When your load is lightened

“One week before his test results, Colin described how he first learned about Huntington Disease and eventually arrived at the decision to proceed with testing…

I grew up in Ontario. I have one brother, five years older than me. We had a normal family life until my Dad took sick when I was 13. That was in 1966 and for a few years we thought his illness was something to do with a serious car accident he was involved in. In hindsight we can see that it was the onset of Huntington’s. It wasn’t until 1970 that we actually found out it was Huntington’s. My Dad would have been in his mid-50’s.

The year that my Dad was diagnosed was about the same time as the Huntington Society was being formed. I was there at the initial meeting in Toronto. Marjorie Guthrie was there too. In those days there were quite a few myths about Huntington’s, but one thing I always knew was that there was a 50:50 chance of inheriting the disease.

I moved out to BC in 1972, and met my wife Emily in 1974. I told her that I was at risk for Huntington’s before we were engaged. And before we got married we had genetic counselling so that she could get a professional point of view. I don’t think there’s anything that the doctor could have said that would have scared her off. We talked about it. I tried to get her eyes as wide open as possible, but when you’re in love it doesn’t matter. It is not until later in life that you find out what your love is made of.

Seventeen years whizzed by for us. We have three children aged 13, 11 and 8. We’re pretty busy, but I’ve always tried to find a balance. Huntington’s aside, you never know how many years you have together. Our philosophy has always been that we try to have fun along the way because you just never know.

“There were fewer options when my Dad was sick. No one understood. There was no Huntington Society going out to the care homes and giving them specific training on how to understand and deal with someone with the disease. There was none of that.”

My brother Brad was diagnosed with Huntington’s about 10 years ago, and he’s not doing very well. It’s time for him to go into a group home. That’s a hard thing to do. There were fewer options when my Dad was sick. No one understood. There was no Huntington Society going out to the care homes and giving them specific training on how to understand and deal with someone with the disease. There was none of that.

I first heard about the predictive test through the newsletters of the Huntington Society and I thought it was stupid. Why in the world would you want to know? There was just no way that I would entertain something like that. I figured that you’re not supposed to know what’s going on in the future. You live by faith, so why dwell on it? But I was in my early 30’s then so I had a different perspective on life. You get to 40 and you start to look at life differently, whether you have Huntington’s hanging over your head or not. You start to look at where you’ve been and where you want to go.

All through this last five years I thought that I should at least, for my children’s sake, get my blood banked in case I get bumped off by a bus or something. That way, if they ever wanted to know whether they’re going to get it or not, there’s some blood on hand and they can get the predictive test done. That started me thinking. At the same time, the Huntington’s cloud was gathering on the horizon and getting closer and closer. Then it started hovering over me. I didn’t think about it heavily every day but there were more and more days where I was thinking about my risk situation. Having your own business, you have to plan ahead. And then there are the children. I was thinking about all this and my thinking went from not wanting the test at all, to at least getting my blood banked, to thinking that maybe I would get the test so that I could use it as an instrument for planning my future.

At the same time, it looked a lot better to go back to Ontario, start fresh and try to enhance my brother’s and my mother’s lives. But I thought I can’t do that right now. I need to know whether I’m going to get the disease because I wouldn’t want to take my family and my wife away from family and friends especially. She would need her support system if I should I get the disease. That’s what brought me around to wanting to know for sure. Over two years I did a complete 180 degree turn in my thinking.

My decision to have the test was something I came to on my own. I didn’t talk to Emily about it. I haven’t discussed my feelings because I don’t want her to be concerned. It’s my way of protecting her. I mean if I really shared my inner-most thoughts over the last few years, I would tell her that, at times, I’m scared. And I am scared when I trip. Sometimes it does concern me, but I’d never say that to her or to anybody else because then they’d just start looking for it.

“My decision to have the test was something I came to on my own.”

When I told Emily about deciding to have the test she was glad because she had thought about it too. And the friends that she’s told are quite happy that I’m doing it for our children’s sake. I could live without the knowledge but you get to the point where you feel you owe it to your kids. I don’t think my kids know that they are at risk. I don’t think they’re old enough. They know Granddad had it and that their uncle has it. They know I can get it. Depending on the results of the tests, we’ll handle it with them as they get older. I remember it was pretty hard when I found out about my dad. You are confronted with mortality in a new and different way. I remember going through that process myself.

We will make whatever lifestyle adjustments we need to make sure we have a good quality of life and enjoy each other. So in that way, this test is a real opportunity. We view it as an opportunity even if the results aren’t the way we want them. We know we have a time frame. It’s not like somebody with colon cancer, that’s got two months to live and has to go into chemotherapy the day after they are diagnosed. But I only look at it that way because I’ve gone through the process of thinking about what the test really means to me.

When you are young you have your health and everything looks great. But you really have to come to terms with mortality. When you have the possibility of something like this you need to look into it and know as much as you can about the disease. You have to come to terms with the reality in your life. All of a sudden things that you’ve been believing all your life go out the window. It is quite amazing. The technology is coming faster than the psychological understanding. Testing sounds like a good idea but you’ve got to think it through.

I think the only thing that I would hope for other people is that they’re able to go through the process with somebody else, and if they have access to it, the Huntington Society has an at risk support group. It’s really good to go there. You can share your feelings. People can relate to it, they can empathize with you because they’ve had the same feelings. There’s a real camaraderie in talking to people in the same situation.

I had an idea that the pre–counselling would have more to it than it does. I don’t feel like I’ve garnered anything from it other than I know exactly what to expect with the process of testing. It hasn’t helped me in my thinking, but from what they tell me, Emily and I are more prepared for this than almost anybody else they’ve seen. I’m ready now but on results’ day it might be a whole different story. I haven’t really thought of what it will be like. Every time I think about it, I don’t want to think about it. On a good day I figure knowing for sure is better than not knowing. But that’s easy to say when you don’t know for sure. I certainly could adjust real easy if I don’t have it. I can adjust to that news so I want to make sure that I can adjust for the other reality, if that’s what it’s going to be.

Colin’s predictive test results indicated that he did not inherit the gene that causes HD. About six months after receiving this news, Colin explained that he and his wife Emily felt relieved to know that their children were not at risk for HD. Colin said it did, however, take a long time for the meaning of his test results to really sink in.

The last few days before we went to hear the news was a busy time. It wasn’t a good time to be going through predictive testing, but when is a good time? I wanted to go through the process and I wanted to know as quickly as I could.

I was getting pretty testy before results’ day. It was really hard for Emily because we both came to the conclusion during the last few days that I had the gene. We could deal with it for us; it was the children. We were told before we got married that we shouldn’t have kids, but you hope that, first of all you’re not going to get it; and secondly, if you do get it, there will be treatment, and by the time you have kids there will be a cure. And on top of that, you still have a life until it happens, even with kids. But when you’re confronted with it and you realize that you’ve done something that you could have prevented, you’ve had three children and you could have prevented passing it on. It wasn’t a nice feeling for us as parents. We didn’t tell the children what we were doing, but the little darlings figured it out. I wasn’t there, but on the morning that Emily and I were going in for the results, they were at breakfast and the little one was saying grace and asking God “please don’t let Dad have Huntington’s disease.” So how they figured this out I don’t know; we had tried to be so careful.

It was a long drive in to the clinic, literally and figuratively. We still had a certain peace because we had prepared ourselves for the worst and honestly felt that we were ready for it. And we had looked at the positive side of the worst and felt that we could deal with it. So when I got the results I was not ready, it just went right over my head. The doctor started off by coming into the room and saying that he had some news that he thought I would be pleased with. I didn’t say it out loud, but my mind said, “then he’ll tell me the bad news.” So he told me that I did not have the gene and it didn’t fizzle on me at all. I looked at him and the genetic counsellor and wondered what they were thinking. Should I be going up and down the hall doing cartwheels and shrieking and hollering? I had no reaction, it was nothing.

For people that know me, my reaction was probably predictable. I just sat there and listened. I’m not an excitable type of person as a rule. I was relieved, but we honestly weren’t expecting that result. I’ve been carrying this monkey on my back for about 24 years and it has been such a big part of me that I can’t just throw it off my shoulder, walk out and do a few cartwheels.

“We still had a certain peace because we had prepared ourselves for the worst and honestly felt that we were ready for it.”

The results certainly didn’t sink in that night. It sunk in a little bit each time we told somebody. We walked out of there kind of numb, not knowing really how we should feel. But we went out and had a nice dinner. I don’t even know what we talked about, but it was just nice to go and enjoy ourselves and unwind. Then we came home and stopped at a neighbour’s place to tell them because they were standing by waiting for the results too. They were probably wondering why I wasn’t giddy and ecstatic. It would be easy to say I should be the life of the party, but it didn’t go that way for me. But it was nice to have shared it with them. Then we went home and I don’t know if we opened a bottle of wine or not, we were pretty tired and emotionally exhausted.

After that, it was business as usual. I got up the next morning and went to work. I don’t think I was any cheerier than usual. Part of it is that I’ve just been too busy to really think about it. The other reason is that we have very few people we can share the news with. Because of the nature of this disease you don’t tell just anybody that it is in your family. If they understand that it’s hereditary they put two and two together, and you’re really jeopardizing your position in work or insurance matters.

I figured the less people know, the better. But when I got the results, the doctor asked, “well, who are you going to tell?” I said, “I’m not telling my brother or my mother.” He asked why and I said, “Because I feel guilty, especially in my brother’s case, I feel guilty.” The only reason for not telling my mom was that I was afraid that she’d unintentionally tell my brother. But the doctor said to me, “What you received today is a gift. You have the gift of knowledge, you know.” We were looking at it that way but the doctor said “Would you not want to give that same gift to your brother and mother?”

“I’ve been carrying this monkey on my back for about 24 years and it has been such a big part of me that I can’t just throw it off my shoulder, walk out and do a few cartwheels.”

My mother passed away quite suddenly a few months later, so we all went back to Ontario to deal with that. My brother was there as well. He’s still independent but probably not for more than another year. I found that with the disease not being a threat to me now, it’s easier for me to deal with it with him. Before, when we’d spend time together, he used to tell me what he was experiencing at each stage. I could only take a certain amount of that because I was still at risk myself. I didn’t want any other reminders of what my future could be. But going back this last time it was a lot easier to deal with. I think it will help me to be more understanding because I don’t have that emotion or threat. The only thing I have to deal with is survivor’s guilt, and I have a great deal of that.

I did tell my mom and I’m glad. I phoned her within a week of my results and she was thrilled. I had planned to tell her the next time I saw her in person, but it would have been too late. So I was able to pass the gift along and it was probably good for her because she had one less kid and three grandchildren not to worry about. In that way it was a very real gift to her.

There are certain people you can’t tell afterwards even though you have good results. They will feel bad that you never thought enough of them to share it with them before. You always have to be thinking who you can tell and who you can’t, even afterwards. The other thing that I’m living with right now is that I haven’t grieved my mother’s death. I had to go back East to do the funeral because my brother wasn’t capable. I wanted to take an hour to go down to the cemetery and just sit there, say goodbye in my own way, all by myself. It’s sort of just below the surface, but you are so busy that you keep pushing it back, pushing it back and then one day it won’t be pushed back anymore, it’ll come. So I guess that’s the way it’ll happen. And probably the results of the test will happen the same way. One day I will turn a cartwheel.

I would like to move back to Ontario and really try to give my brother a better life in his remaining years, let our family be his family. Emily is quite prepared to do that. Since I learned my results it would be easy for me to turn my back and say, “I’m out of here. Twenty-four years I’ve lived with this, it’s history. I don’t have to pay my dues to the Huntington Society anymore. I don’t have to go to the meetings anymore.” But I don’t feel that way at all. I feel a sense of duty. I don’t have a lot of time, but if I can be available for somebody that wants to have a chin–wag, especially at risk people, I think the story that I have to tell could really help a lot. I’m not trying to brag, but I’ve never been so aware of how a person can go 180 degrees in their thinking. I’ve never done that on any other issue in my life, and I think it is important to understand how each person and family affected gets through these things.

I wish I could have taken two or three days after the results to think about what happened. I would have liked to have had some quiet time to process everything and put it to rest. I also wish I could talk about it to more people. But again, I think most of my pleasure from the whole thing is for my children. It’s nice that they can look at their uncle and realize that they don’t feel threatened just as I don’t feel threatened. I can look at him or I can go to the Huntington’s convention and see people and realize that that’s not me in five years or two years. I don’t have that fear anymore. That’s when you feel like your load’s lightened.

Postscript: Colin and his family moved back to Ontario to assist with caring for Colin’s brother.”