By | October 3, 2016

Your eyes open to loved ones and medical staff swarming around you. It takes a little while to get more than the colors in the room, the bright sunlight streaming in from the window. Your senses are not doing what they normally do. Finally you have a little more control and you move your head around a little. Someone gets up and tells you to take it easy. “Easy! I just moved my head.”
Then the doctor enters the room and sits down. Doctors don’t sit. A few more people follow him in the room and close the door behind them. The air could be cut with a knife and the tension is already sky high. “What the hell is about to happen?”
“How much do you remember about the accident?”

“There was an accident?”

“I’ve got something you need to know. During the accident you had a…”

This is the scenario that most people envision when you think of becoming acquiring a disability. Due to an accident involving a car and bad luck, you awake to the prognosis of permanent paralysis, a TBI (traumatic brain injury) or some other type of news. Without question this happens but just as often the diagnosis occurs due to everyday causes and undiagnosed congenital cases (born with it). That was my case; a diagnosis that was for the longest time both of the doctors hands in the air with ‘IDunno’ syndrome. It’s an insidious condition, ‘IDunno’ and believe it or not, doctors deliver that information with some frustration and not a lot of empathy. From that point forward, “normal” requires new definitions, reset expectations and a lot of change. It stretches you in an interesting set of directions and asks (tells) you to get used to it. What I have learned is that stretching that is so valuable for warming up and remaining limber is equally valuable in the personal growth of a person with a disability. These are the five lessons I’ve learned that’ve proved to be most valuable in living with a disability.
Patience – ‘Defined as the capacity for calmly enduring pain, trying situations, etc.’
The level of patience I had when I first began the journey was poor (which is charitable to say the least). Through a series of growing pains (with a chronic pain condition), I slowly developed a deeper and deeper reservoir of patience. My experience is that impatience comes from the desire to have things be a different way and the frustration of not being able to do anything about it. Acceptance leads to patience.
Empathy – ‘Defined as the psychological identification with or vicarious experiencing of the feelings, thoughts, or attitudes of another.’
I probably would still be a selfish and self-centered person if disability wasn’t a reality for me. Part autism, part ego driven and 100% me, 24/7, doesn’t lead to an empathetic view of the world. Having talent in a few areas didn’t help either; it was very easy to live in a world that never took others into consideration. Living with a disability caused my perspective to change. Even with managing the pain, my happiest days are those when I’m outside of my head and attempting to experience what those around me are. Through experiencing the world outside my ‘mental movie’ I can experience compassion and feel connected with the world – the exact opposite of my world when the pain swarms.
Acceptance – ‘Defined as to give up or over; relinquish or resign (as in yield)’
Giving up is a tricky subject. Walking away from a challenge is not what I’m referring to at all. Rather, acceptance was a fabulous lesson to learn on the journey. It taught me that that grasping for activities that would inevitably lead to me injuring myself is suffering at its core. The desire to be normal is so strong that accepting I am better off avoiding specific activities is a tough trade-off. Through a lot of practice, I have grown to understand that acceptance of my reality is best; even if I am trading normality for the better choice of a high road I must take.
Constancy – ‘Defined as the quality of being unchanging or unwavering, as in purpose, love, or loyalty; firmness of mind; faithfulness.’
My life, even up to a few years ago, was spent riding the roller-coaster of emotions and circumstances that life has to offer. This led to a series of highs and lows that were not helpful to my journey. Starting a day knowing that there was no way to control how things would come was frustrating and challenging. I then began a philosophical practice that taught me I had it reversed. Instead of controlling how things would come I started to practice controlling how I reacted to what came. This was a revelation and one that has added a great deal of happiness and even relief in knowing that my response to whatever the world has to give is what informs my journey – not the stimulus of the moment.
Essence – ‘Defined as the basic, real, and invariable nature of a thing or its significant individual feature or features’
A chronic pain condition strips away all of the trimmings of life. When the pain creeps over the medication and begins to dominate the moment, nothing else seems important. It’s like a set of sheer drapes that have been placed in front of my eyes that I must fight through to get to what’s outside me. A charley horse type of pain coming in waves like oncoming tides is a big hurdle.
I began to meditate several years back and experiencing the current moment, without judging what was there, was revolutionary. That essence of zen – the moment of presence that can’t be saved or changed, can stand holding the drapes aside if I remember to tune into it. Digging into what “I” am all about is an education of my essence and makes the process easier. When the pain comes now, I can observe it for what it is: a temporary change in sensation that will pass and moreover, I am not the disability. It is but a minor detail of the essence of what I am.
I hope this has found you well and you’ve gained something from my experiences. Knowing that I can trust the experience and advice from others and avoid making the same mistake, stubbornly, is freeing.
All definitions are from and unmodified from the source.