I have been feeling that this rare disease is a curse lately. But then, I fell into a hot pot of kismet.  I met the subject of the documentary, Love Heals directed by Krisanna Sexton, released 2022.  If you haven’t watched it, you should.  So, Dana (the subject of the documentary), also does some work helping people to budget their finances more thoughtfully in all situations.  My husband and I recruited Dana to review our budget and offer suggestions.

As it turns out, Dana also went through some interesting medical issues and had to reevaluate everything in her life as well.  She was kind enough to share this documentary about her journey with chronic and constant pain.  The documentary is currently making the rounds and winning awards at several film festivals.  When we first met, our advisor had briefed Dana on the special financial situation, so Dana and I bonded almost immediately.

“Brutiful”…A New Word to Describe This Rare Disease Curse

Being the Hype Man that I am, I immediately started following all of the movie’s social media.  Dana recently posted about her “Brutiful” experience.  That word hit me right straight in the feels.  Can living with the knowledge that your brainstem is under attack 24/7 be both Brutal and Beautiful?  In my experience, yes, that is completely true.  I know that is not everyone’s truth, so I can only explain it through my own perspective.  Let’s dig in, shall we?

In the still, small moments that I allow myself to grasp the full depth of what is happening inside of my skull, I know that this is unfair and tragic and sad.  Knowing that my daughters both know when I am overstimulated and need to get out of a situation is tough.  Knowing that my husband is a more reliable source for my doctors than I am is a hard pill to swallow. 

Fighting the air to find a simple word that I used to use frequently in my every day conversation is maddening.  Knowing that people automatically assume that I don’t know what is happening to me. Or that my intelligence has somehow been affected in all of this is troubling.  I hear it in the way that people speak to me.  It can feel reductive and patronizing when I am spoken to as if I am a small child. These are the moments of brutality.

Turning the Rare Disease Curse Into Something Meaningful

Those moments are diminished when I write a piece that makes others feel understood.  I feel so much better when I can offer good advice to someone who is new to this diagnosis. Or when I can be there for family members of a person with HOD and offer some perspective and hope. All I need to do is just help someone through those brutal moments.  Man, it feels amazing when I can accomplish a goal. Like learning to walk without a mobility aid or reducing the stress in my life.  This is the beauty of the disease.  Perhaps, more fitting to say, the beauty of the HOD community.

I had never heard the word “Brutiful”, but it will be a mainstay in my vocabulary now.  I am grateful to the circumstances that brought both Dana and Krisanna into my life.  Although this is not an “HOD” story, it is completely relatable and helped me to see that my life is not over because of rare neurological disease.  I dare say, no, life is only beginning.

Your Turn…

How do you feel about this? Is this just a Rare Disease Curse? Can you turn HOD into something beautiful or therapeutic for you? Tell us in the comments1