Faith and disability

"VALENTE (to Ms. Betenbaugh): For a person of faith with a serious disability, what's the most painful thing for them?

MS. BETENBAUGH: The fact that other people assume that it's related to lack of faith. If you only had enough faith you'd walk again, or you'd be healed if you could just believe enough or trust enough. "
via pbs.org

This PBS feature from 2001 contains interviews with patients at a rehab hospital who talk about their faith as it relates to acceptance of their disabilities. Although each person's response is different, the article does a good job of conveying the broad range of responses an individual can have after acquiring a disability.

It is important to point out, however, that making broad generalizations about how any person will respond can be counterproductive.

"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?

Prayer request

In the spirit of the quote below, I'd like to share with permission an email exchange I've had with an amputee. Let's call him Tom.

Tom lost his legs as a result of an accident. He is married and has four children who are all under ten years of age. At the time of his accident, his employer let him go, leaving him without employment. Since Tom worked as an independent contractor, he paid his own medical insurance and could not afford to keep up the premiums so his policy lapsed.

By the time Tom emailed me, he was enraged, frightened and ashamed by all of this. Moreover, he was attempting to do rehab so that he could learn to walk on prosthetic legs.

Having been through some of these issues myself, I tried to help him redirect his anger into energy and found some wonderful people and resources for him so that his immediate needs and the needs of his family could be met.

Today Tom is doing much better. He has successfully found employment and received help with his medical bills. His children are well fed and clothed and warm.

He recently wrote me that it wasn't the loss of his legs that was the most difficult thing, but the financial, social and other consequences that ensued which affected his family.

He asked if I would ask my readers to pray for all of those dealing with these issues as a result of disability, including him.

I think that's a very good idea. Please pray for these folks.

On suffering - and being a believer

"In meeting suffering humanity, believers know that they are meeting Christ himself, whose Holy Face is the face of those who bear the endless crosses imposed on them by injustice, violence and selfishness."
Pope John Paul II


There is a mystery to suffering, one that can frighten us if we let it.

In fact some people run away from those who are suffering. They avoid them - intentionally or unintentionally. They may say they don't want to get involved, or rationalize their behavior in other ways.

But the bottom line is - they're scared. Or perhaps they're choosing to be selfish.

Why be afraid? Our faith tells us that suffering is part of life and, in fact, Christ took on suffering in human form to obtain our redemption. It is part of the faith life we have.

Selfishness, although common, is also inexplicable, considering how vulnerable we are as humans. Do we feel so immune from bad things happening to us, that we think it's okay to ignore those in need? What if we were the one who needed the help?

Maybe we don't think of it in those terms, but when we turn our backs on each other, we are making serious choices that affect others who need us.

Day after day I talk to people who are newly disabled who say the same thing: "I never thought it would happen to me."

Sadly, in my experience, it is not the disability itself which will cause them the most sorrow, but the way they are treated by some people. Most will adjust to the change in their body, but it is a far crueler thing to be treated as "less than". Being stared at will freak them out at first. They will be in shock when they realize that the invitations to social events stop from certain friends. They will hurt when they need help and other people are too busy.

And then there will be the joy that comes when others step up to the plate and act in a loving way. This will wash like water over the wounds, healing the sorrow . The newly disabled will learn to find their own joy in helping others again. For some, like myself, this will only be possible if others unselfishly help them with daily tasks. I pray that they find that help.

Hopefully, these newly disabled folks will learn to put human behavior in the right perspective- which is that we all are guilty of doing wrong at times and convict ourselves of that and learn from it. Such is the world in which Pope John Paul II wrote these words. He calls those of us who are believers to recognize that Christ's face is in those who carry crosses.

He calls on us to be there, whether we are disabled or not, for each other.