Sometimes it takes an enormous, unexpected wake-up call to learn to be thankful for the many things we take for granted. I received a series of those calls beginning two years ago this July when I discovered I had trouble picking up my feet when I walked. I was on vacation at my sister and brother-in-law’s farm in Kansas and I decided to take a jaunt. I loved walking on the farm and tried to do it every visit (In the photo at right, I’m walking with my mom, having a lovely chat). Only this time my feet didn’t want to cooperate. I look back at all that has happened in the time since then, and I realize if I’d known what was coming I might have stayed on the farm. It was the start of a long, sometimes dark road. Three months later I had spinal fusion surgery for severe scoliosis and missed four months of work. I still had trouble walking. The neurosurgeon eventually sent me to a neurologist. A year later, in November 2015, I was diagnosed with primary lateral sclerosis (PLS), on the continuum of ALS (Lou Gehrig’s Disease) but not considered fatal.
I thought my world had ended. No more running, hopping, skipping, no more zip lining, no more long walks in the neighborhood, no more aerobics. I have a chronic degenerative disease that leads to a wheelchair, limited use of hands, speech problems, swallowing difficulties, and even difficulty breathing.
I wallowed in a pity party of gargantuan proportion. Then in January of 2016, I received a diagnosis of ovarian cancer. I retired from my job and started chemotherapy. Suddenly a life lived with PLS didn’t seem so bad. It looked really good, in fact.
Seven months have passed since the cancer diagnosis. I’ve survived surgery and chemotherapy and started a biweekly maintenance drug program designed to stave off the progression of the disease. I also go to physical therapy twice a week to work on balance, gait, and muscle stretching and strength. I feel like I’m doing something to keep myself strong and mobile for as long as possible. I like that feeling.
It’s been two years since the physical symptoms ramped up enough for me to notice. My walking has not deteriorated. This is a very important fact, because sometimes ALS is misdiagnosed as PLS. ALS is, except in very rare instances (think Stephen Hawkings) fatal. Death comes within two to five years.
And it’s an awful death. The motor neurons in the brain die and no longer send messages to voluntary muscles to make them work. Patients lose the ability to walk, to use their hands, to speak, to swallow, and to breathe. They can’t eat because they choke on food and then liquids. They have to be ventilated in order to keep breathing. Eventually they suffer complete paralysis. Five-thousand new cases are diagnosed every year in the United States. Someone dies from ALS every ninety minutes. There’s no cure—yet.
I was ruminating on all this as the news broke that the $115 million raised from the 2014 ALS Ice Bucket Challenge in which 17,000 people posted videos on social media has resulted in the identification of a genetic driver that will help develop new targeted therapy for ALS. The media hailed it as a huge breakthrough and it is, but yet it is a tiny step that won’t help the thousands of people living (and dying) with the disease right now. The development of new drugs to treat diseases like this takes a very long time. Too long for a disease that kills in two to five years.
As I contemplate the challenges ALS patients and their families face, I’ve come to a place where I’m thankful I have PLS. I can live with it. Literally and figuratively. I get up each morning and I thank God for the ability to breathe without difficulty or pain. I thank God for the ability to eat solid food. I thank God that I can still walk with a cane, rather than using a walker or a wheelchair. I thank God I can type these words. I thank God I can still write. I read a touching article by an ALS patient recently that he “typed” by using his eyes. He had a tube to help him get nutrients into his body and he was ventilated to help him breathe. He was in his forties and trying to decide whether to die or to continue to pay astronomical medical bills that were forcing him into bankruptcy. I thank God for excellent insurance and outstanding medical care. I thank God I don’t have to make that choice.
I thank God I can laugh. I thank God I can still travel to see my daughter and my grandchildren.
I thank God period. Sometimes you think you’ve got it bad, but you only have to look left or right to see people who are struggling far more than you are. The ice bucket challenge is about to gear up for another round. I urge you to consider participating. Only ten percent of ALS cases are familial. The rest are spontaneous. Anyone can get this disease. Consider what you’re thankful for today and be sure to tell the people you love how much they mean to you. I thank God for you and all the readers of my books.
Today is the day the Lord has made. Rejoice and be glad in it.
As always, I love to receive comments from readers. I look forward to hearing from you.