I’ve always been told that I’m a brave person, though I’ve never been able to understand why. The best answer I can come up with is that I do my best to live a ‘’normal” life, whatever that means. You show me a normal person, and I’ll tell you you’re stupid because there is no such thing #RealTalk.
Constantly being commended for being brave can be exhausting and sometimes detrimental. For me, I grew up knowing I was brave, because that’s what I was told. Being scared, however, isn’t an option for someone who is told from an early age that they are innately brave.
At times I think we are all brave, but, in general, I’m not a fan of this label. Until now, I haven’t earned the right to be called brave. When people tell me I’m brave, I know they’re genuinely trying to pay me a compliment. I get that. However, this is usually one of the first things people I meet tell me. How is it possible to comprehend a person’s personality well enough to know they’re brave without engaging in a significant interaction with them? Also, what they fail to consider is that to be brave you must first be scared. Scary feelings are the foundation of brave attitudes and actions. Constantly being told how brave you are makes it incredibly difficult to admit to people that you’re actually very scared because you develop this false sense of obligation to protect THEIR perception of you and others who are disabled.
After 24 years of living with a terminal muscle disease and being told how strong and brave I am, I can finally admit that I am scared. I’m scared of dying and it’s something I struggle with everyday. In fact, the fear of death is debilitating at times.
Admitting that my disability is scary is what will finally help me to be brave.
When I was born, the doctors gave me a life expectancy of 12. Haha! Idiots. (Sorry, Dad.) As you can imagine, coming from a loud, bold Mexican and Armenian family, the reality of my disease was always spoken about openly. My parents never sugarcoated the fact that SMA will likely kill me before any of us, myself included, are ready for me to go. I think that being able to recognize this shitty aspect of my life for being just that, shitty, has really led me to fall in love with my life.
I don’t believe people when they say they aren’t afraid to die, especially when they also say they love life. For me, because I’m terrified of death and all of the unknowns surrounding it, I am able to truly value life. It’s because of this fear that I feel I have begun to master the art of “YOLOing.”
For those of you who have never YOLOed, it’s quite easy. Here are some simple steps you can take to YOLO like the pros.
1. Admit you’re going to die and that it’s scary because you’re human and hopefully not stupid.
2. Stop keeping track of how many fucks you give. You should give no fucks.
3. Do what you want and what makes you feel good.
4. Never regret anything. You can’t fix the past or the hand you’ve been dealt, so stop trying to damn it!
5. Take a shot of Fireball. This is a crucial step for a successful YOLO.
6. Repeat steps 1-5 (especially step 5)
Knowing that there’s a good chance you’ll die sooner rather than later is the best kick in the ass you can get to help you live your life to the fullest.
Earlier this year, I realized I was approaching a significant birthday. I was reminded that, not only have I already surpassed my original life expectancy, but this year I would also be doubling it. This realization, combined with the understanding that my life might still be cut short by my neuromuscular disorder (I say “might” because, you know, there’s still a chance I could choke on a corndog and die that way instead), lead me to want to celebrate my 24th birthday epically.
That’s when I decided to YOLO so hard and JUMP OUT OF A PLANE… So I did.
I knew two things going into this; first, that it would take a lot of planning to accomplish and, second, I couldn’t do it without my friends joining me. My initial Google search lead me to three different skydiving companies in Colorado. I called each place, interviewing several tandem instructors who had experience jumping with someone in a wheelchair.
I scheduled preliminary visits to two of the three facilities. My first visit was with John Mahan, owner of Out Of The Blue Skydiving (OOTBS) in Calhan, Co., about three hours away from where I live. John, a firefighter in Thornton, offered to meet me at his fire station with a tandem harness that I could try on to see if I was comfortable wearing it. He helped me get suited up and spoke with me in detail about what jumping with special needs is like.
John was very patient and took extra time to answer all of my questions, making sure I felt safe. Meeting him helped to ease a lot of my fears and I became even more excited to go for it!
After doing some more research, I ultimately chose to fly with John and OOTBS. I appreciated that they went out of their way to work with me. I also liked that their location seemed to be more mellow and relaxed, compared to the others I looked into. It was important to me that I didn’t feel rushed or pressured into doing anything. The fact that John is a firefighter also made me feel like he had a better understanding of my limitations since he works with people of all types on a regular basis.
Once I had the date and location picked out, I decided that I wanted to use this celebration as a way to bring awareness to the community of adults living with muscle disease. I successfully put my degree to use and released a press release notifying news outlets of my plans to “YOLO from the skies” and the response was unbelievable. All together, five news outlets in Colorado picked up my story. It was a thrilled to see the support for muscle disease across so many communities and media channels. The nice thing about all of the media coverage was that it meant I had to go through with my jump. Chickening out was no longer an option!
The days leading up to my jump were full of mixed emotions. I went from being extremely excited, to extremely scared about every 20 minutes. When the day finally came, I couldn’t believe I was actually going through with it. The whole ride down to the drop zone I tried not to focus on the fact that I was making a conscious decision to exit a perfectly good, functioning plane midflight. Instead I focused on a more pressing matter, having a Kesha dance party in my handicap van.
Once we arrived at the drop zone, it wasn’t long before everyone was checked in and assigned to their tandem instructor. I was thrilled to be jumping with John. There was so much excitement buzzing around the group as we waited for the first team to board the plane.
Shortly after they did, I heard John call me over to him and he asked me if I was ready. I said yes and so began the process of getting me into the harness.
I’m glad I checked out the equipment beforehand because I knew what to expect as I got dressed. I made sure to bring my leg braces with me to prevent my ankles and feet from twisting or getting crushed as I entered/exited the plane and landed. We also strapped my arms together on my chest so that the force of the air during free fall didn’t hyperextend my elbows or dislocate my shoulders. Finally, I brought a neck brace to prevent any whiplash that may have happened once John released the parachute, abruptly halting our rapid descent.
After being tied up, looking like I was auditioning to play the role of Anastasia Steele in Fifty Shades of Grey, it was time to make my way to the plane.
Getting into the plane was simple. I sat right next to the door with John straddling the seat right behind me, holding me so I didn’t bounce out of the plane prematurely. I think it’s fair to say that might have been a bit awkward for everyone.
Initially, the crew told me that I didn’t have to jump first. Yeah, right! Unbeknownst to me, they had a different plan. Haha! Approximately 10 to 15 minutes into the flight, as we hovered at about 12,000 feet, John told me it was go-time. Before I could process that I was about to go first, I found myself at the edge of the door seriously questioning my sanity.
The next second, we were airborne and my fears began to disappear quickly. I’ve never felt such an exhilarating combination of relaxation and adrenaline consuming my body at one time.
Free fall, in my opinion, was hands down the most fun part of the jump. I’m told it lasted about 45 seconds, but it felt more like 10.
The hardest part of the dive was when the chute deployed. It was rough, but thanks to my neck brace and John stablizing my head; my spine and neck didn't absorb any of the impact. My legs took most of the force. I hyperextended my left hamstring slightly, but the discomfort was so minimal it’s practically not worth mentioning. Within a day it was almost back to normal.
It was a beautiful day and the mountains were in full view as we soared through the air with our canopy. John and I had fun spinning and twirling around several times before preparing for our landing. The landing itself was the easiest part of the whole experience. John positioned my legs to be out of his way after free fall so they didn’t drag or get hurt when we touched down. He landed standing up and then we gently sat backward on the ground.
The moment we landed was surreal. I couldn’t believe I had just gone skydiving and survived! It’s hard to put into words how I felt lying there as I waited to be put back into my chair. Realizing I had just YOLOed harder than I ever had before, the only thing I managed to say was “Fuck yes!” as people cheered and my friends ran over to greet me. It was the greatest feeling I have ever experienced.
It’s impossible to express the gratitude I feel toward John and the OOTBS team for helping me celebrate my birthday. I highly recommend them to anyone wanting to go skydiving. This experience is one I will never forget and I’m overwhelmed with emotion when I think about what a great day it was.
I love living. I have always loved living. I am truly one of the luckiest people in the world to have been able to connect with so many fantastic people over the last 24 years. My adventure last weekend is proof that anything is possible with your friends by your side.
The entire day I was reminded that SMA is just a disease, nothing more. Even though the phrase “life expectancy” can feel like a death sentence, it’s not. The mystery of death is something I believe we will never understand, and that’s okay. If my skydiving adventure taught me one thing, it’s that life’s too short to worry so much about dying. Instead, I believe the best way to live is by learning how to YOLO.
YOLOing is what makes you brave.
Somebody pass the Fireball!