A Tale of Two Young Men

Labor Day weekend, and time for the Muscular Dystrophy Telethon. As a child, I remember watching Jerry Lewis raise money, with the help of his celebrity friends, for the fight against MD. They were compelling and I was determined to do my part, because ... well, Jerry and his famous friends wanted me to.

Today, the fight for Muscular Dystrophy and Labor Day weekend have a much more personal place in my heart.

Meet Chris.

He's the one in the wheelchair. 

(The goofball next to him? That's Alex, my youngest son. Oh, and because he's a goofball, he decided that in this picture, from their high school graduation, it would be fun to give Chris bunny ears. And if you look closely, you'll notice that since Chris couldn't return the favor, Alex gave himself ears - or at least tried. Then there's that whole loser thing ... )

Alex and Chris met in elementary school, when Chris got his first chair and needed someone to carry his books and assist him with the elevator. Alex was quiet and shy, not quite fitting in. The teacher thought that maybe this would help get Alex out of his shell.

And thus began a lifelong friendship. On field trips, Alex would ride the wheelchair accessible bus with Chris. Alex spent a good portion of his summers with Chris doing crafts, playing video games, making rockets, exploring — you know, normal boy stuff.  Alex accompanied Chris at the local MD telethons - even ending up on camera. 

One of Alex's junior high teachers told us Alex needed to get some "normal" friends, she thought the friendship with Chris wasn't healthy. Say what?! Define 'normal' ... Define 'healthy' ...

For their last day of high school, when the senior class traditionally parades onto the school grounds in decorated cars, Alex decorated and drove the van so Chris could take part in it — I mean, who wouldn't rather drive a wheelchair mini van instead of a two door coupe at a high school event? They had a joint graduation party at Chris' house. When Alex went off to college, he looked at residence halls with an eye on which had elevators and would be accessible for Chris to visit. 

For Alex's first birthday, away from home, we surprised him with a dinner at Applebee's — selected for its accessibility. Ironically, in college, Alex encountered a group of students working to raise awareness that the university's historic academic buildings weren't accessible. They were blocking the door Alex was going to enter, telling him he needed to find the handicap entrance to better understand the needs and challenges of those in wheelchairs. From what I understand — the students got an earful and Alex used the door they were blocking. 

When Alex and Chris attended board game nights, Alex devised a way to hold Chris' cards so that Chris could participate when he could no longer use his hands. 

And when it was time for Alex to graduate from college, he made sure special arrangements were made so that Chris could have seating on the field, and asked Sue, Chris' mom, to host his graduation party so Chris could be a part of it.

Don't get me wrong, Alex wasn't a saintly kind of boy (a description Sue gave him) and doing this for show or brownie points. Alex and Chris had an extraordinary friendship that benefited both. Alex wasn't above telling Chris that just because he was in a wheelchair didn't mean he had the right to be a jerk. And he'd call Chris out if he thought he was being mean to his mom, reminding him that he depended on her and needed to be nicer (this may be why Sue thinks Alex is a saintly kind of boy. More on Sue later — she deserves her own entry.) 

You see, where others saw a boy in a wheelchair, Alex saw a person. A person with special needs and limitations, but a person none the less. And eventually, that person, and his family, became our family. Shared holidays, end of school year bonfires, birthdays, outings, weekends ... what had started out as Alex helping a student, in elementary school, turned into something that none of us could have imagined.

Throughout all of this was the underlying reality that Chris had Duchenne Muscular Dystrophy, a particularly cruel disease that affects mostly males and is faster in destroying the body's muscle. Chris' life expectancy was 18. There was no denying the inevitable.

When the boys were in high school, I'd try to bring up the subject with Alex — did he and Chris discuss what was coming? Alex would tell me "Mom, Chris and I don't talk about this. He has other people who want to talk to him about depressing stuff. We do happy and fun. I'm his friend. I'm focused on him today." So we braced ourselves. Convinced that when the time came, we were going to have to pick up the pieces. 

Chris surprised us, which shouldn't have surprised us. He lived past 18, then 20, then 24... His spirits never flagged even when his body was giving up.

That was then.

On Saturday morning, September 3rd, 2011, I received a call from Sue telling me Chris was dying and he wanted to make sure Alex was told. She understood that Alex wasn't comfortable with death and didn't expect him to come, Chris just wanted to know that Alex knew. So I called Alex, then held my breath. Unsure of how Alex would respond.

Alex surprised us, which shouldn't have surprised us. He said there was no where else he needed, or wanted, to be but with Chris. He  went and helped Sue tend Chris, shh-hing visitors if Chris was sleeping. Never leaving his side all day and into the evening as visitors came and went (that's him in the background, keeping guard.) At one point I walked in and witnessed Sue and Alex working, as a team, to cool Chris down with cool wet towels, trying to make him as comfortable as possible.

Was this my son? Mopping the sweat off his friend?

It was about 6:00 that evening when Sue left Chris' room to alert someone else the end was near. After Sue had gone, Chris woke, asked Alex to stand where he could see him, and then said good-bye. Chris was 25.

Two years ago today, on the Saturday before the MD telethon, I watched, in awe, the strength of two young men. Two men who surprised us, first as boys, and now as men. One courageously coming to the end of his life ... the other courageously trying to ease that transition. 

It was a rough day. My heart still breaks when I think of what my son experienced and yet I couldn't be prouder of the man Alex proved he was. 

Because of his lifelong friendship with Chris. 

A life that just wasn't long enough.

And so, this weekend, I make my annual donation to the Muscular Dystrophy Association and designate it for Duchenne research. 

I do it out of love for two incredibly strong young men.

I do it in memory of Chris. 

I do it in honor of Alex.

I do it in the hopes that this story won't be repeated in the not too distant future.

Alzheimer's, It Giveth and Taketh Away

There are two women in my life who's strength, patience and love are something I wish I could emulate. I try, but they are a tough act to follow.

Aunt Nancy, Marilyn and my mom

While there are a lot of reasons to admire them, it has been their ability to remain calm, in the face of a loved one with Alzheimer's, that leaves me speechless. And not just with one person, but two. So while the disease robbed one, and is now robbing another, loved one of their memories, it has given me two women who have taught (and continue to teach) me a great deal.

Marilyn
In 1975 my grandfather remarried after my grandmother passed away. I wasn't sure how I felt about it at the time. I worshiped my grandmother and, as the oldest grandchild, always sensed I occupied a special place in her heart. But I love Marilyn, she had been a part of the family for as long as I could remember, and she loved my grandfather. Of that I have no doubt. What should have then been years of them growing old together, became years of Marilyn dealing with my grandpa's decent into Alzheimer's, devoted to him until the end. And while, in the beginning I wasn't ready to let someone else fill my grandmother's shoes, I have always felt that my grandfather and our family were blessed to have Marilyn be a part of it then, and now.

Aunt Nancy
My mom and my aunt, both widowed, decided to sell their individual houses and jointly build one in 2003. They were living alone, I was 300 miles away. The grand plan was for them to travel, quilt, craft, entertain and enjoy keeping each other company. In 2006 it was becoming obvious that my mom was losing her short term memory. She told people she'd had mini strokes. The sad reality? CAT scans showed there were no strokes ... dementia was setting in. And my aunt slowly became less of a companion to my mom, and more of a caregiver. I've watched her, over the past few years, trying everything she could to keep a sense of normality as well as slow the process that was ravaging my mom's brain. All this while her sons began families and her dream of becoming a grandmother came true.

I don't know how she did it. I really don't. I've spent weeks with my mom while my aunt traveled. It wore me out.  More mentally and emotionally than physically, although I'm not going to say there wasn't a physical response to the mental and emotional strain.  And that was only one week at a time, or a few days here and there. But otherwise, I could be in my remote bubble, 300 miles south, and not focus on what was happening with my mom.

Until now.

Recently I moved my mom closer to me. To a facility where she is comfortable and well taken care of. I did it so I could see her more. I did it so my aunt could focus on her five grandchildren (number six is on the way) and herself. I did it so I wouldn't feel as powerless as my mom slipped further and further into the past. But unlike Marilyn and Aunt Nancy, I have the 'luxury' of knowing that a skilled staff is caring for my mom between my visits.

So there you have it - four women, all affected by Alzheimer's, although only three of us remember. A husband, father, grandfather, and now a sister, dear friend and mother. I look at my aunt and Marilyn and use them as a model when I think I can't cope with my mom.

Someday, I hope to have the patience and strength they've shown. But that's a tall order and I have a long way to go. In the meantime, they get filed in the box, in my brain, labeled "Heroes."

My Father, Myself - Part the First

I miss my dad — it's been 37 years that he died semi-unexpectedly.  I guess, more appropriately, he died suddenly — it's just that we'd been waiting for almost 20 years for the inevitable.

He died of his third heart attack. One he couldn't have survived, based on the previous two and the scars they left years earlier.  My last phone conversation with him had been along the lines of "is mom there?"  It never occurred to me that shortly after that call, he wouldn't be.

We didn't always agree on everything, what parent-child combination does?  But, he was my champion and no matter what, would have fought dragons to defend me (even knowing at times that I had provoked them.) But I believe, after the struggles he'd been through in his own life, he was determined to protect me.  As he had his family and his country long before I came along.

Dad was the youngest of seven children born to parents who had immigrated to the United States to flee the turmoil in their native Hungary.  He grew up during the Great Depression.  He served in the Army Corp of Engineers on the front lines in Europe during World War II. Helping to build bridges and roads for Patton's troops, only to watch them be demolished after the last truck and soldier had crossed.

My father didn't talk much about his early life, as though it was something to forget, and he certainly didn't talk about the war, unless it was with someone else who had shared that experience.  In fact, he was so determined to leave the past behind that he changed his birth name to something more "American". And he never understood my desire to go to Europe when I lived in the greatest country on earth (cue Kate Smith singing God Bless America)

One of the greatest gifts I have been given (just too young and stupid to know it at the time) was a visit my dad and I had with a vice president of the university I attended.  This man had also served in Europe during WWII and I sat and listened as he and my father talked about their common experiences in Luxembourg, France and Germany.  And all I could think was "jeez dad, why are you talking about drinking and cavorting along the Seine with a university V.P.?"  I was too embarrassed to realize that what I was getting was a glimpse of my father, that rarely saw the light of day and few knew existed.

On occasion I would encounter that long-retired V.P. and every time I did, I thanked him for the gift he'd given me that summer day in 1979.  I leave out the part where it took me 10 years to receive it — a year too late to tell my dad how much it meant to me.

So dad (I know you're there, watching for dragons, lance at the ready): thank you.