LIVING LIFE WITH ALS
by Matt White (ALS Today: News from the Les Turner ALS Foundation: Spring 2006)
My journey with ALS started more than six years ago and like most people who have been given this diagnosis, I thought my journey would have ended before now. The first four years I did what most would call “lived withALS.” I worked as long as I could at a job that I loved, trying to make a valuable contribution. I traveled and spent time with family and friends, doing my favorite things, including playing golf at each of the top 10 courses in the United States. I created a charitable foundation, and with the generous support of so many colleagues and friends, helped raise more than $300,000 for ALS research. I spent time reading and praying, seeking greater faith, peace of mind, and courage to face the day when I would stop breathing and die. Imlived life like the end was nearing.
Ultimately, I gave up driving, golfing, walking, eating, and the independence of bathing and dressing myself. I left Chicago and moved to Florida to be near my parents in my final months. I felt good about my life and what I’d done in the recent years, and had no hesitations about my decision to let ALS take its natural course.
A few months before I retired and moved to Florida, I had a feeding tube inserted into my stomach. Chewing and swallowinghad become a time consuming chore, so the surgery provided a convenient way for me get necessary calories. When the feeding tube needed to be replaced, I went for tht outpatient procedure.
During this routine procedure, a freak accident occurred. As a result, I needed not only a new feeding tube, but also a tracheotomy and ventilator. The timing of these events and the ensuing life-saving measures taken by the hospital staff were a miraculous blessing for me, even though they went against my wishes to let ALS takes its natural course. Despite my initial misgivings and concerns, I have found that life on life support can be excellent.
It’s been two years since I came home from the hospital on the ventilator, and it seems that every week the quality of my life improves. I’m able to do nearly everything I want to do, limited only by my desire and my imagination. The ventilator is about the size of a toaster, and is just about as easy to operate. It runs on an eight hour batteryand straps to the back of my electric wheelchair that I operate by foot control. My days are filled with several routine measures, but also include exploring and enjoyment. Each morning and night, my caregiver helps maintain my lungs. A percussion vest first shakes loose any congestion, then an amazing machine wecall a “cough assist” extracts it by blowing my lungs to capacity and then collapsing to simulate a natural cough. These machines keep my lungs clear and healthy.
As my various muscles continue to weaken, we make adaptive changes to help improve my quality of life. I communicate with the help of a wireless laptop, and I remain on the move in anelectric wheelchair. With a slight movement of my head, the computer talks for me, reads to me, turns on and adjusts household appliances and electronics, does my typing, and keeps me totally connected with the world. If I want to enjoy the pool, I get into a homemade floating chair and if I want to go boating, I strap my wheelchair to a lift and drop in for a ride.
Most of my time is spent fishing, a passion that has easily replaced my love for golf. I can drift in any of the three nearby passes to the gulf, and fish for giant tarpon, snook, sharks, pompano, or any of the other dozens of species that come in and out in search of suitable breeding and hunting grounds. What began as a relaxing way to spend a day in the sun has become a daily obsession for me. I’ve designed and commissioned three fishing rods with motorized reels that I operate by pushing a button with my toe. Each rod is a different size and weight so I can fish everywhere for every kind of fish. Fortunately, Florida weather attracts family and friends from all areas of my life. It’s wonderful to have people visit that haven’t seen me in a few years. I don’t know quite what they expect, but I can tell by their reactions that I’m doing better than they thought I would be.
The best visitor I’ve ever had is Shartrina, an old high school friend. She’s become the love of my life, the woman of my dreams. Even though falling in love and getting married was never something I ever dreamed could happen at this point in my life, it’s happening. We’re getting married in May of this year.
Having ALS has changed me from a physical perspective only. This disease has not changed who I am—maybe it has even helped me become a better person. Now I find ways to enjoy myself without needing to use the physical strength that I once depended upon for my favorite hobbies. I’ve become more appreciative of all the special things our world and our lives have to offer. I’ve grown closer to God, closer to my friends, and closer to my family sincemy diagnosis. I have found many great ways to stay entertained and make contributions to the lives of others every day. I find that there aren’t enough hours in the day to do all that I want to do.
People in my situation need to understand that ALS does not have to be fatal. I hope that other people with ALS will understand they do not have to stop living life and doing what they enjoy. They should never allow ALS to stop them from trying something new. For me, I have found that there is life on life support, far beyond what I ever imagined.