How’s that Working for You?

Posted: May 14, 2008 in Disability Deliberations


By Mark E. Smith

How have you chosen to view your disability, and how’s that working for you?

This provocative question came to mind recently when I spoke with a family facing disability. The wife was in her 50s, with multiple sclerosis, and she shared with me that her progressive condition has single-handedly destroyed her life. “M.S. has robbed me,” she said. “And, life only gets worse every day. I have nothing to look forward to but more pain and anguish. For every new level of multiple sclerosis, there’s another devil in my life. The best is over for me.”

Now, most wouldn’t question the woman’s sentiments. After all, she most likely went from dreaming of a carefree retirement like most her age, to facing the daily challenges of living with progressive disability – that’s a tough tact in life to take.

Yet, as I found myself wondering, was her condition truly so devastating, can life truly be so bad?

Maybe, or maybe not. From my own life and career, I’ve learned that how disability impacts our lives is often subjective, based less on the physical realities of disability, and more influenced by our own perspectives. I’ve known those who let arguably minor limitations destroy their lives, and I’ve known those with profound disabilities who’ve achieved remarkable success. Personal perspective, it proves, is a decisive factor in living with disability: Do we see ourselves as victims or victors?

Along with the woman were her husband of thirty years, and their two college-age daughters – and they were among the most supportive family that I’ve ever met. The husband told me of remodeling their home to maximize his wife’s independence, and he told me how the daughters took turns coming over each day to help their mom with any personal care that she couldn’t accomplish any longer on her own, that many from their church happily helped drive her on errands and to appointments, that they were fortunate to have great health insurance, with access to the best specialist on the East Coast.

Still, every time that the husband spoke positively, the wife spoke negatively:

“The girls have been a tremendous blessing in facing these family challenges,” he said.

“It’s all the little aspects of M.S. that make me so angry, like not being able to tie my shoes,” she said.

“We’re lucky that our insurance is so good that we haven’t had to use our savings like others,” he said.

“If I have to see one more stupid doctor because of this disease, I’m going to choke someone,” she said.

“We’re taking each day as it comes, and trusting that whatever comes our way, we can handle it as a family,” he said.

“I just want to go back to the way things were before all of this,” she said.

In a world of victims and victors, clearly this family fit both roles, where the wife saddled herself with every burden of disability that she could fathom, while the rest of the family strove to move forward with levels of acceptance and optimism.

The context of my conversation with the family was one of acquaintance and brevity, so I wasn’t in a position to ask the most pertinent question to the wife: How’s holding on to resentment toward your disability – toward what you’ve seemingly lost – improving your life? How’s that working for you?

In fact, I had the chance to ask that very question of a friend of mine not too long ago. My friend was paralyzed at age 16 in an auto accident, and 20 years later, he explained to me one evening that not a day goes by when he doesn’t wish with all of his might to turn back the clock, to return to the moments before the accident, to change everything. He went on with great candor, explaining that he regrets being a father and a husband who uses a wheelchair, that he wants to be himself as he once was: Able-bodied.

“How’s that outlook working for you?” I asked.

“What outlook?” he asked.

“The one where you’re holding on so tightly to what you believe you’ve lost in the past, that you’re refusing to let yourself move forward and live entirely in the present,” I said. “How is regretting that you can’t walk bettering your life in the present as a father and husband?”

Of course, it’s a tough question to answer, but it’s a fundamental question for any of us struggling to move our lives forward with disability – that is, if we hold on to the past, focusing on what we’ve seemingly lost, how does that help us in the present?

It doesn’t. No one can say, “I swear to you, the more that I resent life and despise this body that’s betrayed me with disability, the better my life gets.” I mean, do we really think that the woman with multiple sclerosis is fostering her family’s emotional health in their challenging time with such a bleak outlook? Do we really think that my friend is being the best father and husband that he can be by clinging to the supposed regrets of what he could be if only he could walk?

Absolutely not. Such people who hold on to the past, who resent their disabilities, do little beyond sabotaging ever finding any successes and happiness in life. At some point, we must simply live in the present if we’re going to succeed, where we must sincerely play the hand we were dealt to the fullest, with a sense of purpose to our lives, rather than resentment. There’s nothing that we can change about the past, and holding on to it makes our lives futile. However, we certainly can control the present with our choices and perspectives, greatly dictating our own successes in life.

Interestingly, even the quest for a cure can serve as an empowering mindset when it comes to living with disabilities and accepting one’s situation. I know, it may seem like a contradiction, that anyone seeking a cure – medicinal or miraculous – isn’t accepting one’s situation, but is merely wishing for a way out. Yet, some of those seeking cures are among the most positive, inspired people who you’ll ever meet. After all, literally pursuing a cure through a therapy regimen or religious journey requires absolute optimism, practicing the belief that life will only improve through hard work and faith – that’s a powerful outlook. In fact, a very spiritual young man going through rehab due to a head injury shared with me his belief that “the Lord helps those who help themselves.” Regardless of one’s religious inclination, there’s absolute truth in the fact that our lives only improve when we help ourselves – and that requires a positive outlook.

Now, some say that it’s impossible not to resent disability, that it’s such a profound life change that no one can just get over it. And, they’re right to a point – disability is a major life change that takes time to address, understand, work-through, and accept. However, anyone refusing to move forward toward disability acceptance – read that, self-acceptance – is on a self-defeating course. Again, we don’t see successful people with disabilities – who have healthy relationships, rewarding careers, and empowered lives – who resent their disabilities. It’s quite clear that if one’s going to lead an all-encompassing, successful life with disability, one has to move beyond hopelessly clinging to resentment and bitterness, and assume personal responsibility for building a positive life path.

I have to wonder, wouldn’t it be terrific if the woman with multiple sclerosis, and my friend with a spinal cord injury, both found the perspective – took the responsibility – to turn a new page in their disability experience, to shake their self-imposed life sentences, pronouncing the affirmative that while disability happened to me, I’m going to also make life work for me? Wouldn’t it be wonderful if the woman demonstrated to her daughters that nothing is taken from us without enriching our lives in other areas, as with the kindness others have offered as a result of her multiple sclerosis? And, wouldn’t it be great if my friend with a spinal cord injury sought to be the best father and husband possible, irregardless of disability, by teaching his son that it’s not who we were, but who we are that’s important? And, wouldn’t it be great if each of us followed these simple principals, where we don’t let disability to defeat is, but we let it elevate us?

The fact is, disability isn’t what we chose, and it may not be easy. However, disability is what we have – and, if we’re going to succeed in life, we need to let go of what we’ve seemingly lost in our pasts, and get on with our lives, where disability doesn’t usher in the worst, but brings out our best. After, all, life doesn’t give us challenges so that we sink with our pasts; rather, life gives us opportunities so that we rise in our futures. And, for those of us who choose to work toward a victorious life with disability – fending off a victim mentality, maintaining positive perspectives – disability is an opportunity to not only elevate our own lives, but also to elevate the lives of others around us, where disability experience ultimately becomes a rewarding experience.

Comments
  1. Sean says:

    Brilliant.

  2. Joni says:

    Yes, a great take on a more crucial issue than many even think.

  3. Jeff says:

    Your comments are right on, Mark! The true essence of life isn’t what happens to us along the way, but how we respond to our daily trials and blessings.

  4. Travis says:

    You have just said in a few short paragraphs, what I have been trying to get across to everyone I have ever met in the last 30 years of my existance… I mean this in the most humble and sincere way, “You are my hero”… Thanks man!!!

  5. rollbob says:

    Walking or rolling, Life is what ‘you’ make of it.
    Some stand in line, “I” sit, some come in a room looking for a seat, “I” brought my own, everything “I” want is on the ‘top shelf”, I’m that kind of person – everything top shelf.
    So if life has got you down, Roll over it !
    There are many more worse then you/I.
    Like to be in China or Myanmar ?

  6. natty says:

    natty says : I absolutely agree with this !

  7. ggilbert579 says:

    I would like a response from other MS patient’s. I’ve noticed since I’ve had MS 2hen I move 59 a different state or neighborhood, or even just recently got another power chair my MS get’s a little worse. My MS is only in my legs. Is that normal an should be happening like that?

    Thank you
    1/21/2015

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