It’s a quiet Saturday morning in the City of Brotherly Love. During the past few weeks, I have traveled nearly 10,000 miles – from Oregon to Florida, back to Oregon, and now to Philly. We are here for the annual Desmoid Tumor Research Foundation patient symposium and 5K Running for Answers – essentially the mecca for my brother and sisters who share my cancer. We gather once a year from all over the globe to learn, love, support, and fundraise.
While the disease has challenged us with countless hurdles, we are still here and working together to find the cure for our cancer. DTRF has been instrumental in funding research, including the clinical trial that is saving my life. I guess you could say I owe my life to them. And to the National Cancer Institute and Pfizer and… and… and… The list goes on forever. The point is this: We are all in this together and the sense of support and compassion is tangible.
So, of course, the first question everyone here is asking me is: Did I find the magic jeans!? Am I walking with the comfort and gait that I have searching been for? The answer is, Well…sort of.
As we all know, you can’t just push a button and have the perfect leg appear – this is a marriage between my dynamic anatomy and a rigid, permanent device. We literally have to date one another for a while before we will know if this is meant to be forever. And let’s not forget the third wheel, cancer. Even once we go steady for a while, we still might break up, as only time will tell. So, even though my leg might not look tremendously different, it feels tremendously different, and IT IS VERY DIFFERENT.
Why? Because of the team that went into building it. Because of Dan. See, building a leg for someone isn’t just about providing a shoe like a shoemaker. These people are literally the GAIT keepers to your mobility. Now a clinic can be set up like a standard doctor’s office, sterile and cold, with very little personal interaction throughout the process. On the flip side, it can be set up like college dorm, where everyone has their private rooms, but there are common areas for bonding and camaraderie. The clinics that tend toward the latter not only treat the mobility issues, they treat the WHOLE patient.
The emotional journey one takes as an amputee is difficult to fully understand unless you literally walk in our shoe. It’s full of highs and lows, falls and victories. It is a process that can truly defeat you. And just when you think you have found stability, the rug gets ripped out from under you and you must climb the hill again. And find the right equipment to do so. Over time, the sense of despair can settle in and you may find yourself wanting to walk less. Sit more. You start to think about how much easier a wheelchair will be. You start to think about giving up.
Unless you have the right team to support you. Ironically, many prosthetists forget that they are not only building a device to support your mobility, they also must support you emotionally in the process of getting mobile. A true wizard prosthetist is one who sees the potential of the patient, listens to her goals, and will stop at nothing to help her achieve them. And this is exactly who Dan and the entire team at Hanger Clinic represents.
While in Florida, we finally discovered the problem at work (beyond my cancer!) with my gait and alignment. It’s similar to when your car has been out of alignment and the tires wear unevenly. Well, my leg has been out of alignment and my muscles and tendons have stretched and weakened in the wrong areas. But it’s not just my tires that have worn unevenly; my axel (my skeletal frame) has also bowed along my lower back to adjust for the misalignment.
So not only did I need some new tires, I am going to need to do some serious body work to bring this vehicle back to racing shape. Like six to nine months worth of body work. Oh, and it will be very, very difficult work.
While this may sound discouraging to you, I could not be more excited. Why? Because we finally found out what was wrong! And how to fix it! And more importantly, Dan and the entire team at Hanger literally rescued me. I was dangerously close to the precipice – and getting ready to give up on my mobility and succumb to the sense of despair. And then, like a lighthouse beaming brightly in the night beckoning me to safety, Dan and the Hanger team guided me safely into port so we could reassemble the vessel. And before they cast me free for the next leg of my journey, the most important piece of the entire process manifested. HOPE.
After years of discomfort and seemingly backward progress, I had finally found the reason behind my latest mobility challenges. Not only did we find the problem, but we developed the solution and a clear roadmap to get there. My team and coach lifted me up with their words of encouragement, their hugs, their smiles, and their HOPE. I can literally feel their support with every step that I take and I know that I am not on this journey alone.
Never doubt the power of hope and positive thinking. Give it a try. Try being part of something larger than yourself. Perform a random act of kindness. Think a positive thought. You will be surprised to find that if you string enough of these events together, you, too, will catch the magical feeling of hope. Hope that no matter what, we are not alone. Hope that there is a purpose to all of our struggles. Hope that tomorrow will come and it will be just as magnificent as today. And maybe even a little bit more so.
Now, I rarely ask for help and really try not to tell people what to do. (Really!) But my tomorrow is REALLY going to be more magnificent than today. Tomorrow, I attempt to walk my first 5K in my new leg, alongside my husband, brother, sister-in-law, nieces, cousins, aunt, high school bestie and hundreds of my cancer brothers and sisters and their caregiver teams. We are all here to support The Desmoid Tumor Research Foundation. I have set a goal of raising $1,500 for the race tomorrow. I hope I can walk the whole race. I am not sure if I will finish but I will certainly give it all that I’ve got.
If you’re looking for a random act of kindness to spark your hope train, then please consider donating to my fundraising page. The only reason I am still here is because of the research that is funded through donations like yours. So give it a go – try giving and you will be amazed at how much you receive!