Testing negative and remaining positive

Michelle and her husband, Leif
My mum has had HD since I was about 14. She was diagnosed when I was 16. The week she found out she was positive with HD I found out I was pregnant (not a pleasant week!) but from then on I have lived at risk of HD . There was talk about me having an abortion, I guess for two reasons, age and the HD gene. I wasn’t prepared to terminate the pregnancy so from that point forward my at risk status become a big part of my life and over time it became more powerful.

Over the years I always thought about testing but would always come back to not wanting to give up hope that I didn’t carry the gene. Coping with my mum being sick and all that comes with living with HD was enough; to add testing in there at different points would have been extremely difficult…and over a few years my brothers were getting their results so that was enough to cope with.

My eldest brother had his blood taken in 2000. He was suffering from mental health issues at the time and eventually decided not to get his result, which was good. At present he has still has not received his result; they are waiting for when he is ready. My mum went into a nursing home around the same time he had his blood taken and it was a very difficult transition time for my whole family.

A few years later my second eldest brother told me he was going to have the test done. I remember thinking "You cant do that we haven’t even spoken about it!" And what will that say about me? If you have it, does that mean I don’t? or if you don’t, does that mean I do? I mean I know realistically that’s not the case but even so I was worried.

When my brother told me he had a positive result my world turned upside down. It made my at risk status so much more real. I put my house on the market and felt panic about my future and my kids' future. I felt a strong need to get out of debt and do all the things I have ever wanted to do. It was a very difficult time. This eventually subsided and I took our house off the market (thank god) and I realized I was doing what I've always wanted to do. I have my house and my kids and that’s what I need to be doing so things returned to normal for a while.

Then my little brother told me he was testing and I started to worry again. At this point I had no idea why they would want to know this and why would they want to give up that hope that they didnt have it, but he assured me they wanted to know so they could use IVF PDG if they did have it and they were ready. So I braced myself again for what this meant for our family. I was certain my baby brother wouldn’t have it; there was just no way, but again we received a positive result and again my world changed and the reality of HD hit hard.

I am so inspired however by my brothers' abilities to remain positive in spite of their news. They amaze me with their positive outlooks and acceptance about HD. They gave me the strength to take the chance with the test; they had coped really well and received the most difficult result, I could do it too.

I think the biggest thing for me was timing. I needed to feel confident I could cope with a positive result. I needed to feel I could be strong for my kids and be there for them. Finding HDAC was a big part of getting to that point. Reading and learning about HD really helped me to feel more in control of my future as I discovered I had choices about how HD would impact on me and there were things I could do to hopefully put it off just that bit further into the future.

I started to plan what I would do when I found out I had the gene. Creatine, exercise and living healthy were going to be a big part of my life. I had lived my life thinking I have the gene so I needed to be prepared to hear it for real. I needed to prepare to let go of that little bit of hope and take on a positive result with a lot of ammunition!

What finally decided it for me in the end though was my kids. I have 4 kids who are 12, 7, 5 and 4 who ask a lot about HD. We care for my mum who is in a nursing home and they are faced with the realities of it all. They were starting to worry that I might get it, knowing my two brothers had it. I felt I owed it to them to find out. If I didn’t have the gene they needed to know now so they didn’t spend the next ten years worrying, and if I did have it then I would do all I could to reassure them and be positive.

I received counseling and then started the long wait for the result. I occupied myself with life and work and also started an online journal on HD Australia which is an internet forum i set up with another young Australian women, inspired by HDAC. www.hdaustralia.org I have lived alone with HD for most of my life so I wanted to offer Australian people an opportunity to receive what I had received from HDAC in a local context. Its been a wonderful…and the gang there shared the journey with me through my online journal

I always thought I was going to have hd. I always thought that’s what I will die of, my future was already planned. I felt I had signs and symptoms so I was really preparing myself to have that all confirmed. It wasn’t until the weekend before I received my result that I started to think about testing negative and started to get really scared. That either way this result is going to be life changing and extremely difficult. I wasn’t sure how I would cope with a negative result given that my two brothers had it.

The day I went in to receive the result, I had a feeling he was going to tell me not what I had prepared my life for -- and he did. I do not carry the gene. I felt like I wanted him to check it, make sure it was real. How could that be? I was shocked. I didn’t jump up and down and cheer. I just felt silent, like there was nothing I could really say. It was fantastic news for my kids and the relief that they will never have to live at risk and never have to live the life I have is overwhelmingly wonderful. The fact I still have two brothers who have this gene and my mum is in the late stages is overwhelmingly heartbreaking so the whole thing was rather emotionally complex and confusing.

As I left the counselors office and drove home to tell my kids, my husband cried and cried with happiness which was very beautiful. He was so happy for our kids and the fact that we have a future we never thought we had and I guess news doesn’t get better than that for a partner!

Telling the kids was such a relief, I will be forever grateful that I was able to share this scenario with them. After we told them we shared the news with other family and friends and all my online friends who were waiting in anticipation, which was very special.

I felt like I was sharing news that was going to make people so happy, and that was a privilege, but a big part of me felt like crawling in a corner and not speaking at all. I wasn’t sure what I should be feeling. I felt myself withdrawing and disconnecting from the celebrations. Ringing my brothers to tell them I was negative was hard; I knew they would be happy for me but I just wished so much they could have had this news. They were very happy though and probably did the celebrating I felt I couldn’t do.

As the days past I started to feel really confused. Everyone was happy and I felt like I couldn’t be happy and then I felt guilty that I wasn’t happy. I felt like this disease is sick. How can it possibly do this to families? Pick and choose who it will take and leave others behind to watch. Allow some to have children and families free of this gene yet others have to worry about there kids getting it and passing it on. At one stage when people were still congratulating me and asking me if I had returned from the moon yet or come back to earth I felt so confused. I never went to the moon, I never left earth.

I described the feeling like there was a car crash and my mum was severely injured and so were my brothers and now they have a very short future but I get to live. Why are people congratulating me for that? I know they are congratulating me because it is wonderful, but it’s a very hard wonderful. Someone described it as survivor's guilt. I'm not sure if I feel guilt, or just a strong sense of grief.

So although I don’t have this gene, I still carry this disease with me, just in a different way now. Until they find a cure I will always have HD. I have never lived a life past 40 in my head. The fact I now have a future longer than ten years is very strange and it's amazing how I'm now thinking of all the other ways I could die! As if HD is the only thing that was a possibility!

I feel that the fact that my brothers carry this gene means that my future will be looking out for them and caring for them. I can't imagine myself traveling the world and living a carefree life while they are getting sick, so I will continue to live my life for now and enjoy what I have in this present moment and continue to be inspired by their ability to accept what they have been given, as I adjust and accept mine.

A part of that for me is getting involved in fundraising, which I have done and have organized a concert at our local winery with my brothers and new found cousin who I met on HD Australia. www.adayinthevines.com I see this fundraiser as an opportunity to use my families life to help others and to celebrate the many lives HD has effected.

So I still feel strongly about doing all the things I want to do. I will never give up living my life to the fullest and appreciating everyday I am given, and I guess that is a gift I can take from HD.

Michelle