One soul, two bodies: The role of friendship in coping with serious illness

As a kid, I never retained a best friend for more than a couple of years. Switching between three elementary schools and two middle schools did not provide the stability one would hope for when trying to make a lifelong friend. I envied my classmates who could brag about the fact that their friendships endured since the beginning of Pre-K. I wanted so badly to know what it would be like to befriend a person with that level of intimacy and history.

In December of 2008, the opportunity arrived in the form of a curly-headed kid walking into my first environmental club meeting. His first words were, “Hi, I’m Daniel. Is this the Green Tiger meeting? How can I help?”

Nearly seven years later, Daniel no longer has to ask how to help. He knows me too well; I often receive phone calls from him right as I consider calling him for support or to share exciting news. If we want to delve into pop culture, he’s definitely in my Top Five.

Our friendship is unique. He is one of my very few close friends who knew me well before my genetic testing for Huntington’s disease at 18 years old. Huntington’s disease is an incurable and fatal degenerative brain disorder that causes its victim to lose their ability to walk, talk, think and reason. My mum suffered from HD and, seeing as HD is genetic, I also had a 50 percent chance of inheriting the same fate.

Daniel first learned of this personal history of the disease about eight months into our friendship. At this point, I still struggled to figure out how to share my story with people. He was one of my first test subjects and he passed.

As the years went on, he was the first to listen to my attempts to voice my internal struggles. He is one of four people outside of my immediate family who has seen me cry. Most of the time, these tears have been the result of topics most 17-year-old boys never have to listen to.

It was Daniel who first learned that I had considered suicide if I ever became symptomatic with Huntington’s disease. It was Daniel who first learned from me that my mum had died. It was Daniel who was the subject of the poem for my answer to Stanford’s admissions question, “What matters to you and why?” It was also Daniel who was there to hold my hand as I braced to hear the genetic testing results that would forever change my life.

Aristotle was apparently quoted as saying a friendship is one soul living in two bodies. When I think of all I’ve put Daniel through, I sometimes cannot fathom how he still remains my friend. Whatever reason he comes up with, I’m just thankful that he has never left me.

Growing up, many people assumed we were dating. I suppose it’s hard for adults and other teenagers to imagine that two teenagers could ever be so close and not be in a romantic relationship. I’d be lying if I said we didn’t consider it. (It was my senior year and lasted all of 30 minutes of consideration.) We were lucky enough to have parents who reminded us how unique and special our friendship is and that putting an expiration date on something like this for a high school romance would be naïve and dangerous. I’m so glad we both listened.

Daniel and I have remained close despite our long-term distance. (I study in California, he in North Carolina.) We have remained close through each other’s romantic relationships (and been there for each other during the difficult break ups). We have remained close despite the challenges adulthood has thrown at us and together, our soul has thrived. We challenge each other, educate each other, and push each other to reach outside of our respective comfort zones. I am constantly becoming a better person through our friendship.

When I reflect on my experience with Huntington’s disease, I do not know how I would have coped without Daniel. While there were many days I felt guilty for burdening him with the emotional load that is Huntington’s disease, there were also many days were he made me feel ethereal happiness. Some of the best days of my life, from exploring Montana to traveling to environmental activism events, feature Daniel. He is an inseparable part of who I am. I would be lost without him.

If I could wish one thing for every person on this earth, it would be that they could someday find a Daniel so that they too can know what it is like to experience this type of love.

This piece is quite obviously dedicated to Daniel. I love you and thank you for always being there for me. Here’s to becoming old wrinkly friends eating ice cream on rocking chairs. I’m more than thrilled to join you on our journey there.

Love,

Kristen

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Kristen’s Stanford admissions response to ‘What matters to you and why?’

Stanford asked ‘What matters to you and why?”

and I wonder whether it’s best to outline this through the medium that matters most to me

a medium that seems to always show what I am thinking better than prose can.

Poetry done well can make you connect to people you didn’t think were similar to you at all

and if we want to get at the heart of things

poetry has a way of pulling those strings and making you think about what is really all that important in your life.

So my poem/essay starts with a friend.

This friend is a boy and no we will NEVER be in a relationship

but I care about him as much as I imagine two 90 year olds do when they sit in their rocking chairs

holding crinkled, knotted hands after sixty years of marriage

thinking about the day they met

able to express their appreciation for each other with the blink of an eye

as if a wink from an orb that has seen so much, and at times, too much, can actually say

I love you.

In this cynical world of economic recessions and conflicts that sink you into a depression

having a friend who can point out the glowing hope at the end of a shooting star and tell you

“That’s how bright your future is”

can lift you beyond the Heavens into a celestial body you didn’t realize you were capable of fulfilling 

And when that friend understands saying nothing at all works as well as saying just the right thing

it makes the loss of your mother that much easier

Few realize that all you need when the world shatters around you is just one solid piece under your feet

supporting the weight of your pain,

even if it takes the strength of Atlas.

When you can release your soul and not fear judgment like you would from some other human who has declared himself God

you know you have placed your world in good hands.

Aristotle said a friend is one soul living in two bodies

and without my own best friend, I’d be nowhere near reaching my soul’s fullest potential

Find out more about Huntington’s Disease here, and watch Kristen’s documentary here.