Why walk on egg shells?

“Two weeks before her predictive test results, Regina described how she first learned about Huntington disease and eventually arrived at the decision to proceed with testing…

I was born in Ontario. I have one brother and one sister, both older than me. My grandfather died of Huntington’s the day after Mom and Dad got married.

I knew about the family history of Huntington’s as soon as I was old enough to understand, because my grandma was the type of person that ate, slept and breathed HD. Even when we were very young, HD was always in the forefront when Grandma was around our house. My dad was in the military so we moved around a lot. He started showing signs of HD about 13 years ago. At first it was nothing really major. You start seeing little signs—the handwriting goes, you lack coordination in some things. Mom was the first one to notice it but there wasn’t a big “to do” made about it. We had a totally different attitude from what I was raised with around my grandma. Things were always done as much as possible in the way Dad wanted. Nobody had the attitude “No Dad, you can’t do that ‘cause you got Huntington’s.” It was a matter of finding a way to do it. I was very close to my dad; I was probably Daddy’s little girl. We were it, him and me. So losing Dad hit me very hard. Dad was a very special man. I never heard anyone say a negative thing about him. He would do anything for anybody. He would give the shirt off his back.

I love my mother because she’s my mother, but I don’t have a close relationship with her. All of us kids moved out of home very early. We were 16, 17, 18, in there. Since then each of us has, at one point or another, been on the outs with my mother. As far back as I can remember, the only time we’ve all been speaking was just before Dad died, during that process.

“We decided that we were willing to take the risk with one child, and we felt that risk was okay, but we weren’t willing to take it with more than one.”

My husband Mark and I probably would’ve had two children if it wasn’t for the Huntington’s. My ultimate was always to have two children. As it was, I had my tubes tied when Geoffrey was six months old. We decided that we were willing to take the risk with one child, and we felt that risk was okay, but we weren’t willing to take it with more than one.

Huntington’s is not something we talk about a lot. It’s there but it’s not there. When Dad was quite ill, I did however do one thing that was probably very strange. I told Mark that, if he had any second thoughts, the opportunity for him to get out of his relationship with me was now. Once I got sick it would be too late. He said he was in for the duration. People would say to me, “You’re so mean for putting him in that position,” and I said I have to know in my heart that if I get sick he’s there because he wants to be, not because he feels obligated or trapped. That means a lot to me. The last thing I want from anybody is pity.

I found out that there was a predictive test a couple of years ago. At first I really didn’t care. I wasn’t willing to make that decision in my life. I don’t know why it’s changed, maybe it’s because my life was so busy for such a long time that I never had time to think about it. I know my mom was upset when my brother had his test done. I told her he deserved a lot of credit because he had made a very hard decision, whereas I was riding the fence. I never decided whether I wanted it done or didn’t. Then all of a sudden it was bugging me all the time and I wasn’t sleeping. Not being a very religious person, I thought somebody somewhere is telling me that it’s time I made the decision in my life. Instead of being in my subconscious it was kind of consciously there all the time. I thought there’s got to be a reason for it.

I’m a very spontaneous person, so as soon as I decided, I called. Then I was on a waiting list for about six months. That seemed pretty long because I’m very impatient. If I go shopping and I want to buy something, and they don’t have it, God help you ‘cause I’ll go somewhere else and buy it. I’m very much impulse on some things. I want it now; don’t wait.

My husband was totally against me having the test and it finally came down to “well, it’s my body, my life.” It’s not that I didn’t listen to what he had to say. I did. I weighed the pros and cons. He said he was afraid. You see he was a very big part of my dad’s life. He was very close to my dad and he had a very hard time when Dad passed away. He said he didn’t want to know. I told him, “Fine, I won’t tell you. If and when you’re ready to know you can ask me and I’ll tell you.” He’s not going to be here when I get my results since I didn’t get my appointment until after his work commitments were set. He did go with me to my counselling appointment, and he did voice his concerns. That’s fine. I listened to them, but I’ve made my decision and that’s where it stands. Nothing anybody says or does is going to make me change my mind.

There wasn’t a lot that people at the clinic told me that I didn’t know already. I knew about all the research that had developed because they found the gene. That was about a month before Dad died. When Dad passed away, the Huntington’s research received whatever tissues they wanted to use for their studies. That seems to help me a lot because I know that Dad was the type of person who always wanted to help if he could. Knowing that he would feel that he went through this for a reason has helped me get through a lot. It’s like when I go to the clinic and they ask if a student in genetic counselling can sit in on my appointment. I don’t mind because it just brings more people in that know about it. How else are they going to learn?

Geoffrey has grown up knowing about HD. We’ve always been firm believers that anytime he asks a question it’s answered honestly. If he doesn’t ask, we don’t volunteer the information because we figure when he gets older he can ask then. Geoffrey doesn’t know anything about my test. What am I going to tell him to make him understand? Right now it hasn’t come up, so there’s no sense bringing it up. He’s only eight years old.

If my test comes back negative we don’t ever have to worry. The only thing we have to tell him is it’s done with and you don’t have to worry about it. If it comes back positive, then he is going to have questions and they’ll be answered at the time he asks. We’ve never lied to him about anything, but we wait and let him do the initiating.

Either way the test is going to answer a lot of questions about Geoffrey and for Geoffrey, but also there’s little things that Mark and I always decided. One of the things I always wanted to do is go on a cruise. I’d like to go when I’m in my 30’s rather than when I’m 50 because I plan on having a hell of a good time. Also, we have always agreed on the fact we can comfortably afford to help Geoffrey through university without going into a great deal of debt because we set our goals for paying our house off.

“ Everybody’s got their own circumstances, their own reasons as to why they want to know what they want to know. I think it would make a very big difference if somebody was making this decision and they didn’t have some kind of support around them. Then I don’t think it would be a smart move.”

Everybody’s got their own circumstances, their own reasons as to why they want to know what they want to know. I think it would make a very big difference if somebody was making this decision and they didn’t have some kind of support around them. Then I don’t think it would be a smart move.

There are other people that know I’m having the test. It’s not like I’ve ever tried to hide it, but I also don’t volunteer the information because I don’t think it’s something people want to hear about. I told my friend Denise when I first called to get the test done. I don’t think it ever came up after that, but she knew roughly when my appointments were.

Results’ day is no big thing. I have to work till I go for my appointment, then I’ll drive into the clinic and if somebody wants to come with me that’s fine. It’s kind of hard to get somebody to go with me though, as most people work Monday to Friday, and it’s a 2 hour drive. I’m fine with it, though. I had originally intended on doing it on my own anyway so nothing has changed. It’s not like anything’s going to change.

Two weeks later, Regina went to the clinic and received her predictive test results. Her friend Denise went with her. When Regina learned that she had inherited the gene that causes HD, she did not have a strong emotional reaction. About a year later, Regina explained why this was the case.

Just before going to the clinic, I felt good about my test results. I’m a fairly positive person, but if there’s something negative to consider, I’ll usually find it. Or at least, I used to be like that. So it was really strange that with something like this there were no negative thoughts. I was convinced that maybe it would be good news. Once they told me my test results, I just said “okay.” My friend Denise and I started joking back and forth and talking about booking our cruise and that was basically it. They kept asking questions and drawing the session out. When we left, Denise and I almost said at the same time that it felt like there was something that was supposed to happen that didn’t happen. I didn’t have an emotional reaction, I didn’t break down. And I still haven’t. I thought about that and I thought why? Usually when you have an emotional reaction there’s something that’s caused the emotion. Like when you stub your toe, you cry because it hurts. Or somebody says something to you that hurts your feelings. It upsets you, but it’s usually relevant at the time. Well, the news wasn’t great, but I’m wondering if maybe the reason I didn’t have this big emotional reaction I was supposed to have was because it’s really something that’s not relevant right now. Maybe the time will come when I’ll start showing signs and symptoms and that’s when I’ll feel that it’s an appropriate time to have a reaction. Right now I guess I could break down and cry, but what am I going to be crying for? Nothing’s really happened to make me react that way. I control my life, not HD.

They were telling me the future, that’s all they were doing. It’s not now. Giving birth to Geoffrey, that was emotional! But there was a reason for the emotions. With this, there hasn’t been a reason for the emotions yet. Maybe when there is that’s when it’ll hit me. Crying over something that hasn’t happened yet is kind of like putting the cart before the horse.

A couple of weeks after I got my test results I got a phone call from the genetic counsellor. They wanted to know how I was doing and if I was okay. And I’m thinking, “What the hell’s going here?” Is there something wrong with me? Am I going to be in the shopping mall and all of a sudden be an emotional basket case? What are they looking for?

Are they really looking realistically at what people are doing and dealing with and how it’s affecting their lives? Before your test results you have to fill out a package of questionnaires. I might understand the relevance of the questionnaires if they were personalized but I don’t like being forced to choose one or the other answer if it doesn’t relate to me. I guess I deal with things very differently than most people. You just play the cards that you’re dealt and go on. I’m not one to talk about the problems that are going on in my life. There’s always somebody else out there that’s having worse ones. I guess maybe I have a very callous attitude. I don’t know what it’s called. I guess I was never going to be the textbook patient.

It’s not denial. It’s called going on with your life and dealing with reality and not allowing Huntington’s to run your life. I have my life to think about, and I have Geoffrey’s life to think about. Nobody says what I feel is correct. Some people agree with me, some people don’t.

Mark did come to me and say that he was ready to know my test results. When he asked me, I said, “What do you think my results were?” He said, “Well, I just thought it was good news. You’re fine and nothing’s been bothering you.” And I said, “Well, actually you’re wrong.” He didn’t quite know what to say, and basically from that point on he just totally withdrew. He was a totally different person than what I expected. He did everything with Dad. And he was right there by his side no matter what he needed, any time of day; moral support, emotional support, everything. You couldn’t have asked for a better person. And he just said that he went through it once and he didn’t think he could go through it again. I’m pretty happy with my life right now. I’m involved with somebody new named David, and I have Geoffrey. It doesn’t look too shabby. My relationship with Mark, my ex–husband, has it’s ups and downs. I’ve made a lot of sacrifices for Geoffrey and put up with a lot for him, but I figure I have broader shoulders than he does and I’ll bounce back. Geoffrey is coping pretty well, and no matter how Mark and I feel about each other, Geoffrey is still number one. He spends a lot of time with his Dad and that will only change if his Dad wants to change it.

“It felt like there was something that was Supposed to happen that didn’t happen. I didn’t have an emotional reaction, I didn’t break down. And I still haven’t.”

I have a new job working in reception for a law firm. It’s okay but I will never be a lifelong receptionist. To change careers you have to start somewhere. So it’s definitely just a starting point. I also just finished six months of school. I dedicated probably 99% of my time to it and I came out with a 95.8% overall average. I took computer courses and accounting courses. You have to branch off and start somewhere.

So bad has turned into good. I got laid off and I got separated, but because I got laid off and I got separated I knew had to go back to school. If those things had not happened I wouldn’t have been in a situation where I could do it. So I’m starting to believe more and more that everything happens for a reason. You have to be optimistic somewhere in there.

The biggest hurdle I have had to cope with was telling David about HD and my test results. I guess it was a big hurdle because of the reaction I got from Mark when I told him. David had been really sick, and I knew that I was going to have to tell him sooner or later. He was almost better and we were sitting at the kitchen table at his place and we were talking. We hadn’t been dating very long, maybe two or three months. I said, “Well now that I’ve nursed you back to health, are there any other medical conditions that I should know about you?” He has a degenerative tissue disease and he’s got rheumatoid arthritis. Maybe that’s why he can relate so well. So when I told him about HD he just said “Okay.” And I said, “Well do you know what it is?” And he said, “Yes, but you can get killed walking out in the street tomorrow by a bus. Cancer can hit you, Alzheimer’s can hit you, a gazillion other things can hit you.” He said, “This just tells us that if nothing else does, this will.” So that’s kind of his attitude. Very pragmatic. That’s David.

I don’t really remember telling anyone else about my test results. The friends that knew I was having predictive testing listened to see if I had anything to say, and if I didn’t, they wouldn’t pump me for more information. So it’s on a “how I feel comfortable” basis. That’s how it works and that’s fine with me. People that have to know, know. I don’t go around advertising it to the world. Some people knew about Dad and they know the disease. They’ll ask about my risk and I have no problem telling. I’m still the same person, I just have this bit of information that other people don’t have. It doesn’t make me any different. That’s what I’ve told myself.

I wouldn’t tell my mother about my test results until I was ready. She didn’t know until at least a couple of months after. I think I was mad at her when I told her. She hasn’t been there for me. I’ve been through everything on my own with my friends. I am lucky in that I have some really good friends. I also know who I am more than I ever have before. I’m quite happy with my life and the way it’s going. I’m not out there for everybody’s approval. What I’m doing makes me happy and it makes Geoffrey happy, so that’s what counts. Maybe that’s why my attitude is different when it comes to HD, too. Going to the clinic causes a lot of uneasiness for me. It brings so much back again that I’ve already dealt with and put behind me, stuff that I don’t think needs to be brought up again right now. For some reason, I seem to be the abnormal one and I don’t quite understand why. I go in to the clinic and they want to know what’s happened in my life in the last year and a half. I say. “Oh, not much.” “Why do you say it’s not much? You got laid off, and you got separated, and you have a new relationship.” Yeah, I do, but it’s my life; it’s no big thing. Do they want me to say all of this is caused by HD? It’s not. It could have happened if there wasn’t HD in the family. I’m just too damn stubborn to allow HD to alter my life and change who I am. Maybe that will be to my disadvantage down the road, but a round peg just doesn’t fit into a square hole.

I still don’t really know why I wanted the test. I haven’t altered the things that I do in my life. The only thing I might change is I don’t worry about putting money into an RRSP anymore. I’m optimistic, though, that they are going to find a treatment. And then the information from my test might come in handy. They might find a drug they think can prevent onset of HD. If they didn’t know who was going to get it, they wouldn’t know who to give it to. So there’s an advantage. If that test wasn’t there, they would only have a 50:50 chance of finding people that fit into the right categories.

“I’m still the same person, I just have this bit of information that other people don’t have. It doesn’t make me any different. That’s what I’ve told myself.”

Knowing what I know, I just sit back and think about it realistically. Is it altering my life now? I say no. Is there anything I can’t do? No. Well then why walk on egg shells? Why not live your life the same way you were living it before? Nothing’s changed. Nothing physically has changed at all. You have one little bit of information that not everybody has the opportunity to get, and that’s it. That’s the only thing you’ve got that’s different. So why should it change your life? I don’t think it should. I don’t know if that’s right, but it makes sense to me.”