Out On A Limb VI: Will I Ever Walk Again?

“Will I ever walk again?”

Usually in the movies you see the concerned looking doctor in a starched pristine white coat speaking quietly to his/her patient and their family. After explaining the nature of the patient’s injuries, the physician (glancing at his ever-present clipboard or chart) confidently answers this seemingly straightforward question. A positive answer brings tears of joy and a negative one, tears of despair. In the “real world,” answering this question is a bit more complicated and not just limited to the doctor in charge….

Whenever I was asked this question in my ‘green’ years as a physical therapist, my inner monologue would often fire off saying “Damn it Jim! I’m a PT not a doctor!” This was my fear and insecurity (and really bad Star Trek) bucking away at being cornered with such a hefty query. I knew that, in most cases, the doctor had already spoken with the patient. I knew what the MRI’s, CT’s, x-ray results said and that their grim news had already been explained to the patient. And yet they would still always ask…

Sometimes this question would come from patients in horrific accidents that resulted in massively disfiguring burns to their legs. More often, it would be the first question posed to me from a paraplegic or quadriplegic patient that I was evaluating a mere 24 hours after their terrible accident. Numerous times I would watch, seated quietly at their bedside, as they gingerly touched the remnants of their leg that had been removed in an effort to save their life. They would look at me and my colleagues with that dreaded question in their eyes.

Sometimes the answer was yes…..sometimes the answer was no.

As time brought experience, I became more comfortable addressing this question. I realized that most patients just wanted to hear a definitive answer. They wanted “the truth”… even those that weren’t really quite ready to face the reality of it all just yet. Seemingly, patients would ask me because, as a physical therapist, I was (presumably) an authority on the mechanics of locomotion and movement and they wanted to see if maybe I would contradict what had originally been told to them by the doctor.

Still a few more years went by, and I got a lot older and a little bit wiser. I realized patients weren’t necessarily coming to me for “the answer”. They knew the answer already. In asking me “Will I ever walk again?” they were really asking if they could beat the odds – if they could be the one to conquer the statistics and numbers that had been set in front of them by these cold hard tests.

Therein lies the rub… Numbers and statistics. And darn statistics.

I like to call myself the “anti- poster child” for breast cancer. I had a normal, “healthy” development as a teenager (including a smart mouth and bad 90’s hair). Breast cancer is less likely in women who have kids. I had four. Breast cancer is less likely in women who breast feed. Boy, did I. For a long time. I had never smoked. I could tick off all the boxes that indicated I would NOT get breast cancer. Statistics (there it is again) placed my breast cancer risk at 3%–lower than the 8% that the average woman has. These were odds that were in my favor…

Fast forward to three debilitating surgeries, numerous procedures, and twelve weeks of chemo later and I’m sitting in my oncologist’s office listening to my final report card. Says the doctor: “Since you decided to take the most aggressive treatment available, your chances for recurrence are down to 10%”. He looked at me encouragingly, expecting that this news would have me burst into song a la Julie Andrews.

Ten percent? Really, dude? Ten percent, when originally, my chances of ever contracting breast cancer in the first place were 3% and oh boy did I get the winning lottery ticket there!? I guess the look on my face said enough and he changed tactics. He pointed out that what I really had was an overwhelming 85-90% survival rate. Yep, sorry boss, still not feeling a whole lot better….that evil initial 3% kept taunting me in the back of my head.

It took some time, but here’s how it changed…..

Statistics and probability deal in cold, hard numbers. Believe me, I spent enough hours in grad school knocking my head with all kinds of numbers and stats while poring through what seemed like an endless pile of research studies. Those numbers could overwhelm you as a mere student researcher, so imagine what they could do to you reading them (or hearing them read to you) as a patient. They seemed insurmountable in their weight and “power”. Then, I realized who was giving that “power” to them. It was me. It was then and there that I vowed not to be cowed by them (wow, that rhymed!). I made a conscious decision to simply not pay attention to the numbers anymore (and yeah, it took a few tries). The only number I would acknowledge from that day on was the number ONE.

All I needed to know was that somewhere out there in the ether, there was at least ONE woman who’d had the same type of cancer as me and had gone on to lead a full, healthy life afterwards. I knew that ONE woman existed – and that was all I needed. That knowledge was all I needed to become that woman as well.

Once I let go of the numbers, I could conceptualize my whole future again. My dreams of holding grandchildren and great grandchildren (I’m thinking I need at least 20) were less uncertain. I could entertain my corny notion of growing old and saggy with my husband on a porch somewhere (air-conditioned, of course, because we do live in Florida). I could dust off the idea of opening my own clinic, and be able to practice my profession on my own terms. I would hold myself, my health, and my future accountable to me and the Big Man Upstairs, and not to numbers.

Nowadays, this is how I answer the inevitable question with my amputee population….wait for it folks…. Ironically, I start by giving them some numbers (I know, I know. But wait… )

A person with bilateral above knee amputations has a 10% of becoming functionally ambulatory. This means they have a “measly” 10% chance of tolerating two hard unyielding prosthetics for more than 8 hours a day as they try to negotiate their unforgiving home and work environment. Now, remember (go read the previous blog if you don’t!), a bilateral above knee amputee expends a daunting 300% more energy than the average Joe sauntering down the street.

I then point out that the 10% is in their favor – this 10% means that there is at least ONE person out there with the same obstacle who overcame the challenge and was successful.

This is where the internet works in the favor of those seeking answers. Videos of bilateral amputees like Amy Purdy tearing it up on wintery slopes or whisking across a ballroom dance floor pepper search engine results on Google as well as YouTube and Facebook. Others like Tinkesh Kaushik  make their blades move so fast you have to look closely to make sure your eyes aren’t playing tricks on you.  These are individuals who decided to toss the numbers out the window and create their own success story, numbers be darned.

Is it to say all amputee patients I have this talk with become these elite athletes? No. But If I’ve done my job, then they understand that (at least) the possibility is out there.

When a patient comes through the clinic doors with tough questions, I don’t sugar coat things. They know that they will still face the hard reality of combating skin problems, phantom pain, weight management, numerous trips to the prosthetist’s office, and sometimes even numerous trips to the OR. I try to explain the details of what is in store in order for them to be successful with their mobility. The list of boxes they must check off to accomplish this is often long and not for the faint of heart.

Obviously, there have been occasions where a patient of mine with an amputation has not been able to reach their mobility goals. Some of these patients decide to end their treatments long before the desired mobility is achieved. They have had a taste of the strenuous work involved, weighed the pros and cons, and made the decision that it is no longer a goal they wish to attain. To these individuals, I shake their hand and congratulate them for trying. I know how hard it was for them to come through the door on that first visit, and that is was often even harder for them to make the decision to leave. I sincerely wish them well, and I know that if theirs was a balanced and rational decision, then they will do just fine. I make it clear to them that my door will always be open should they wish to try again and again (and again).

Sometimes, someone has to end treatment due to circumstances that are completely out of anyone’s control (theirs or mine). When this happens, it is heartbreaking for me as both a clinician and a former cancer patient. I recall many times in my own course of treatment where things definitely didn’t go as planned and to have that control wrested away was nothing short of teeth-grindingly frustrating.

Interestingly enough, I get to see many of those same patients have success later on, and not just from a mobility standpoint. Those that are able to accept that they have no control over certain aspects of their health situation learn to work around it and move on. Even in cases where the person ends up with limited mobility. Their views and goals change and they end up taking paths much different than originally planned. They are successful because they don’t let the numbers tell them what they can or can’t try, and they’re the ones deciding what their future looks like.

“Will I ever walk again?”

This question no longer strikes a chord of angst inside me. If anything, I welcome the challenge as it opens the door to beautiful conversations where as a clinician I can tell the patient not to give credence to the numbers and in turn ask them….”What do you want to achieve?”

Now, it’s not to say that doubt and fear don’t occasionally whisper in my ear dangling the numbers and percentages in front of me. I just don’t let them whisper for long…

I tune them out. And, if I’ve done my job, my patient will too.

God, grant me the serenity to accept the things I cannot change,

Courage to change the things I can,

And wisdom to know the difference.

  • -Reinhold Niebuhr