Huntington’s disease (HD) has obscured my outlook. My spirit suffocates while my mind grapples with scenarios that could only make bad situations worse. At times, I feel hopelessly boxed in by my disease.
I’ve had to conjure up some hope, so I sat down, made a list, and...
Here are five ways I plan on doing just that.
1. I will empower myself
I was paralysed by the fear of what HD would do to me. Now, I realise this fear put me right where HD wanted me: feeling weak and vulnerable. That crossed the line.
Ready, willing, fearful, and able, I can serve as my own best advocate. Fear and the ability to collect information are not mutually exclusive.
I still remain powerless to stop HD’s relentless deterioration of my brain. Yet, I realised that I was preventing myself from handling any problems that came my way. That attitude came to a screeching halt.
I’m uniquely qualified to look inside myself to isolate problems and to identify what scares the hell out of me. Based on the severity of what comes, I can either ease the damage or brace for its impact. Sometimes, you know there’s nothing you can do but get ready for change.
I remember Christmas Eve 2009, waiting to hear from my doctor’s office. My husband was with me as I was about to pick up the phone and hear my results straight from the testing centre.
I instinctively knew the results. I’ve never won a lottery, a raffle, a prize. My luck is notoriously bad. Why shouldn’t my genes be? I picked up the phone and bitterly spat the word “hello” into the receiver.
“Ms Foster,” a sombre voice answered. “The results aren’t as we’d hoped.”
The years since flood back to me now. I have a real sense of satisfaction with how I’ve navigated the time since my diagnosis.
Therefore, I am not helpless. I have me.
2. I will treat the symptoms as they come
As I wrote this entry, I realised that I was needlessly going down with the ship. I realised I was in a major depression, and I’m working with my health team and family to come out of it.
It’s all baby steps, every day. But at least I’m doing something about it.
3. I will end the isolation I’ve put myself in
The more I eschew the world outside of my house, the more daunting everything becomes.
That’s my pattern.
I’m now trying to get to grips with it all and stop banishing myself to solitude. I’ve started reaching out to friends in all sorts of ways.
I’ve started calling my best friend every day. I text my sons and brother daily because they don’t like voice calls. Another group of friends doesn’t text at all, so I email them once a week.
I’m using social media to reach out to others. The great news is that they’re all reaching back. That’s quite a comfort.
4. I will take it easy with routines
A central feature of HD is apathy.
As a result, trying to do anything is like riding a mechanical bull. Even simple things, like washing or brushing my teeth, can be challenging.
Imagine you’re trying to organise your belongings and tidy up. Now, imagine trying to do that on a mechanical bull, with a setting that gets higher and higher the more tired you are.
Pictured it? That’s how I feel with just one aspect of my daily frustration.
That's why I need to celebrate small victories when it comes to making my life easier. I carry around everything I need for the day around in a massive bag: keys, eyeglasses, technology, and a bit of dark chocolate.
It sounds so simple, but just having everything I need with me at all times makes daily living so much less stressful right now. That's a start.
5. I will remind myself that I’m not my Huntington’s disease diagnosis
It’s a cruel diagnosis, but I won’t let it crush my spirit. I will view HD as a prism from which painful distortion comes with a colourful range of emotions.
I’m not my disease. I have hopes and dreams like everybody else.
I look at myself as a symbol of hope.
And I am reaching for it.
NPS-IE-NP-00289 May 2021