The Difficult Thing No One Talks About When You Have An Incurable Disease

I’ve been wanting to write about this for awhile. It’s a challenge to write about it without sounding off the world’s smallest violin. That’s not my goal. But, I do find it important enough to put it out there for those experiencing this disease or their family affected by it. I’ve seen others carefully share their experience with this  while others respond in the same tentative… almost reluctant way. We really shouldn’t have to. I don’t want to.  So what is “it”?

Feeling alone.

Two words, but weighs a ton in meaning. So, I’ll number off a few…

1. Feeling Alone with your disease

– I feel this way the most when I experience symptoms that no one seems to see or HEAR. Sometimes, I feel that people can’t understand that there’s an internal struggle I’m battling with because I look perfectly okay. But, inside? I’m screaming my head off. I’m panicking because I can literally feel the delay between what I want to say and what my brain is allowing me to formulate into words or thoughts. In these types of instances, I can feel trapped in my own head… literally. It feels like I’m at the mercy of it all. Simple. I know the answer is simple. It should be so obvious. But, the connection is missing a link… and for the briefest moments, I really draw a blank. It’s frightening. And, I end up feeling alone. It’s like I’m a character from “Inside Out,” but the body I control is malfunctioning. So, I sit there at the broken controls… watching the world go by, mute.

2. Friends and family

– I’ve  battled  my emotions in regards to this. I rarely feel alone because of this now, but I did at the beginning. It was a hard hit to see that even though you’ve hit rock bottom, everyone’s life continues on… uninterrupted. Harsh, right? It was a harsh reality to know that it became easier for me to pity myself and feel that way towards others around me. It was an embarrassing insecurity I had to deal with on my own because it was too easy to feel alone. This disease made you realize that even though you’re experiencing the full storm of it all, other people’s lives weren’t affected. My husband and kids excluded (because those close enough to this disease, experience the ripple it’s created. They’re too close NOT to ever be included in what I go through… ).  It made me realize even more that my insecurities and vulnerability felt like it was magnified tenfold.

3. Definition of self

– This was and is the toughest battle. Redefining who you are is hard. The disappointment and feeling of defeat is intensely woven into your being. You try to pick at it… hoping to remove it from the rest of your patchwork without unraveling everything you’ve worked hard to piece together. The who you were, who you are, who you will be statements becomes an isolating catalyst into that void…

So, what’s the point?

You’re not alone.

Sure…you feel like it sometimes. And, it’s okay. Sometimes we need to tear and rip into ourselves to create the muscles we desperately need to defeat this disease.

When I feel trapped in my mind, I try to remember mind exercises to help me focus. Most of the time, I allow myself to heal. Those moments of disconnect is a very clear signal from myself that there is something wrong, cool it. Evaluate self and move on. Dealing with my emotions regarding family and friends allowed me to grow as an individual. It gave me the ability to sift through my  positives and my selfishness. To avoid resentment, I had to tackle this emotional rollercoaster head on. It was worth it. And, having to deal with the redefinition or the kept definition of who I was helped me discover a whole new level of self worth. I’ve appreciated my strengths and weaknesses… and most of all allowed myself to embrace change. 

The “alone(ness)” we feel can stem from a variety of reasons and circumstances. But, I hope that by sharing just a little bit of what I’ve felt… you’ll feel less alone. I hope that there is less guilt, and more focus on improvement and the grasping of hope. ..

Think of it this way… my walk with Moyamoya is a lot like a stroll under a moonlit sky. Sometimes, I hit shadows… and many times I hit a clear lit path. Dark or light, it is a path. It’s not always perfect, but it’s my life. It’s worth so much more than letting Moyamoya run my life.  

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