On a bleak fall day in 2002, I received a diagnosis of ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease), with its prognosis of total paralysis and probable death in three to five years.
Though shocked, my strong faith helped me to accept my plight. I figured I had two choices: Become bitter, do nothing, and wait to die, or live life to the fullest.
The first wasn’t an option for me. The latter was going to require not focusing on the disease and its effects. So I chose instead to focus on others, thereby enabling myself to live with this disability and move forward.
Through our MDA ALS support group at the Washington University Center for Advanced Medicine in St. Louis, I discovered many opportunities to encourage others. One February, in honor of Valentine’s Day, I planned a “pampering night” for the group. Several friends volunteered to provide makeovers for the women and hand massages and foot washings for all, including the caregivers.
For those of us no longer able to reach our feet, the foot washings were especially popular! At any given time, there were several people soaking, while others were being scrubbed. Water was flying everywhere, as was contagious laughter! The reality of our disability behind us for the evening, it was a night of relaxation and fun.
Although there’s very little treatment for ALS, focusing on others is medicine for my soul.
First, it reminds me there are people in the world worse off than myself. Some members of our support group have fought the ALS battle for many years.
I’ll never forget complaining one night about not being able to turn over in bed. One of my ALS friends, totally immobile at this point, gently reminded me to be thankful I could lie in bed. Discomfort and pain kept him a prisoner in his wheelchair the entire day and often at night.
As I see group members facing their situations with dignity and grace, I realize I can do likewise.
One of the biggest benefits of focusing on others is that it gives me a safe haven for crying about the struggles of the disease and laughing in the face of terminal illness.
Despite the uncertainty of tomorrow, one person in our support group always offers comic relief. Any month that has a holiday is a reason for him to dress up in a costume. We’ve seen Santa, a caveman, the Easter bunny, a leprechaun and more.
His antics may not cure us, but they sure offer a respite from longing to be whole again.
There are many practical ways to focus on others, depending on your physical limitations. The easiest of these is to share a smile or hug. I try to be aware that my caregivers, family and friends also are dealing with sadness and uncertainty because of my disease. A kind word or smile might make someone’s day.
Another way to push forward and not become consumed by disability is to open your home and hearts to others. An ALS couple we met the day I was diagnosed helped calm our fears by inviting us into their home. At that visit they explained how they were coping, ways they adapted their house, where they purchased their wheelchair-accessible van, etc. Following their example, we’ve visited with many ALS couples in our home, at times providing a meal and at others, just offering a compassionate ear.
I spend much of my time writing cards and letters, hoping the receivers will be excited and encouraged by my words. A simple message can really brighten someone’s day.
For example, impressed with the care and detail one caregiver gives to his wife’s appearance, all the way down to lipstick and high-heeled shoes, I thought how appropriate it would be to send her a Barbie postcard (though I sensed her beauty was far deeper than her outward appearance). The next month at support group, with a pen rubberbanded to two fingers, she wrote, “Thank you for the Barbie card.”
Her gracious response confirmed that even a small thing like writing a card was well worth my time.
Phil, my husband of 28 years, has willingly accepted his additional assignment of domestic engineer, filling my former roles of chef, maid, shopper, decorator, organizer and comforter. He and my son are really good at creating laughter when they sense things are getting too serious.
Phil cares for all my personal hygiene, showering, dressing and helping to feed me, and actively participates in the support group. This doesn’t leave much time for himself.
His life is an inspiration for me to give back to others, because much has been given to me.
My mother also provides me with a wonderful example of how to focus on others. A humble, godly woman, youngest of 12 children born during the Depression, mother of five daughters, she always tried to instill in us that focusing on others will make our troubles seem lighter. Growing up, I watched this concept lived out daily in her life.
My mother is 73 years old now, her hands crippled with arthritis. Still, she comes over and helps with housework and cooking, which I can no longer do.
We live in a society in which everyone is extremely busy and has problems, and yet family and friends have made time for us. Many are praying, which provides assurance and strength. Several bring meals or help with cleaning house, yard work and house maintenance.
These selfless gifts make me keenly aware of the Lord’s provision each and every day.
Helen Keller said, “I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble.” It’s with this attitude that I focus on others.
Due to muscle atrophy, I’m no longer able to do many things, but I certainly can do some things, however small. With each kindness and deed, I long to make a difference and offer hope to those who are struggling with disability and disease.
In doing so, I receive the greater blessing and live!
Vicki Wolff, the recipient of the 2004 Missouri MDA Personal Achievement Award, is pursuing her love of writing by penning articles for her local MDA chapter and encouraging others through cards and letters.