Her Story Will End With Huntington’s Disease…What a Gift

Her story will end with Huntington’s Disease

& knowing that has been a gift.

Erin’s unique story began when she tested gene positive for Huntington’s Disease in 2007. Shortly afterwards she started suffering from depression, then received more crushing news, she was infertile. Despite those diagnoses she was determined to have a family and live a joy-FULL life

Now she is on a mission to positively impact other people’s lives by sharing her story and speaking about genetic disease, depression, and infertility.  She is the author of, All Good Things:  A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness  She shows it is possible to live a meaningful life even when faced with unexpected obstacles.

In this conversation we covered decades of Erin’s story from agony through to joy and I asked her how she found the strength to keep going and (fortunately for all of us) write her inspiring memoir…

Her Story in Her Words…

“I made a decision very early on in my gene positive diagnosis. Probably in the first couple of months…

I had read a book by Michael J. Fox in my early twenties. I remember picking it up and reading his story before I had any idea about my gene status. And he talks about how getting Parkinson’s disease was a gift. At the time I had no idea how that was possible? 

How Could It Be A Gift? 

I didn’t get it but I wanted to be the kind of person who could have that perspective. And I said to myself, “If I ever get a life altering disease, I want to be like Michael J. Fox.”

And somewhere along the line, early after I was diagnosed, I remembered reading his book and the attitude with which he faced life. And I knew that I wanted my story to be like Michael J. Fox’s. 

This won’t ruin my life and I am going to find happiness again.  Is what I told myself every single day, over and over and over again.

This Story WILL Be A Happy One.

I actively worked towards finding happiness. I had no idea if it was even possible because I was so depressed. I had no idea how it would ever be possible to accept my diagnosis. 

Being diagnosed as gene positive for Huntington’s disease, means I don’t have the disease yet but that I WILL get it. I just don’t know when.

So how could I live my life knowing that this horrible thing is going to happen to me? And how could I be ever be okay? It just didn’t make any sense to me, but I kept coming back to Michael J. Fox and I did little things each day to move me towards happiness.

One Day At A Time

I had this big, bright yellow coffee cup, and I would just drink my tea and coffee out of it; because looking at the bright yellow colour was something that added a little tiny bit of joy to my day. 

I was a runner, and because running helped me to process everything I was feeling, I became addicted to running. I loved running before the diagnosis. I used to run three or four days a week. And after my diagnosis, as the emotions got bigger and heavier, I turned to running 5, 6, 7 times a week. Running was the only thing that could release the rage and anger that I felt.

The Power Of Story

And reading was a huge thing for me. I would read other people’s stories. I read a lot of memoirs and I found that I always learned something. Sometimes there would be just one thing, just one part of their story that would hit home… I would think “Oh my gosh, I feel that way too”. And that would be enough to get me through that day.”

Why She Gifted Her Story To Others

It was at this point in our conversation, feeling a deep sense of connection to Erin’s story, that I noticed that her book was a brilliant way for her to pay forward the sense of belonging that had been afforded her through the many stories and memoirs that she had immersed herself in during her darkest days. 

It’s a beautiful reminder that whenever we get the chance to experience someone’s unique and vulnerable story, even if it doesn’t resemble our experience in the slightest, we are gifted the chance to shift how we see our own story and often gain valuable insights that we wouldn’t be able to see on our own.

“That’s one of the main reasons that I decided to share my story and write my book; because after I was diagnosed, I lived in secrecy and fear for far too long.

Her Story Got Too Heavy To Carry Alone

I was afraid people would find out my secret. Like I mentioned before, I did have a couple of close confidants, like some of my running friends and my husband. And eventually I told my family that I’d gone through genetic testing. Yes I had some people to lean on, but I was afraid to speak to them. I was so afraid that they would see me differently, figure out that I was broken and worse that they would leave me.

I remember that whenever I learned anything new about Huntington’s disease I would hide it from my husband, because I was afraid that once he found out the new thing, that would be THE thing that he would leave me for.  He has never shown any sign of ever wanting to leave me or given me any reason to doubt him; it was just all the fear within me. 

Sick of The Secrets

I knew I wasn’t really living my life because I couldn’t fully talk about what I was going on, or be myself. So, after years of living a half-life, I made the decision to stop the secrecy and to start sharing my story. 

As I was tapping into a newfound courage, I knew that all of the experiences I went through, were too big to piecemeal out in blog posts. I felt like it needed to be a book to truly capture and show how each experience I’ve gone through has led me to the belief that 

It IS possible to live a meaningful life even when faced with unexpected obstacles.”

There are parts of Erin’s future that are certain and destined to be filled with pain. And by choosing to fully embrace her story, she is showing the world what it means to truly thrive. From her Hot Mess moments she has learned, and is now teaching others, how to flourish; how to choose emotions, activities and thoughts that give this one precious life we’ve been given infinite joy, meaning and purpose. 

I’m honoured to have had the chance to speak with her. 

Get your copy of Erin’s Book:  “All Good Things”

Connect with Erin:

1. WEBSITE
2. FACEBOOK
3. INSTAGRAM

Erin’s Dance Party Tunes:

1. Kings of Leon – Around the World
2. Coldplay – My Universe
3. The Lumineers – Brightside