I’m not going to dance around this subject any longer.  It’s something I’ve sat with & ruminated on for years. It has caused so much ambivalence & mixed emotion for me at points.  I preface this post with an important distinction from most sources of this “trend” or “problem”  I see circulating in media & cyberspace.  People are being sincere in their views in sharing why they view me as an inspiration. I see this because quite a few of them actually knew me before my illnesses were apparent (or as outwardly so) & also know me after.  (I know they see me, & all of me).   Others have known me since I was very young & grew up with me. Some of these people may have never even known (until my need for transplant) that I was struggling with two rare diseases for most of my life. They admire me for other things than my advocacy & fight.  So when they say I’m inspirational they don’t mean it in a placating or demeaning way. That is why, while I understand the backlash against inspiration porn, I focus on the intent of of the message from the person saying those words to me & our relationship to each other before I even begin to open my mouth…

I started thinking about this subject a while ago when this TED talk by the recently departed Stella Young was circulating. Though I didn’t agree with everything she said, I totally understood her viewpoint & identified with many of the feelings & thoughts she articulated.

I occasionally do some public speaking when asked.  I enjoy it.  I don’t deny I have been through quite a bit of medical hell that people in both my LAM & TSC communities find painful & hard so it isn’t always easy to hear.   Some of them can confirm the worst fears they have for themselves or their loved ones with both of these diseases in my own story when I share it. Yet I know it offers comfort to a degree that I still am “living and doing” other things (tangible accomplishments they’d hope to achieve for themselves) outside of it; even when it becomes more difficult physically. Yet a few years ago, when I hit my first seriously rough patch, I went underground.  I couldn’t take people’s reactions. It almost felt like I was stealing hope.  I don’t talk about it much but I feel it important to acknowledge it happened.  But this most recent round was different. I was healed over & I took a different approach.  I am in a better place with my whole journey now.

The majority of my public speaking in recent years has focused primarily on raising awareness to other organizations. I do this to give a name & face to my rare diseases. Also a glimpse into daily life so they see these diseases exist & how they affect people.

Yet, I’m but a person at the end of the day. Just like anyone else.  I am not a symbol or beacon of anything.  This has often led to friction in some personal relationships with people within my volunteer circles & my response in sharing my own experiences.  I don’t sugarcoat.  Some feel I’m too honest & abrupt.  Too frank, swear too much, have a short temper, the list goes on.  Others yet claim to want to tell me how I should handle situations & interactions with people in my life when it’s not their place to do so.  It’s a fine line & dance sometimes.  I don’t want confrontation but I also don’t want pat judgement or assumption.  These people are few & far between though, thankfully.  I’m lucky to have more supportive & amazing people inside my communities and outside of them. I value those relationships immensely.

When I first started volunteering around 2004, it was as a means of giving back the support that was given to my family when little was known about TSC.  I grew up in a rural area; a small town of less than 1,000 people.   I never even met another family as a pen pal or in person until I had almost graduated high school (there wasn’t internet before then).  The TS Alliance was our only link & validation that other people like me were out there but they were a vital link to people, resources, & information.

When I put my foot forward (a few years after moving to NYC) to start volunteering some incredible opportunities came my way.  I also developed some wonderful friendships with people from all walks of life & experiences. Some continue to this day. Other adults with both of my diseases, parents, grandparents, siblings, & friends who love others with them. I value them all.  That’s why even when my health fails, I find ways to stay involved in my organizations & in contact because I find it meaningful & enjoyable.

I’ve also learned many valuable skills that I may not have gained otherwise because the communities & the nonprofits that serve them are small. They rely heavily on volunteer resources & people taking charge not only of their own health, but brainstorming resources & tailoring them to the communities they serve.  I wasn’t just a number.  I was also shown appreciation for my work.

I was mentored into a leadership role & a robust one.  Like any family, there are sometimes disagreements in my communities. People we butt heads with yet still have to try & work with. People we would (outside of this circle) never really choose to be friends with because we simply are not compatible or agreeable.

I’m not going into specific detail, but there was some deep pain at a few points where I did feel I was intentionally tokenized; placed on an impossible & wobbly pedestal. Or worse yet, seen solely as a useful poster child or a mascot as proof of action.  Also exhibited as a symbol of meeting an unserved need. Grudgingly tasked for projects only because of my specific label with in the community; not because my personal opinion, feedback, or talents as a leader were valued.

It didn’t happen to me but once or twice. Yet when it did – it hit hard & was glaringly obvious.  I keep the detail vague because only in those instances was it ever outwardly & clearly intentional.  I don’t want to acknowledge that unpleasantness further by giving it any credence other than to say it happened.

Those people who fostered these particular negative experiences are no longer part of my volunteer activities or my life. For that I’m grateful.  I don’t let that overshadow my accomplishments.  I merely point it out as a caveat if one chooses to take an active role in bettering their community because it can come with the territory.  Like much of life sometimes politics, drama, & ugliness is unavoidable.  If  we don’t guard against it or are surprised by it; negative energy like this can sour the experience & cloud our triumphs.

I have struggled at points personally & professionally to be seen for more than what ails me.  For the most part, I can say I have been seen for more.

But these hot buttons I mention above do exist.  Often, it’s something that is swept under the carpet when or after it happens; intentional or not.   That causes not only hurt feelings but also drives people away. It cuts just as deep as any overtly false praise or accomplishment over doing everyday things.

I don’t regret these painful experiences though because it led me to understand why people cringe at hearing they are inspirational or a hero.   It can be a weight to carry to be seen as an ideal of something & not a person.

Just some food for thought – from a human being…

I think this blog post sums up many of those feelings & is worth a read. David Perry also points out some stark consequences of certain inspirational stories going viral & being twisted & morphed into a different point that does devalue these people’s experiences & thoughts.

Obviously subjects like these are uncomfortable but necessary to put out there from time-to-time.  In leiu of an appropriate or thought-provoking quote or image, I post a recent picture of myself instead.

Strong & unashamed of my own journey, appearance, & truth.