Cheryl Carter New, an author in Inman, S.C., has had ALS for eight years, and sees herself as someone with a disability, not a fatal disease. She interviewed several people who’ve lived with ALS for seven to 15 years and found them a strong-willed group with some common characteristics.
|Cheryl Carter New
Those of us for whom ALS didn’t prove fatal in three to five years have the opportunity to look at the disease, and at our lives, in a new way. As we realize we’re becoming long-term ALS survivors, we develop characteristics that give our lives meaning and hope.
When we’re told we have this disease, that we’ll be facing severe disability and that we may only live a few more years, we can choose to give up or we can develop survival characteristics. The people I interviewed began looking for the psychological keys to survival immediately after diagnosis, and they learned as much as possible before serious debilitations began.
Based on my interviews, I’ve found long-term survivors of ALS share a few common characteristics — some that were always part of their characters, and some they’ve developed along the way.
Survivors draw emotional stability and mental strength from outside themselves
One man said the most important step in his survival was, "finding spiritual strength to accept the disease and learn what I can from the experience."
For some, strength comes from taking in nature’s awesome display of beauty. For others, the source is love given and received. For still others, it comes from spiritual or religious beliefs. In short, survivors believe in and are empowered by a power greater than themselves.
I sincerely asked God to take my life one night and not let me wake up the next morning, if was going to die of this damned disease. God woke me up and I knew living is what I was supposed to do. After that I did not stop living and start dying. I kept living my life, and kept planning my life years and years down the road as I normally did.
Survivors are universally stubborn skeptics when it comes to the "facts" about ALS
They seldom take what they’re told, especially about this disease, at face value. They make up their own minds based on their own reasoning.
As a result, survivors are diligent researchers, looking up, digging out, and tracking down facts and figures — information and data — to answer the questions created by their skepticism.
Survivors will try almost anything
Survivors use technology, medical procedures and treatments, dietary supplements, medications, devices, therapists, hospitals, medical centers and clinics, Chinese herbs, the Internet, e-mail and good music — whatever it takes to improve their sense of being in control. Nothing is out of bounds, and everything will at least be considered, though of course, skeptically.
Rather than being a matter of heroic effort, strong will or any other inspirational attitude, overcoming obstacles has simply been a practical matter because of my slow progression.
Survivors are problem solvers
They take each difficulty as it comes and devise a strategy to deal with it. They adapt. They improvise. They overcome.
When voice fails they use a speech synthesizer. When typing skills fail they use on-screen keyboard software and switches. When extremity movement fails they use eye movement — or a toe or an eyebrow — whatever they have.
We cannot yet cure ALS or prevent it or stop it, but modern management techniques and modern assistive technology now give us the possibility of surviving it with an active and satisfying life.
Survivors find a way to communicate, not just "yes" and "no" but opinions, observations, reactions and sentiments.
Survivors stay mentally active
They read books, magazines, newspapers and supermarket tabloids. They watch videos, DVDs, television news and reality TV. They listen to music CDs, audiobooks, radio and eight-track tapes.
Survivors have somebody they love and who loves them
My wife. I can’t even imagine what my life would be like right now without her. She lights up my life in ways she can’t even see.
The somebody is usually a parent or spouse, but may occasionally be a friend. Survivors know they have great value to another person. They feel it’s their responsibility to do what it takes to continue to live because someone needs them.
Survivors are relentlessly positive
They live in the now, realizing that they aren’t promised tomorrow. They’re thankful for the way they are today, because they know that many people have it much worse.
I want to live and I fight to live to be here to watch our son grow up. He is the miracle in our lives.
This doesn’t mean survivors have their heads in the sand or are in denial. They’ve made a deliberate and conscious decision to live on the sunny side and refuse to see themselves as objects of pity. They see themselves as useful members of their families and their communities.
I believe that a treatment will be found within three to five years, and that a cure will follow within five to 10 years. Our job is to stay afloat, in as good shape as possible, until help arrives.
Survivors allow people to help them
Skeptics and problem solvers tend to be fiercely independent, but long-term ALS survivors accept help from a wide variety of people.
Survivors are able to accept this help with grace and without bitterness, though this may be the most difficult of all the survival characteristics to master. When survivors learn to understand and accept their own value, they know that a simple thank-you is sufficiently valuable payment for a doer of good deeds.
Survivors help others
This is the flip side of allowing people to help them. It’s universally the wish of survivors to help other people.
They’ve learned the importance and rewards of saying a kind word and spreading the compliments around. They usually want to help others with ALS and their caregivers by sharing the lessons they’ve learned.
Survivors have a wicked sense of humor and never lose it
Asked, "What do you wish you had?" one survivor said, "I wish I had a nickel for every time an ALS ‘expert’ has told me I’m going to die."
Another man said that one of his most helpful devices is a bidet seat on the toilet. He went on to explain how the device cleans and dries at the touch of a switch, then dryly remarked, "My wife and I both appreciate ours."
So, a quick profile of an ALS survivor would show a wise-cracking, loving and loved, God-fearing, problem-solving, know-it-all who’s sickeningly positive about a condition that everybody else thinks is just awful.
The joys of surviving
Living with these characteristics keeps hope alive. It allows for the possibility of new discoveries and new delights, the knowledge that even ALS can open new doors in life.
You don’t know just how your disease will progress, how you and your family will adapt, what your tolerance for dependency will be, what your comfort level will be, what other medical problems might complicate things, what pastimes you’ll find to keep you entertained and even productive, what financial assistance, technology, help from friends, etc., will be available.
Another wise survivor said, "Don’t let anyone convince you that your hope is ‘false.’ Hope isn’t false, you either have it or you don’t."