Three-and-half years ago, my brother-in-law was diagnosed with Amyotrophic lateral sclerosis (ALS) also known as Lou Gherig’s disease. ALS is a progressive, terminal neurological disease.
Believing that laughter is always the best medicine, we made a lot of jokes, including that I, his sister-in-law, was eventually going to kill him (my initials are ALS, Amy Lynn Schmidt).
Over the past three years, ALS has slowly robbed Chris of his ability to walk, feed himself and breathe independently, and yet he has managed to make the most of every day, even from his wheelchair – cruising along the Italian coast to celebrate his 25th wedding anniversary; fishing in Sunnyside with his two sons; and rolling up to the bar at his favorite watering hole to drink as much craft beer as my sister will allow. His mantra has been “do what you can do.” And he’s done more than most.
Recently, he woke up at 3 a.m. with a new symptom – severe pain in his chest. A lovely side effect of immobility is blood clots that travel from your legs to your lungs, causing a pulmonary embolism and making it even more difficult to breathe. So rather than spend the Thanksgiving holiday at home with family and friends, he spent that day and the next several in the hospital.
My sister ate quickly with the nearly 30 other family members that had gathered at her home to celebrate, while I prepared a plate (a little turkey, mashed potatoes and sausage stuffing) for her to take to the hospital for Chris. Later that evening, a few of us joined them in his room to watch football, share stories, and, well, just be together.
As we sat there, I was reminded of a story shared by Tembi Locke, a presenter at last month’s HealthInsight’s Annual Quality conference in Nevada. A patient advocate and caregiver for her husband, who battled a rare bone cancer for 10 years, Tembi gratefully recalled the ICU nurse who “looked the other way” as she snuck their daughter into her father’s hospital room for some quality father-daughter time.
When Mike, Chris’s night nurse came into the room to trade out his IV bag that was administering his pain medication, he also “looked the other way” – not saying a word about the four additional visitors, the plastic cups filled with wine, and the sometimes too boisterous laughter.
This holiday season, I am most grateful for Mike and all health care professionals like him, who know that sometimes it’s OK to look the other way. Those moments meant a lot to my family especially when we’re not sure how many more we’ll have.