Wednesday, September 13, 2017

One Wild & Precious Life

Statue near the municipal albergue
Astorga, Spain
At this time last year, I was hiking the Camino de Santiago across northern Spain. On this particular day, I walked 21.9 km (13.6 mi) from Villavante to Astorga. The day started off cool and overcast—perfect for the day's walk. But the skies were ominously dark, and the last 10–11 km were spent walking through pouring rain with no shelter in sight until I reached the albergue in town.

I have been reading through the journal that I kept along The Way, and I vividly remember writing today's entry after I had settled into the albergue (and dried off!). My thought at the time was that the Camino is, in some ways, a microcosm of human life. Here is an excerpt of this day's journal entry:

Everyone starts and ends their journey somewhere, but each person's is unique and varied—in distance, time, experience, and path. We all have daily and longer term goals—some which get achieved, others that don't. Situations and circumstances along the way allow goals to be met or surpassed, or others to be changed in the process.

Additionally, people regularly come into and leave our journeys. Some are with us from the beginning and stay until the very end. Some stick around for a while and then depart as their own journeys take them elsewhere. Some only appear for a moment or two but can have a lasting impact on us. We are sad to lose some connections and happy to separate from others. But whatever happens, we keep moving forward. On the Camino, that usually means to the next town. In life, that (hopefully) means moving in the same direction toward our own goals and dreams—and for our own happiness and enjoyment.

In this entry, I also wrote about a friend's recent Facebook post that I had seen (on the anniversary of 9/11): "Life is fleeting. It is so precious. Tell me, what is it you plan to do with your one wild and precious life?" When I saw this, I thought back to one of my primary reasons for doing the Camino—gratitude! Gratitude for the fact that I could do it, gratitude for the fact that my health had allowed me to experience this amazing journey, and gratitude for the fact that, just a couple years after having gone through a major surgery, I was fully cognizant of this gift I had been given to fully experience and to live this wild and precious life!

I concluded the day's journal entry by documenting the fact that I was approximately 2/3 of the way through the Camino ...

... and I still don't know what's next—and I feel okay with that. I have a couple ideas for options to pursue, and maybe that's all I really need for now. Maybe just some basic directions (yellow arrows) and the ability to trust the path, to believe in the journey. ... I so look forward to seeing what the rest of my journey holds—to Santiago and beyond!

One year later, I'm still not quite sure what's next for me personally or professionally. I have some ideas, and maybe that really is all I need. While I was on my Camino, I found it fairly easy to accept and embrace the uncertainty of the journey while continuing to move forward. But I find this approach harder to take in the "real world." When you're away from the Camino Frances, life doesn't provide a series of painted yellow arrows to show you where to go next. But I believe it can provide direction in other ways. The challenge for each of us is to find those directional guides, trust them, and continue moving forward on our own journeys.

* * * 
"Life is a journey. Be your own navigator."
–me

Friday, September 8, 2017

Scars of Strength & Pride

Earlier this year, I posted a tweet that seemed to resonate with some of my followers: As a child, I was very self-conscious about my scar. Today, it serves as a reminder of my inherent strength and resilience. #CHDlife 


Whether or not a person has a congenital heart defect and its related scars, I think that many of us struggle with body image issues.We’re too fat, too skinny, too tall, too short, too hairy, or too smooth; and we must fix these faults—at least that’s what popular culture wants us to believe. And there are countless businesses making ridiculous sums of money off us by offering just the right tools, tips, tricks, creams, ointments, pills, supplements, workout plans, self-improvement guides, and diet fads that promise to correct our flaws.

What I wrote in my tweet was absolutely true. When I was younger, I was extremely self-conscious about the scar down my chest, and I almost never wanted to take my shirt off at the pool or the beach. I was also a chubby kid, so a swim shirt was the appropriate cover for both of those flaws. Because somehow—even if just in my own mind—that piece of material covering my torso would hide those “flaws” and help me fit in (or, at the very least, not stand out in such an uncomfortable way) among my peers.


As a teenager, I had my adolescent growth spurt and lost over 40 pounds in the same year, forever putting behind me the “chubby kid” label. In college, I came out as gay. And even though I never fully saw myself in the stereotypical gay community (excessive partying and drinking; boas, parade floats, and pride flags; or washboard abs and random sex), I found myself facing a new challenge. While I was no longer overweight, I certainly did not have an Adonis body with six pack abs to show off in a Speedo. Oh yeah—and I still had this unsightly scar down the center of my chest. So if I didn’t look like other gay men (at least not like those often portrayed in the media), would I be able to fit in with “my” community?


As human beings, we are social creatures; and it’s natural for us to want to connect with others and have a sense of belonging. Yet I often find myself thinking about a powerful quote attributed to Ian Wallace: “Why are you trying so hard to fit in when you were born to stand out?” I recognize that there can be some comfort in conformity, and standing apart from the mainstream is not always desirable or even socially acceptable. But I firmly believe that going through life as a lemming is no way to live.


I also believe that those of us with a congenital heart defect naturally stand out, whether visibly or not. Life with CHD—or any chronic illness for that matter—comes with its own set of challenges. We CHDers sometimes have to plan and prepare for things a bit differently from others in the crowd. For many of us, a routine visit to the dentist requires getting a prescription filled in advance for prophylaxis. For those of us on blood thinners, a minor cut can quickly become quite problematic. And a simple trip to the airport may require a special security screening because of various metal objects in our bodies.


But even with these challenges and the visible scars that grace many of our bodies, I believe it is important for us to accept, to embrace, and to celebrate the attributes that make us unique. Now I would be lying if I said that I succeed at doing this all the time. In fact, far from it! There are the occasional times when I still feel self conscious about the scars from my sternotomy and chest tubes. And even though I have now been slim for more than half my life, there are times when I mentally think of myself as the fat kid that I knew during my formative years. Sure, I can look into a mirror and know that this is not true; but the mental image can sometimes overpower the visual reflection that I see.

ACHA National Conference, June 2017
Photo credit: DRO Photography

At the Adult Congenital Heart Association's 8th National Conference in June, a professional photographer was taking photos of adult CHD patients who wanted to show off their scars. I loved the idea but initially resisted participating. I found myself feeling overly self conscious, and the thought of unbuttoning my shirt for a photo shoot momentarily brought back the awkward and uncomfortable self image issues I had as a youth. But then I realized that I would be missing out, and I thought to myself: screw it, just do it! It’s not about vanity. It’s about proudly showing off a unique physical feature that many adults living and thriving with congenital heart disease possess.

In my hometown of Chicago, there is a wonderful and brilliantly simple campaign made up of stickers and public art installations throughout the city. As described on the project’s website, You Are Beautiful is “Three short words. One powerful message. … Grabbing strangers unexpectedly in the grind of their daily life, and unapologetically saying it's ok to be human.” I absolutely love this project and the message it sends out into the world. And I believe the scar photos taken at the conference perfectly illustrate this message: Life with CHD may not always be easy (and we've got the scars to prove it), but you (as a person, as an individual) are beautiful! So take pride in who you are—in the scars you bear—and proudly show the world your inherent strength and resilience!



* * *

"To be yourself in a world that is constantly trying to make
you something else is the greatest accomplishment."

–Ralph Waldo Emerson

Wednesday, July 12, 2017

An Open Letter to my CHD

Dear Topher,

I hate you! What have I ever done to you? I mean, seriously!? For seemingly no apparent reason, you have put me through some of the worst times in my life (both physically and mentally), and you caused my family and friends to worry about my very survival in the face of major surgery—not once, but twice. And knowing you, you may very well have plans to do so again in the future. But of course that’s just an unknown at this point, and naturally you won’t give me much of a head’s up if I do have to go through that experience again. I have done absolutely nothing to you; yet you’ve left scars on my body that remind me of those perilous moments virtually every time I see them. I really never wanted to be in the 1%. I’m already left-handed and gay. Why couldn’t I have been in the majority here—you know, part that wonderful group of people NOT born with a wonky heart and subjected to a lifetime of necessary specialized care? This sucks! Thanks for nothing!

But if I’m being honest with myself, I also love you and appreciate you more than I ever thought possible. You made me part of a community that is filled with some of the strongest, most dedicated, and most compassionate people I know. You introduced me to wonderful friends, peers, and allies across the country—people I never would have met if I was “normal.” You’ve given me the opportunity to share my story on Capitol Hill and in front of audiences across the country. You made it possible for me to no longer fear my own mortality, but rather to embrace the limited time I have on this planet to live the best and fullest life possible. You gave me the strength to quit a job that wasn’t right for me, to take a leap of faith in myself, and to walk 500 miles across northern Spain carrying nothing but a backpack and a quest for new adventures.

Twenty years ago, as an awkward teenager, I used you as an “out” of playing football, a sport I never really cared for and certainly had no interest in playing anyway. But kids can be cruel, and there are a whole host of adjectives that typically await a young boy who doesn’t want to play football. Yet no one ever questioned me when I said I couldn’t play because of a heart condition. (So thanks for that! CHD for the win!)

In different ways, maybe we just use each other in this relationship. You use me (and many of my friends) as a test case for new medical treatments and technologies. (Speaking of which, the next time I need a new pulmonary valve, maybe we can try that catheter thing instead of the open heart approach, eh?) And I suppose I use you too—occasionally as an excuse to get out of doing something I don’t want to do. But much more often as an excuse, a reason, or a kick-in-the-pants motivator to do what it is I really want to do and deserve to do.

So let’s make a deal, shall we? I’m certainly under no false illusions that our future together is going to be all flowers and trees. I suspect there will be some more IVs and Holter monitors in there. But, for better or worse, we’re stuck with each other. So how about we do what we can to focus on the better a bit more? How about we look out for each other so that we can each become the best versions of ourselves? If necessary, I’ll let you use me to advance the medical field’s knowledge of CHD. But you have to agree to let me use you to keep living the most amazing and adventure-filled life that I possibly can.

So do we have a deal?

Living and loving you with all my heart,

Ken of Hearts

Wednesday, March 8, 2017

An Opportunity Nearly Missed

I almost didn't attend this year. I almost decided to stay home and to not subject myself to the triggering environment that is Washington, DC. I almost chose to let the world of partisan politics, alternative facts, and fake news keep me from attending what has become a (nearly) annual event for me. But I ultimately decided that my health—and the health of so many fellow CHD warriors—was too important to voluntarily skip this year's Congenital Heart Legislative Conference.

Speaking during the
keynote presentation
2017 marked the fifth year that I attended this important event and the second time I had the honor of speaking as part of the keynote presentation. When I first walked into the conference room and saw more than 180 advocates from across the nation in attendance, all of the negative vibes that I felt about our nation's capital went away—at least temporarily. And I was grateful that I didn't pass on this year's event. As in years past, the energy, excitement, and commitment in that room were palpable. With an impressive mix of both seasoned and new advocates in attendance, it once again provided opportunities for connection, collaboration, compassion, and camaraderie that are often difficult to come by in today's world, let alone in the nation's capital.

During the time that I lived in Washington, DC, I sang in the Gay Men's Chorus of Washington. Dr. Thea Kano, our artistic director, had a saying that she would frequently share with us just before we were about to perform a concert: "Never miss the opportunity to make an impact because someone needs to hear you. They may not even realize it. And that person may be standing on the riser right next to you." It was always a powerful reminder for us to share our gift of music openly, confidently, and without fear. It was a reminder that we had something beautiful to give to those who came to hear us.

I found myself thinking about this quote frequently during this year's Legislative Conference and recognizing its applicability to what we were doing. Even though we were not sharing the gift of music, we were sharing something equally (if not even more) personal: our own health stories and journeys. And from what I saw and heard from those in attendance, whether newbies or veterans, it was intensely personal and profound.

CHD advocates from Illinois in
Senator Richard Durbin's office
 As I sit in my apartment writing this blog post one week after the event in DC, Republican "leaders" in Congress are currently working to "repeal and replace" the Affordable Care Act. While I don't want to go down that rabbit hole here, I openly admit that I am scared about the future of healthcare in the United States. I recently started a new job with a small organization. Upon submitting my application for health insurance, my boss and I learned that the monthly premium (for a fairly mediocre plan) would go up 40% thanks to my preexisting condition. After reviewing my options on the health plan marketplace, I discovered that I could actually get a better plan there for less money. So I opted for that route.

With the future of healthcare so uncertain at this point (and the fact that I don't have an employer-sponsored insurance plan), I am faced with the very real possibility that I may be screwed in the not-too-distance future. I sincerely hope that at this time next year I can still afford to get sick. I hope that, even if only in a small way, our voices were truly heard on Capitol Hill last week. And while I know that our opportunity to make an impact was not missed, I genuinely hope that it was not unheard by those who needed to hear us.