Making Lemonade

About 18 months ago, one reason I began meditating (and studying Taoism) is because my feet, and thus standing and walking, weren't good for me. The crippling pain caused by my birth defects would set in within my first block of walking anywhere. After two blocks, I'd have an obvious limp. And, after three or more blocks, I'd be dragging my left foot behind me; like a dog that had been hit by a car.

After 45 years of standing and walking as described above, I just decided it was time for me to sit down ... and, like all things I've tried in life, to sit very well. This realization and decision meant I had to be content with sitting in one place for indefinite periods of time; something that, without training, many of us westerners don't do well at all.

I wasn't new to the idea of meditating. It had been recommended by my family and doctors for years; I just wasn't ready to meditate at the time they suggested it. But, because my new approach to life required that I sit very well, I suddenly felt a strong desire to learn how to meditate. And, luckily for me, learning how to meditate has recently been simplified using smart phones and applications.


Gaining some 'Headspace'

After Googling "best meditation apps for Android", I found the Number 1 app for learning and practicing meditation, at that time, was called 'Headspace', and I immediately downloaded the app and eagerly opened it. In less than a minute, I was learning how to meditate, and seconds later, I was beginning my first three-minute meditation; following the instructions and narrative by Headspace founder and Buddhist Monk Andy Puddicombe.

I found it fascinating that, when I followed Andy's instructions perfectly, all the different lengths of meditations felt as if they took up the exact same amount of time. Five, 10 and 20-minute meditations felt just like three-minute sessions. Within a month, I was meditating two times each day, for 15 minutes each sitting. And, in my second month, I bumped that up to 20 minutes each sitting.

The results were exponential. After just two months of meditating daily, I had ideal blood pressure, had lost 12 pounds without trying and had a steady pulse; whereas prior to meditating, I had high blood pressure and common heart palpitations.


Walking 'The Path'

Amazed by meditation's benefits, I decided that, to become even better at sitting, I wanted to learn more about the origins of mindfulness and meditation; which lead me to picking up a book called "The Path" from my local public library. It was an easy-to-follow history of ancient Eastern philosophy; mainly the origins and intentions of Buddhism, Confucianism and Taoism and how they could be applied in a modern western society.

I'd read the Tao Te Ching in previous years, but I had never really studied it. After finishing "The Path", I decided to take a closer look. And, when I applied mindfulness and meditation to my studies in Taoism, everything just began making sense.

And, when I say 'everything' began making sense through my studies in Taoism, I mean EVERYTHING. Why we do what we do and a better way to approach all occurrences in daily life; with peace, patience, humility, frugality, gratitude, harmony, compassion and love guiding every single one of our decisions. In practicing daily meditation, mindfulness and Taoism, I felt as if I had sipped from the cup of wisdom, and after my meditations, I was often left in a state of awe; marveling at all my mistakes and the entire world with a sense of wonder similar to that of a toddler allowed to explore their world, outside, for the first time.

Of course, that doesn't mean I'm perfect in my practice. Far from it! But, my studies have allowed me to gain the peace and stillness of mind required for me to sit very well for long periods of time without feeling a need to move or go anywhere; not out of laziness but out of true awareness of the ever-fleeting present moment.


From Lemons to Lemonade

My studies have also yielded a better understanding of myself, my physical and spiritual needs and my potential as a sentient being and Tao cultivator. When I make mistakes now, I am quick to realize and learn from them. When I align myself with Tao, I feel it. And, when I am not balanced, I feel that also and am now better equipped to get myself back on track.

The original goal was to become better at sitting, because it was painful for me to stand, but the result has been and is so much more. Through studying Taoism and practicing mindfulness and meditation, I have become a newer, better version of myself; someone I never would have before imagined.

The birth defects that have plagued me all my life have thus become my greatest blessing. My only hope is that, someday, I'm able to give back to the world all that it has afforded me.

I am grateful for this opportunity.

(Photo: The author's meditation corner in his apartment.)

Gaining Momentum

Spinning our Wheels

To say it's difficult to find purpose after we've become disabled is more than an understatement. Whatever we did before, whatever life we lived and much of what we enjoyed very quickly vanishes into the past. It doesn't matter who we are, our credentials, our specializations or even our passions; that part of our life is over, and it is up to only us, as disabled adults, to find, create or uncover our new life's purpose ... a sort of mission statement by which we conduct ourselves each and every moment.

Understandably, we are easily daunted by the tremendous task of building a new life as a disabled adult. For us, the answer often isn't as simple as learning a new skill, going back to school or even just offering a helping hand. Many of us strive to find even one reason to keep living each new day.

Eleven years ago, I set out on this disability journey. Once an award-winning small-town journalist, I struggled with my life's new circumstances for the first 10 years after I was pronounced "permanently and totally disabled" by the State of Iowa -- for both physical and mental health reasons. Throughout that decade, I had a seemingly-endless supply of ideas for my new life's purpose, but they all seemed so distant and so unreachable. In my mind, I was a partially-crippled and burned-out middle-aged man, and although I'd retained all the skills from my past newspaper career, I had absolutely no idea how to use them; where or how to begin ... and, perhaps most importantly, why.

Then, recently, a friend introduced me to the Netflix phenomenon "Queer Eye". In awe, I watched episode 2 of Season 4, when the Fab 5 teamed up to help the show's first visibly-disabled and wheelchair-dependent nominee. Wesley Hamilton, paralyzed after being shot (and through an incredible amount of very-hard work), turned his life around and began a nonprofit organization to help wheelchair-dependent people in his community (see the link below to an external article on the episode).

Being mobility-impaired all my life and having been wheelchair-dependent several years ago, my heart ached, as I watched this beautiful story unfold before my eyes. I was in such awe that I couldn't cry. I remembered how humbled I was when I also found myself in a wheelchair; how everything in my life changed the moment I first awakened and realized I could no longer walk ... and how so many people, professionals, family and friends pitched in to help me survive my injury.

And, subsequently, my wheels began spinning again ... but, this time, they were spinning in a very specific direction: "How can I give back to my community?" The answer was at my feet, literally, my whole life.

~~~~~

Adding Injury to Injury

(Profile photo of author's inside-left foot)

I was born with a rare genetic defect that affected my lower legs, ankles and feet. Known as a 'Bilateral Subtalar Tarsal Coalition', the defect consists of the natural fusion of some or all of the bones that make up what most of us refer to as the ankle. While most Google searches will show that about 1 percent of the population has a tarsal coalition, the truth is that true tarsal coalitions are found in much less than 1 percent of us. In fact, my specific condition is represented in less than 0.1 percent of the population; making the tarsal coalition far more rare than "club foot". The condition is so rare that it doesn't even have its own medical insurance billing identification code.

How does it affect someone? Well, as my podiatrist once explained to an employer, I have been "walking on two broken ankles" my entire life. Because I use my hips to walk, instead of my non-functioning ankles, my lower legs have atrophied, and it is highly unlikely that I will ever have appropriately-sized calf muscles for my six-foot-five-inch frame. In addition to the pain inherent to the defect, I've also had arthritis in my ankles since age 17. Not only can I not jump; I am also unable to walk more than two blocks without crippling pain.

A surgery is available for people with "TC", but it only has an 80-percent-reported success rate. And, those whose surgeries have failed are far more miserable now than before they went under the knife. Even patients who have a successful surgical procedure are bothered by having to repeat surgeries throughout their lives; for anything from replacing outdated parts to bolts poking through the skin on their heel bones.

Many of us have begged our doctors to amputate our feet and give us prosthetic feet in their place. But, those pleas have fallen upon the deaf ears of the inexperienced medical community, which believes that the phantom pain we might experience after amputation could be worse than the disabling pain with which we've been forced to live with, without amputation.

As if I wasn't already living with enough pain, in 2016, to treat a bacterial infection, my doctor prescribed me Levaquin and Ciprofloxacin. Because my doctor prescribed them, I thought they were safe for me. Little did I know that, in the tiny print of the medications' handouts, it is advised that people with pre-existing musculoskeletal conditions abstain from using these medications due to possible exacerbation of the pre-existing conditions, including the inflammation and potential rupture of affected tendons and muscles.

After three days of taking the antibiotics, I awoke one morning, slid my feet onto my bedroom carpet, stood up and casually took one step forward, when I heard a loud "Snap!" And, as I hit the floor, I felt as if my Achilles tendons were slashed. Not knowing what had happened or how to cope with it, all I knew was that I was in the most horrible pain of my life, I couldn't stand or walk, and I needed to use the bathroom.

After dragging myself 20-or-so-feet to use the toilet, I got on my phone and just started calling people; my doctor, the hospital, various social service agencies, etc. And, eventually, I was referred to the county's public health nurse, who delivered my first wheelchair (pictured below) to me later that first day.

Luckily, the tendons hadn't fully ruptured, but scans showed they (and all other tendons in my lower legs and feet) were greatly swollen and inflamed. And, there was no guarantee that I would ever be able to walk on my broken feet again. Fortunately, after six months of being confined to the chair, through great effort and physical therapy, I was able to put my wheelchair in storage. But, I will never forget my time in the chair, and I am always reminded that there will come a time, sometime in my life, again, when I will need to rely on that wheelchair once again.

But, on the plus side, I absolutely loved my manual wheelchair experience. Because I was plagued my whole life with difficulty standing and walking, I found joy in depending upon my wheels. For the first time, "going for a walk" was painless, because I was, instead, "rolling". Set me free in a big-box store, and I would roll for hours -- much faster than I could ever walk before, and no one could keep up with me. In spite of the infinite number of challenges of being confined to a manual wheelchair, I appreciated my new wheels. And, although I was happy to be able to walk again, I have oddly been looking forward to getting back in the driver's seat of my wheelchair once again.

~~~~~

My Movement

In the days following my viewing of the Queer Eye episode, with a friend who temporarily relies on mobility assistance, I noticed many ways in which my local community, my hometown, is and is not wheelchair-friendly. Although my community is home to an abundance of social services, there is no local wheelchair-focused club, group or organization. Also, aside from a couple pharmacies that carry limited lines of mobility products, the nearest mobility specialty dealer is over 50 miles away, which may not seem far but is still out of reach for many of us who can't drive ourselves. And, furthermore, to the best of my knowledge, no facility within 50 miles of this community allows people in wheelchairs to "roll" in their gyms or on their tracks; and, if they do, they certainly don't publicize that option.

Therefore, I'm embarking on this mission ... to establish such an organization in my local community, to advocate for the mobility-challenged and to also advocate for more wheelchair accessibility. It's simply not enough that local buses are wheelchair-accessible, when most local businesses don't offer wheelchair-friendly entrances, accommodations or restrooms.

But, while working on the future of this new organization over the next year or two, first I need to get back into shape. And, to do that, I'm getting back into my wheelchair. I'm no longer wheelchair-dependent, but I have a feeling that being wheelchair-reliant is exactly what the doctor should have ordered.

And, all of you are invited to join me on this journey to self-rediscovery, wellness and self-re-purposing. It will surely be a heck of a ride.

I am grateful for this opportunity and for your support.



(Photo: The author, Zach Jensen, in the fall of 2016)

https://www.indy100.com/article/queer-eye-season-4-wesley-hamilton-disabled-wheelchair-netflix-9017281