December 2016 – How to Outlive a 100% Fatal Diagnosis…

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It happened again this week. It actually happens at least once a month, sadly sometimes two or three times a month. Some friend of a friend, cousin, neighbor knows of a person who has been diagnosed with ALS (or alzheimers, or an incurable cancer, or…). Or worse…their kid has. My phone rings or I get an email or a text saying… “I thought maybe you could talk to them”. They tell me no one saw it coming. They’re too young. Too good. Too healthy. Too whatever. It’s too sad. What can we do? No one knows what to do.

I am touched when someone thinks to call me for support in these situations. Humbled. Scared too. There is absolutely nothing easy about the journey of a horrible diagnosis. If it’s you. Someone you care about. Someone you can’t breathe without. In fact it is impossible. And there’s nothing that makes it easier to talk about – not even time. No matter what everybody says. But to have the opportunity to help someone facing that worst imaginable situation even in a small way is a privilege to me. Sharing the hugs, the tears, the dark humor that only people in deep grief can laugh at – I feel like it gives a little more meaning to what we are all going through… like it is for a reason…like we are not the only ones.

So we meet for coffee, or I go to their house, or they come to mine, or I answer the emails with lots of the same questions I asked in those black days when I was swimming in the muck of tears, fears and (frankly) nausea because I had been told my precious husband was going to die in 2 – 5 years and there wasn’t a single thing we could do about it.

I tell them I have hope for a cure in my lifetime (I do).

I tell them about our house remodel, the ADA bathroom, the double-handled coffee mug, where we got the wheelchairs, the van, disability clothing and eating utensils, urinals, eye gaze technology, dietary supplements, breathing aids, and hands-free toileting.

I tell them how I almost killed Neil because I eliminated all meat, dairy, caffeine, sugar, salt, alcohol and gluten from his diet. All at once. Because I was going to cure him with big fresh kale, ginger and beet juices morning, noon and night. And then I tell them he almost killed me because I was starving him to death and all the poor man wanted was a cheeseburger and a milkshake. And a beer. I tell them I gave in. We laugh through tears.

I tell them to say “yes” to the offers of help because if you keep saying “no” people will stop offering to help… and you’re going to need help (and homemade meals from friends are SUCH a gift).

I tell them names of architects, retailers, disability device specialists, local ALS Association and MDA experts, equipment loan closets. How we got our wills updated and changes to our insurances.

I tell them to take care of their backs and do lots of stretching – because life as a caregiver is a workout!

All the practical stuff I can think of.

Yet I don’t tell them how to beat their disease.

Because I can’t.

Unfortunately for some diseases that just isn’t an option. We can cure lots of cancers, send cameras beyond our solar system and tell robots what to do just by thinking about it. But we can’t beat ALS.

Not yet.

Neil used to tell people who would come for advice, “I’m not any smarter than you are. I’m just going through this before you do. We’re all going to go through it. (he was talking about dying). And here’s what I’ve learned.” Then he would weave together lessons – some funny, some sad, all realistic – in a magnetic way. We would all take notes because My God He Was Such A Gifted Storyteller. We would be better because he taught us a thing or two and he made us laugh when we should have been making him laugh.

(Neil would have made a great old man.)

But now I’m the one that is left to share his lessons. And what I really wish I could tell them is how to outlive their 100% fatal diagnosis. Because it is possible. I witnessed it.

Oscar Wilde said “Experience is the hardest kind of teacher. It gives us the test first, and then the lesson.” I would add “if you are able (not everybody can) and if you are willing (not everybody wants to)”. Because I’ve seen some people succumb so quickly to their disease or give in so completely to the grief and confusion there simply isn’t a choice in the matter. And I have seen others choose anger to mark their final days – because that is how they control things. It works for them I suppose.

But to those who have a choice I wish I could say “If you measure your life in terms of the love your family will carry for you forever. If you find grace in the fact that your kids will be more empathetic and patient spouses, parents and citizens because they were the child of a disabled person. If you want people to mostly laugh with joy when your name comes up. If you hope your stories are told and retold with a regular nod of admiration. If you would be proud if people took your words and put them on t-shirts. If you can possibly think of the time you have left as an opportunity to invest in your legacy… ”

If all of this were true, I would tell them, “I had a front row seat to watch a man outlive his 100% fatal diagnosis. I took notes. This is how he did it.” Then I would share these lessons that we learned from life’s hardest kind of teacher:

Lesson 1: “Get Over Yourself” – These words were spoken to me by a woman I have never met, but I spoke with her on the phone from across the country for advice because her own husband had ALS for 10 years. I was hoping for a “Poor Baby” just weeks after our diagnosis. Maybe some tips and tricks for surviving this situation. But instead she told me – very bluntly I thought – “Get Over Yourself”. She went on to say “Suzanne everybody has something. Some divorce. Some cancer. Some job loss. Some sick kid. Some parent who let them down. Some failure. You are not the only one facing what you feel is an impossible situation.”

I told Neil what she said and we agreed she was the meanest person in the entire world ever ever ever.

But I now really appreciate those words – they snapped me out of the chaos in my mind in dealing with what seemed like an impossible future, and forced us both to stop feeling sorry for ourselves and start confronting what really mattered.

And those words have come to define what I observed in Neil right after his diagnosis… he had what I call a “speed-to-acceptance” that was truly remarkable. He was given terrible news. And his very next actions were focused on what he could control. He sped through the phases of Denial, Anger, Bargaining, and Depression and he got to Acceptance at a break-neck pace. Now, he’d be the first to tell you that he gave himself time for a hard cry about once a day (though I never witnessed one). He would say “Every once in a while a good cry just feels good”. Hard to disagree.

I see now that Neil wanted to live, truly live, more than he feared dying. Somehow he knew that denying this next chapter of his story would leave too much to chance. But accepting this chapter gave him the power to write his own ending. So he got over himself and he got busy. And he showed me that hoping for a “Poor Baby” is not a plan.

Lesson 2: “Your Children are Watching” – Neil received his diagnosis in the Summer of 2011 – just as we were heading into back-to-school season, ice cream socials, open houses, fall parties. And all I wanted to do was hide. From everyone. I didn’t want to talk about the disease that had struck our family. I didn’t want to hear everyone’s sympathies. I wanted it all to just GO AWAY.

But a very wise woman in our community said these words to me.

She went on to say “Suzanne. If you react to your situation with fear, or sadness, or denial or hopelessness……your children will too. But if you react with determination, hope, joy and a plan…they will too.”

I’ve written about this lesson before because it is so brilliant – so I’m sorry for the repetition. But it’s pretty smart. Truly, it’s just like when an emergency occurs on an airplane. You are instructed to put your air mask on first and then tend to those around you, to your children. This lesson reminded us then (and still reminds me today): be the role model you wish you had in times of fear, grief, confusion. Your children are watching and they are learning from you. There is no greater lesson than teaching those we love that we may not always be strong, but we can always be brave.

I think an occasional show of parental courage is a gift we get to give our kids no matter how old they and we become.

Lesson 3: “I am the luckiest man” – After studying the mighty Lou Gehrig’s life and words before and after he got ALS, Neil looked hard at his life and felt pretty lucky too. He said in a different way, soon after his diagnosis, to someone who had asked how he felt about the matter, “Look. I have never been hungry. I have never lived in fear. I have never been lonely. It’s been a pretty good life.”

I wrote that one down when he said it. He didn’t know he was being brilliant at the time, but wow! And he was right! We had two healthy kids. We had a strong marriage. We lived in The Best City In The World – Pittsburgh, Pennsylvania!

He wasn’t ready to die, but he wasn’t going to start complaining. Neil was grateful for what he had. Neil decided to make his gratitude his starting point… for every single day. And the result of his choice is a thriving, busy and grateful family and a movement supported by thousands to help those who face the same disease that would take him from us.

Lesson 4: “If I can live with it, you can look at it.” – Before the Ice Bucket Challenge that raised $130 million for ALS a few years ago, no one had really heard of this disease. Our own family had barely heard of it before Neil was diagnosed.

The reason isn’t because it’s rare. It’s because people don’t live very long with ALS.

So Neil wanted to use his journey to raise awareness about ALS – to show the world what the disease can do to a body. A body just like yours. Just like mine.

He posed for these pictures and his friend and commercial photographer Duane Rider took the shots. Neil wore the t-shirts of organizations that gave him great strength throughout his life and made him the man he became – to show his gratitude for the people and places that meant so much to him in his journey. His high school, college, job as a Los Angeles police officer, city of Pittsburgh, Law School, his beloved Pirates, his employer and second family of Hefren Tillotson….

He intended to keep wearing the t-shirts and posing for more pictures no matter how difficult his illness with ALS was.  I’m sure his next picture would have been of a Fox Chapel Fox.  Then a Boston Terrier.  Probably his brothers, sister and kids.  Eventually he would have talked me into putting my face on a shirt.

But his bold message to anyone he met was always going to be “Look at me”.

See me.

Have empathy.

Be brave.

At least as brave as those who have to live with the hardships.

Have confidence that hard problems are not unsolvable. They just need more people to see them and choose them to solve.

Lesson 5: ONWARD – I don’t know exactly where he came up with ONWARD but it has a life of its own today. It was just a salutation – he used it to sign off on his emails and social media posts… “ONWARD Neil”. I think he meant to convey “If I can move ONWARD you can move ONWARD. Let’s move ONWARD and do some good together.” Today it’s on my license plate. It’s on about 500 kids’ t-shirts in our community. It’s on this website.

The thing about Neil and about most remarkable people I have found, is that they know the difference between impossible and improbable. His project was NOT to find a cure for his disease. He accepted and understood he would die from ALS. So Neil picked something he COULD control. He decided to use his life and his energy to leave ALS Better Than He Found It.

For the next guy… that’s what he always said. For the next dad, mom, sister, brother who gets the diagnosis – he wanted them to have more hope than he had.

So we decided to raise awareness for ALS, to raise money for patients and their children, and to raise money for research to find a cure. We called this project “Live Like Lou” because we wanted people who heard about us to know our intentions: To Live Like the Great Lou Gehrig Lived. With Determination. With Gratitude. No Matter What.

I hoped we would raise $40,000. Neil thought we would raise $100,000. To date we have raised $3.4 million for ALS. Of the thousands of donations to our cause, 95% of the gifts have been in increments of less than $100. Every single dollar we have raised has come from Western Pennsylvania, and every single dollar we spend will be spent in Western Pennsylvania.

I’m not saying all of this to impress you. Believe me I didn’t want any of this. And I would give it all back to have Neil with us here today.

But the thing is my brave husband focused on what he COULD control. He couldn’t control his disease. He couldn’t control his hands. His legs. He couldn’t control drawing his next breath. When you don’t get to choose how you will live or how you will die, the only thing you can control is your Attitude.

Neil could control his attitude.

I have learned that when things are incurable, or impossible, or hard to look at, or we are facing eminent failure, or we simply don’t know how… we get over ourselves. We be the role model we wish we had. We remember what’s working for us and we start from a place of gratitude. We ask for help. And family and friends and neighbors always help (because people are awesome). We choose a problem and pick a goal – a really big audacious goal. Give it a meaningful name. And then we move ONWARD.

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So…I’ve written or spoken about a lot of this before but I thought it would be good to get it all in one place. And I offer it here with two caveats:

1) I use the word “outlive” because although my precious husband died 21 months ago, he is almost as present today as the day he left us – guiding our decisions, my parenting of Abby and Patrick, and our work for Live Like Lou. He could not have known the impact he would have and that we would still be doing this work. But I can tell you he hoped for it. I am happy for him. I call this “outliving”.

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2) Each person’s life journey and reaction to tragedy comes from a set of very personal choices, abilities, a million different constraints and faith. It is with heartfelt and humble respect that I offer these lessons and acknowledge that there is NO easy path through a terrible diagnosis. Every choice one makes takes courage.

Courage I hope I don’t have to muster again any time soon.

We have come a long way with Live Like Lou in 2016. Lots of wonderful financial grants to patients, their children and research to find a cure. Lots of incredibly heart-warming, fun and even hilarious fundraisers. Astounding progress toward our financial goals (we have less than $700k to go!  Please join us and give here!) Permanent recognition for our donors who have given more than $2,500 since we started this whole thing in 2012.

There is so much to say – I will tell you more in the new year and of course updates are posted regularly on Facebook. For now, I want to report that Abby, Patrick and I are healthy and strong. And I am so grateful for every single bit of this. I know Neil would be beaming with pride. It makes me smile.

With love and gratitude for every single day…  Suzanne