The people-I-used-to-know

I've noticed over the years that I now react very differently to something that happens in my life since I acquired my disability.

I'm talking about the flight reaction of people-I-used-to-know.

It happens when I run into old friends who don't know about my accident. As the years go by, I've seen every reaction from initial curiosity to a shrug of the shoulders, to running away.

Shortly after I acquired my disability, one used-to-be-best-friend visited me from out of state, told me that my disability was "pretty bad" , and cut off communications afterward. I was at a point where I'd worked very hard for the function and physical ability I had and really disagreed with her assessment. (An interesting aside here is how people reacted to the movie A Man and his Dog, where French star Jean-Paul Belmondo, after having a stroke, appeared in the film that showed a realistic portrayal of his disability. Poor ticket sales were, in part, explained by the fact that audiences wanted to remember him as he was.)

I used to feel quite upset when flight reactions happened. It felt sickening sometimes, as if I was no longer the person I was expected to be, as if I had somehow let these folks down.

Then I realized that I was internalizing their reaction. Their fears and assumptions about disability were overriding their ability to be present with me. They were running away from what they imagined, I suppose, was a ruined and doomed life.

They certainly weren't seeing me. And if they were more invested in remembering me as I was than who I am, I realized, that was about them, not me. This is who I am now.

My life is good. I work and have a full and productive life. I have friends. I'm busier than many able bodied people. And my ability to be happy is linked to my choices in life, just as it is for everyone else.

This is what the people-I-used-to-know would have found out if they hadn't run away.

Back in life

Greg over at Pitt Rehab has posted a video about a 19 year old young man who is a C5-6 quadriplegic and decided to make a short film about his life since he acquired his disability. His motivation: to help others the way he was helped by other quads. It's a great video for everyone to watch since his message is one all of us can relate to.

Izzy, Willy- Nilly- A YA Book

Last night I read a Young Adult novel by Cynthia Voigt entitled Izzy ,Willy -Nilly, about a 15 year old cheerleader who, after taking a ride from an intoxicated high school senior, is in a car accident and has a leg amputated as a result. The book is written in the first person and at least half of it covers her time in the hospital, then follows her home as she goes from using a walker and wheelchair to crutches, goes back to school, deals with a trio of friends who get real busy and have no time for her (one of whom dates the senior who was driving) and makes new friends.

Unfortunately the book ends just as Izzy is about to get her prosthesis, which limits discussions about living with a disability, rather than about acquiring one and dealing with the immediate aftermath.

The first person narrative is effective as Izzy copes with medical treatment, the reactions of family and friends, and gets to know herself better. I also liked the fact that she is not portrayed as a superhero. She doesn't want to go back to school, for example, and face everyone. There is a genuine portrayal of a real friendship that Izzy finds with Rosamunde, who visits her in the hospital and in a direct and compassionate way challenges Izzy so she can move on in ways her parents seem unable to do.

In one scene, Rosamunde visits Izzy's hospital room, described as stark and empty, bringing library books, a batik and vase her mother made, fun food and a game to play. Izzy looks around and says to herself the room doesn't look like hers- it's messy, but she she likes it. Her mother, who is very concerned with appearances, initially dislikes Rosamunde, but begins to understand that as a friend she sees what Izzy needs in ways her family may not.

I like the message of this book, that the changes that come with acquiring a disability are positive and it's also okay to get support for what may be tough to handle. It deals with issues such as staring, motivation, DWI, personal empowerment, empathy, friendship, and the myth that people with disabilities are asexual. It's not a new book (published in 1995) but a worthwhile - and quick - read for those either dealing with or learning about acquiring a disability.

Email question on resilience

A reader who is newly disabled writes asking for tips on developing resilience. He says he needs more resilience because he's feeling frustrated a lot. I link above to some tips over at the Mayo Clinic website along with a quiz to take.

But I'd like to mention that some folks mix up resilience with stoicism. Adapting when it comes to your disability, whether it's a newly acquired one or you're taking on a new task or have a change in your disability or your life circumstances, can involve a temporary set of "challenges" that can take varying times to deal with. While you're going through this, it's normal to have feelings - maybe grief, frustration, anger, joy, excitement - it can vary. The important thing is to hang in there.

Let's take the example of learning to use adaptive equipment. Realistically, some equipment takes awhile to get fitted and/or to fund and find. Then you need to learn to use it and the learning curve may be at a pace that tries your patience. Sometimes you need to arrange for the help of an occupational therapist or another expert.

It can be easy to get down on yourself while you're going through all of this and if folks around you don't understand they may inadvertently add to it rather than support you at each step of the process. One young guy I met never got his driver's license because his dad had trouble dealing with the frustrations of waiting at each step and kept complaining to his son "It's taking too long!" I pointed out that if his son gave up, he'd never get it and boy that was going to be a long wait. Nevertheless, his dad missed seeing the big picture.

I wouldn't worry though. Not only is it a waste of energy, but many problems get ironed out with time, effort and patience. What can look insurmountable when you're just starting a process looks much easier when you reach the middle and later stages.

Feel free to leave comments of how you dealt with adapting - or if you need some support as you go through a change. Often the best advice/suggestions I get are from other members of the disability community.

The Spiritual Experience of Disability

I've been asked many questions over the years about my disability. But I'm always surprised by how infrequently I'm asked this question even in religious settings: what is your spiritual experience of disability?

The answer to this , of course, is different for everyone with a disability. In my case, the experience of living with a disability has deepened my faith as a cradle Catholic. I pray more, feel the presence of God more and have been led on a journey that I never anticipated - one that's increased my awareness of myself as a member of a larger Body of Christ.

On the day of my accident I remember hurrying around. I was leaving for a vacation and it was the first one I'd taken in a long time. As I checked off everything I had to do on my list, I remember thinking that I didn't have time to take this vacation either. But all my plans were made so off I went.

When the accident happened, my first reaction was the same: "I don't have time for this." I had no idea that I was about to undergo a life changing transformation, one that made my "busyness" literally cease and desist. My identity, so closely tied to my occupation and business and what I did every day in that role, began to painfully change from that moment on. As the gravity of my injuries become apparent to me, I stopped taking things for granted that I always had. I realized for the first time that not only was I mortal, but I had been "temporarily able bodied".

Shock set in as I realized I was not going to get "better" physically and would have a disability. Denial kept dancing around me, as did anger, bargaining with God and all the typical Kubler-Ross reactions. I became stuck in anger after I was told that I would be a quadriplegic. This was very painful and a wall grew up between myself and any kind of spirituality during that time. I had no idea that living with a disability could be a positive, life-affirming experience. People were put into my life who helped me learn that lesson.

After several years I emerged ready to move into acceptance and began in earnest to have a dialogue with God for the first time since my accident. This spiritual connection grew over time and deepened enough that I sought ways to serve and give back to others, recognizing for the first time the many kindnesses I experienced as I healed. The love I received from others was very healing. As my identity as a member of community grew, I learned a great deal about inclusion.

My blog is an extension of these experiences as well as a part of that journey. My spiritual experience has run the gamut but whenever I receive Communion I am reminded that I am a member of the Body of Christ and the mystical experience of that Sacrament reaffirms God's love for all of us.

Praying on wheels

How many times I took long walks during my teens and early twenties, pondering the issues of my life - career, relationships and faith. As I walked, I prayed.

In my early thirties, I remember playing my guitar (I used to be a classical guitarist before my accident) and singing along in prayer as I played.

After my accident, my prayer became more simple. It often consisted of saying one devout Our Father because my energy was low. Or perhaps I would read the Bible and pray afterwards. I remember reading passages from Job, searching for answers to the doubts that arose when my life was disrupted by my spinal cord injury.

Those answers did not come in the form I expected. I never thought that Bob, who came to my home to sell me a wheelchair, would be the agent of change. He was a vet, about twenty years older than me and an ex-high school teacher and coach who was coping with a progressive neurological disease that had him using wheelchairs. He played wheelchair tennis and began to recruit me after he saw me watching ESPN on several visits.

"You like sports?" he asked.

I shrugged. In the months after my accident, I wasn't sure I liked anything.

He dragged me outside to try his handcycle which was the first time I moved fast in months. He ordered a speedy wheelchair for me and dragged me over to a tennis court to play tennis.

I thought he was nuts.

But the day after, I took myself over to the tennis courts and hit bucket after bucket of balls over the net in anger. The high school tennis coach came over after two and a half hours and asked me if I would like lessons, noting that I appeared to be 'fit'.

And so it began. Through wheelchair tennis as an outlet, I met others in wheelchairs and my healing began.

I certainly never thought that I would learn to pray while rolling myself around in a wheelchair. That was never in my life plans. It's not that much of a change. I still pray about the same issues - career, relationships and faith.

And I thank God that someone like Bob cared enough to extend his hand to me.

My wheelchair - a thing of beauty

My kitchen ceiling is missing - partially. Due to leaks from the plumbing upstairs, the ceiling was stained and a contractor came to replace it. However, while he was doing the work he discovered more leaks. So he couldn't put the ceiling back up.
I never realized how much was hidden under that ceiling - wooden beams, pipes, insulation - until I lived with the innards of the house exposed for several days.

At first I thought it was really ugly. Some friends came over and pointed at the exposed plumbing and beams asking "When is that going to be fixed?" The first few days I was almost apologetic, saying it would be fixed soon. But in the last few days, I've begun to say to people that it reminds me of living in a rustic cabin in the woods - a cabin you just never quite finished working on. Barebones.

And I realize that it's never going to be "fixed" because the pipes and beams are not going away - they're just covered by the ceiling. Whether they're aesthetically pleasing to look at or not, they need to be there.

I realized that this is the same process I went through while adjusting to using a wheelchair. At first I thought all wheelchairs were ugly. I was very unhappy and scared about having to use a wheelchair and being "stuck" in one. Then I found freedom through the mobility it offered and my wheelchair started looking pretty good to me. I started adding accessories to it to make it even more useful - and personalized it. The day I was eager to add a net underneath it because all of my other female wheelchair friends had one was the day I realized that was no different than wanting a pocketbook someone else had that I admired! And I realized that my initial feelings toward my wheelchair had changed.

My wheelchair had become a thing of beauty.

Adapting to a disability?

Here's a link to Active Living Magazine and an article about an amputee's psychological journey toward adjustment

Temporary and Permanent?

For God so loved the world, that he gave his ONLY BEGOTTEN Son, that whosoever believeth in him should not perish, but have everlasting life. (John 3:16)

Last night, I spoke with someone grieving over being told that her disability would never go away.

"The doctors told me it's permanent," she said. "And I can stand the idea of it being temporary, but not permanent."

I understood how she felt. We go through an adjustment process when we acquire a disability. Some people get depressed. Others get angry. Or both.

I gave her time to talk about how she felt because I know she needed that. Then I asked her if it would be helpful to her if I told her how I came to terms with my disability. I explained it would take time, but that I had developed a perspective that helped on days when, early on, I had those same feelings.*

She said yes. So I told her what my realization was. " All disabilities are temporary. Because life on earth is temporary."

There was a silence. "Are you one of those God people?" she asked.

I laughed. "I'm a Catholic. I believe in God."

Another silence. "I do too. Hadn't thought of it that way." Then a sigh. "I guess someone can stand something if it's temporary."

I told her to try that, until knowing that it was "permanent" was not as scary.

Living with her disability over time will calm her down. Most people are just so frightened and the people around them unwittingly add to it. It has a ripple effect.

We are not here forever. Whether we want to admit it or not, we're mortal. So nothing is permanent.







*Over time, I adjusted to having a disability and , in my experience, many people live with disabilities without being in emotional pain over it - this is usually an initial reaction added to by society's fear of "being disabled". We do, however, get bummed by the lack of inclusion and access in society. There is a great cartoon with a picture of a wheelchair user at the bottom of a flight of steps looking up who says " Now I'm depressed."