Monday, December 24, 2012

Embrace the Endeavor for Normalcy

There are often two very different opinions related to bleeding disorders and self-disclosure. I think it is one of the biggest line-in-the-sand, take-a-side-and-do-not-ever-change topics that I discuss with fellow bleeders, their parents, friends and relatives. On one hand you have the individuals who are open and honest with most everything related to their bleeding disorder including posts and pictures of their most recent mishap or “adventure” on Facebook.  On the other hand, you have the individuals whose immediate family and relatives know but haven’t told their best friends, let alone shared information on Facebook or social media. On which side of the sand do you stand?

I used to work in Higher Ed (Higher Education) and we always had these activities focused on self-awareness. We would have the group we were working with (usually a group of individuals we were trying to show new perspectives or experiences) stand in a line against the wall and face the instructor. The instructor would then make a statement or ask a question (i.e. have you been a victim of bullying, have you ever had thoughts about harming yourself… usually serious stuff, but luckily for me the question was never have you ever pooped your pants) and if you identified with that statement or answered yes you would take a step forward for that question and then retreat back and wait for the next question. The goal was for people to have an opportunity to show snippets of their life experiences if they chose to start a more serious and in depth conversation later (you didn't have to step forward if you didn't want to because some of the questions were very serious). There was also a focus on not judging individuals because, usually, you really don’t know an individual from a first impression. If it was done correctly it was a very powerful tool for team-building and creating a positive group dynamic that encouraged the desire for personal growth and improvement.

I feel bleeders go through a similar process when the dilemma comes up whether or not to tell people outside of the home that they are not “normal” or that they’re a bleeder. Albeit the process we go through can be more challenging than taking a step forward during a 15-minute team-building exercise. I also think we judge each other, too, just like people probably judge each other in that activity. I have participated and conducted that activity many times (trying to get my master’s degree they do a plethora of that stuff) and I judge the piss out of the people because it sparks your desire to rationalize why they stepped forward. I thought about people that should or shouldn't have stepped forward and I am confused or astonished watching those who did or didn't. The process of telling people today that I am a bleeder is so much more difficult than when I was growing up, because of the ways people connect and interact now. Word of mouth traveled faster than lightning when I was a young lad and now it only takes minutes, whereas before it was hours or days before everybody knew that Billy tried to kiss Bobbi but Bobbi didn't want him to, but Billy tried anyways and that is why Billy’s private parts hurt right now. To make it worse, electronic media make it so much easier for people to say whatever they want without the threat of getting punched, threatened or shoved into a toilet full of poo. So although I tell people that I am bleeder these days and I am pretty open about it, I don’t have school every day. I don’t have kids waiting to pick on me or make fun of me for being different.

There really isn't an opportunity anymore to share with a handful of close friends that you are different, that your life isn't the same and you can’t do things that other people can do because people talk too much. When I first started sharing is when I felt like an immediate outsider; someone looking into the group wishing they were a part of it and hoping it would change. It was hard because they couldn't understand at the ripe young age of ten. I didn't look different physically, although I remember some girl asking me if I had hemophilia because I was skinny. Sometimes it was hard and I can understand people who don’t tell anybody that they have hemophilia. My best bleeder friend didn't tell anyone he had hemophilia. He would go an entire day with a bleed at school and infuse at home because he didn't want people to know and deal with drama. My experience sure does conclude that I could have saved myself some trouble by not telling anyone, but I don’t know if I would change anything if I had the chance to go back.

After awhile I started to embrace the fact I was different and used it to my advantage, but not to get out of school work or tests. Although, when I was a kid my mom was called the principal’s office because some kid hit me at recess. The kid was suspended because they hit the “bleeder.” My mom though, being the ever conscious parent of an asshole, asked the principal why they didn't suspend me. The principal responded that I was the one that was punched and that since I was a bleeder they suspended the other kid. They made it seem like the circumstance of why didn't matter which was awesome. My mom replied, you obviously don’t know my son very well because he probably deserved to get punched (love you too?). The principal and my mother then found out that the kid and I were playing kick ball and I was the third baseman. The kid was on third base and was going to try and score on the next kicked ball. Well the kid’s teammate kicked the ball and I was (am still) super competitive so I grabbed a hold of the kid to prevent him from scoring so we could get the third out. The kid punched me to let go of him, hence my mom was very right. The recess teacher watched all of this and for some reason had the rationale that even though I bear hugged the crap out of this guy and tried to tackle him that since I was a bleeder and got punched that the other kid was 100% responsible and I was 0% responsible. My mom needless to say got me suspended as well.

Although some times were tough, I felt special (in a good way) because I had this disorder and I got positive attention and I was able to sound really smart explaining it to my peers. They would often ask me questions and sometimes spend hours going over different scenarios about what they should do for me in certain situations. It was these interactions that lead me to give a grade-wide presentation about my bleeding disorder. It started out as a small presentation and turned into all 150 kids filing into the cafeteria for me to give a presentation about hemophilia, including the genetics of how one gets it and passes it on or is a mutation. I also did an infusion which was really cool because all of the girls leaned back and all of the boys leaned forward as I pulled out the needles to mix the factor and eventually infuse. It was from this presentation that I really started to embrace the fact that I didn't have something that made me different or weird or that I wasn't normal, but I was better than the other kids (can you tell I am competitive?). I had something other kids didn't have and couldn't have. I had something that required me to do things that would make most kids freak out and punch a baby. I really was better than other kids in a sense because I had to do this to survive; it wasn't something that I could do if I wanted to. It’s not like a headache where I can suffer through it or be a puss and take a Tylenol if it got too painful. It felt like it clicked for me when I came to the realization that there are things that really suck about having a bleeding disorder… I mean really suck, things that I wanted to do so badly I would punch the first thing that I saw which, unfortunately for my sister, seemed to be her a lot (don’t tell her that I would purposely seek her out) but I couldn't because I was a bleeder. However, this part of having a bleeding disorder really made me embrace the fact that I wasn't normal and started to kind of like it.

I continued to do those talks each year and still do them today. I actually gave a talk right before Thanksgiving break to my old middle/high school. It was a class of seventh graders who were talking about genetic mutations and, although I couldn't clench my fists and have adamantium bonded claws extract to defend myself, I had something rare. I spoke about what hemophilia is and spent time on how you get it and pass it on or is a mutation (sound familiar? Love CTRL-C and CTRL-V). I also demonstrated how I currently do an infusion and the different ways that I tried to treat the disease when I was younger using plasma, cryoprecipitate and so on. Although it sounds strange, giving these presentations brings me back to the old days of when I first discovered how I can use being a bleeder for good and not evil, even though I tried. It was then that I started to feel like I was normal. Maybe because I had done it so many times that it would have been weird not to do it. It might have been because after a while, that is how people started to see me. They saw just another kid that sometimes had to do some stuff that other didn't to stay healthy. My mom presented with me this past year because she usually will do the presentation if I am not able to. So she was talking about how a normal person’s blood clots and this girl passed out, straight up fainted and destroyed her face on the tile floor. It sounded like a car door shut when she hit. I then had a kid go down when they saw blood return in the butterfly needle, but luckily the teacher saw him turn white and caught him as he was falling to the ground. Stuff like that just makes me think of what I go through and what other bleeders go through everyday just to stay healthy. It just amazes me (obviously because I have a different life experience) that some people are afraid or don’t like hospitals, doctors, nurses or needles. So for me it was very normal but for others, who have never stayed the night in hospital, it could be weird, different, scary, uncomfortable or torture.

My progression trying to be normal took awhile and it was bumpy. I got teased and made fun of and my answer was obviously anger and violence, but I learned that on my own and not from stupid video games like kids these days. I remember getting into a tussle with a kid in gym class for making comments as we were running laps to start the class. I don’t know how he tripped or how he got kicked while he was on the ground but it looked like it hurt. Obviously, I didn't handle it the best way and there were multiple things I should have done instead. At times I questioned why I chose to be so honest and open about being a bleeder because I saw friends not telling anyone and living what seemed to be a much normal life. I most often would make fun of myself and crack jokes about being a bleeder as a way to make it more comfortable for other people and sometimes they would purposely try to hurt my feelings by making fun of me. Eventually though, people learned that I could joke just as good as they could and it didn't work to try and make fun of me because I was already making fun of myself. My friends started sticking up for me, as well, and started using some of the same jokes I used that were innocent and entertaining when people tried to make fun of me when I wasn't around.

After I was comfortable with who I was and had finally found a way to be as normal as I could within my peer group I started to see what other bleeders went through trying to be normal. Most of them would be in extreme physical pain since they didn't want to infuse at school and have people find out. I could tell it was very hard and I would be like, "Dude, just tell people and get it off your chest." However, they didn't and I am glad, because my endeavor to become normal was different than my friends'. I don’t know the right answer and I don’t think there is a right answer. I think you do what you are comfortable with because, unfortunately, there will probably be pain no matter what you choose to do. For me it was easier to share and to start giving presentations to my entire grade, but that may not be what you should do. Share or don’t share, embrace or fight it, educate or let them wonder, but definitely buckle up because trying to be normal isn't going to be easy, especially once you realize that you aren't ever going to be normal having a bleeding disorder. You are going to be better because you have a bleeding disorder.

Tuesday, December 18, 2012

ShootUp at #NHF2012

As another annual meeting for the hemophilia community approached, I was encouraged to put together a pickup basketball game. This would be the 2nd official pickup game I would hold at an annual meeting. The first ShootUp basketball event took place in Santa Clara, California, on the final day of the HFA Symposium in March, earlier this year.

Please read my previous post Ball So Hard(ly) to see how that went down.

The response to the get together was undoubtedly a positive one. Guys that attended wanted to make this an ongoing tradition. Most of those that attended the outing are guys that tend to travel to the annual meetings every year. So the planning for the NHF Annual Meeting in Orlando in November 2012 started almost immediately as I got home from California in March. Eight months was our deadline.

I was lucky enough to have some support in planning the second event. We wanted to grow the event, encouraging more guys to attend, but also to get the word out that this event (that started with the idea of a pickup b-ball game) was going to happen at every national meeting from here on out. The road to tradition was in the making. We really wanted to establish the brand of the event. I really wanted to get jerseys ordered for the guys that were definitely going to be attending the second annual game. I also knew that with the annual conference being in Orlando, there were several other events happening at some pretty amazing locations, so I needed to find a venue that would have enough draw to encourage guys to come out to the event.

The NHF Annual Meeting kicked off in Orlando with much anticipation. The largest gathering of hemophiliacs every year, this year was no exception. Over 3,000 attendees from all over the world descended upon Orlando and a melee of social networking, reuniting with lifelong friends, and informative educational workshops and breakout sessions followed - nothing short of spectacular, in my humble opinion. I chose the final day of the conference to be our game day. I felt obligated to let all the guys be able-bodied and uninjured for the meeting, because nothing slows you down more at an annual meeting than a hemophiliac swagger limp. For that reason, I encouraged everyone that I knew was going to attend ShootUp to do their prophylactic treatments before we played. The event was just for fun, but some guys consider competitive sports as their fun, and I wanted to ensure that everyone enjoyed themselves and we prevent any serious injuries.

Saturday morning arrived with sun in the sky and a cool breeze. As we gathered in the hotel lobby, I was happy to see a group of guys gathering looking like they were ready to go hard... well, as hard as one can expect at 8:30AM on a Saturday morning after two days of constant walking and NHF-ing (as I call it). The players that gathered consisted of some returning faces from the 1st pickup game in March. Others had heard about the talk of a game being put together and showed up that morning. Others were there simply to show support and come along for the ride. We traveled about 25 minutes to the courts we had reserved for the event. As we pulled up, we discovered that the recreational center that we were using was also a sponsored Orlando Magic practice facility. We broke up into teams, handed out our event jerseys and hit the courts. I had hoped that the guys that attended the event would have fun, but I had not anticipated the connections that these guys were going to make with each other. We were all from different parts of the country: the states of Illinois, New York, Pennsylvania, Tennessee, New Mexico, and Wisconsin were among those represented in the group. The guys bonded with each other on and off the court that day. They showed great sportsmanship and camaraderie amongst the group. Some guys were nice enough to take video and photos of the day's event. Before we headed back to the hotel, the group all signed the “game ball” for the 2012 ShootUp event as a memento for use at future ShootUp events.

Looking back, I can honestly say that it took a group of people that were really committed to this event for it to have the success that it did. New ties were formed and old ties were reinforced. And my whole mission – to encourage physical activity amongst our community – was established. My sincere thanks goes to all of those who helped organize this event and to all those who came out and supported our little dream.

Wednesday, December 12, 2012

Social Infusion at #NHF2012

Social Infusion is "where online friends become offline friends." Hundreds of people in the bleeding disorders community interact with one another online through Twitter, Facebook, Instagram, Google+ and more, but many have never met face-to-face. With the National Hemophilia Foundation's 2012 Annual Meeting (aka #NHF2012) drawing thousands of community members to Orlando, this was a great opportunity for those "online friends" to get together and take those online friendships offline.

The Irish are renowned for knowing how to throw a party, so this year's venue was Raglan Road Irish Pub, located in the Pleasure Island section of Downtown Disney at the Walt Disney World® resort, just 4 miles from the Orlando World Center Marriott (where the conference was held). The pub, owned and operated by an Irish company, was built entirely in Ireland, then shipped to Orlando. They provided great food, beers and spirits, plus live entertainment featuring Irish-born musicians and dancers. We provided some of the hemophilia community’s most influential social media users and (thanks to our generous sponsors) free drinks, and swag bags that included a shot glass, sunglasses, a clip-on cell phone case, a stylus pen and more. We hosted approximately 100 people, including consumers, NHF staff, HFA board members, pharmacy owners, mobile health developers, pharma marketers and the producers of Stop the Bleeding! A comedic web series.

The event started out a bit crazy. We were supposed to get in the room at 8:30 pm to set up, but that didn't happen, so at 9 pm there was a rush to set up the registration table and distribute lanyards & swag bags to attendees who were waiting. Thankfully, several people offered to help and we got everyone settled in quickly. I was impressed to see many of the NHF staff/employees in the room. I know how busy they were and how hard they had been working to make #NHF2012 great. I appreciate their support when they could have been catching up on much-needed sleep.

Like any good party, it seemed to get more wild and fun as the night went on. Everyone transitioned from sitting and having friendly conversations to chasing down new friends to pose for photos modeling the fashionable eyewear provided by My Blood Brothers in the swag bags. Other items included: MicroHealth t-shirts, Social Infusion shot glasses, Accurate Rx stylus pens and Hemophilia Scholarships phone cases.

Overall, I think everyone had a great time. This event is not meant to educate or entertain people. It's simply an opportunity to come out to a social setting, meet and mingle with hemo friends from all over the U.S. and to leave with a deeper connection to the community and its members.

Please take a moment to thank our sponsors who generously support the online hemophilia community and made Social Infusion possible this year, by connecting with them online for more great content, including more photos from Social Infusion (hint: posting this week).

Thursday, December 6, 2012

Spark Showcases Passion in the Hemophilia Community

Contrary to most bleeding disorder community events, Spark engages the community in an exciting and entertaining display of passion and talent among 10 speakers. Spark Chicago (2011) wasn't a fluke. I, and many others, saw a need in our community: the need for a new event. Something that could reach the adult bleeders, grab them by the shoulders and shake the shit out of them. So with that in mind, who did we decide to host this thing? Hemophilia heartthrob and creator/star of Stop The Bleeding!, Patrick James Lynch, of course.

Similar to TED talks, Spark features a handful of speakers that give 5-minute talks on a subject of their choice (How to Start a Cult, Building Your First Website, The Importance of Fatherhood, History of Hip Hop, Dating Tips... to name a few). We encourage everyone to speak their mind and be themselves. This event IS NOT about us as hemophiliacs, it's about us as people... people that have a wide range of different skills, abilities and interests. Spark is built to showcase the features of an individual's life beyond hemophilia. So far, Spark has been embraced by both those who attend and those who participate. Community leaders Lee Hall and Aaron Craig have both given passionate talks about their involvement within the realm of hemophilia and this year was no different.

Other highlights from Spark Orlando:

Liam O'Neal gave us 10 quick "Snapple Facts" about his life. He talked about his time with the Navy, gave us a simple magic trick to try at the bar, and his thoughts on the song Call Me Maybe. Needless to say, we all learned a lot in five minutes.

Luke Saulsberry inspired us to do better by enlightening us with his "top achievements" thus far. Luke is a husband and new father. His achievements might be a little different than most of ours, but they are achievements nonetheless. For starters, his legs were immortalized in stone for an art project back in college, he hasn't bled to death yet, he graduated college, and he hasn't accidentally killed his child…yet... something he was way too proud to talk about.

Ryan Gielen is the producer of the upcoming comedic hemophilia web series Stop The Bleeding!. Ryan came all the way from L.A. to be with us at Spark and we were super stoked to have him. He told us about his life as a filmmaker and the success that he has had so far in his career. He teamed up with hemophilia heartthrob Patrick James Lynch a few years ago. Since then they have turned Stop The Bleeding! into a full-on web series they will be launching in January 2013.

Interested in speaking at our next Spark event? Contact me for more information and tips on how to give the best talk of your life! Seriously, Spark is super-laid-back and informal, but we plan quite a bit ahead of time to make it look easy. All speakers are given an easy-to-edit PowerPoint template and help on finding content or developing an idea to talk about. Join us at the next Spark event for more great talks, laughs, drinks, and fun.

For more information and awesome content, check out