Disability confidential. Informing. Empowering. Agitating.
Life After Paralysis is a blog that represents a variety of paralysis community members. It is a place for open conversation about the issues and the interests of people living with paralysis, their family, friends, caregivers, and the professionals that serve them.
Comments are welcome!
The opinions expressed in these blogs are the author's own and do not necessarily reflect the views of the Christopher & Dana Reeve Foundation.
(Find out more about the contributors at www.ChristopherReeve.org/contributors.)
"As the blur of the first hours, days or weeks
Turns into a realization that freedom is gone forever,
The bed becomes a prison in its own small world.
The ministering hands become symbols of helplessness
In a world of the independent.
With the return of strength, tools offered become a means
of escape to the past.
The silver spokes and rolling wheels move grudgingly
Through corridors of pain and recovery. They lead to a chance
Into the world that was before.
Tile halls and open doors allow sure growth of speed, strength and mobility,
As the basics of life stay within reach.
Wheels become the legs taken away so suddenly, so unfairly.
Curb drills, wheelies and gentle slopes lead to the open spaces beyond.
The anticipated, perhaps dreaded, day arrives;
With a sudden rush we're pushed over the threshold for the last time,
Into a bright, and scary, world of upright humanity.
Dependent on others, we struggle to remain strong and calm
In a place without understanding: doors remain closed, curbs become cliffs,
And toilets are often beyond reach.
To use a phone, find a ride, eat a meal and travel freely
With the rest of the world become our battles.
Attending schools, work or scheduled functions require the strength and planning
Of a war.
A body that cannot respond
Is less frustrating than a world that refuses to.
A mind littered with the debris of others' attitudes slowly becomes accustomed
To the limited space in the accessible world.
A life of simply surviving is a slow, and painful, way to die.
©1988 Michael Collins"
What is this? Definitely not a real poem, or haiku. Instead, the above was written in 1988, not long after I was released from six months of rehab following my C5 spinal cord injury. By then I had experienced the frustration of trying to find accessible housing, dealt with an inaccessible transit system, lived through the departure of two far-from-sufficient (even scary) attendants, run headfirst into many roadblocks thrown up by public perceptions of disability and often had to battle my way through a community that had not yet experienced the changes that would begin to occur two years later, after the Americans with Disabilities Act (ADA)
Fortunately, it was not too long before my life began to change for the better. This was the same change experienced by many of my friends in similar circumstances. While I did not consider myself to be depressed, just extremely frustrated, I now see dark edges surrounding the writings above. Family and some old friends stuck with me, and many new friends entered my life. Despite the shortsightedness of my initial rehab physician, I sought work and was successful in reentering the world of employment--which forced me to focus outward on more than my daily physical and emotional needs.
I think it is always important to look back, which I did when I found this writing in a pile of old papers. However, I think it is also important to read it in context of my recent blog "Anniversary Blues?"
which I am reposting here. That article serves to illustrate the real things of value in my life, and perhaps in yours, which I have finally learned about after 25 years of living with this wheelchair.
I just wish there was an easy way for us to know about the inevitability of such things during the early years of paralysis, so we wouldn't have to waste so much time looking back or focusing on the day-to-day -- when we should be looking ahead. There is definitely life after paralysis.
© 2013 Michael Collins