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woman fishing in the mountains contemplating life with Huntington's disease

Escape to the Mountains: Running from Huntington's Disease

Reading time | 5 mins
Moving house can be a drastic change. Sarah Foster explains why moving house will help her come to terms with life and Huntington's disease.

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I am moving 450 miles away so I can enjoy the beauty of the mountains. 

I've lived here in New Bern, North Carolina, USA, for a dozen years. I never thought I'd leave my town and my house, but now I can't wait to go. 

When I moved to New Bern, I had no idea I'd meet so many wonderful people. There's always a friend who's ready to grab a coffee or another to hang out and chat on the porch. I have the most amazing neighbours who bring over the world's best chicken soup when I get sick. Every single time. 

For ten years, my friends and I have talked about Huntington's disease (HD) and what it would eventually do to me - but we spoke like it was happening to someone else. As if it was a case study out of a medical book. 

My friends were always happy to see me, but they never gave me a hard time when I needed to stay at home. They knew it wasn't about them - an insult or a slight. It was about me. 

When compassion can be too much

But I didn't know how real it could get until it started getting real. Until everything started happening - really happening - and I couldn't bury my head in the sand with "this could be normal ageing" rumination.  

I can't endure the daily reminders of my friends' concerns. Their love. Their compassion. 

I don't want it. I want it for my family, but all the concern directed at me makes the reality bite that much harder. 

So, we're selling everything and moving to the middle of nowhere. 

We're going to an isolated area of the state, but not one without resources. There's going to be a mobility service dog in the picture, which I'm looking forward to. Also, I'll be very close to a hospital that specialises in brain-wasting diseases. 

Best of all, I'll be moving closer to my best friend, Nina, and her husband, Ralph. Perhaps they can give my dear husband some relief. 

I need someone who remembers me before Huntington’s disease

When I'm around Nina, I can be more functional. She's known me since I was 12 years old, and she's hard-wired into getting a certain level of response from me. She's unapologetic about expecting that version of me, my healthier self. And it works, to an extent. 

Related: Living Life to the Fullest with Huntington’s Disease

My uncle also had HD, and he languished in a nursing home bed. Everyone assumed he wasn't functioning, but, in truth, no one was asking him to do anything. This went on until his own lifelong friend burst into his room one day and insisted my uncle and he went for a ride. My uncle popped up out of bed as if he'd just awoken from a nap. That's the way it is with Nina and me. 

Escaping to a new home to accept myself and my illness

The process of finding a place to live has been traumatic and drawn-out. Right off the bat, I found the most amazing house with a fantastic view. I couldn't imagine such a beautiful place existing anywhere else and quickly imagined it was the only place I could possibly spend my nadir. Sitting on a chair on the deck and staring down at the valley. 

Forget that it was a full 30 minutes from Nina and in a town where we knew no one. Or that it was over budget. I had blinders on and stubbornly followed that deal right until it went south. The house was in danger of falling off the mountainside, but I still had hope it could somehow be stapled back on. I cried and cried when that deal fell through. Then grieved some more when we found a bigger, less pretty version of the same house for the same price, and the owner wouldn't accept our offer. 

Next came a Hobbit house a mere two miles from Nina. I had initially disregarded it because the doorways were too short for Randy, but he didn't mind. We both fell in love with it and mourned the day when the inspection showed us it had a river running beneath it. 

My soul became calloused and jaded about the process. I gave up looking for houses and started looking for land. I became obsessed with researching how to convert storage buildings into liveable homes. That would be the only way we could live near Nina because there weren't any houses. 

So, I was blown away when Nina texted me and said the couple who lived on her mountain, 0.2 miles and practically shouting distance away, were thinking about selling their cabin. It's small and beside a small river, not on top of one. I can learn how to fish in that creek, as it doesn't take much physical prowess or much executive functioning. I can get someone to bait my hook and hand me the pole. Then I'll wait. I have a lifetime of experience with waiting. 

The thought of some happiness brings me peace

We're getting it inspected, and I hope it passes. It will be worth all the self-imposed drama to end up on Nina's mountain. I'm trying hard not to do what I've done before and imagine my life there, but it's hard not to fall into these patterns. It's what I do to self-soothe - imagine happy micro-futures to balance out the macro-unhappy future that's crashing in around me. 

I think of cookouts and campfires and driving around, despite being unable to walk, talk, or behave normally. I can compensate by having fun in nature and with my friends. 

Related: 5 Ways to Find Hope with Huntington’s Disease

And, somewhere in the middle of it all, I can hopefully accept who I am, who I'm becoming, and how I will meet my end. 

I won't have to watch anyone be sad about it or feel like I need to avoid them to protect them from the truth. In the mountains, what you see is what you get - a beautiful view and aloneness, if I want it. 

So, yes, I'm moving 450 miles. I'm pulling out of New Bern, going up and down mountains, across creeks, and into a distance sunrise. And I'm not kidding myself. I know Huntington's disease will still overtake me no matter where I go. 

But I'll be waiting with my fishing pole. 

NPS-IE-NP-00331 October 2021