I may never run for public office, though I am sorely tempted at times.

Recounting past experiences (prior to social media) is a lion’s share of the reason why, I think.

Ultimately, I am not sorry I served on a nonprofit board for a year, but I’m not sure I would be quick to serve again.

The year I did this was a year or so after my first brush with death.  I wasn’t ready to stop, although I was slowed.

It was then I knew my ability to advocate & serve others was limited.  I just wasn’t so sure how limited.  I would find out soon enough.  I knew this going in, but it was a challenge I wanted to take on.

I wasn’t a traditional board member when it came to the board at that time.  I was one of the younger age-wise, I was a child who grew up with awareness of my rare disease but not really realizing the full ramifications of its ugliness until I reached an adult age. I worked alongside many parents.  I raised a bit of money from time to time, but I couldn’t directly donate or contribute much myself.

When I was doing my “outreach thing”, like many of my predecessors & mentors, (& even some of my counterparts at the time), I did what I could to engage everyone.

This was whether they were taking an active visible role in the organization or not.

I would listen to dissenting voices, those who were constructive & critical. One of them was one of my best friends who eventually passed.   She would challenge my thinking but I felt this was good because it was perspective I valued.

I understood that some were vocal on certain sticking points for valid reasons, even if I may not have fully agreed or saw things differently.

I felt those voices were just as important to hear in the end run.

There were situations & perspectives that I couldn’t directly identify with but that didn’t stop from engaging & trying to learn about them.

I tried to give voice to the pain as much as I gave to the hope.

I sometimes failed just as much as I succeeded in these endeavors, but I learned from them equally.

I was in a lot of ways idealistic but not naive.

I knew early on if I ever took on a role like serving on the Board of Directors it would not be easy.   I was prepared & had good support & mentoring.  One of my mentors is also one of my friends & a strong supporter along this particular transplant journey as well.  To this day, I still learn from her both professionally & personally.

In the end, I ended up stepping away because of health reasons 1 year in to a 3 year term.  At that time, I was facing a situation that was the rarest of the rare in my circle.  It was only starting to be researched.

Even in medical literature when it occurred outside my rare genetic disease there were only 50 cases to draw from in medical literature as a whole.

It was uncovered purely by accident.

This tumor was not benign, but it was not malignant. It was “uncertain”.

To me, that felt almost worse because no one could predict what it would do.

In the end, thanks to medical & insurance bureaucracies it became a much more draining ordeal than it should have been & it nearly cost me my life.

There was a leadership struggle that was developing within the organization while I was dealing with this personal hardship. This was also emotionally taxing.

It’s a sticking point that many of us who were serving at the time don’t like to talk about or remember, but that ultimately sealed the deal on my choosing to step aside earlier.

The medical reason was at the lion’s share of my choice, but this was equally important even though I couldn’t verbalize it or voice it & still don’t like to remember it.

Suffice it to say, I intercepted (accidentally) information I wasn’t ever intended to.   I thought long & hard before I took a stand on it, though that stand had been in the making with recent events anyway.

In the end, I stood on own principle because I had already made my voice heard, but this tipped the bar to walk because it was a personal ethical dilemma for me.

I decided I was paying too high a personal cost for my service to others, so selfishly I stepped aside. But not before I explained what bothered me about what was going on to others, which I’m glad I did.

I wasn’t looking for recognition or support in any of these choices actually.

I was just doing as usual what I felt best for the organization first, but also for myself.

In the end too, I made this choice because I realized that I had given so much to others I had neglected myself for too long & this was just evidence I needed to step back & fight for myself.

It was not an easy crossroads to traverse either.

There were several nights I lay awake wondering why these seemingly clear choices to me were so difficult to make.

This is also why that when my treatment worked & gave me a reprieve in 2009, I kept my foot in the door with my volunteerism but didn’t jump back in to the degree I had before with my involvement & time.

I have continued that approach since & it works better with my time & energy.

I also take those lessons I learned & apply that to other pursuits because burning out on something you love in your free time is just as damaging or more than it happening with something professionally.

Though I learned that professional lesson through a high cost situation that also jeopardized my health & welfare.

I was told by friends often throughout my volunteer career that I needed a balance in life & this was no exception.

I now can enjoy what I do in the way of volunteering on my own schedule, & own time & I can still take care of myself.

Professionally,that was something I was slowly making inroads on, but taking disability has taught me valuable lessons there, too.

I stepped back from outreach & support oriented activities & dug more into furthering & championing research.

It was a fresh, new direction for me & something I enjoyed but also didn’t take as much out of me physically or mentally as other things.

In the end, I see it as just as valuable.

I may not earn awards, accolades, titles with any of my advocacy, although I can’t say I haven’t earned any over time. I appreciated them but it was never about that for me.

It will never be about that for me. I never set out to be a hero.  Just a real voice.

This blog is just as much for myself as it is to help others give a glimpse into what life is like when navigating that fine line sometimes between life & death & the lessons we learn.

It’s just my journey, it’s impossible for me to say or expect others to feel the same or echo it because they are an individual at their core, like I am.

Unique, that uniqueness is important to recognize.

But sometimes people do identify with certain experiences of mine & that’s ok too.

I’ve learned many lessons that I often wondered at the time if the personal cost to me was worth it in the end.

Now, I do believe the answer was yes.

Because I’ve learned equally from my successes & failures & I still am.