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Spinal Cord Injury Community

20 Years With SCI: A Long Road…

Aaron Baker
Spinal Cord Injury Lifestyle Specialist | Shield HealthCare
07/15/19  4:30 PM PST
20 Years with SCI

What a ride it has been…

Looking back at the past twenty years, it is hard for me to wrap my head around the story of my life after injury:  the many epic adventures, the deep struggles, the immense love and the darkest days. The achievements and the painful lessons all while managing the exhausting, spirit-breaking complications of a spinal cord injury.

This ride is not just a short stroll around the block, a handful of hard days, a rough patch of adversity, or a fleeting bout of depression because things are tough. No, this is my every day reality – I wake up to an iron-stiff, spastic body that convulses and nearly shakes me off the bed. A bladder that is rarely predictable and a bowel that has to be scheduled. Some days I can slowly walk with a cane, walker, or a helping hand. Other days, my energy is so low and blood pressure so erratic I can barely stand or sit, and sometimes not at all. I am constantly on my guard, listening, watching myself and sensing my body for irregularities, or signs and symptoms of dysfunction. Maintaining the energy it takes to live this way is something I struggle with all the time, especially as I age.

I am sharing this not to complain (pet peeve) but rather because I know there will be many who read this that can relate.

I am also writing this blog for me, a cathartic reflection upon twenty long years of effort. My effort to live far away from a dangerous place I have been before. A dark place in my mind that lingers at the fringes of frustration, a vicious spiral into oblivion where I must work hard to rise above the slippery slope of doubt, anger and fear.

Because of my choices, I have been asked many times, “Why?” Why did I pedal a bicycle across the country, walk across Death Valley, race down a mountain, or ride a motorcycle again? My answer is and has always been, “Because I can.”

I call it self-induced suffering. Suffering on my terms, and exercising my demons. This injury has a way of crushing my confidence, magnifying my insecurity and making everything I do excessively difficult. My logic is:  if it’s this hard for me to do the simplest things like getting dressed, or taking a single step, then why not take one thousand steps and make it an adventure, a journey worth sharing?

One of my dearest friends said this about me: “If Aaron can walk, or ride a bicycle for one mile, then he wants to do it across the entire country.”

It’s the tiny twitch of my toe, the slightest glimmer of hope… the one-in-a-million chance. It is the flame I like to throw fuel onto! It is my way of channeling whatever energy I have, positive or negative, into action… Because action changes things.

My friend’s words are pretty accurate, and in short, they sum up my personality. If I can do a little, than why not do more? Clinically, this may be recognized as an addictive personality trait – not always the healthiest way to live. I should know, I have witnessed the destructive effects of this disorder within my own family, and I fear the ease with which I obsess over things I am interested in.

Intentional self control and accountability are my ways of keeping myself in check, away from an abusive tendency and on track towards my goals. Throughout all these years I have used this trait to heal, educate and find my way to happiness.

“Happiness is when what you think, what you say, and what you do are in harmony.” –  Mahatma Gandhi

Today, at this moment, I am happy. I am happy because for the most part my thoughts, words and actions are in alignment. My way of being is in harmony, as quoted by the great Mahatma Gandhi.

Through the chaos and the noise, the pain and the game of life, I pause in moments of perfection; to listen to the sounds of nature, the beauty around and within me, and to pay homage to life… My life, and all those I share it with.

I write with reverence and gratitude for my body, its vitality and ability. I honor my loved ones and their unconditional support. I am grateful for the people and community I have the privilege to work for and share with. Many times a day I whisper to myself “Thank you,” because I thoroughly know that things could always be worse.

I can tell you honestly, though, that I do not have it all together. I do not have all the answers. Things do not get easier as you age with a spinal cord injury, and the energy and effort I gave towards my recovery twenty years ago must continue today if I am going to thrive, not just survive.

That is why I choose to throw my leg over the seat of a Harley Davidson motorcycle, velcro my right hand to the throttle and twist it wide open towards the future. Because at the end of the day, I want to get back on the horse and enjoy the ride of life.

-Aaron

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I have c6 injury and I have lots of spasm in my whole body. What can you suggest to help?
Rahul
I have found that consistent stretching, light exercise, plenty of water, quality food and rest all affect my spasticity.


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