Monday, March 26, 2012

Fighters

It’s hard to reflect on my dad’s illness and see light through such a dark, threatening cloud; but believe it or not, it’s there.

I know things that I didn’t know before. I know there is a disease called ALS. It is horrifying, ruthless, and fatal. It is also underrepresented, miserably underfunded, and completely foreign to most people. Full disclosure: if I didn’t lose my dad and a favorite uncle to it, I’d know as much about ALS as most people – almost nothing. I only wish the lesson wasn’t learned at the expense of their precious lives. (An aside… my dad and my uncle were not related by blood; they married sisters and just happened to meet the same unthinkable fate. ALS is a rare disease? I’m not so sure about that.)

I also know people that I didn’t know before. I have met and become friends with some of the boldest and most inspiring people I’ve ever met in my life, and all of them have been affected by ALS in some way. Some advocate in memory of loved ones. Some are caregivers. Others stare the beast in the face and suffer its beating every day. They are all filled with hope, determination, strength, and grit, and I am proud to know them.

Someone once said that being involved in the ALS community means certain heartbreak and, sadly, that’s very true. There is no treatment or cure for ALS. The story never ends well, and the struggles people with ALS endure don’t end with the physical symptoms of the disease. People with ALS are forced to fight from every corner of the ring. They fight to stay alive. They fight to earn a living in spite of a body that forces them to stop working. They fight to pay unthinkable medical expenses. They fight to keep a roof over their head. They fight to feed their family. They fight and fight and fight, and it is brutal to watch. It is the heartbreak I was promised.

This is my friend, Brian.


Four years ago, Brian was a hard-working man with a home, a wife, and four kids. In August 2008, he noticed a slur in his speech. In April 2010, he was diagnosed with bulbar onset ALS. His symptoms progressed and he was forced to leave his job in September of the same year. He was 46 years old.

Imagine being 46 and realizing you can no longer support your family. Imagine watching your safety net grow smaller and smaller until it barely covers a portion of your monthly bills. Imagine swallowing your pride and soliciting funds to help cover the cost of your funeral services, just so you can rest knowing that you’ve spared your family of one layer of despair when your fight is over.

Brian doesn’t have to try to imagine any of this. He is a fighter. He lives it. You can learn more about him by checking out his incredible blog.

This is what ALS does: It robs the body, spares the mind, emotionally tortures loved ones who watch helplessly, and absolutely devastates families financially. No amount of saving or careful planning can prepare a family for the unbelievable expense of caring for someone with ALS. When your mortgage reflects what you could afford as a healthy, employed person with a steady income, what happens when your body forbids you from working? What happens when you exhaust every cent of your savings on basic living expenses and the incredible cost of addressing your illness? What happens if you don’t have family that can help shoulder the load of these expenses? What happens when your spouse can no longer work because he or she needs to provide your 24-hour care?

The bank proceeds with foreclosure. That’s what happens. It is a brutal, unjust reality of ALS and it happens every… single… day. Just ask Brian.

My parents were lucky in this respect. My dad had access to long-term disability. My parents had no mortgage or other debt. My dad could access his pension. They managed to face ALS without hitting the low notes of poverty, but they were an anomaly. A man in his forties with a wife and kids and no other source of income or assistance doesn’t stand a chance. Terrifying, heartbreaking, and unbearably true.

This is why my family and I plunge and walk and Zumba and attend events and rally like mad to get funds together – because we’ve seen it, we know, we get it. And this is also why I’m humbled to tears when friends that only had a peripheral view of my dad’s illness stand up, get involved, and make some noise with us – because even from the sidelines, they manage to get it, too, and that blows me away. I never, ever take the noise they make for granted.

Warm and toasty with Darren and friends Greg, Dave, and Marc on the Manasquan boardwalk, minutes before the Valentine Plunge for ALS (02.04.2012).

In the water! Air and water temps were around 42 degrees. It was cold, but it was awesome.

I can’t be of any use to my dad anymore and that kills me, but I can do the best that I can in his memory to help someone who is traveling this hideous road. I can spread the God awful truth about this disease and the fight it imposes on so many good, unsuspecting people. I know my dad would want that and I know it would make him happy. Please visit Brian’s blog and share his story. Remember his fight, and do whatever you can to help him or someone like him.

Monday, December 5, 2011

Care for a Swim?

Last February, Darren and I packed a bag full of bathing suits, towels, and bathrobes; bundled up; and drove off in the freezing rain to one of our favorite little towns on the Jersey shore. What were we doing there? Spa weekend? Couple’s massage? Hot tub and cocktails? Oh no. We were there for a swim.

In the ocean.

In February.

And we weren’t alone.

We parked in front of the little house we lived in before we were married, walked two bone-chilling blocks to the beach, and weaved our way through a crowd of people milling around the boardwalk. They carried their own bags of bathing suits, towels, and bathrobes, and their faces shared our expression of “Holy Christ… look at the snow on the dunes.”  

Everyone smiled and laughed nervously. Hugs and pats on the back were exchanged. Flasks were shared. It was freezing; but the camaraderie was awesome. We were there for the Valentine Plunge for ALS. In one way or another, every single person on that boardwalk had been affected by the beast, and we were there to prove to anyone who would listen that we’d do anything to raise funds and awareness, including a dash into the icy Atlantic in the middle of winter in little more than our dainties.

Three of our very good friends huddled nearby, waiting for us to arrive. Two volunteered to take the plunge with us, and the other submitted herself and her insane photography skills to the freezing sand. I could not believe that they (and my awesome cousins Kelly, Brittney, and Zack) climbed aboard this event without ever being asked. Anyone who offers to freeze his or her ass off in support of your cause really likes you and really liked your Dad. To say that I am humbled is an understatement. I know my Dad would say the same.
From left to right - yours truly, Darren, and good friends Dave and Greg. Pre-plunge, 2011.
After a few minutes of chit-chat, we made our way into gender-assigned tents to strip down to our bathing suits and then onto the sand to wait for the whistle to blow. Is the waiting truly the hardest part? Hell yeah, it is. The sand was unbelievably cold. A bolder woman might have focused her energy away from the fact that, toe by toe, sensation was seeping out of her feet; but not me. Instead, I hopped ridiculously from foot to foot until the whistle blew. When it did, adrenaline took over and slaughtered the cold, and we ran like maniacs toward the waves. I remember laughing hysterically at the chorus of screams as our feet hit the water, and I still laugh out loud every time I think of it. I made it into the ocean up to my shoulders and then bolted for the sand, back to my friend Catherine who was snapping pics and guarding my robe.

I was in and out of the water in much less than a minute; but it was one of the most amazing minutes of my life. Sounds dramatic; but it’s true. I liken it to how I felt after I had Madeline. I was so high on endorphins after I delivered her that I felt nothing – not fatigue, not needles, not stitches – but bliss. That’s exactly how I felt after the plunge. Cold, shmold… this was a blast, and I can’t wait to do it again in 2012.

The friends who joined us last year know exactly what they’re in for, and they’ve agreed to join us again anyway. (In Viking hats, no less.) Perhaps you would like to join us, too? It’s cold; but it’s incredible and I’ll buy you a beer afterward. If you can’t bear the thought of plunging, then cheer us on, donate, and/or think warm thoughts for us. We’d appreciate any of the above. Save the date (02/04/2012) and stay tuned for more details!

Tuesday, October 4, 2011

New, Different

I am appalled that it’s taken me almost four months to update my blog. When I first kicked off this little campaign, the goal was to post one new entry every month. Seemed manageable enough, and it really should have been; but I’m not too proud to crack open the tome of excuses. Ready? Work went from zero to insane overnight; the house was a mess; clothes had to be washed; meals had to be made; and the kids needed to be read to, played with, fed, bathed, and snuggled off to sleep every, single night. (Not that I did any of this alone. Darren is always right beside me in the daily blitz, helping to do every little thing that needs to get done. He is a gem, and soon, there will be an entry all about him and the many ways he helped my dad these past years. You will love him.)

And then there was Father’s Day. I knew it would be hard; but I had no idea the raw, crushing grief that I felt last October would come back with such fury. There were many times on Father’s Day when I wanted to sit and write about my dad; but every time I switched on my laptop, I saw this and froze:


I set this photo as my background image the day my Dad died, while I sat cross-legged on my bed and wrote his obituary. Photos were a godsend that day, and in the days and weeks that followed. I poured over them, desperate to see his healthy face and the curl in his upper lip, and desperate to scrub away the memory of him in the hospital. Pictures had been so cleansing, so healing; but on Father’s Day, they were just a cruel reminder that they were all I had left.

The rational solution might have been to change my background image; but I couldn’t bear it. Instead, I redirected my energy and set off on a mission for a Yankee-themed bouquet of blue and white flowers for Dad’s crypt stone. The woman behind the counter of the flower shop was young and warm and chatty, and she asked me about my dad. I told her that he had ALS and, for the first time ever, a stranger knew exactly what that meant. One of her regular customers was diagnosed almost two years ago and she had watched him deteriorate with every visit. She put a hand on my arm, told me how sorry she was, and hurried about the store in search of navy and white ribbon. She even Googled the Yankee emblem, printed and laminated it, mounted it on a pick, and placed it carefully in the bouquet. It was perfect. I thanked her and headed off to the mausoleum for quiet time with Dad. A very different Father’s Day, indeed.

The summer months that followed zipped by in a blur and, like Father’s Day, they were just… different. Once upon a time, every summer weekend was spent at my parents’ house – swimming, grilling, watching Ellie run and play with her cousins in the yard, lounging on the deck, and talking with Dad.  I loved every minute of it, especially the talking-with-Dad bit. He was so relaxed and down-to-earth. He liked to talk and he liked to listen. He liked to share and he liked to learn. But above all, he loved a good story. Darren and I would tell him about goofy things that happened with the kids, friends, or work, and he would throw his head back and laugh. I loved watching my dad anticipate the punch line of our story. He listened intently, grinned, and his eyes changed as we spoke. We knew that our words were taking form in his mind and he was right there with us, feeling the hilarity of the moment first-hand. Not many people listen like that. He was so unique, so special. Sadly, both seem to be prerequisites for this shitty disease.

Darren and I brought the kids over to my Mom’s to swim and play and lounge on the deck twice this summer. Twice. That’s it. Call me selfish – I know the kids would have loved many more trips to the pool – but I couldn’t stand the Dad-shaped void on that deck. I couldn’t stand not hearing the announcer of the Yankee game over my dad’s portable radio. I couldn’t stand not lounging in a seat next to him and watching him anticipate the punch line of my ridiculous story. I usually love summer. This year, I couldn’t stand it.

I have missed the catharsis of writing about him and I’d love to get back to making a little noise for ALS, so the plan now is to do a much better job at populating this blog. I love reading your comments, and I’m so grateful for the (surprisingly many) people who reached out to share their experience with ALS or offer words of encouragement. More to come soon, so please keep reading!

Tuesday, June 7, 2011

A Quick Note...

Hi everyone,

In keeping with my knack for timing, Blogger crashed the day after I published my first post. There were a handful of people who left incredibly kind and encouraging comments, and a few of you even opted to "follow" my blog. Sadly, your sweet words were a casualty of Blogger's technical issues and my followers were dropped. (Hmph...) Please know that I read and was touched by every comment. Thank you so much for taking the time to read my posts and reply!

More to come,
Erin

Friday, June 3, 2011

The Story of Grampa

It’s been pretty fascinating to see how people respond to someone who is grieving. Some approach you so cautiously that you wonder if they think that grief somehow managed to render you insane. Some people use their faith as a catalyst for conversation and, when it is done well, it can be incredibly comforting. After all, who wouldn’t want to believe that the people we’ve lost are safe, surrounded by love, and waiting patiently for us on another plane? When it is not done well, it can be absolutely infuriating. (Take, for example, the woman who suggested I not cry at my father’s wake; but be glad that God was merciful. I wanted desperately to tell her that I failed to see the mercy in a 57-year-old man dying from respiratory failure because he no longer has the strength to cough; but I thought better of it. I knew she was only trying to be nice.) Some people skirt the issue and say nothing. Others ask how you’re doing and just let you talk.

As luck would have it, I happen to live with someone who asks how I’m doing and just lets me talk. Anyone who knows him would agree that my husband, Darren, is hands-down the world’s greatest listener. He doesn’t always know how to respond to what’s being said and he doesn’t assume to have the answers to everything, and I love that about him. He just makes it clear that he cares, he’s listening, and he’ll gladly keep listening for as long as it’s needed. And the best part is that he shies away from nothing. Losing my dad has made me stop and think about things that I would have liked to ignore for a very long time. When these thoughts creep into my head, I know that Darren can handle hearing them and will take them to heart. I think the following serves as a good example:

Me: Listen… If anything happens to me, you should know that I want you to be happy, and I’m completely fine with you meeting and dating someone. You can even marry her.

Darren: Nothing is going to happen to you, Sweetie.

Me: Probably not, but we’re not immune to tragedy. I want you to do whatever you need to do to be happy if the worst happens. Just promise me this… Promise you won’t ever let the kids call her Mommy. They can call her anything they want; but they can never call her Mommy. Think of some other clever name for her.

Darren: Exactly how clever are we talking?

Me: I refuse to name her.

Darren: I’m joking! Erin, I would never let them call her Mommy, and there will never be a “her.” This isn’t something you need to worry about.

Me: I know. It just terrifies me to think that if something happened, they would hardly remember me. Please don’t ever let them forget me. Show them pictures, talk about everything we did together, tell them five times every day that I loved them more than anything. That’s the last thing I’ll ask, and then I’ll stop talking about this. Please promise you’ll do everything you can to help them remember me.

Darren: Of course I will.

Me: And promise me you’ll always tell Madeline the Story of Grampa.

Darren: (Quietly) Aw, sweetie... I promise.

The Story of Grampa is a string of sweet little notes about my dad that I whisper to Madeline as she falls asleep at night. She was only 11 months old when he died, and it crushes me to think that she won’t have vivid or even vague memories of him, especially since she loved him so much. Every time we stopped by for a visit, she’d waste no time darting to his room on all fours, letting out funny little shrieks and squeals along the way. When she finally reached his room, she would stop in the doorway, lift a tiny hand off the floor, point to him in his wheelchair, and babble up a storm. Sometimes, she’d get so excited that the volume of her little voice would rise and she would look like the world’s tiniest drill sergeant, pointing and barking orders at my defenseless dad. He would stare wide-eyed at her and laugh, and his response was the same every time. “Are you yelling at me again, Maddie? Why do you always yell at me?”

I will never forget the bitter sting of watching as she made her way to my dad’s room after he died, stopped at his doorway, and pointed to the spot where he used to sit. Grampa wasn’t there, the space where he parked his wheelchair was empty, and the soft scent of his shampoo hung in the air. Madeline’s buddy was gone, and watching her stare into the ether, looking for him, was excruciating.

And that’s why the Story of Grampa is so vital. Madeline needs to hear it so that she always knows that once, there was a man, he sat in a special chair in a special room, his name was Grampa, and she loved him. If, God forbid, I can no longer tell her the story myself, I have to know that somebody else will.

The Story of Grampa varies and is really never the same twice; but in a nutshell, it goes a little something like this:

Do you remember Grampa, Madeline? Grampa had dark hair and the most beautiful brown eyes I’ve ever seen. They were clear and soft, and had little flecks of gold in them. Grampa’s top lip curled when he smiled, just like yours! When you were a baby, you would stop crying the second you were propped on his lap, and you loved to talk with him and play with the wheels on his wheelchair.

Grampa was strong and healthy, and he loved to ride his bike to the inlet with Grammie and go for walks on the boardwalk with her. Grampa could shoot pool like nobody’s business, and he never, ever lost a game. (Except for the night when Daddy asked him if he could marry me. Grampa was so happy, he let Daddy win!) Grampa loved to take care of the yard and the pool, and he liked to listen to the Yankee games on the radio while he worked outside. He loved sweets, just like Mommy! Chocolate chip cookies were his favorite, and he gobbled up M&Ms by the handful.

Grampa was so smart, and he traveled all over the world to help the Nestle plants work better. He was never boastful; he was quiet and modest. He was liked and respected by everyone who met him. He worked hard. He was brave. He loved you and Ellie so much, and he told you so whenever he said goodbye.

Grampa found out that he was sick, and when the doctors couldn’t make him better, God brought him to heaven and made him better there. He doesn’t need a wheelchair anymore; he can walk, and use his hands and his arms again. He claps for you when you learn something new, he sends you kisses when you sleep, he is proud of you every day, and he looks after you to make sure you are safe and happy.

No matter how it begins or how it progresses, the Story of Grampa always ends with me pleading with my dozing baby, “Don’t forget him, ok, Madeline? Please, please try your hardest to remember him.” I realize that’s a very tall order for such a young person; but it’s worth a shot, right? And who knows… maybe one day she’ll be graced with a flashbulb memory of him; she will recognize the dark hair, soft brown eyes, and curled upper lip; and, thanks to the Story of Grampa, whether told by me or by Darren, it will occur to her… “I remember him. He sat in a special chair in a special room. I loved him and he loved me.” And she will miss him; but she will feel lucky and proud to have had him in her life. Just like her mom.

Thursday, May 19, 2011

You Can Write About It

In the spring of 2007, I was asked to travel from New Jersey to Atlanta to meet with a client. The trip would be a quick one. A car service would pick me up at the ungodly hour of , drive me to Newark Airport, and leave me there to wait two hours for my flight. I’d arrive in Atlanta, take an hour subway ride to the client’s headquarters, attend a two-hour meeting, and fly home. There and back, all in one exhausting day.

I had been designing training for a local consulting firm for the past 3 years, and our client was one of the biggest broadband and cable providers in the country. The trip seemed excessive and more than a little ridiculous. Obviously, both parties had the technology and savvy to conduct our meeting virtually; but I understood. Sometimes, the client just needs a warm body to smile, rest a hand on a weary shoulder, and say, “everything is under control.” And sometimes, the client just wants to scream at you. You never know until you get there.

I managed to get an inadequate two hours of sleep before it was time to wake up and get ready to greet my driver. I arrived at the airport, downed a surprisingly good cup of coffee, and plowed through two magazines before I finally boarded the plane. I sunk into my seat, lifted the window shade, settled my gaze on the tarmac, and let my mind drift. I thought about the adorably wacky things my little Ellie says and does (she was just a few months shy of her 2nd birthday and full of character); calculated the ratio of commuting hours to face time with the client (14 to 2?!); marveled and even seethed at the absurdity of said ratio; hoped my laptop behaved during the meeting and that, by some freakish mishap, I didn’t end up projecting the video of Ellie, clad only in socks, shaking her little hiney for the camera before her bath; but mostly, I thought about my dad.

Only days before, I had dropped Ellie off at my parents’ so they could watch her while I was at work. When we stepped inside their house, my mom walked quickly to the living room and asked if I could help her. My dad had fallen in their bedroom and she couldn’t lift him off the floor on her own. I set up blocks to keep Ellie busy and followed my mom to her room, where my dad was resting on the floor between the foot of the bed and the dresser. After he fell, he found enough strength to sit upright, face the bed, and get to his knees; but that was it. His arms were folded on the mattress in front of him and his head was resting on his hands.

I put my hand on his back and said, “Hey, Dad.”

“Hi, Erin,” he said as he lifted his head toward me. He looked completely exhausted and utterly defeated. “I’m having a little bit of trouble here.”

“I know. Let me give you a hand.” I straightened my backbone and tried to appear nonchalant as my mom and I each chose a side, hooked our arms under his, and used all of our combined strength to lift him off the floor and seat him on the edge of the bed. We positioned his walker in front of him, braced him as he carefully stood, and followed his cautious steps out of the bedroom, down the hallway, and into the living room where his lift chair waited for him.

When we reached the chair, my mom lifted it as far as it could rise and we helped my dad pivot his walker so that he drop carefully into the seat. Once he was safe in his chair, I kissed Ellie goodbye and told her to be a good girl. I climbed into my car, drove to work in deafening silence, quietly said good morning to the receptionist, sat at my desk, and cried. I couldn’t believe what had just happened.

Anyone who reads this might think I’m talking about a man in his eighties; but I’m not. My dad was 55 at the time. Fifty-five. Only two years before, his fit, athletic body was the picture of health; but now, it was swiftly being wrecked by ALS (aka Lou Gehrig’s disease) and I knew that what I had just witnessed was only the tip of a fast-melting iceberg. We all knew the road that stretched ahead of him – we had already watched my Uncle Ed travel down it. I knew that it wouldn’t be long before we would look back on the good old days when my dad still had use of his hands and arms, and they would feel like a dream. Things would never get better for him; they would only get more and more terrifying.

As I sat on the plane and reflected on that miserable morning, my eyes brimmed with tears and, surely to the dismay of the man sitting beside me, I leaned my head against the window and sobbed. I wondered what must run through my dad’s mind every time he realized another freedom was gone for good, and I wondered how scared he must be every, single day. I felt absolutely useless. I could help my dad off the floor and down a hallway. I could dial the phone or turn the Yankee game on for him. I could feed him a bite of his sandwich or give him a sip of his coffee; but all of that felt so small. I wished I had the authority or knowledge to do something meaningful for my dad; but I couldn’t think of a single thing.

And then, as clear as if someone had leaned over my shoulder and whispered in my ear, I heard the words, “You can write about it.”

I jerked my head toward the man beside me only to find him all-at-once trying to ignore me while eyeing me nervously with his peripheral vision. He was clearly not the one speaking to me. But someone or something did… and it made so much sense.

From a medical perspective, I am of no worth to the ALS community; but I can write. I decided on that plane, in the throes of 14 hours of travel for a 2-hour meeting, that I would put my dad’s story out there. Maybe a handful of people will read it, maybe nobody will… I don’t know; but it’s something. If one person walks away from it having learned something about the havoc ALS wreaks on those afflicted and the people who love them, I’ll consider it a win for awareness. (And believe me… the orphan that is ALS needs every win it can get.)

A lot has happened since that trip to Atlanta. I had another baby girl, Madeline, in 2009; I switched jobs; and I said goodbye to my brave, handsome Dad four months before he would have turned 58. I deeply regret that it took me this long to start writing – I think my dad really would have liked reading my blog and I imagine there were things he would have wanted me to say for him. But I feel him with me frequently, and I hope he feels free to be my muse.

I don’t plan to spend a lot of time with clinical speak about the disease. I’ll leave that to the eloquence of the good folks at ALS Therapy Development Institute. I’d rather use this blog as an opportunity to introduce you to my dad; tell you a little bit about him, what he went through, and the courage that never wavered; and talk about how life carries on without him. I miss him every minute of every day; I loved him more than I can tell you and I always will. I bet that you will fall in love with him, too.