wheelchair cats

Healing from the Inside Out

By on July 18, 2017

At top: My current wheels – better suited for the cats.

It has been five weeks since I have officially stopped wearing my leg. Five weeks since I have returned from my last Florida trip which literally broke me. Mentally and Physically. So much so that I finally took a seat and entered an entirely new realm of my healing journey.

I am 44 years old and have spent the better part of my adult life managing my health. Being diagnosed with cancer at 26 was not my first foray into critical medical challenges. The real party got started when I was 17 and missed my entire senior spring semester of high school due to a volvulus – a.k.a. twisted intestines. This resulted in losing about 18 inches of my innards – so I guess my amputation history started early on in my life. It took me years to recover, but truly the experience was just a warm up for what was to come.

When I reflect upon the copious medical challenges I have navigated, it reminds me of how much my body has been through. How much I have been through, as well as my husband, my family, and my caregiving team. From an objective seat, it begs the question of that incessant dilemma: What lesson am I missing that I continue to face the same challenge over and over again? While my medical issues have varied, the theme remains the same; they are all rare, stubborn, tenacious, progressive, impactful, and life-altering. Hmm… Sounds like someone I know.

As I dissected my medical history in my mind, I began to see a pattern develop. My healing strategy to date has been to identify the problem, isolate the impact, and resolve the issue. Sounds logical right? Well, what if you can’t identify the problem? Or isolate the impact? Or – better yet – resolve the issue? I mean, this is the precise predicament I currently find myself in with my cancer. Eighteen years of trying and I am the least healed and mobile that I have ever been. Or am I?

dana with giant unicorn plushy

Channeling my inner Unicorn!

In 2008, I employed my healing strategy of identify, isolate, and resolve when I had my right leg amputated above the knee. I was told I had an 80 percent chance of success of being cancer-free for the remainder of my life and these were the best odds I had EVER been given. I distinctly remember meeting my surgical team, handpicked due to their sports orthopedic and soft-tissue tumor specialties. We all had only one thing in mind: to get rid of the diseased, dysfunctional part – MY leg – and then replace that with a working part – a prosthetic leg. The discussions all focused on the brevity of time it would take to get me “back on my feet” and how quickly I could “adapt to running” in a new prosthetic leg. The only thing I was concerned with was how to get my life back to the way it was before.

This has been my primary focus since November 8, 2008 when I LOST my leg. Yes, that is the proper phrasing. Rarely do people ask “How did you gain your prosthetic leg?” No, they ask, “How did you lose your leg?” The focus is always on what is missing, not what is gained.

Likewise, once I had my leg amputated, I just felt like I had to constantly replace what I lost, to fill the void. My entire recovery was focused on the goal of walking on two legs again. I didn’t really think about the fact that my leg is never growing back. LIKE NEVER. I was completely problem focused, not solution oriented. I was literally obsessed with replacing what was missing and then outdoing my former, able-bodied self by running a marathon.

Well, nine years into this life as an amputee have taught me a few things. Replacing a limb is never as easy as they promise it will be. Getting fit for a prosthesis and learning how to walk all over again is no small task. We are trying to fashion a rigid, hard device to a body part that is full of fluid, dynamic, and ever-changing. Some days, it just doesn’t fit right. Others, you may be injured, sick, or tired. Or maybe you just want to be comfortable for once.

What I have finally learned is that I don’t actually HAVE to wear a prosthesis if it hurts or isn’t working properly. This does not change who I am, what I can do or what makes me happy. It just changes how I get there – and, as I am discovering, in a breathtakingly beautiful fashion.

dana lying on mattress at store

Things are looking up with the proper support.

Finally listening to my body, I have begun to rest and incorporate self-care on an unprecedented level. While my external mobility seems to have crawled to a standstill while I patiently wait for my new wheelchair, my spiritual journey has climbed to new heights. I have realized that I have never truly accepted who I am as an amputee. My entire focus for nine years has been how to “fit into” an able-bodied lifestyle – to figure it out, adapt, and just keep moving forward. I have minimized my modifications and never established a permanent alternative means of mobility.

Talk about putting all of your chips in one basket. What happens if you are injured or sick and cannot wear your leg? To have no safety net or alternate means of transport than your prosthetic leg sets you up for failure. You feel like you lose your mobility if you don’t wear your leg because you don’t have much of a plan B. Insurance doesn’t assist you in this capacity; they will only pay for one mobility device – a leg or a wheelchair – you choose. Currently, my plan B is my crutches and a heavy, transport wheelchair from Goodwill. These are not adequate tools for me as an individual; the mobility, comfort and independence they provide pales in comparison to my prosthesis.

This was the impetus behind launching my current GoFundMe campaign to support the purchase of a real, custom, performance wheelchair and to modify our home to accommodate who I am today. Nearly a decade into amputee life, I realized that I have only solved half of my mobility problem. No wonder I have so much anxiety about the need to keep on keeping on all the time. I don’t have an adequate way to get around if I stop wearing my leg, and that’s terrifying once you have already lost your mobility.

I have been so focused on the problem of what I am missing, I have missed the solution of who I am – right now, in this moment. I am an amputee who is surviving cancer and my leg is never, ever going to grow back. I don’t need to fill the void. I didn’t lose anything. Actually, I have gained a WHOLE BUNCH. I live each moment to the fullest, grateful for the chance to witness the beauty and feel the power of the human spirit. You don’t need to be mobile to appreciate any of that – actually you need to be very still. Still on the spiritual level so you can connect with your true self and the human spirit that binds us all.

My desmoid sister Jessie and I celebrating my stable tumors.

My desmoid sister Jessie and I celebrating my stable tumors.

Today, I look proudly at the reflection I see in the mirror. I embrace my new body and I pledge to do everything it needs me to do to support it along our journey together. Just because I think walking or running is the best form of mobility doesn’t mean IT IS. My body has certainly informed me – loudly and clearly – that physically this is currently not the best fit. Through the breaking of my mind and my body, my spirit has finally emerged triumphant. Rather than continue trying to regain what I have lost, I am celebrating what I have become. And in this process, I have finally and truly begun to heal, from the inside out.

Hear me speak live this week about my healing journey! Tune in this Thursday at 7 p.m. EST to DTRF Running for Answers on Facebook for my live discussion on “Healing from the Inside Out.”

My Inner Sunflower

August 22, 2017

Returning to Port

April 12, 2017