The Hope-JG Foundation is a 501(c)3 Non-Profit corporation dedicated to helping families living with ALS and other neuromuscular diseases., We hope to inspire ALS families to live life to its fullest by: leveraging existing world class technology, supporting technical innovation and biomedical research.
Monday, December 18, 2017
Ten Christmases and Counting
December 17th, 2007
Ten years ago this December 17th Linda and i took a train from Portland to Boston to get the final word on a preliminary diagnosis given by a Neurologist in Maine. Ir had snowed the night before and the sun was bright In the frigid sky, creating postcard worthy scenes on the train ride.
The train was full of light hearted Christmas shoppers looking forward to a day of fun with friends and family. The train stopped somewhere in New Hampshire to de-ice the brakes and a spontaneous choir of Christmas carols started. Linda and I managed half hearted smiles – more for the people around us than out of real joy. No one else knew our different agenda for the day. No one except perhaps the Conductor. He knew me by face from my many business trips to Boston. The difference was on this trip I didn’t have my laptop case, Linda was with me – and I was walking with a cane. I’m sure he was accustomed to seeing families from Maine travel to one of Boston’s many world class hospitals for treatment or a consult. He was particularly attentive and accommodating on this trip.
We got the diagnosis confirmation from the Specialist at St. Elizabeth’s In a fairly dispassionate and matter of fact way. Delivered in a deadpan, almost casual style, the doctor said “Its definitely ALS. Unfortunately, it’s Bulbar Onset, which is the most aggressive form. You probably have 18 to 24 months. Max out your credit cards, get you affairs in order and do the things you’ve always wanted to do. And DON’T try any alternative treatments. Any questions?.”
Before we knew it, we found ourselves on the sidewalk outside the hospital entrance. It was then and there, in that moment when we could have dissolved into tears of despair, where all 63 inches of my beautiful bride stood firmly between me and the forces of hell (and it would be the first time of many over the next decade). She stomped her foot on the frozen ground and shouted “No! That man doesn’t know what will happen to you! Only .God knows!” From that day to today, we’ve never accepted negative or pessimistic words from any man or woman
There are far too many stories to tell in less than a decent sized book. Stories of legitimate miracles. Stories of despair, frustration, laughter, joy and anger. (In spite of my public persona, I’m no peach to live with.) But most of all, we have stories of Hope. Not the watered down version of Hope we all often use. The “I hope I get a raise.” or “I hope I win the lottery.” The Hope we hold close comes from the Bible. Hope is an expectation of good things to come.
Hope has become our personal mantra, in large part thanks to Linda. Except for infrequent hotel stays, she hasn’t slept in a bed in over four years. And it’s not a sleep sofa. She sleeps on the sofa cushions near my recliner where I sleep. She probably hasn’t had a full night’s sleep in over seven years. She sleeps with one eye open in case I need a urinal or if my Trilogy alarms. It may be the cruelest part of ALS that caregiver spouses are on call 24/7. Even with the help we get, there’s always something she can find to do. Yet, she carries Hope with her like sword everywhere.
Caregiving spouses like Linda, literally have the weight of the world on their shoulders. Linda has a lavender tool kit I bought her a few Christmas’s ago. With that kit and some help from YouTube she’s repaired toilets, faucets, made car repairs ad more – all things I should be doing. And Hope is in her tool kit.
So if you have friends battling an incurable Disease, here’s what you can do: Take care of the Caregiver.
Help can take a variety of forms ALS is a particularly isolating disease for Caregivers. Linda and I used to chat for hours. I haven’t spoken without typing first, for seven years. Small Talk is tough when the spontaneity is losth. A phone call to just chat or let the Caregiver just talk, can be priceless. Offer help organizing a closet, or papers The key is, be prepared to let them set the agenda. Come with Ideas but don’t add to the daily stress by dictating your availability. Be flexible.
Yes, this year will be my tenth Christmas since Linda and I heard that doctor tell us I had, at best, two years to live. We’ve been blessed for sure. We’re also keenly aware of the constant cadence of time as we see posts, even today on social media, that ALS has taken another precious soul. Take heart my friends. Hope is real. Hope is yours. There is always Hope.
Ten years ago, eight days before my first Christmas with ALS, Linda stepped between me and the forces of hell – and like so many other Caregiving spouses, she’s never stepped away. If you know a Caregiver, give them a call just to chat or listen. Better yet, arrange a time for a brief visit…and give them a hug.
Merry Christmas to the love of my life and Caregivers everywhere
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