A Tale of Migration

I awoke at 6 a.m. to the sound of an earnest warbler outside the window. He was telling a squirrel about his migration this winter. The owl hooted in derision.

It was too noisy to sleep, so I listened to the bird's travel tale. Here's what he said:

"It's not as glamorous as you think to travel
All wings and bird poop from the rear of the formation
Then, landing, vying for the twigs and worms.
Oh but to nest! you dream
When halfway there
After passing over bird feeders, left unused,
Because the others will not stop.
At times the landscape is a blur
Fatigue sets in
There is only rain, wind, cold and hail
No weather forecasts
Just the sky the earth
The call to fly north or south
Together.
And yet, little squirrel,
I miss it already
Being with the others.
Now is the time to sing of that
To celebrate the lessons learned.
Migration? It's part of the life cycle
The seasons pass as quickly
As the ground below."

All this to one who stores away nuts and twigs for the winter. I was glad I overheard, considering I've seen that squirrel dart between cars for amusement and I doubt he would appreciate a word of the bird's tale.

But who knows?

Sipping soup through a straw and other vulnerable moments

Even superheroes, no matter how powerful they are, have a vulnerable side. Superman had Kryptonite while the Hulk had major control issues, morphing into his green self at inopportune moments. It seems that we like to keep the most powerful characters we invent just a bit vulnerable to preserve their humanity. (I'm still waiting for a superhero who has to catheterize, but I bet he/she would really have to muster up some wild superpowers.)

We still have a love/hate affair with vulnerability. I see it a lot in my work with disabled people. We use fancy words like "socially inappropriate" when a young man with Down syndrome hugs someone. Why? Because we shy away from seeing vulnerability, whether it's physical, emotional or social.

It seems to embarrass us sometimes. When I sip soup through a straw because holding a spoon isn't a happening thing for me physically, eyes avert except for a five year old who announces that I'm "eating my soup wrong because I'm slurping and tapping the straw". We have an engaging conversation about how his grandfather taps his cigar and he tells me "Well he has just one lung" before his father whisks him away. Inappropriate. Too vulnerable.

And I picture, for a moment, a superhero whose hands won't hold a spoon. He could sip his soup through a straw by day as long as by night he donned his cape and flew over tall buildings. He'd have to compensate by having a dual nature that made up for his vulnerable side. Like Clark Kent is acceptable because we all know he can turn into Superman, the soup sipping superhero needs an alter ego.

I'm rather weary of buying into this scenario. There have been times over the years when I'd exit a soup sipping scenario only to find myself trying to do some superhuman feat. Usually things would not bode well, being a quad. There were private tumbles to earth as I alternated between the love/hate flip sides of the physical vulnerability my disability carries.

And I'm tired of doing that. I think my love/hate affair with vulnerability has ended. It's run its course. I can accept that I'm human and vulnerable. It's okay. I don't expect everyone else to be on board with me because we're surrounded by this sort of thing.

Human. DIsabled. Vulnerable. Perfectly acceptable in my imperfection.

How's that for a concept?

"Dying...or getting better..or growing up?"

tvs over at Title Varies Slightly writes a post about living with a disability as a child and the messages she received from children's books, school and those around her. Some of the boys, who had muscular dystrophy, died and from the books she read, she says:

" I thought that when I grew up, I’d be able to walk and use my hands easily and speak clearly, just like “regular” kids. You see, I had read Heidi, and at the end of the book her cousin Clara gets out of the wheelchair, and she can walk! And I had read The Secret Garden, and at the end of the book her cousin Colin gets out of the wheelchair, and he can walk!"

She describes her journey from seeing her choices as either dying or getting better - to growing up sitting down . Click above to read the post.

"Gethsemane and the Problem of Pain"

Over at Journeys of a Catholic Poster Girl, a post about faith, acceptance and our journey with Christ- by a twentysomething Catholic. My newest addition to the Catholic blogroll.

"You're the clumsiest paraplegic I ever met"...

....he said, leaning down and handing me the item I just dropped.

We met, eye to eye. He, the paraplegic, was in his titanium wheelchair and I, the quadriplegic, was in my titanium wheelchair. And, in that moment, I had to make the decision again, the one that I make over and over again since my spinal cord injury worsened a few years ago.

Do I tell the truth and say I'm a quad? Or do I laugh my hand and arm impairment off as clumsiness?

The decision is different depending on the context. Some people freak if I tell them I'm a quad. Others listen quietly. Some hotly deny it's permanent or insist that it's a matter of willpower for me to be a paraplegic, even walk again.

But this guy is another person with a disability, so I decide to tell the truth.

"I'm a quad," I say.

"I know. My best friend's a quad," he replied. "So what the heck - want me to put that on the counter for you?" And he took my items and put them on the counter at the wheelchair tennis tournament. When he asked my level, he whistled. "You do great."

"I'm a jock," I replied. "I muscle through everything. But I'm clumsy-"

"Yeah, a real clumsy para," he said, winking at me. "But you could look at it this way. Maybe you'd be better off being a really graceful quad."

Now, in a fairy tale, that would be the end of it. From this incident six months ago I'd accept that I'm a quad and take that as a compliment from a Paraplegic Prince and move on.

But that's not what happened. On Friday, Meredith comes over and I say something about my "clumsiness". She looks me in the eye and says "You're not clumsy. You're a quadriplegic." I roll around a bit, mulling that over. Then she repeats it. (It can really put a kink in denial having someone around who has a PhD in Sociology.)

"OK, OK," I say.

She rolls her eyes. I can understand that. She has the disadvantage of not having a wheelchair to roll around in.

"OK, I won't say that I'm clumsy anymore," I say.

"Good. Because you're not clumsy. You're a -"

"Quadriplegic," I say. "Incomplete. And I might get function back."

She rolls her eyes.

"Or not. It's not like I'm sitting around waiting for that to happen," I say.

But after she leaves, I look at the pictures of myself from my ski trip back in 2001. I can see the difference, feel the difference. My fingers don't move. My wrists don't move. Everything below my elbows is like a trout - I can slap my arms around, train them to work from the elbows, like synchronized swimmers trying to pull off a trick. And there is a mourning and grieving that is still going on.

And the questions remain every time I try to do something I used to. Can I ski? I don't know - we didn't have enough snow on the trip to try. Can I cook? Not yet. Can I turn a page? No. Can I get in and out of bed? Thankfully, yes, with the right equipment.

In fact, I have alot of function that I take for granted that other people do not have. And I don't deny being a quad because I think being a quad makes me inferior. It's because I don't want to be any more dependent than I have to be. My life has become like a ballet, where people dance in and out, helping here, helping there with things that need doing and trying not to trip over each other or me as I try to work and live a life. And I want to tell them all to go home, get their own show. Go pirouette over there!

But I need the help. So there's this delicate balance between accepting help and accepting the limits of my disablity as it now is and it's different than it was a few years ago. Thankfully it won't change again. That's the good news. But the bad news is that I'm done with the rehab and all of the "windows" and "time frames" and now the show must go on. Perhaps there will be more improvement. I'll continue to work toward that. But in the meantime, I have a choice to make.

Only I can decide. Will I be a clumsy paraplegic or a graceful quad?

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.