This is an old one but still one of my favorites. For me it exemplifies an array of inner struggles.

This piece received the Honorary Special Merits Award on Capitol Hill during Rare Disease caucus week in 2016. This week is rare disease week which aims to educate attending Members of Congress, Congressional Staff and industry partners of the physical, scientific and political struggles rare diseases endure.

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I have been a public advocate for my rare and degenerative muscle condition since 2007 and it never gets easier. Most of the time being public about my condition makes me feel like this illustration.

I have GNE Myopathy, formerly named HIBM. GNEM is a rare genetic and degenerative muscle condition that ravages until there is nothing left to take.So far I've lived with GNEM for 17 years.

GNEM condition fits under the “Orphan Disease” or “Rare Disease” umbrella. A rare disease is any disease that affects a small percentage of the population, therefore has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.

However, it's thought some rare diseases, most which are genetic, are easier to cure than AIDS or Cancer, for example, but the lack of funds and awareness in a world-of-profit can be its greatest stumbling block. 

Rare diseases are known to be very difficult to diagnose and most face misdiagnosis for months or years. Through the years I’ve seen more than a few dozen doctors. Some of the best doctors did their worst work on me. 

5 misdiagnoses and 5 years later, I found answers but I also entered the lonely world of being unknown. Back then there wasn’t a bustling worldwide GNE Myopathy social media group filled with active patients like we have today.

When I was diagnosed in 2004 it was thought I was 1 in 1,000 worldwide. Today, it’s estimated there are 3,000 to 7,000 GNE patients worldwide.

Though GNEM is rare it has been identified in Middle Eastern origins (Iranian, Palestinian, Jewish Persian most common), Japanese, Korean and Chinese, European, South American, African, Hispanic - touching all corners of the world.

In the US a disease is considered rare if it affects fewer than 200,000 people, yet collectively there are 7,000 rare diseases affecting 30 million Americans nationwide.

Half of rare disease patients are children and often fatal. Only 5% of rare diseases have treatment today.

Well known diseases that people may not know are rare include MS, Cystic Fibrosis, Celiac and and fatal Duchennes MD which affects children.

It's known that rare disease research has changed and benefited research in other more common diseases like muscular dystrophy or cancer. Cancer, for example, involves mutations of DNA like genetic diseases. My disease is a mutation.

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When you experience a life-altering change, it's difficult. When that life altering change is unforgiving and relentless in its taking, it can feel like some colossal cruel joke. And, when you open yourself and your life as an advocate - for a condition that worsens every day - balancing the constant loss and sound advocacy is just another level of difficulty.

Life as an advocate has been all consuming.

I have done everything from acting as pro-bono Creative Director for a non-profit that was helping to develop treatment for GNEM, designer, mass fundraising and getting my disease into the media at a time when there were few public stories on us. I’ve created a few one-woman team grassroots projects, raising over $160,000 using only social media. I have forced myself to learn skills to help me better advocate like building websites, fundraising, building promotionals and media, social media and illustrating in order to communicate how I feel inside.

All this while working full-time as an Industrial Designer.

In the beginning of my advocacy I realized people didn't know the intimacies of what I and other patients experience. Seeing that there were no patients blogging and sharing online, I added life as an amateur blogger to my list - sharing my most intimate moments.

I'm in over 35 articles and/or media appearances for various reasons all stemming back to my rare condition. I've given speeches and lobbied congress during Summit week. But it doesn’t matter how seasoned I am at it. It’s still hard. Every single time.

It's been 10 years of advocacy and I'm exhausted.

In the beginning I had zero experience with nonprofits and blindly jumped in. I thought it would be easier but the world of rare disease is difficult to traverse and often political. I have learned much since those wide-eyed idealistic days.

I’m often hard on myself. I doubt my contribution because we are still living with this. But I try to remind myself those were chaotic and difficult days and I like to think I helped build awareness in a time where there was little of it. I have so many GNEM patients tell me they learned of GNE (HIBM back then) or I was the first patient they saw due to my Bike for Kam or skydiving videos. 

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As GNEM progresses, my body requires that much more will to continue living at this pace. More than ever my time, energy and hands are finite. I’m forced to narrow my focus. I don’t have that same body from 10 years ago. 

Despite my own attempts to escape only being known for my GNE Myopathy, I've realized my advocacy has just begun and as an independent advocate I’m conceptualizing how to approach disability advocacy in yet another new way, while  getting GNEM into the mainstream’s consciousness.

But in many ways, though, I’d prefer to fade from the limelight.

Advocacy often made me feel alone and I was especially lonely when there were fewer involved back then.

In 2007 my vision was patients sharing their stories from all over the world. I've always said since we are rare, it’s only the patients who can inspire a call to action. This vision didn’t quite happen during my most productive years with nonprofits but it definitely is today due to multiple patient organizations and GNEM patients’ efforts worldwide. 

Today, the face of GNE Myopathy advocacy is much different - with many global hands involved and I have to believe that one day treatment will be found...even if it doesn’t come in time for me. 

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I often hear, "You're an inspiration". I get it. I am inspired by others too, including other “disABLED” people but probably not in the same way society is inspired.

The truth is I don't want to be an inspiration. Sometimes this comment makes me feel like a fraud and is unwanted attention.

Like I'm on a pedestal under false pretenses.

The inspiration just wants to be “normal”, preferably unknown. 

Inspiration has its ugly side, too.

Australian activist Stella coined this as “Inspiration Porn” which is the “the portrayal of people with disabilities as inspirational solely or in part on the basis of their disability”.

It's a form of objectification and even fetishizing, something I see common with ambled bodied men as they objectify and are “inspired” by “courageous” girls who are disabled and/or in chairs . Stella explains society mostly experiences the disabled as “objects of inspiration” and this objectification is for the benefit of non-disabled people so they can feel motivated, inspired and project their, “I'm thankful, it could be worse”.

One of Stella's examples is those memes with an image of a disabled person or an amputee who is out there living their life and next to it it says, “The only disability in life is a bad attitude” or “Your excuse is invalid”.

Stella charmingly follows by saying, “No amount of positive smiling at a flight stairs has ever turned it into a ramp”.

Stella Young, the Australian comedian and disability activist, died at age 32 in 2014. Young was born with a genetic disorder called Osteogenesis Imperfecta, which caused her bones to easily break. 

 “The issues in my life come not from the fact that I break my bones occasionally, they come from the fact that I can’t get into the vast majority of public buildings I want to get into” -Stella

I completely agree with Stella on this pervasive nature. But I'm also not a rigid person and understand the flip. I don't think calling someone an inspiration is necessarily the issue, it's ones intentions and ignorance behind it that sets people off.

The thinking behind such statements has to change.

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Being the subject of people's glares of admiration can be deeply uncomfortable, especially from a complete stranger. I've had complete strangers ask me within seconds, “What happened to you?” as their eyes well up in pity while sniffling about what an inspiration I am - as if being out in public was some monumental brave achievement.

This is the kind of inspiration porn Stella spoke of.

It's the low expectations of disabled people that is objectifying. It's the scrolling through social media for those 1 minute feel good inspiration porn clips that, with pity's assistance, elevates ones “blessed” and “thankful” complex; a gesture sometimes quickly abandoned with a single swipe up.

I don't want to be that kind of inspiration. I want people to be open to different people and perspectives that last longer than self-gratification granted by inspiration porn.

I want them to change with action.

I feel it's my job to show society that I am the same as them, because I am. I know if I didn’t have an experience with something, I would want to be educated. But if they don't get it after that, then the ignorance they cling to is their own fault.

We all have limitations.

Some people can't draw, does that mean they're disabled and void of worth?

These “limited” parameters have been set by society but in reality we all have limitations and mutations. Our eye color is a mutation.

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While it seems easy for me to share, it's not. I'm relatively private and before this whole rare disease, I preferred to blend into the crowd. I go through much self-doubt and often uncomfortable with the transparency.

Throughout the years I've often weaved in and out, taking small breaks with advocacy so I can have a moment to be myself without GNE Myopathy.  

But I share because I know how much this life has touched me, more touching than I ever expected it to be. And I know many are going through the same kind of struggles with health, disability, life, loneliness, grief and loss.

For some, being told you're limited only quells a greater desire to prove them wrong and that is what happened for me, and I don't want others to feel limited. There is so much life to live. I share my travels not to brag but because I want others to see that whatever they're experiencing, it doesn't mean the end.

But I also don't want my sharing to be baseline for others to judge or compare other disabled people to. Like a snowflake, every single patient and/or disabled person is different - even within their own circle. Not everyone can travel. Some are bedridden, some are riddled with chronic illness, social anxiety, depression or illness beyond the physical. And many don’t have support, financials nor the living arrangements to support a barrier free life.

Everyone is different. But I hope my sharing shows you can get out there and get lost even if it's in your own backyard, local park, passions...or your imagination.

It's possible our limitations are self imposed. 

So, if getting out there and living life is inspirational, then let us all be inspirational. 

If being vulnerable is inspiring, then let us all be inspiring.

If showing empathy and openness to those who need us is moving, then let us all be movers. 

Tomorrow is Rare Disease Day. Look for my "What is Rare?" post tomorrow.

Goodnight :).