went out one night. He was pissed off and took the car and drove down a country road at 120 km and ended up with a speeding ticket of $1000. He was a first time driver. He didn't care if he killed himself. He didn't care if he killed somebody else. He was in a lot of pain.
Kathryn: How did you cope?
Marilyn: I was severely pissed off because now I'm 42 years old and we were at the point in our lives when the kids were grown up. The girls were going out on their own. We were starting to be able to do things together and not have to worry. Our whole lives were torn apart. I was so angry. We weren't sure if the disease was going to leave Jim in a wheelchair or the other type where he'd be a living tomb. I tried to learn as much as I could about the disease. I tried handling the anger. I mean you have a very short time to work on anything or to figure anything out when someone's dying. I got involved with the ALS Society but nobody cared.
Kathryn: What would have helped you?
Marilyn: Not being so overwhelmed by negativity. They'd come and show me pictures of exactly what's going to happen. Don't show me how my husband, who's strong and who spends 5 to 7 hours working out at the health club on his days off, won't be able to pick up his fingers. Don't show me those pictures. The ALS Society just overwhelmed you with so much negativity.
Kathryn: Do you think counselling would have helped?
Marilyn: If the counsellor would have dealt with the whole family. Taken everybody in. And when you're dealing with a disease that's so rapid you can't wait. The helping wheels don't move fast enough. Not in this country. Not in any country.
Kathryn: How long did Jim battle the disease?
Marilyn: He was gone almost 2 years to the day after the first pain. He was 44.
Kathryn: What would you tell another woman if this was happening to her?
Marilyn: If I could have found one person that would have been there for me to talk. Just one person. That's all I needed. We didn't have a lot of social friends. We had work friends. None of our friends had even lost any parents let alone a spouse. You don't need all the other people. I couldn't talk to my sister. Her husband had Huntington's Disease. Jim's sister had breast cancer. So his mother was dealing with a daughter with breast cancer, a son with Lou Gehrig's and another sister–in–law in the drunk tank. I was alone. You have to have somebody. And not somebody that's been through it because they're only going to tell you that this is going to happen and that's going to happen. All that causes more pressure. And please don't let your doctor write you out a prescription for Paxil. I was up to three a day. Drugs aren't the answer.
Kathryn: After ten years Marilyn, how is your family today?
Marilyn: Mike is finally getting settled and his life focused. He is still very angry. Jennifer is doing well in her life. Melissa is still looking for the perfect family. As for me, the children and I will never have the same bond we had before the disease but I have accepted our new relationships. Not a day goes by that I don't think of Jim and how our lives should have been, but I have managed to start again and cope with how my life has turned out.