August 2016 – On Living (and a $$ Update)

Writing this as I sit on a plane heading home from a quick “retreat” in California. I wanted a little mental break before the busy-ness of Fall sets in, without the kids and in my happiest place. To connect with the beach town where I was born and still call home when I’m not referring to my adopted Pittsburgh. Being in the surroundings of my childhood and a place that Neil loved too – the smells of ocean air, sounds of seagulls, sights of nature and general hippie vibe – recharged my soul at just the right time

But my getaway started with a moment that set me back, giving me an unexpected emotional hurdle to clear on my way to Monterey. It was on the plane while sitting next to a very nice man and his wife and in the midst of normal airplane chit-chat. After a few minutes of discussing the weather and our travel destinations, he glanced down at my computer and said, totally innocently, “So. What do you do?”

Poor guy. He had no idea his benign question was the one thing that would upend me in that moment. I looked from his face to his wife’s healthy hand on his healthy leg and at their married travel trappings featuring tissues, pretzels and drinks on a shared tray table. Those mundane, perfect symbols of a long, average life that were stolen from my family by a horrifying, incurable disease/thief that now marks us forever.

I could tell he regretted ever striking up a conversation with me.

His question just seemed so profound! I used to have really quick answers to this question. I had a rewarding career and then I stayed home to care for our children and then I became involved in community efforts to build things and then I became my precious husband’s caregiver and then all of that at the same time. My identity and what I “do” seemed so easy to convey to anyone who was nice enough to ask. And then 17 months ago I lost it – like a compass all out of whack. Not so easy to package up and define for others anymore. I wanted to give the right answer and not be all depressing about it. I didn’t want my struggle to define me. But I didn’t have an answer either.

My response was a blank stare from stinging blinky wet eyes. No words. Stupid.

“For a living, I mean,” he added. He was trying to be helpful.

I am used to moving around my community with friends, neighbors and familiar strangers who know the story, and to being introduced to new people because of the story. Everyone I meet while out-and-about seems to get it, or at least they are kind enough to ask different questions. Or we talk about the safety topic: The Kids. But this was my first big lone venture into the world without my cloak of The Kids or LiveLikeLou around me. Where conversational niceties start with basic questions so people know where you fit in their worldview, creating a polite gateway to more light conversation to fill up long airplane rides. And I was stumped.

Surely he only had to wait a few seconds but it felt like minutes. Finally, I responded with a hodgepodge sad-faced but mysterious-toned, “Ahh. That’s a long story,” and then made myself suddenly busy with my computer.

Errrghh! He must have thought I was a spy. Or an addict. Or just very pathetic. And while I know I’m not the first person to have a complicated life I feel like the rest of you might have your pitch down a little better than I do. I decided then I need to work on my pitch.

The hard question used to be, “So. How are you doing?”. Before Neil got sick and we were just like every other family trying to muscle through the blinding pace of young family hubbub, my answer was always a breathless, “I’m great! Busy!! Whew!!!” That wasn’t hard. After his diagnosis of ALS my answer was hastily picked from a grab-bag of overwhelming speeches laced with medical-speak and guesswork – we have these crazy challenges but we are muddling through. After he died, after a few weeks anyway, I purposely adopted the monotone “I’m okay, thanks” trying to steer past the conversational pot holes that are around every bend if I’m not careful – a protective and measured response that poorly masked my true sentiment, “Meh. Not so hot. But at least I got out of my sweatpants today.” More than a few of you caught me off-guard or chose to dig a little deeper and uncovered the weepy monologue of how I really was doing in that moment. You know who you are. Sorry about that.

On the last morning of my trip out west I was riding my bike along the beach. It was a foggy chilly ride – just me and my smells, sounds and sights and a refreshed feeling that my retreat was exactly what I needed! An elderly woman approached me with her big wet dog, smiling. I said a “good morning” as I passed. She responded with, “Good morning! How are you doing?” Now, I am well aware people don’t really want to know how I’m doing when we are strangers passing on the street. But I also didn’t give my standard “I’m okay, thanks.” I didn’t even say, “Good!” Instead and without thinking I gave that darling woman a heartfelt, “I’m Great!” and kept on peddling, proving the old adage to the universe when you give happy you get happy. That exchange really struck me – I was proud of myself! I did feel great in that moment and I shared it with a stranger and I felt even greater when I told her about it! I didn’t overthink it, or let my underlying sadness dominate my tone, or get all caught up in the complexity of how I should be feeling or might be feeling if only Neil… For those of you not working through grief I want you to know simple moments like these are big wins for those who are.

Now – seated on the airplane on the other side of my California getaway I’ve spent some time thinking about this. I guess that’s the point of a retreat. Here’s how I wish it went down with that man on the airplane:

Polite Stranger: “So. What do you do?”

Me: “Whatever it takes, man.” (haha – showing him I’m totally confident in my own quest to make a good life for me and those I love no matter what it takes.)

Polite Stranger: (No doubt charmed by my pithy, witty response but still wanting to know) “For a living, I mean.”

Me: “Ahh. Well I am a mom of two hilarious teenagers, and in my spare time I am surrounded by an army of heroes in our grassroots effort to raise money and awareness for ALS in honor of my amazing husband and support of too many other people who face this incurable and ridiculously expensive disease! Whew!!!”

Polite Stranger: (He would be very impressed by now and would want to get on board. He’d be grabbing for his wallet.) “Wow! How can I help….?”

And then he’d write me a really big check and we would put his generous gift to work leaving ALS better than we found it! Voila!

It’s funny that it took my whole retreat to realize I had my pitch all along. This is my life right now. It’s nothing like it was before Neil was diagnosed. I am a different person from who I was before Lou Gehrig showed up. I have learned so much. Met and been supported by so many wonderful people. Let things go that don’t matter anymore. Moved through caregiver/widow/single-parent/home-maintenance/public-speaking challenges that I never imagined I could handle. Witnessed feats of love, courage, wisdom, humor, generosity and science that astound me and give me real hope for those whose lives are touched by ALS. I have stories to tell my children and their children and anyone who will listen that prove people – regardless of age, religion, politics, economics, education, address, abilities, baseball teams – are mostly really, really good.

And though it’s not a job, I see now it’s a living. That’s what I do.

Here’s a mid-year update for our generous Donors and Friends:

Since we began the LiveLikeLou journey March 24, 2012, with a commitment to raise awareness and funds for patients, their families and for research, we have raised more than $3.1 million! You should know the inside joke amongst those of us around the table and with The Pittsburgh Foundation (who have been so amazingly helpful since the beginning) when we first came up with this idea is that I hoped we would raise $40,000. Neil hoped for $100,000. I’ve stopped making predictions over this number!
To date we have granted $140,000 in the form of mobility equipment purchases, home modifications, speech generating devices, therapeutic tools for the loan closet, meetings/conference underwriting to ALS patients in Western Pennsylvania, and Iron Horse awards, college scholarships and holiday meals for their children. Because living with ALS is outrageously expensive. Our goal for this fund at The Pittsburgh Foundation is to operate from a $1 million endowment, which will allow us to continue to give generously to these patients and their children for DECADES to come. Neil’s vision was that our children Abby and Patrick would be the ones directing these gifts long into their lives as a virtual connection with their Dad even though he died while they were young.
To date we have granted $560,000 for ALS Research both at The Live Like Lou Center for ALS Research at The University of Pittsburgh and TDI in Boston. Our goal for research funds is to fulfill the pledge we made of $2.5 million, which was generously matched by Pitt.
We have spent funds on awareness and fundraising events as well – though most of our events are “grassroots” in nature, meaning the wonderful volunteers who lead them cover the costs. We are so grateful.
After all the puts and takes on our accounts to date… drumroll please, we have $850,000 left to raise to meet our funding goals for patients, research and awareness! Seriously. This is amazing!
The “Donor Wall of Fame” which will permanently recognize donors who have given more than $2,500 to our efforts will be installed in September. It is a 17′ installation on the walking bridge between UPMC Montefiore and UPMC Presbyterian Hospitals. It is beautiful – you can read about it here. Also, a letter will be sent home to the listed donors in the weeks ahead to tell you more about the wall. Stay tuned!
Upcoming events: PLEASE mark your calendars to support or attend one or all of these wonderfully fun events.
- September 10 – Friends Steve Yoset and Scott Drabert are goin’ rogue, biking 52-miles along The Great Allegheny Passage even though the official LiveLikeLou Bike Ride has been cancelled due to scheduling conflicts. They are riding because they loved Neil, they hate ALS, and they want to do something about it. They have a fundraising goal of $4k goal by 9/10. If you would like to contribute to their ride, go here and select “Bike Ride” from the drop-down under “Fundraiser your donation supports.”
- October 2 – The Donut Dash – you don’t want to miss this. Bring your kids, your running shoes, your appetite and your camera for this run-a-mile-eat-6-donuts-run-another-mile event at Schenley Plaza. Runners and teams can register here and enjoy sweets from this, the largest order of Dunkin Donuts in the history of Dunkin Donuts (!!), and help the true gentlemen of CMU’s SAE fulfill their pledge to raise $500,000 for The Live Like Lou Center for ALS Research at Pitt in honor of their alumni advisor Bob Dax who has ALS.
- October 8 – 9 – The Live Like Lou Hockey Tournament – Nash Wedner is dedicating his Bar Mitzvah project to LiveLikeLou by organizing and hosting a 2-Day Hockey Tournament at Alpha Ice Complex in Harmarville. Corporate sponsors and donations of gifts for raffles during the tourney are welcome, as well as volunteer coaches and enthusiastic spectators…and if anyone can procure the Stanley Cup for the weekend please get in touch!
- November 19 – TBA fun event replacing the LiveLikeLou Bike Ride that was cancelled due to the darn Pitt/Penn State game (no offense Pitt/Penn State – but you messed up our schedule!) We will announce to friends and on Facebook soon, but to prepare please practice your bike riding, keep your padded shorts handy, and hydrate, hydrate, hydrate.
- December 22 – Fox Chapel Area School District Telethon – Throughout the month of December Suzanne will speak to kids at all of the District schools about the inspiring Lou Gehrig and our goal to leave ALS better than we found it. Kids will participate in numerous events and fundraisers, culminating with a live telethon event December 22nd.

With love and gratitude always… Suzanne