(Note: It has taken me a long time to be ready to write this one. And while it’s not directly related to diabetes, it is [isn’t everything in some way?] I feel it’s a story worth sharing. So I’m hoping you’ll do just that. Michael’s dad showed such power, determination and focus. Imagine if his story could help the world do just that? So read and I hope: share).(And I also want to note that Mike’s wife Elly gave this her blessing).
How much do you have in you? The answer can be basic (“I think I can do 20 more minutes on the elliptical.” “I know I can work until at least 9 tonight before I crash.” “I can cook dinner tonight if I can order take out tomorrow. I promise.”) But what about in a more profound way? How deep can you dig for what you really want and need?
We all face challenges in life. And while one person may weigh theirs against another’s, really: the challenges we face are distinctly ours. And so, too, are our lives and our dreams. So what to one person may seem like nothing might just be to another everything.
But I witnessed a challenge this past year that may very well have changed my outlook on life. At the very least, it moved me, impacted me and yes, challenged me to dig deeper, care more and yes, be more determined to get to where I need to get in life.
It all took place over the spring, summer and fall of this past year, as we planned – and then carried out – my eldest daughter’s wedding. It came to its peak at that wedding, but it’s continuing on to this day and beyond. Allow me to share.
We were deep into wedding planning late last winter when something shocking happened: my daughter’s soon-to-be father in law Mike, a retired school administrator who still coached a few high school teams; an amazing golfer who taught his son (much to my husband’s delight – one of the main points of his speech at the wedding was that we finally had a single digit handicap in the family), an athlete all around (a runner, soccer player and a basketball player himself), and a sports fan par none, was diagnosed with ALS (Amyotrophic lateral sclerosis). You probably know it as Lou Gehrig’s disease. I’ve known people distantly with it, but I’d never experienced it up close. So when Mike and his amazing wife Elly started talking about how this might impact the wedding, I kind of shook it off. After all: the wedding was six months away. Surely he had time to enjoy it all and hold onto his heath well past that time.
What did I know? ALS is relentless. It was only a few months before Mike was relying on a CPAP ventilator to breathe and a wheelchair to get around. By fall, he and Elly were working with Hospice – theirs in New York and ours here in Massachusetts (how lucky are we that a wedding guest and dear friend of ours happens to run the Hospice here in our town?) – to make sure all was in order for him to be comfortable, happy and yes, completely present at the wedding. I was glad they were taking steps to make him comfortable, but deep down I thought, “It’s going to be fine.” I was busy doing things like seating arrangements and final gown fittings. Little details. The ones I thought mattered most.
Then wedding week came. Mike and Elly arrived in our town a day early so they could settle in and so Mike would have time to recover from the long car ride. He made it to the rehearsal and enjoyed the night. But I could tell it was hard for him. I’d not seen him in handful of weeks, and it was clear ALS had been messing with him. Big time. But still – he did well that evening.
The wedding day came and from the start, it was clear this was going to be a special day; that special forces were at work. Despite a pouring, cold, miserable rain the entire day and night before and a forecast for more, the clouds quite literally parted and presented us with a bluebird day; warm enough for the outdoor ceremony to be comfortable; some puffy clouds floating by from time to time to give the photographer a better backdrop. We did photos before the ceremony, and Mike and Elly where there, Mike in his favorite hat, sitting in his wheelchair and smiling. I was so happy for him. He was there.
Then it came time for the ceremony. I was behind Mike and Elly (and best man Chris who would push Mike’s wheelchair down the aisle so Elly could walk beside him). They went out ahead of me, and stopped at the back of the aisle. Quietly, with determination, Elly reached down and pulled Mike’s CPAP Ventilator off and then nodded at Chris to push. It was clear to me what was happening: Mike was putting aside his physical comfort to be completely present at the ceremony. As he and Elly moved toward the front, he raised his frail arm and gave a determined thumbs up. The entire wedding erupted in cheers. It was an incredible moment. I wiped my tears, got back to smiling and walked down after them, taking a seat next to them at the front.
Through the entire ceremony, I could see from my vantage point that Mike worked hard to breathe on his own. Every breath was like a victory; no CPAP mask was coming between him and the profound happiness his son and only child was experiencing just in front of him. Once the ceremony was over he went back up the aisle and I think every single one of the 200-plus people there felt an unexplainable soaring of their spirit. Mike gave a thumb’s up again, letting everyone know he was fine.
He put the CPAP back on and went about being part of it all. Surrounded by family and friends (and new family and friends), he listened to the toasts, watched his son dance with his new bride and then with his mom, savored a milk shake the reception folks had made him (knowing he could not eat food easily, I’d clued them in and they produced one. How kind!)
The smile on Mike’s face that night was one of the loveliest things at the entire wedding. Later – not at the end of the night but close to it, Mike said his goodbyes. His favorite hat on his head, he left for his car being pushed by Elly but surrounded by dozens of friends and family. It almost felt like he was being carried out with their joy. He’d done it. He reached his goal of not letting ALS rob him of enjoying every moment of his son’s wedding day.
And now comes the hard part. Mike and Elly headed back to their hotel. What they talked about then is private to them, but this I know: They were smiling. They were happy. Mike was marinated in love and happiness; Elly had been boosted by so much support all around her. Mike had to have been smiling as he closed his eyes; seeing his son marry a young woman he both loved and admired; getting to catch up with siblings, cousins and friends from far and wide whom he’d not seen in a while. Like the perfect weather that day, he’d had a perfect time.
I like to think that as he closed his eyes, he felt pride. It had not been easy for him to do this – not just to make it through that day but also to make it to that day. I like to think that he felt comfortable seeing and knowing his son (and Elly too) had just legally and spiritually joined an added family. I like to think that he knew that he’d set an example for so many. I like to think that he was overflowing with joy. Because that night after that amazing day, Mike closed his eyes and never opened them again.
So profoundly sad and yet so profoundly beautiful. And spiritual. As I reflected on it that day, that week of the services and to this day, I realized this: Mike knew that his last breath was coming. And what he did with that knowledge is what is profound: He set about choosing what matters to him most and then used every single breath – up to his very last – to make what mattered to him happen. For him, what mattered was being there for his son and new daughter in law that day; to be a positive part of that day despite the sadness that it would have been easy to let seep in. To bring joy and pride and determination to that day instead of sorrow. And he did it. And that took courage, drive, guts and pure will; a determination that won out over nature and even ALS. Remarkable.
Which brings me to this: We all are, every day and every minute, taking in one of our last breaths. After all, the reality of humanity is we all have an end. True – most of us don’t know when that last breath is coming and here’s to hoping most of us are a long, long time away from there, but it’s there. So I have to ask myself:
What I am doing with my last breath? How I am I digging deep and making something real, against even the forces of nature? Am I brave enough? Am I determined enough? Am I focused enough?
Mike’s dad’s example, I believe, calls on me (and all of us) to ask ourselves just that. And listen: I don’t think what I do with those breaths has to be as profound as what Mike pulled off. But … there is more I can do with my life; more in me I can dig down to and use to change something for the better. I call on you, in honor of Mike, to do the same. Forgive a perceived enemy even if it makes you uncomfortable. Get that GED. Clean the attic. Help out a friend. Fundraise to cure something you want cured. Raise your hand – just like Mike’s thumb’s up – and offer to be called on.
We’ve lost Mike to this world. Our family will never get to share the joy of seeing him be a grandparent (and teach those kids to golf almost from birth). Elly is working hard to build her life without Mike by her side. The kids had to start their married life in the most challenging of weeks and have done an amazing job of it. But we’ve gained something too:
The knowledge that the human spirit can overcome more than most of us ever imagined. The understanding that with focus, guts and some faith, we can meet goals that may seem unattainable. Proof that strength can be visible when someone seems his or her weakest.
I know I’m planning on trying to be better. One last breath at a time.