What I've Learned: Glenn Fitzpatrick
Esquire General Manager, 46, diagnosed with ALS, summer 2007

By Cal Fussman



Image courtesy Glenn Fitzpatrick

Glenn, Madeline, and Maddie on her fifth birthday.

Interviewed December 2007

I’ve always been a prime-rib kind of guy, medium rare, garlic mashed potatoes and creamed spinach, eaten while sipping my second Grey Goose martini.

My wife has been after me to start writing letters to Maddie so I can tell her about my life. Maddie is five years old. All she knows is the dad who’s always tired. So it’s a good time to get some of these thoughts down.

My speech is really bad. Unless you can read my lips, it’s difficult to understand what I’m saying. Doing this through e-mail is best.

Swallowing liquids is hard now -- especially water. I have to be very careful and take small sips. Otherwise, the liquids will seep down the wrong pipe and into my lungs.

I’m the type of person who experiences things and lets them go. I’ve played on some great golf courses with a bunch of guys almost every year since 1990. I’ll hear some of them talking about specific holes we’ve played, and I’ll be thinking to myself, We played there?

I think I’d like Maddie to know that I loved her and her mother very much. And that I’ve always tried to do the right thing. Also, that integrity, honesty, and hard work are my most important attributes.

My best athletic moment probably came off the field. It was during my senior year in college. Our soccer coach appointed the best player as a cocaptain and let the team vote for the other cocaptain. Even though I was a fullback who hadn’t scored a goal in his career, they voted me co-captain. It made me proud that playing hard, hustling, and doing the dirty work was recognized by my teammates. Of course, I ended up getting hurt in the first game of the year and didn’t play another minute.

I never drove myself crazy trying to be a perfectionist. But when I did identify something as important, I would work as long as it took to get it right.

The high point of my life was the day Maddie was born.

I gave up on ties long ago. The front buttons on a shirt take a while, but I’d still rather do them myself while I can. I have to button my left cuff before I put my shirt on, because I can’t do it using only my right hand. Luckily, my skinny left hand slips right through.

I put orthotics on my feet to help with walking. They are plastic supports that go under each foot and up my calves and strap on with Velcro. I have to put long socks on first, then the orthotics, then another pair of socks over the orthotics, then I squeeze into my loafers. It takes me about an hour before I can sit down and have my wife give me my drugs and “breakfast” through the feeding tube.

Courage is the ability to block out consequences and do what you think you have to do.

Aside from her being beautiful, I love my wife’s sense of humor. I love how smart she is. I love how she just gets things. I love how she’s raised Maddie. I love her decorating sense.

My image of God is as a good guy who knows that I’m a pretty good guy, too. So even if I don’t go to church every Sunday, I’ll still be welcome in heaven.

The low point was actually a year and a half ago. I had just gotten a diagnosis of primary lateral sclerosis. PLS is similar to ALS but can take up to twenty years to fully disable someone. It’s very rare. About one in ten million. So I was a little dubious. In the back of my head I thought the possibility of it being ALS was more likely. I remember walking around the Upper West Side near Central Park during lunch one day and convincing myself it was ALS. I saw a homeless guy lying on the sidewalk and thought, That guy is healthier than I am. It was confirmed as ALS in June.

It’s hard to describe ALS. If you read the clinical description of amyotrophic lateral sclerosis, you’d think it’s the most horrible disease you can have. But living through it is different than that. Maybe it’s because I have always tried to look on the bright side of things. Maybe it’s because I can still get around somewhat. Maybe it’s the Zoloft. But I figure if you are going to die young, ALS at least affords you the opportunity to do some of the things you always wanted to do. And it gives your friends and the people who love you the opportunity to let you know how they feel while you can still interact with them.

The disease itself is almost surreal. Everything weakens so gradually that you almost get used to it. If I had woken up one day feeling like I feel now, I’d be freaking out. But it’s played out over time. Now I think, Well, I almost didn’t make it up that step. I guess I won’t be able to walk soon. It almost seems like the natural order of things.

My father was forty-seven years and two months old when he died. If I make it to July 2008, I’ll have my father beat by a month.

One piece of advice I’d give Maddie is to not be afraid to take chances. I’ve always been very cautious, and I sometimes wonder if I could’ve been more successful if I hadn’t played it safe. Of course, I could have crapped out if I’d taken the wrong chance. But there is such a thing as playing it too safe.

No regrets, though, because every decision I made in my life led me to Madeline and Maddie.

http://www.esquire.com/features/what...tzpatrick-0308

Hi Mr Fitzpatrick,

My name is Gianmarco Maximilian Giacomelli, but I go by Max. I'm 23 years old, I graduated from University in Halifax, Canada in October 2007 and have been working as a financial analyst since. I have 2 parents, 2 sisters, 1 dog and 1 cat.

I was diagnosed with monomelic amyotrophy (MMA) about 5 years ago when I was 18. It was explained to me that it is similar to having ALS but just in your hands and arms (but eventually it stops getting worse... supposedly. I guess that doesn't really seem like ALS at all.)

I was flipping through the March 2008 Esquire (that's been sitting in my bathroom for 4 months now) and came across your interview. I just wanted to let you know that your honesty is much appreciated - it's first of all hard enough to find someone willing to speak out about a debilitating disease, but your honest and analytical approach is inspiring.

Congratulations on making it through July 2008 and beating your father,

Max