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A Hope in the Unseen

November 23, 2018

Huntington's Disease Youth Organization

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I’m a firm believer that there is a power to positive thinking and planning. I think we can all agree that life is hard and a good majority of it is out of our control. The one thing we can control is how we take on challenges as they come. You can focus on the negative side of something, or try to find some glimmer of something positive in a situation. I try to always do the later- even when it seems impossible. Finding something good in the worst of moments helps me continue to seek more positivity and helps me recover from life’s blows just a little bit faster.

I know…I know. That is much easier said than done, but there is no better example of this than a lot of what I see each day and what I have learned working with others.

I’ve always had a passion for helping others. I never thought I always had all the right answers, but I knew that I was always willing to listen and try to find solutions or just be a sounding board when there were no solutions available. Although I was adamant about helping others, I wasn’t sure exactly what the path was going to look like. When I was young (and admittedly a bit naive – as we are all at one time), I figured I’d find a job and instantly I would “save the world.” Well, shockingly (or not at all) that isn’t how the world works. My first few years in the field had several road blocks. I kept finding myself in positions where contracts weren’t being renewed (meaning I was always feeling like I needed to look for work) and I was often working with populations where hope seemed impossible. There seemed to be so many barriers for the individuals and families I worked for that I had moments of thinking “what is the point?” I was working hard for my clients, but there were so many systems designed to keep them down I wondered how I could ever find anything good.

I kept pushing on and there was one theme that I kept seeing creeping its way to the front of my focus. When things looked the toughest, when the families seemed to be left with nothing – there were still moments of laughter, moments filled with smiles and even an “it’s going to be ok.” The ability to find hope in the unseen is what makes us as humans amazingly powerful beings.

This has been made abundantly more clear to me the longer I work with HD Families. Truthfully, I had a lot of people caution me against taking this position. The practical people worried about joining a small, start-up non-profit and the security of my job. I told them that clearly all these past positions were no more secure. They worried that it was a lot of responsibility. I argued that this was the opportunity I had been waiting for to help create something amazing that made an impact. And, lastly, they worried about burn out – “how will you deal with all the loss” they asked. I responded that I didn’t know, but I was absolutely willing to share the burden with the families.

Does HD suck? Is it full of grief and loss? Can there be days where things seem like they can’t get much worse? ABSOLUTELY. But!!!!! There is an ability to find hope in the unseen in the HD community unlike I’ve seen anywhere else. The HD community has taught me more about hope, resiliency, empathy and compassion then I ever thought I could learn. I’ve always tried to be a positive person and find the glass half full, but I’m even better at it now thanks to you (yes you!). Never let anyone or anything tell you that life is hopeless. For all of you fighting the battle against HD, there is hope, you deserve the good things and you are not alone. Thank you for helping me grow and learn. I’m honored to be on this journey with you all.


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