About 9 years ago my Mother and I were sitting in church when she told me about a friend of hers whose husband had just been diagnosed with ALS. At the time I had no idea what that meant other than my mother said, “He will die from it, it’s incurable.” This friends name is John Gregoire, and below is his story, written by him, and what he has learned by living with an incurable disease that steals so many lives...
On December 17th of 2007, I was diagnosed with ALS, an incurable neurological disease. I was given 18 months to live. The Doctor told us “Get your affairs in order, max out your credit cards and travel.” This year, we will celebrate my 9th Christmas since hearing those words.
In the ice covered parking lot of St. Elizabeth’s Hospital, Linda stomped her Buster Brown sized foot, looked me in the eye and said, “No! How dare he speak those words over you! Only God knows how long you will live and THAT man is NOT God.” At that moment, we both recognized what would become the overarching theme of our lives - Hope.
With the holiday so near we didn’t share the news with anyone. We wanted that Christmas left unburdened by such a dire prognosis. You see, Christmas was always special in our house - a legacy passed down from my Dad. My brother and I grew up believing in Santa because we had empirical evidence that he had visited our house.
From the sooty footprints on our chimney hearth to the cookie crumbs left on the plate, it was all there. And my Dad’s smile, laughter, the twinkle in his eye and ebullient excitement always made Christmas memorable. Linda and I carried on the tradition with our own embellishments.
Christmas Eve, we always heard sleigh bells in the distance and, if you really listened well, you could hear a deep “Ho, Ho, ho!”. (A cassette tape I made in a small home studio and a boom box made the magic for years.) Every Christmas morning meant cinnamon rolls and a special gift on the dining room table wrapped in white tissue paper with a red ribbon. And the best part – a note from Santa.
The Christmas of 2007, although bittersweet for Linda and me, played out like previous years. Even though our boys were now 19 and 11, there was still an air of Christmas magic around. I guess that’s why, even though the calendar “anniversary” of my diagnosis is December 17th, it’s always Christmas that drives it home for us. Every Christmas marks another year of beating the odds. Another year of Hope.
As we approached the first anniversary of my diagnosis I was still walking. Walking with a limp and an occasional stumble, but walking nonetheless. I was still talking too. My speech would become slurred by day’s end but I was speaking. Since the diagnosing Doctor had said I’d be in a wheelchair within six months, it was obvious to us that the seed of hope we planted in Boston a year earlier was beginning to blossom.
The following Summer brought a trip to Hilton Head Island for an alternative treatment. We cashed in frequent flyer miles for the trip down and, with some support from our Pastor, scraped together enough money to stay in a seedy motel for most of the six-week stay. We were definitely stepping out in faith and leaning on Hope.
I arrived on a Sunday and by Tuesday I was already homesick. I had heard that a local church held a $5 spaghetti dinner on Wednesday so, walking stick and $5 in hand, went to Central Church, where once more, Hope showed up. By the time I left the evening service that followed the dinner, I had plans to move to a beach front condo, an invitation to attend a Bible study and new friends. I often tell people that I have no evidence that the treatment worked but that doesn’t matter. The Hope, friendships, and support were the best medicine I could get.
By the Spring of 2009, I was still walking but much less steady on my feet. My speech was really becoming slurred. Linda and our sons could understand me often but I was relying on a text to speech app on my iPod touch to order fast food and when checking out at stores. That year our local Bible study blessed us with a trip to Redding, CA to stay with some friends attending a school of ministry. Near the end of our week’s stay, Linda came home with a precocious smile and said, “I got you something.” She showed me a piece of metal, shaped like a bean with the word “HOPE” etched into it. Then she said “Carry this with you everywhere. When people hear the word Hope, I want them to think of you.”
Since that day, we’ve collected and been gifted many tokens, signs, and knickknacks with Hope on them. We’ve even started a Facebook page called “Hope” with hundreds of photos from around the world - from Cairo, Egypt to Singapore and beyond - with the words HOPE JG (my initials) scratched in beach sand or on a handwritten sign. We started a foundation named The Hope-JG Foundation to build an ALS Residence in Maine and to support ALS families in more practical ways. We even adopted a puppy named Hope - and she really came with that name.
As I sit here in the glow of our Christmas tree adorned with Hope ornaments friends have given to us over the past 9 years, another Christmas is upon us with a New Year a week away. I’m thankful to so many for keeping me healthy (relatively speaking), mobile and with the ability to communicate. I’m particularly thankful to Linda, my caregiver, my advocate, my heart and soul, my partner and my defender (even when I don’t deserve it). Since the day she stomped her tiny foot down on the ice in Boston she’s kept Hope alive in our house.
In these days when we all see so much turmoil and strife in our country and around the world, please accept this Christmas/New Years wish from a “dying” man: May you hold on to Hope throughout the year. Not hope as we so often use it, as something to wish for or even something that’s a port of last resort when the chips are down. The Hope Linda has taught me is the resolute expectation of something good.
Hope. Try it on, share it with those closest to you and then spread it around.
Merry Christmas and a Happy New Year, friend.
- John Gregoire -
To learn more about John, Linda, and the Hope-JG Foundation please visit their website: http://www.hope-jg.org/