June 2016 – Learning to Fly

us - june 2016 blogThere is a special kind of fear that sits right below the surface for me… a fear that the next heartbreak is just around the corner in the form of an accident or a disease. When you lose a loved one for a seemingly random reason, and especially if you are regularly told your loss was part of some greater plan that you have no control over, you start to get a little nervous. Why was THAT the plan? Why didn’t anyone ELSE get this plan? And what fiery hell is written for the REST of the plan? I know I’m not unique in this feeling, but I simply don’t have any loved ones to spare… especially not a child, no matter how smelly our teenagers become.

These days my kids call me “paranoid” nearly as often as they call me “mom”, and there is a legitimate tally in our family how many times I have called the police… just to be safe of course.  When we cross any street on foot lately I assume what my kids lovingly refer to as “The Starfish Pose” making myself as big as possible and protecting them with each limb so they won’t be hit by a bus. At the early thunder rolls in the night sky I drill them to come to the first floor so a tree won’t land on them in their sleep. And we regularly role play at my prompting (begging, actually) how to set the house alarm, break away from a kidnapper, spot potential botulism in a sealed applesauce container, survive a choking incident if alone, use the fire extinguisher, outsmart a mob, and escape a housefire from every room. Defensive driving tutorials have begun and poor Abby may be too scared to ever drive, thanks to me: The Soothsayer Of All Possible Road Hazards.

Tonight’s conversation was about ticks and tick-borne diseases – a very real thing where we live and a recent diagnosis for a friend. This insidious little villain gives you a virus that presents as fatigue, aches pains, dizziness, etc. The kind of low-grade, drawn-out malady that doctors, often unable to conjure the diagnosis after months of investigation, start to look at you sideways and say, “Maybe you should just see a therapist.” Or, as Neil heard from his doctor, “Perhaps you should take up mindfulness meditation.” (There was a time we hoped his early signs of ALS were just stress, or Lyme’s Disease. We are lucky, but not that lucky).

So Neil was the roof-climbing, fence-scaling, window-jumping, night-swimming, sky-diving, gun-toting LAPD Police Officer for heaven sake – he never would have raised his kids to be so physically cautious as I do!  I get it.  I know I am ruining my kids…the way I see it I am going to ruin them for something, so let it be for their own personal safety. In fairness to me I do encourage them to do way more adventurous stuff than I ever have. They go to sleep-away camps in different states. They swim in lakes and oceans when you can’t even see the piranhas or sharks in the water. They zipline. They ski. They speak into microphones without coughing fits. They cut the veggies and clip their own nails (well not Patrick…. soon). But they live with the constant threat of my crazed wrath if they take stupid chances with their safety or health – and my bar for “stupid chances” is lower than that of normal people.

Yet here is a play from Neil’s playbook: the most important lesson we can teach our kids is how to thrive in this life without us – not just survive – despite the risks. We, their parents, have to be the teachers. We get to be the teachers. It is our obligation and our privilege. And the best way to teach is by example.

It blows my mind how Neil tackled his 100% fatal diagnosis of ALS with such vision, conviction, humor. And let me tell you friends, it was always, always about teaching his kids. How he approached things like his need for physical help, his feedings, transfers, dressing, grooming, wheel-chair logistics, general moving about the house, introduction of new equipment to help him… he always developed some method for how to intimately involve our young kids in his progression with ALS. His was a relentless, bold humility that let his children in, by design, and allowed them to learn from his response to weakness – 24/7. And as for LiveLikeLou… well you know his mission “to leave ALS better than we found it” was also by design – to create a purpose out of lost hope and grief. Something that he could leave behind as a legacy for his children. Something that would serve as a virtual rival to his absence at their graduations, marriages, and births of their children. Something to point to and say with certainty, “See? Dad definitely would have taken that hill!” “Dad never would have taken ‘no’ for an answer” “Dad was never too tired to help someone else” “Dad would have laughed” “Actually he would have thrown a party”

Neil’s lesson was: when given the choice between two paths… pick the one that will give you the better story.

I wouldn’t have done it that way. I know my limits. Truly! Most people wouldn’t. But he wouldn’t have it any other way. His example inspires me. The upcoming two-week period including Fathers Day, his 51st birthday, the anniversary of his ALS diagnosis, and the anniversary of our first meeting on the beach will be a sacred time for our family to pause and remember everything Neil was to us and will always be – inspirational.

I’ve learned that fear and courage go hand in hand.  So each morning I give myself a little pep talk… to put more energy into forging the new path than laying down in a comfortable weepy heap on the old one.   And like any self-help method I’ve studied, the first step was admitting I may have a problem (see the above public disclosure of my fear-driven existence). The next was to stop crying regularly. We have that one almost down. Third was to laugh more. Out loud. Thankfully teenagers and some pretty funny family and friends help with this… and the 2016 primary elections. Next up – get outside and exercise – the weather helps with this one. And now – Summer is upon us and distractions abound! Sleepaway camps, travel plans, firepit s’mores, Pirates games, and blessed downtime are all scheduled. And my promise to myself is to do something that scares me….like once a week. In front of the kids. Not because I am seeking thrills, believe me – I hate thrills. But because I have the obligation and the privilege to teach my kids by example how to move through heartbreak and sadness with courage and optimism – to thrive in spite of the risks, not just survive.  I think it’s like a bird learning to fly. No matter all the encouragement, instinct, training and trust in the process, in the end you are the one that has to jump out of your comfort zone and flap those wings all the way to the sky! Emerging from the grief of losing the best friend of more than half my life, role model and father to my children, after the ALS joy-ride…it’s harder than you might think. Than I expected. I am a work in progress.

Ugh – I can imagine reading this must get a little tedious and I’m sure many just click out. It’s okay. Loyalty to friends does not have to extend to serving as an e-sounding board through my long grief journey. It was supposed to be a blog about living with ALS, but it has morphed into a collection of essays about living in spite of ALS. For Neil and now for me. And also a catalog of all of the amazing feats of strength and generosity that we have witnessed because of LiveLikeLou and our mission to move the needle on this stupid disease.

And that’s the gold buried here.

The cause of ALS and LiveLikeLou remain a huge purpose in my life and our family’s, a whole tribe of mighty friends and a growing number of strangers who are becoming friends. I read recently you can best judge the character of a person by how he/she treats those who can do nothing for them in return. Then I see what you have done and still do for LiveLikeLou and the cause of ALS…. you inspire me too! And I’m glad to have this blog and website because my kids and their kids and anyone else who’s curious will have every detail here to see what real heroes look like – YOU!

So here’s your update:

  • We are at the $1million mark! This is the amount we have left to raise (after the most recent gifts and pledges to our effort) to 1) fulfill our pledge for $2.5 million toward the Live Like Lou Center for ALS Research at The University of Pittsburgh’s Brain Institute, and 2) raise the $1million endowment to support ALS for patients and their children in Western Pennsylvania for decades to come. WOW!!!!
  • BIG NEWS!! Donors to Live Like Lou who have contributed $2,500 or more, since we started in 2012, will have their support PERMANENTLY acknowledged on a beautiful, unique “Donor Wall of Fame” – this 17’ installation will be constructed in the weeks ahead, on the bridge that connects UPMC Presbyterian with UPMC Monetefiore Hospitals at The University of Pittsburgh. More than 900 patient transfers occur on this walkway daily, in addition to the researchers, physicians and families who also travel the bridge each day, bringing awareness and excitement for the efforts of our researchers for many neurological disorders at Center long into the future.  See the image of the wall and read more about it here.
  • The 5th Annual “DOW” Event was held in March, raising $36,000 for Live Like Lou – read and see the pics here.
  • The Anne Lewis Advocacy and Humanitarian Award was given to The Live Like Lou Center for ALS Research in May, the kids and I accepted the award and are thrilled that half of the $100,000 raised will benefit our research efforts.  Story and pictures here.
  • The 3rd Annual Live Like Lou Swim-a-Thon broke all records and exceeded our wildest imagination… $10k raised and 4,723 laps swum!  Wow!!  See the highlights and fun pictures here
  • Upcoming events… we hope you will join us as a participant or a sponsor for some of the eventsplanned for later this year.  In particular the LiveLikeLou Bike Ride and the Donut Dash are GREAT for families and wonderfully fun!  See info here!

I have learned that dreams — if we are determined — can bring on a beautiful future. Even if we don’t live to see it, we can still make it happen. That’s what Neil did… with your help.

With love and gratitude for every single day…

Suzanne