Why is it so hard?

Why is it so easy for me to make the decision to jump out of a moving airplane at 9000 feet or share the darkest parts of my life in front of a thousand people than it is to talk to one person about God! Isn't that crazy? I have a bucket list the size of Sandra's nice list. Yet never in the top ten or even on the bucket-list period has there ever been a goal called "getting closer to God". For me that is always on the to do list not the bucket list. One of those things you get back to eventually, not knowing if or when eventually will ever come. 

I made a decision a few weeks ago that I wanted to get more involved with students my age in the church somehow. These past six months, and more so in the last three months, I have been practically sprinting in the opposite direction of God. I have been pushing away from the church and second guessing whether God is really in my life or exists period. 

I got into a good conversation with a close friend of mine the other day about God, knowing he would be able to answer some of the questions I had about God, The same questions I was asked by an atheist but I didn't know the answer to. For me, Proclaiming that I am a Christian yet not knowing the Answers to basic questions about my faith makes me really wonder whether I am a Christian or not. It makes me wonder am I qualified to have that title. 

Knowing i needed answers, I started investigating what groups were available on campus at OSU. I remember my sister telling me a few years ago that Ohio State had a huge campus Crusade program so I decided to look into it. During summer I kept coming up with excuses for reason why I couldn't make it. The Grinch says it perfectly "Even if I wanted to go, my schedule wouldn't allow it! (flips his datebook open) 4:00: Wallow in self-pity. 4:30: Stare into the abyss. 5:00: Solve world hunger; tell no one! 5:30: Jazzercise. 6:30: Dinner with me; I can't cancel that again! 7:00: wrestle with my self-loathing... I'm booked! Of course, if I bump the loathing to 9:00, I'll probably still have time to lie in my bed, stare at the ceiling and slip slowly into madness. But what would I wear?!" I was always able to come up with that one excuse that prevented me from going. Normally when I do things it's nice to have a wing man so I'm not going in alone. That's another one of the excuses I use. Since no one else wants to go I guess it's not that important.

Buuuuuuuuut I took a big leap of faith tonight, I went to my first Campus Crusade meeting at Ohio State.... Aline. minus looking for a parking spot for 45 minutes It was so awesome. I wish I had taken pictures but I was to engulfed in The moment. 

I realized sitting amongst 700 fellow students that maybe we aren't meant to have all the answers. Even if God tried to explain it all to us it would be like trying to explaining advanced calculus to a snail. Ain't happenin. I came home from our meeting tonight and decided to make a few minor adjustments to that bucket list of mine. My bucket list now only reads:

1)    Pursue God 

because once i purse him, everything else (dreams included) will fall into place.

What a journey!

School started today and in class I couldn't really pay attention. For some reason my mind was in a far off place of what if's for the whole class period. Good thing we were only going over the syllabus, but it doesn't take away from the thoughts that kept swirling through my mind. For a little over two years now my life has been drastically different then the 19 years before them. In 2011 I was diagnosed with severe heart disease. The crazy part was that the only reason it was found was because my doctor wanted to see what this mysterious abnormality was on a stress test that was routine. After all this "thing" had been popping up on my stress tests for the 3 years prior to this one so why did he choose this time to finally investigate it further? It was questions like this I kept asking myself the whole day. Come to find out when he investigated it a little further he found out that I had four blockages in my heart, all over 75%.

I think back to that day more often then I probably should, not because it was like any other day, but because it should have never been found. You see after going to the NIH every year for 13 years the doctors started backing off on having me come up as often. That made since to me as nothing was ever different. In June of 2011 the doctor never called to arrange an appointment, so I just left it be. By mid July I kept telling myself I need to get in there, even if it is just for a day. So I called the doctor up and he asked if I could come the next week and sure enough I did. I told me when I got there that it wasn't his intentions for me to come in this year as he saw no need to do more tests. As we soon found out we were both glad I made the extra effort. It is all those little things that had to fall into place at the perfect time in order for me to be diagnosed anyway. Just mind blowing to me, then I step back and think of all the things that just have to go perfectly in order for them to have ever happened.

After being diagnosed I went on a crazy person spree. I kept telling myself I was going to find someone out there with this disease before I die, and at that point in time I felt like that time could be any minute. After many hours on the internet I finally gave up looking as there was no one to be found, I guess it was just to rare of a disease I kept telling myself. So what do I do? Get on Facebook. Thank God I did. As a last ditch fling I typed in familial hypercholesterolemia into the search bar of Facebook and voila! there was a group. Who knew something good could have come out of Facebook? Again it is one of those moments of where would I be now if I just decided to give up and just go to bed. In joining this group I got connected with now some of my best friends and who in turn connected me with two mega pharma companies. 

These two companies have opened the door to so many opportunities in my life. Never would I have had the chance to have my picture hang from the rafters of a multi-billion dollar companies headquarters...

Or be made into posters that were shipped all over the world for all to see...

Or be on the cover of Aegerion's 2012 financial report, speak at the capital for NORD, or be on a pamphlet about Juxtapid.

Believe it or not I still find it weird seeing my face on all this stuff. It is just....creepy to me. For the longest time I always kept this disease to myself and now all the sudden I cannot travel anywhere to speak about FH without there being a picture of me hanging somewhere. Though it can be a little weird sometimes I will have to say all the experiences I have had have been so amazing. I have had the awesome opportunity to speak in front of the FDA twice. I have been featured on a number of websites and news articles. For me it is all about getting the word about FH out there. It wouldn't matter if it was my name or any one of the other folks out there suffering from this disease, just to raise awareness and help save lives is why I have been doing what I have been doing. Believe me I hate public speaking and I wouldn't just do it for no reason. Part of the gig when traveling is me pretty much laying out my life on a silver platter for all to see and hear, The good and the bad, the ups and the downs, the happys and the sads. Below I have added a few URL's that I pulled off Google really quick. I am sure there are more floating out there somewhere but I just grabbed he first few. One is a YouTube video of my family and I talking about FH, others are about the Boston Marathon that was run on behalf of me and the disease, others are newspaper articles and magazine articles. 

Again the part that amazes me is how in the world I got from where I am today. We have all been to that point in our lives when we get bored and are just going through the motions. Well when God throws a wrench in your boring life, look at it as a sign to go do something awesome with your life. Don't just sit back and let the opportunity go by, make the most of it and make a difference in someone else life alone the way.

http://runningforrarediseases.org/2012/10/13/its-just-a-2/

http://runningforrarediseases.org/2012/04/02/running-for-fh/

http://goodmenproject.com/featured-content/the-healthy-mans-heart-disease/

http://www.businessweek.com/news/2012-10-08/toddlers-facing-heart-attacks-await-ruling-on-new-drugs

http://www.thefhfoundation.org/home/faces-of-fh/

http://online.wsj.com/article/SB10001424127887323926104578273900197322758.html

http://www.bloomberg.com/news/2012-10-08/toddlers-facing-heart-attacks-await-ruling-on-new-drugs.html

http://www.forbes.com/sites/matthewherper/2013/04/17/how-a-mourning-entrepreneur-and-a-dogged-doctor-saved-a-drug-for-a-rare-disease/

http://arlington.patch.com/groups/sports/p/arlington-s-daniel-leonard-running-for-rare-diseases

http://www.bizjournals.com/boston/print-edition/2012/10/26/two-local-firms-drugs-boost-hopes.html?page=all

http://www.youtube.com/watch?v=BNZpaBpfhLc&list=PL22622C62D43649DE

Skydiving

I want to apologize that I have taken a long break from posting. I find it easier to experience things rather then writing about them. This being said I am going to start trying to post on a more regular basis. 

In mid June I had the awesome opportunity to scratch another thing off my bucket list. I have made it a point to my mom and quiet a few doctors that I really wanted to go skydiving sometime. Everyone was totally against it, but I knew someday it was going to happen. It just made since to me. I love flying, actually I would do it as a career if I had the ability to. Ever since I was young flying to the NIH was like the best vacation trip ever. Going to the hospital was no fun but knowing that in order to get there I had to fly on a plane made the trip amazing. I didn't get to just fly in one plane, I got to return in another one as well. I would always count down the days and then not sleep the night before. Some people read this and think im crazy because more often then not people dread flying. The day finally came and I always made my mom get to the airport a few hours early because I was fascinated by watching planes taking off and land. There are times where I still pay the $2 fee to sit on the top parking garage of Port Columbus and just watch them take off and land, it is just so calming to me.

Once getting on the plane it was never a question that I would get the window seat. Again still to this day whenever I am booking a flight i ask if I can get the window seat. Something about watching the clouds and seeing the cities all lit up at night just amazes me still today. As a kid my face would be glued to the window and I would always wonder what it would be like to fall through a cloud. What a cloud feels like? The odds of me ever feeling a cloud were slim to none unless our plane was hurdling towards the ground and I was jumping out. Well lucky me I did jump out of a plane but it was voluntary and the plane was not hurdling towards the ground.

Let me paint the picture for ya. My cousins Josh and Courtney decided to tag alone and witness this jump I was about to take. As we are driving we realize the address we were given was the incorrect one as the one we were given has us turning into a guard rail. By popular vote we unanimously decided this was not the right place to turn so we kept driving. Once we went a few miles we figured we went to far so we pulled a U'y then figured we went to far the other way so we pulled another U'y. After Josh pulled up the correct address on our phone we finally made it. We pull up to this abandoned house that was filled with trash, at this point I was not longer as excited as I was while driving up. My jump time was at 1pm and the directions say arrive an hour early. Which we did. After taking a shuffle bus down a long gravel road that made me think this is where I was going to be a human sacrifice, we arrived to the jump site. I signed my life away multiple times and went through the brief jumping class. As one o'clock rolled around I was mentally prepared to jump. The 2 o'clock rolled around and I was still waiting to jump. Then 3pm, then 4 pm. I was at that point of debating whether to leave or not at this point. Finally after all the groupies had jumped and they refueled the plane with gas it was time. 

I got my jump suit on and said my goodbyes and boarded the plane. The instructor was a cool guy. He had jumped over 6000 times so I felt at ease letting him be my wing man. We start climbing and he asks if I want to pull the rip cord and im like YES, if we die i want it to be my fault not yours. 

We start clipping together at about 7000 feet and prepare to jump at 9000. It is FINALLY time to jump. We shuffle to the edge of the plane and pushes me out. I am dangling at this point. He counts to three and out we go.

It was cloudless all day so accomplishing my dream of always wanting to fall through a cloud seemed still non existent, but as we jump out, right below me was a cloud...A CLOUD!!!! 

Were falling and falling and at 5000 feet I pull the rip cord and ten minutes later we finally reach the ground. What a great experience it was. Falling through a cloud fees like falling through a mister, just in case anyone was curious. I asked the instructor on the ground why he had me dangling out of the plane before we jumped, and he said to make sure I was attached to him. Good thing I was I guess. 

There was a reason that I sat there for almost four hours waiting to jump. God was putting the cloud below me so I could feel it. You do not realize why things happen until you look back and sometimes you never know, but for me it all makes since. There is no doubt I will jump again, and there is no doubt that I will ever forget what it was like to finally fall through  cloud.