How many races are you gonna do?

   When I first wrote this introduction 6 years ago, I was 3 years into the diagnosis of hypophosphatasia and life had only just begun to change.If you sat next to me, there are a few things you might notice right away. I talk a lot, and sometimes way too much. I love learning, asking questions, asking more questions, and getting problems wrong and then right. Most people call me a know it all but I really hate that about myself that I sometimes come off as if I think I know everything when the reality it is just the opposite. I am an outgoing college female and I am very active. I used to do a whole list of things: tennis, swim, volunteer for various organizations, coach, nanny the occasional ankle biters, cook amazingly delicious meals, have random nights at Walmart with friends, play president of a club, worked as an EMT, work as a caregiver, was a full time student.

That all looks different now.

My name is Julia, and I am 25 ¾ years old. The ¾ matters because that’s another 9 months that I have lived and I feel like that those months matter a whole heck of a lot. If we just stopped at the 25 mark we would be ignoring some of the biggest ups and downs that life has thrown my way in the past, well nine months.
In 2011 I had stress fractures that didn’t look great on MRIs and certainly were not healing. A few gut instincts of amazing physicians lead to going down a rabbit hole of bloodwork and then genetic testing. That’s where I got my diagnosis of hypophosphatasia at age 17. At the time I was still playing competitive tennis and would get to even play my freshman year of college with some minor adaptations. My life looks completely different than it did when I was first diagnosed, because hypophosphatasia is a progressive disorder.

I stopped counting after 38 fractures but in the past year I have lucked out. Really only 3 “ish” stress fractures and one traumatic fracture (not caused by overuse). This all comes down to  that life has changed. I physically can no longer run without fracture. Even the modest mile could lead to a stress fracture let alone walking could do similar damage. I don’t do any contact sports, at all. No rec basketball, soccer and no more skiing for now. I could go on the list of the crappy things but I think the real reason you want to read my story is because I took what my best friend told me and ran with it (well rolled with it). “You are competent and capable, you will be wildly successful and it just might look different.” -Katie Eckert

She was right. I was going to be WILDLY successful. Like do a marathon in under 5 hours wildly successful. She was also right it would look very different. 

In January of 2019 a friend encouraged me to pursue what is called pushrim, the wheelchair adaptive equivilant to running. Special gloves are used to punch or push-rims to move the chair forward. Keep a look out for the sport at the beginning of all the major marathons and the Olympics too! Tatyana McFarden is one of the most famous push-rim athletes for many great reasons!

A few calls, way more than a few actually, later I found myself setting up an appointment with a recreation therapist at Craig hospital. Craig is a world renown hospital for spinal cord injuries and traumatic brain injuries, but also really amazing in supporting the community. Chris, my now rec therapist, took me to the “toy room” at Craig which houses all of the athletic equipment. We briefly looked at handyclces (most people were encouraging me to do this at the time) before I spotted the pushrims and ignored everything else. I told Chris, I want to do push-rim. 

The first day I just got to sit in the two chairs at Craig and see what it was like. I remember the joy and the butterflies in my stomach. I get that same feeling at every start line I touch with wheels now.
A few months went by and Chris and I were able to do some fitting as best as possible in a chair and take it around outside the hospital briefly. April rolled around and weather allowed us to take the chair, the one that kind of fit but not really, to the track. I will never forget how ridiculously hard it was to push the chair around 3 laps over close to an hour of time. Literally less than a mile took forever. It was hard it sucked and I absolutely wanted more of it.

The following months were not without challenge of their own. I spent a total of 65 days in the hospital from January through July. I battled sepsis from my port after being on multiple rounds of antibiotics in attempt to prevent the sepsis. The worst of flairs from my other disease, mast cell activation disorder, consumed my life. My friends became pros at knowing where the closest hospitals were and what to do when I turned blue. They knew what to say to doctors who said “she’s doing this for attention,” and how to support me through it all in the best ways possible.

In July came a breaking point. I wasn’t making wise decisions and took a huge risk that had huge consequences. A trip camping out of state led to a two-week hospitalization for sepsis in a whole other state. Almost alone. Family friends that I had met only once visited every other day during those two weeks while all of my closest people were hundreds of miles away. I wasn’t a stranger to hospitalizations or being far from home home but I had always had friends nearby in my college days.I missed a lot of important things during those two weeks and came home very sick. With a boot on one foot, supposed to be on crutches, a central line in my chest hooked up to IV antibiotics 24/7. . .I began to truly change the direction I was headed. After years of barely managing my world and mainly putting bandaids over things that needed stitches and seriously healing; I started to truly take the time it requires to recover. A luck of the draw with circumstances led me to dive deeply into stand-up comedy as I took baby steps to recovering. 

Laughing over how crappy I looked with a hole in my neck (my permanent trach), my IV line, an broken foot, gave me traction to keep moving forward. The support I found in my community of comedy was just what I needed to find reason to make the wise choices that would lead to some pretty amazing opportunities.

With a central line in my chest still and on iv antibiotics, I reached out to Lisa the Green Events Race Director out of Fort Collins, CO. I simply asked if it would be possible for me to race in the human race 5k in a pushrim chair. With no experience with a pushrim, she did the research and made it all possible. I borrowed the chair 3 days before the race (remember with only ever having done ¾ of a mile around the track) and set my sights on my first 5k. I remember going over and over the course. It really wasn’t complex. A down and back with a slight uphill (which I quickly learned would feel like the biggest climb of my life) for the first mile and half than a slight downhill. By slight I mean any normal runner on two feet would think you’re crazy if you mentioned there was a hill. 50 feet of incline over a mile and half is nothing to fret. So in my head I decided I really was only doing a 1.5 miles. If I could do .75 I could double that. It might take forever but I could.

She believed she could so damn right she did. 

I did my first 5k in pushrim coming it at 37 minutes and guess what?! I won my division and was invited to do my next 5k. In October of 2019, the real blessing came when I found Achilles International, an origination dedicated to making accomplishment possible for athletes with disabilities using mainstream activity. I did my first 15k which quickly turned into doing a half marathon and then the craziest of things happened. I traveled out of state to do my second half marathon in Las Vegas and I didn’t end up in the hospital! I made wise choices, had the support and turned my can’ts into cans and dreams into plans! The next craziest thing happened I did another half marathon in another state! This time I traveled alone, but was never alone that weekend. I even got to perform stand-up comedy on a showcase in the same city I was running in!

Two weeks ago, to the day, I did what I thought was just a crazy idea. With lots of training, binge listening my favorite podcast (Ali on the Run), and a whole heck of a lot of support and sacrifice. . .I did 26.2 miles as a pushrim athlete in 4 hours 54 minutes. I was the first female physically challenged athlete to cross the finish line in Phoenix, Arizona!
So yup, I break easily. I struggle with the basics big time right now. My life is completely changing in how I do it. I am going from the girl who could play 6 hours of tennis competitively to the girl who uses a day chair to go to class and get around campuses. But the difference between shoes and wheels is the difference between walking the driveway and 26.2 miles.

Let me finish with this.

You are capable, you are competent. You will be wildly successful. It is beyond okay if it looks different than the person next to you or the plan you had yesterday. Celebrate what is possible.

“Start where you are, use what you have, do what you can.” -Arther Ashe.