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Living Life to the Fullest with Huntington’s Disease

Reading time | 4 mins

When I was 23 and started noticing the involuntary movements of my hands, they reminded me of something familiar. That's exactly how the disease started with my mum. The easiest way to deal with it was to brush it off, rationalise it with the general stress of living, and that's what I did. Studying at the Technion (Israel Institute of Technology) was intensive, and in the background, mum's illness was already advanced, so I preferred to convince myself that it's all because of the stress and it will pass. It didn't. I wasn't surprised.

Me, Mum, and Huntington's Disease

I was nine years old when my mother experienced the illness for the first time, and at first, we didn't know what it was. I saw her strange movements, and then on top of that, there was memory loss, difficulty concentrating, and behavioural problems. I know it so well, up close. It's always been just the two of us. My parents divorced back in Russia, and all I remember from dad is his violent outbursts before we lost contact. We immigrated to Israel when I was nine because Mum had some family here, but it's always been Mum and me, the two of us. But, from the age of 11, we had another "partner" – Huntington's disease, a degenerative genetic disease that affects physical, cognitive and behavioural function. 

Two years of painfully familiar symptoms, and what did I do? I repressed them, made excuses, ignored them, and mainly tried to move on. It was as though if I didn't call it by name, it wouldn't affect me. But that's not possible; my repression did nothing to stop Huntington's disease. When it breaks out, it doesn't stop, even if you're really hoping it will. After I noticed I was starting to have memory problems and behavioural changes, I realised I couldn't wait any longer – I needed a diagnosis. I was 26 years old. It took two months to get the answers back, but that's not really a moment you can prepare for.

Even 15 years with a sick mother doesn't prepare you for it. Quite the opposite, you know exactly what it means, in all its most dark, complex and painful aspects. Until that moment, I was an optimistic person. The positive diagnosis overwhelmed me, left me breathless, exhausted; I felt empty and hurting. Mainly, I took a step back from life. I had to come to terms with the meaning of it.

My diagnosis gave me a new outlook on life 

Distancing myself gave me perspective, allowed me to ask myself questions and figure out what I wanted from myself. I realised that it doesn't matter how much time I have left – I want to try and live my life to the fullest, not let it pass me by, do what is right for me. I chose to live. I chose to try and make a difference with the time I was given. 

I don't know how much time I have left to live, that's not the point. The point is how you live your life. Ever since I was diagnosed, I do what's right for me. I dropped out of the Technion and started dedicating all of my time to Aharai, a non-profit organisation I've known since I was 11 years old, which was my inspiration for serving in the Givati brigade in the army, despite being an only child and despite all the difficulties along the way.  

I realised that I've always had a passion for education. I started as an instructor, and two years later, I was made regional manager, and I intend to keep going for as long as I'm able. Aharai gave me a chance when I doubted myself the most, in a time that felt like the hardest in my life. I was discharged from the army feeling that if I managed to get through that, I could do anything. This feeling still persists, and I try to pass it on to others every day. 

It's not easy, but I'll never let HD restrict me

Some mornings I can't hold on to a shred of optimism. Some mornings I wake up, and everything backfires. I make coffee, and it spills. I go out and forget to take my wallet. Some mornings, the depression that goes with this disease is crawling inside me, and just the battle with it leaves me drained. I don't give up because that is not an option. But more often than not, it's exhausting, and the bouts of depression are even more tiring than the physical pain. 

People talk about stepping out of your comfort zone – with Huntington's, there is no comfort zone. It leaves you no choice. You realise that you can't allow fear to lead you, define you, restrict you. I keep challenging myself, but the environment is even more challenging. I see people staring at me when I'm experiencing involuntary movements. I feel every reaction. You need to develop very thick skin to deal with people. Some people think, "poor thing". I don't think I am.

Huntington's is an incurable disease. It will defeat me eventually, but until it does – I can choose a life of meaningful action, and that is exactly what I'm doing.

NPS-IE-NP-00170 May 2021