“You’re an original Stebbins Strong, Dad.”
I’m so glad I got to share that with him. It came the night we had the call. That’s how I’ll always remember it. The call. When he called to say what was already being said between us, even though hundreds of miles away. That Dad was dying and he didn’t have much time left.
That evening, he also told me he had seen the Lord, and I never doubted it.
After the call was the first time I broke down about Grandpa in front of my kids. Just prior to that when he was hospitalized, I told them, Grandpa’s not doing well, and my middle child quietly said, “Grandpa’s always sick, Mom.”
But I knew this time it was going to be different. Unlike all of our trial runs before, where we gathered around him in the hospital, and he found an unbelievable way to fight back, I knew he could fight no more.
And the night of the call, I told him I didn’t want him to. I told him he had bravely fought what no one else could, for twenty years. No typo there, my father has battled the effects of limb-girdle muscular dystrophy and a rare respiratory condition, for two decades. He called me one fall afternoon during my freshman year of college and told me the news of his MD. And my world was never really the same.
And just a few weeks ago, on a Thursday night, the last day I was really able to converse with him, I texted him and again said, “You’re an original Stebbins Strong.” He couldn’t talk much that day, because he struggled to breathe, so we texted. And we both admitted to crying through the texts.
If you’ve ever wondered where I found grit, strength, and courage after AE, wonder no more. It’s from my dad. For the past five years as I fought to stay alive, recover, and be relevant again, I had Dad’s quiet guidance. Not from what he said, but how he lived. Dad’s strength was truly unmatched. So was his ability to never complain (a trait I’m afraid I didn’t inherit). He was my living proof to never, ever, give up.
In Unwillable, I said that no matter his battles, if you ask Dad how he’s doing, he’ll say: “Fine.” In the years since I wrote that, I would change his answer to, “Pretty good.” In the past two years when I feared the ending was no longer creeping near, but headed right towards us, he was steadfast.
“Hey Dad, how are you today?”
“Oh, I’m pretty good.”
For twenty years, I can’t imagine there were a lot of days that Dad felt pretty good. Probably not even fine. But outside of his immediate family and a few cherished friends, most didn’t know.
Dad was so accustomed to being so brave, he even managed to answer the priest, just hours before he died.
“Jack, how are you?”
“Oh, pretty good.”
He really said it. And my dearest mother, and my two brothers and I all heard it, too. On his deathbed, Dad said he was pretty good.
And when we told the priest Dad was ready, he was at peace, and he had seen the Lord, the priest said something I’ll never, ever, forget. “Jack, I believe that with my whole heart.”
I’m Catholic for a variety of reasons outside of it being the faith I was born into. I wholeheartedly believe the Church’s proclamation of life everlasting. An eternal rest in heaven with all those we’ve lost and whom we love. I believed the priest at Dad’s funeral who said, “It’s not goodbye forever.”
I said everything I needed to, to Dad, before he died. I said enough that I’ll be held over until I see him again.
In the meantime, when I want to share a story with him or ask for help, I’ll just have to do it in a different way, through a different medium. My prayers and silent thoughts will replace the phone and our conversations.
But I’ve already seen him. Through the Australian Shephard dog that stopped in my yard. Through the beads of his rosary, woven around his peaceful hands. Through his buddy, my little miracle baby, A.E., and her Minnie Mouse car.
In the way Rachel left me a dime the day he elected Hospice care. To tell me he’d join her in that eternal place. In the way I found another one after I returned from his funeral.
I know he’s watching. I know he approves.
Right before he died, he texted me, “You inspire me. And others.” I’ll hold onto that one for life. And I’ll keep going.
I’ve always loved Sen. Ted Kennedy’s quote, “The work goes on, the cause endures, and the dreams shall never die.” Even though my heart feels a little broken, my cause endures. And the work and dreams of JM Stebbins will continue, in no small way, because of my dad, Jack. An original #StebbinsStrong.
Hug your dad today. And your mom. And everyone around you. And tell everyone near and far, I love you. I’m so glad I had so many hugs and I love yous with my dad.
"So here's to the moment I deceive my better angels And the foggy midnight floors of perfect strangers
"It's alright, I'm not tryna get 'em out of my head It's alright if you don't care, then I don't care It's alright, I don't wanna get 'em out of my head Is this where we begin again?" ~ Better Angels by Marcus Mumford
/ / The JM Stebbins blog is an autoimmune encephalitis blog from former lawyer and autoimmune encephalitis survivor, Jackie M. Stebbins.
Jackie M. Stebbins is also the author of Unwillable: A Journey to Reclaim my Brain, a book about autoimmune encephalitis, resilience, hope, and survival. / /