Last month we were in a far-off country in the middle of a desolate jungle having seen only a few humans for way too long. Our guide was nice and my children were unaffected by our complete off-the-grid, no 3G/cell phone status. (I know, right?!) They scrambled to the top of an empty, steep 10-story Mayan ruin like it was the top of a jungle gym. Kids these days! They have no appreciation for how fears, especially parental fears, get more overwhelming with age! Looking up at them at the very top, from my hopeless (but sure-footed) position on the ground I thought…. “No. Damn. Way.” My futile yells of “hang on” and “stay away from the edge” were completely ignored. I think they laughed at me.
It was Abby who said “Come on, Mom!” And even after stalling two-thirds of the way up and telling anyone who would listen I wasn’t going to the top, I heard her say, “You can do this. You will be so proud of yourself.” She said, “You will be so mad at yourself if you don’t. You will love it up here!”
I swear it was Neil talking to me into this feat through his brave daughter. I know it was.
So I climbed to the top.
And after threatening everyone around me not to touch me or push me or come near me, I climbed back down without the assistance of a life flight or safety ropes. Rather I scooted down. On my butt. Whatever. I did it!
I have stopped counting the amazing ways Neil has shown up in my life in recent months. Coincidences. Songs. Smells. Dreams. Sights of others with ALS and my instinct to go up and be a friend. Abby will say something or Patrick will make a silly move and I will see my precious husband in them. Today I Iearned a new beautiful baby was named “Neil”, partially inspired by him. He would have loved that! I will quietly think to myself “I have to tell Neil about this…” and then I remember he’s gone so I just tell him in my heart. Sometimes I will even say to others in the room “Neil would have…” to bring him into the moments, but then I feel dumb. Even though I know our family and friends are mourning him too. They miss him too. But I don’t want to be the constant “keeper of the grief”, so I often just keep it to myself.
His voice and laughter and logic are always with me – guiding me through these moments and encouraging me to be mostly delighted with each one. Over the last year I have accomplished feats of courage I never thought possible – starting with deciding to truly live, and then making healthier choices, working through hard conversation, traveling to faraway places, climbing way beyond my fear-of-heights limit (literally and figuratively), allowing myself to feel more charmed than terrified when a brave man asked me to dinner, squeezing back the tears when longing and loneliness hit, deciding to let go of things that used to mean so much more because he was here.
Each of these moments has been wrapped up in a prologue of deep breaths and pep talks like Neil would give me (because he wanted me to live), and an epilogue of “I did it” affirmations (because I want to live too)…. I try to remember that these moments are never as hard as I think they might be – I talk about my moments like old glory days. Repeat. Repeat again. Until my feats become habit.
Closing out a 20-day period of multiple griefy dates… fathers day, his birthday, anniversary of his diagnosis 5 years ago and anniversary of the day we met 28 years ago. Each year I think getting out of town for travel and diversions with the kids will help this period pass, and each year I am right. It’s not an attempt to forget, it’s just a goal to get through without the crippling grief that is so easy to conjure. The calendar is kind of a siren for those going through loss. It wails “don’t forget, don’t forget, don’t forget” as if you could possibly forget. So “distraction therapy” as I call it has been the winning approach to keep us all too busy, and me in particular a little too overwhelmed to dwell. And getting away from the calendar is especially refreshing.
I suppose if Neil hadn’t died so young I would feel a little less anguished. Like if he had made it to 50. 60. 70.
But Neil received his 100% fatal diagnosis of ALS 4 days after his 47th birthday when his kids were 9 and 7 years old.
And he was 49 when he left us.
Today, July 6, I lived longer than Neil did.
This is something! Every day going forward I will have more mileage than he ever got. I will have more chances to see beauty and sadness, feel anger, love and pain, pride and fear. I will get to stretch, feel cold and hot, bee stings, sun burns and wrinkles, hear new music, see global changes, and melt into the squeeze of hugs and hand holds and kisses. I get to dig in the dirt and ride my bike and meet amazing people and be with loved ones as they go through all of this too.
Sorry to be cliché, but I feel lucky.
And the fact that I am healthy in this moment, and my kids are too and that we get to live this life that he would give anything to be with us again even for even a day… well that’s something.
Like a lot of terrible diseases and bad luck, ALS does not discriminate. Age, race, habits, DNA, religion and economic status have very little to do with when and how you get, live with or die from ALS. Believe me I tried to cure Neil – but after tons of spinach and kale and blue algae and antioxidants and vitamins and every reasonable drug, prayers, mediation, massage…. my conclusion is, for ALS anyway, it’s pretty much luck.
Neil would tell you he was lucky. Even after all this, he would. Just like Lou. So I’m not going to take my good luck or his for granted. I’m not going to waste it. I’m going to live my life fully. Abby and Patrick are too.
And we are going to keep working for the cause of ALS.
Since March 24th I’ve taken a little break with the social media postings and the fundraising. Because we (I mean YOU) helped meet our goal of raising the $2.5 million for the Live Like Lou Center for ALS Research at The University of Pittsburgh, and the $1 million endowment for patient care at The Pittsburgh Foundation. We’ve done something amazing!!
But LiveLikeLou has a continued purpose to Leave ALS Better Than We Found It….raising awareness, providing grants to ALS patients and their children, and funding research to find a therapy or a cure. And this Fall we will be back at it again with The Donut Dash (October 1st) and a few more fun events… stay tuned!
Have a great Summer!
With love and gratitude for every single day… Suzanne