May 2016 – Lucky

pic for blogWhen you are a teen girl and only some of your friends love skiing, the next best theme for a January birthday is… of course… hanging out at the mall. So Abby designed a scavenger hunt, split the “squad” into teams and they spent a Saturday morning finding stuff, annoying sales people, taking selfies with strangers and generally being silly. My job: pay for everything, take lots of photographs and try not to embarrass my daughter. She had a great time! I was going through the pictures from that day recently and found this one… it was supposed to be a shot of the girls walking toward me on their hunt for some prize, but this elderly couple got between us.

Just look at these two! They have gray hair. They are holding each other up with her cane and his careful steps. In each other’s arms. As they have probably done for 50 or 60 years. They have seen each other at their very best and their very worst. Made memories. Set goals. Achieved victories. Laughed. Overlooked wrinkles, gray hair, weight gain, snoring, moral questions, political differences, loss. Comforted. Probably fought. Just lived normal lives. My guess anyway. And how lucky to live this long and have a witness to walk with arm-in-arm after so many years – unscathed by the random bullets that regularly take out our husbands or wives with incurable and fatal diseases far too soon. It reminds me of the moment I sat in the family waiting room while Neil had a minor surgery to help with his breathing. Next to me sat a man who looked to be 150 years old – in his tweed coat, necktie and hat in his hands. An aid came in and handed him a little baggie with what appeared to be teeth in it. His wife’s dentures. I started crying thinking “How lucky that woman is! Her dapper husband will safeguard her teeth while she fights some illness.” And, selfishly, “Who will hold my teeth when it’s my turn to fight an illness?”

Then I got some perspective and remembered that Neil didn’t have even a little choice in the matter. He was diagnosed with a fatal illness at 46 when his children were 9 and 7 years old. All life goals thrown out, knowing his family and friends would helplessly witness his every weakness and humility and pain. And there was nothing he could do about it. No treatment. No cure. No chance. He wouldn’t live to see his 50th birthday.

But there was more to Neil’s story. Not the dying part. The living part. He started by deciding he was lucky. He made the choice to live big and bold, setting audacious goals and rallying amazing friends who lovingly found ways to help. At home he was big too! He worked tirelessly at his computer and phone trying to move mountains, raise money, meet with decision makers. Reminding our kids at every point that they might have been given a bad break, but they were the luckiest kids on the face of the Earth.

And when he set the work aside, we were just a family trying to shut out the sadness and let the normal in. “Normal” has a very different meaning when you live with disability or grief. Pain is a hum in your head that rarely subsides and only when life gets so loud you have to just be in the moment you are given. We had a few of those blindingly bright moments during our ALS journey – usually when we least expected it. For example a rare, romantic mommy-daddy Friday “date night” scheduled a couple of months after our diagnosis. Neil and I REALLY needed an evening of peace and fun and forgetting the heavy stuff. The kids each had sleepover plans with friends. We had our dinner and movie plans. But on the way out the door – sleeping bags and duffels in tow, kids clambering to get to their respective parties, Neil with that happy grin – I noticed one of the kids (will remain nameless) kept scratching at his/her scalp. “Why do you keep scratching your head?” I lamely asked.

And then it hit me.

Actually, I saw them. Head lice. Six, to be exact. They really do look like black rice.

It all went to hell in that moment. I screamed. Neil yelled. Kids cried. Phone calls were made. Plans cancelled. Bedsheets, pillows, blankets, clothing into dryers and washers and large sealed garbage bags. I stripped us all down for scalding hot showers and crazed-mom scrubs complete with loud grumbling (from me) and pained complaining (from them, including my dutiful husband.). Then the plastic wrap with tape went over everyone’s hair, locking in layers of olive oil and mayonnaise (the Internet said so – I didn’t dream that up), trying to suffocate the little vermin and keep the sloppy drips out of our eyes, off the carpet. Dogs licking at us with an eager “What up, humans? You smell delicious!” fervor. Romantic evening ruined and replaced with broad-spectrum heebie-jeebies. A prognosis of 3 weeks’ effort to kill the bugs throughout our home. My precious husband’s hands unable to help because of the stupid ALS.

And then. . . . laughter.

liceDeep belly laughter that comes with wheezing, sore cheeks and tears because it was all so beautifully absurd. Seriously! Who would write in their novel “and then the disabled dying man’s family, with a momentary glimpse of unhindered Friday night joy, got an infestation of head lice”?! When you have been carrying sadness for so long, and then you get a little more sadness, sometimes all that is left is laughter. I didn’t know then we were making a special memory that night. It was real life – too bright to be sad – at least for that evening. Slimy plastic-wrapped heads atop my family’s squeaky clean, underwear-clad bodies. Board games on the floor. Pizza delivery. Beer. Giggles. Magic.

We are lucky to have had that moment.

I’m glad I took a picture.

Take pictures.

So the Live Like Lou Army is back at it again – the 2016 calendar is filled with great ALS awareness opportunities and fund raising events focused on helping us to raise the final $$ for Live Like Lou. Notably, Cleveland Brothers “Rebound Strong” Program with Pitt Basketball raised $6,000 for us, and Baldwin High School’s Reading of Homer’s Odyssey raised $3,000!  The very fun Hefren-Tillotson-sponsored 5th Annual DOW event raised $36,000 last week!  Next week the Anne Lewis Advocacy and Humanitarian Award honoring Live Like Lou will generate thousands more for our fund.  And then May through the end of the year the calendar is packed.  Please mark your calendars to attend these upcoming wonderful events — including swim, golf, bike, donuts, and hockey events — and look for registration info on our Facebook Page.  Also, if you are interested in being a sponsor or would like to share a corporate or foundation sponsorship idea for these events, please get in touch. We expect to increase attendance and media exposure for each of these events in 2016 and corporate friends may want to be involved.

As of May 1, 2016, we have $1.1 million left to raise to fulfill our goal of 1) setting up a long-term fund to support ALS patients and their families in Western Pennsylvania and 2) fulfill our pledge of $2.5 million for the $10 million Live Like Lou Center for ALS Research at The University of Pittsburgh. I am SO PROUD!!! HONORED!! The funds we have raised to date have been ENTIRELY grassroots raised – because family, friends and neighbors want to help us leave ALS better than we found it! THANK YOU for being a part of this journey!!!

Although our family has been given a bad break, you routinely make us feel pretty lucky too.

With love and gratitude for every single day…

Suzanne