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
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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.
Thank you so much for writing this Kelly. You are such an inspiration both to those fighting the fight and those who aren’t.
When my 25 year old daughter was diagnosed with adrenal cancer – something I had never heard of – in January 2015 on the same day my husband had a quadruple bypass I didn’t know which way to turn first so I did the only thing I could. I turned to God. He, and He alone got me through my daughters illness and death and my husbands recovery.
God bless you as you continue your fight. You, and many others, are in my prayers.
Thank you for your kind comments. It does seem to come in waves, doesn’t it. My husband had quadruple bypass in June. I don’t know how I would have gotten through it without knowing God was with me. Knowing my entire church family prayed for us was such a comfort. I’m so sorry for your loss and I pray for peace and renewed joy.
Thank you for sharing your story, Kelly. You are an inspiration. You have been through so much and remain positive. I’m dealing with autoimmune diseases and struggling to recover from surgery but am thankful for every bit of improvement. It isn’t always easy to be positive, as I’m sure you know. I’m thankful for you, Kelly, and for all the support you’ve given me in my writing and for all the hours of enjoyment you’ve given me through your wonderful books. I will continue to pray for you. God bless you!
Thanks,m Susan. I know exactly what you mean about the struggle to remain positive. We all have good and bad days. I’m glad my books can give you an escape and time of enjoyment. Hang in there! I’ll be praying for you as well.
Your words to me—God’s got this—-have helped to keep me focused!!
Hang in there, Eileen! Trying to focus on today and not borrow trouble from tomorrow is always a challenge for me!
Kelly, thanks for sharing your story. Whoa! I had no idea of everything you’ve been going through. You are such an inspiration to others. Yes, God will always be there; we have only to call on Him. Thank you for sharing your faith with us, too.
I’m thankful for you, Kelly, and eager to get to know you better. I’m looking forward to meeting you in person at he conference in August. I’ve been praying for you since I heard of your cancer diagnosis — and will continue to lift you (and your family) up to the Lord. God bless you!
Thanks DJ! I’m looking forward to meeting you as well. I just got back from buying a dress for the gala. That is such a challenge sometimes! Your prayers are greatly appreciated!
Kelly, thank you for sharing! You are one courageous lady! God has a plan for us but we sure don’t always like what it turns out to be! Thankfully, He gives us strength when we feel like life isn’t worth living! I so appreciate this blog! I have some severe back pain, due to displaced discs and scoliosis , at times it is from my hip to my toes BUT I have life, I can still travel, walk and play with my grandson! God is good. I take pain meds when needed and surgery may be in the future but for now I can smile and enjoy what I have! You are my hero! Keep the faith!
Thanks, Karla. Isn’t playing with our grandchildren the best? I’m headed to Virginia for my granddaughter’s third birthday in September and I can’t wait. Something wonderful to which I can look forward. I’ll keep you in my prayers for relief of pain and that God direct your medical team for when the time is right for surgery. Bless you!
How gracious of you to share your health struggles so transparently with us! Not only should most of us feel more grateful for our health, ALL of us should be more amazed at the quality books you write that enrich our lives, despite your treatments and discomforts . You’re a peach!
Thank you, Liz. I hope my stories give people a ton of enjoyment. Writing them is a great escape for me. Writing gives me such joy. I hope to write many more!
Thank you for sharing your story. My husband has Parkinson’s Disease and gets a little worse every day. The disease has similarities with ALS. Little by little he is losing the ability to do the everyday things. He’s played dobro and sung vocals with a Gospel Band for several years. Last night before he sang (I Won’t Have to Worry Anymore), he talked about God’s love for him and stated ‘I am blessed’. I’m the one grieving for him. Ask anyone who serves as caregiver; it is hard to watch one you love suffer and/or fade away. Positive attitudes such as yours are a great encouragement! God bless!
It is so hard for caregivers. My husband has taken on the groceries, the cooking, the litter box and making sure the trash gets out in addition to working full time. I know he worries, but he puts on a happy face. God is walking through this with you, Judy, every step of the way!
I love you, Kelly Irvin. I love your backbone and your strength and your willingness to forge ahead (and discover suddenly new priorities). I love your faith and your optimism, both of which surely had to struggle in those dark moments.
Most of all? I love your spirit and your honesty.
I’m proud to call you my friend.
Thank you, Peg. Love you too!
Thank you for sharing your journey, Kelly! Your light shines through your words. What an inspiration you are to many of us who know you! Count on prayers for strength to endure your treatments and physical therapy. God is good all the time, and all the time, God is great!!! Love and Hugs 💞
Thanks, Marcelle! Your prayers are greatly appreciated!
Thank you Kelli for letting me know a portion of what you have and are going through. Your courage and fortitude to keep writing in spite of your illness and circumstances is an inspiration to me. Have a wonderful time at ACFW conference. I wont be going this year…but know you will look beautiful in that new dress at the Gala! Enjoy.
Sorry I won’t see you in Nashville, Maritha. I hope our paths cross at the local meeting sometime soon. I did buy a new dress for the gala. Can’t wait to show it off (and hope I don’t gain any more weight before then LOL!).
Hi Kelly. Thanks for sharing with us about your health issues. Please know that I will be praying for you for strength and endurance . Thanks for sharing your knowledge about these two different types of disease. Love you Kelly.
Thanks, Shirley. Your prayers are greatly appreciated. Love you too!
Kelly,
In my examination of Christian writers and their website today (before leaving for my first the ACFW conference), I came across your blog. I should I say, God brought me to your website so that I could read your beautiful message of encouragement through trials. God bless you for sharing your story. I have added you to my prayer list and will make sure I seek out one of your books this weekend.
Thanks, Cheryl. Your prayers are deeply appreciated. Congratulations on the decision to go to Nashville. I’ll pray that the ACFW conference is a blessing to you. They are so fabulous (and can be a little overwhelming too). Take a deep breath and dive in!
I just read this and have to tell you, it came at a perfect time! After 1 1/2 years of gait problems, falling and all kinds of left leg issues, I was recently diagnosed with PLS. I am 62 years old and, was competing in a 1/2 marathon when I fell the first time almost 2 years ago. I have always been physically active and would take on any challenge. Recently, I have spent a lot of time thinking about what I can no longer do and wasting time with self pity! I really do have so much to be thankful for and probably just need to be reminded now and then just like this story has reminded me.
Thank you
So glad you found it helpful. It’s hard navigating such harsh changes. I still have days when I want to scream. I imagine everyone days. But we can be thankful for what we can still do. So many have much more difficult challenges.
Your article is a godsend.
A year ago, I walked every day, ran six miles every day, danced, actively played with my beautiful grandchildren. And all that is coming to an end.
I was just diagnosed with PLS at an ALS clinic. (For months, I thought I had ALS.) And now, every night, I take a short walk and think — if I can walk tonight, I will walk tomorrow morning. And that’s how I will conduct myself. Giving thanks for what I can do now. While still planning my later life with the help of my amazing, healthy children.
I am still depressed at the great losses in my life but also thankful for each day (and night) of mobility. I love mobility! I also love the moments of joy in my life. Thanks to your words, I will focus on the simple pleasures and my remaining abilities, instead of dwelling on loss.