Let's go back to a few months ago when I received a Facebook message from my cousin Melissa. A little background: Melissa is my second cousin, our fathers were first cousins and grew up like brothers, Melissa's husband John was diagnosed with ALS just a few months after my dad was diagnosed and passed away from the disease in 2012, about a year after my dad passed away. Our unfortunate shared experience with ALS culminated in the Facebook message I received from her in March in which she announced that she was taking the train from New York to Washington DC to storm the Capitol and demand support for funding for various legislative bills that would benefit the fight against ALS. Oh, and it just happened to fall on what would have been their 20th wedding anniversary. Holy emotions.
Yes! I thought, floored by her enthusiasm and willingness to jump into the great unknown. What a fantastic idea! Before I knew what I was doing I had signed up too and began my journey as an ALS Advocate. I had no idea what that meant, but I was excited. Recently I've been stepping out of my comfort zone in various areas of my life. What was one more leap of faith?
Last Wednesday I found myself in a large conference room at a fancy hotel, surrounded by people in various stages of the disease and their families and caregivers. When Melissa entered the room, running a bit late due to a taxi snafu at the train station, she looked a bit shell-shocked. "The man over there reminds me so much of John," she whispered as she sat down beside me. Thus began our two-day journey into ALS Advocacy.
We sat through three hours worth of presentations about the latest research, the issues at stake, and finally, what to expect when we actually went to Capitol Hill the next day to champion our cause. At times the microphone was handed to someone with ALS to ask a question and the slurred and labored speech that followed brought back painful memories of my dad's struggles to speak. A little girl sitting next to me doodled in her activity book she had received in her kids' ALS tote bag. She whispered to me "This is a bad sentence." I looked over to see that she had drawn a big black line through a statement that read "Everyone who is diagnosed with ALS will eventually die from the disease." A harsh reality for a ten year old accompanying her grandmother who has had the disease for an unusually long time, over 25 years. Most ALS patients die within 2-5 years. My dad lasted less than two. Melissa's husband, two and a half.
ALS has a zero survival rate. What other disease has that awful prognosis and such a short life expectancy on top of it? There is literally no hope for these people. This is why ALS Advocacy Day exists - to provide hope for the future of this disease.
As Melissa and I soaked all of this in, it became clear that it was time for a drink. Melissa picked up her Mary Poppins-esque overnight bag and off we went. We headed up to the hotel bar which was already filled with other advocates imbibing and sharing stories about our common enemy. I marveled at the lady who had a power chair that literally lifted her up into a standing position so that she could be at eye level with her friends and actually put weight through her legs. Melissa and I lamented over the fact that we had seen so little of each other over the years. We vowed over vodka tonics and summer ales that we would get together more often, that our children would finally meet, that the bond formed between our fathers, Lithuanian immigrant cousins of the post WWII era, would live on in future generations.
Then it was time for dinner. We had to go our separate ways since Melissa was representing greater New York and I was representing Northern Virginia. We went into our separate meeting rooms to meet with our respective delegations to prepare for our day on the Hill. I was a little disappointed to be separated from my cousin with whom I was feeling a long forgotten connection, but decided to treat this as the adventure that it was.
The first person I encountered in my DC/MD/VA room was the woman who led the caregiver support group that my mother had attended during the dark days of ALS. We hugged, chatted about my mom, my kids, life in general. When it came time to sit for dinner I found myself seated next to a couple from southern Virginia and was astonished to learn that the husband had just been diagnosed a few months earlier. The wife looked a bit stunned to be in the company of so many people with ALS, many of whom were already in the advanced stages of the disease. I found myself wondering how they could stomach being here, glimpsing their future in such an overwhelming and personal way. The husband just wanted information, as much information as he could get, as if more and more information would keep the disease at bay. He described to me how he had begun tripping repeatedly and had finally fallen and was unable to pull himself back up. A few months later he was diagnosed with ALS.
His wife confided that she was already overwhelmed with taking care of her mother who had Parkinson's disease. They had recently moved to their vacation lake home in North Carolina. This was supposed to be their retirement home. "We're supposed to be enjoying our retirement, not dealing with this." she said. I knew what she meant. My mother had the same sentiments when my dad was diagnosed. All that hard work and this is what we get? It's not fair.
By the time we were done with dinner, Melissa and I were toast. We were both physically and emotionally exhausted. On the long metro ride to my house in suburban Virginia, we discussed the day. We couldn't believe how many presentations of the disease we had seen that day. Some people were confined to power chairs, others managed to walk in a lurching manner with assorted canes and walkers, some were walking and talking but their arms hung limply by their sides, many were attached to various breathing devices. The ages varied wildly from the very young to the very old. At some point I had to turn my brain off to the part of me that kept thinking "My God, he looks just like my dad." The worst were the older men wearing soft neck collars, just like the one my dad wore. I'm surprised I got any sleep that night.
The next morning we were back on the metro, dressed to impress and ready to conquer the Hill. Again we would have to go our separate ways - Melissa to knock on doors of the New York senators and congressman and I to pace the halls of the local Virginia representatives. I was a little nervous since our group leader had not seemed too prepared the previous evening, while Melissa's group had a solid plan in place. Must be the New Yorkers - always raring to go and up for a fight; we Virginians tends to take things a bit more slowly.
I have to admit that before this day even happened, I had visions of us standing up in front of the entire House of Representatives, telling our stories one by one into a microphone while the congressmen and women listened in awe. My neighbor who also happens to work on the Hill set me straight; he informed me that we'd be lucky to even see a senator or congressman. He told me that we would be meeting with the legislative aides, either in the office or possibly even out in the hallway depending on how much time they had. He advised me to forget statistics, facts, etc and just focus on personalizing whatever I had to say. I was relieved by this, considering that I was nowhere near prepared to spew ALS facts and numbers.
So Melissa and I caught the bus to Capitol Hill with her New York group since my Virginia group was nowhere to be found. We jumped off the bus, snapped this photo and bid each other farewell and good luck. And off we went. Don't we look official?
I finally found my group and it seemed a lot smaller than I'd anticipated. The two people with ALS who were supposed to accompany us were not there. I found myself in the company of a representative from the National ALS Association, one from the local chapter, a young twenty-something man who had lost both his grandfather and aunt to ALS, a woman around thirty who had lost her mother twelve years earlier and was a seasoned advocate, having attended this day on the Hill for several years. I found myself wondering how I would fit in with this group, strangers bound together by a common thread no one wants to ever share.
Our group leader proved to be more organized than I'd thought and she spelled out our "asks" to the first legislative aide we sat down with. The twenty something guy, named Kyle, pulled out a letter written by his father and asked if he could read it. Apparently Kyle had not yet read the letter himself and as he struggled to get through the three typed pages of his family's horrible history with ALS I found my eyes welling up and cursed myself for forgetting the essential supplies for the day - tissues. As he described how ALS took away his aunt's ability to play the piano I found myself completely breaking down. How would I ever tell my story after this? I still remember this one line from that letter (I heard it read several times that day) - "It wasn't enough for ALS to take the patriarch of our family - why not come back fifteen years later and take another?" I was not prepared for this emotional ride.
After hearing another story of ALS robbing a woman of her mother I decided it was time to tell my story. I pulled out a photo of me and my dad on my 40th birthday, smiling and happy despite having already known for several months that my dad did indeed have ALS. As I passed it around I remarked on how he was a man of science who always found a logical answer for anything, and if he didn't know the answer he would look it up and find it. Being given a diagnosis like ALS forced him to face the reality that not everything has an answer. I talked about his love of the piano, his family, his ability to give the perfect speech at any given moment. When I was done speaking, the woman sitting next to me pointed at his picture and said "What a handsome man. He looks just like Sean Connery!" I laughed because we've always thought the same thing and would call him James Bond. Laughter, amidst many tears. Suddenly this felt familiar, this sadness tinged with laughter. This is how we got through the journey with ALS and that's how I managed to get through the rest of the day.
The rest of our visits were fairly similar. I stayed silent during our second meeting, partly because I could tell that the woman listening was already supportive of our cause and partly because I couldn't really handle another emotional moment. Our third and final meeting of the day was fairly anticlimactic; I pulled out the photo and said a few words, but the raw emotion of that first meeting was gone. Kyle no longer struggled to read his emotional letter and not everyone shared the stories like they did earlier in the day. It's exhausting to keep reliving the same thing over and over again. I'm not sure how the people who return year after year do it.
I said goodbye to my fellow Virginia delegates and caught up with Melissa, who had already visited two senators' offices and one congressman and was on her way to her own congressman's office. I tagged along, stood back and listened. I was touched by the story of a young man, thirty years old, newly diagnosed with ALS and having traveled to DC from New York with his fiancee, a young woman determined to fight for her man and give him some hope for the future. I listened to him speak as he described the desperation in finding something, anything to hold onto that might allow him to enjoy life just a little bit longer. I felt devastated by the thought that this young man who had so much to live for would not be given the chance to do so. The unfairness of it hit home all over again.
"Do you think we made a difference?" Melissa asked as we rode the metro back to the suburbs. I honestly don't know. I do know that collectively the entire gathering made a difference. The experience of seeing so many people and families affected by a disease with no hope for survival and a short life expectancy was impact enough. The rest remains to be seen.
I have to say that another outcome of these two days was that I got to see my cousin Melissa in action! She is a hilarious bundle of personality and energy. Here are some of the highlights of my time with her:
Oh my God, You're the Karate Guy!
The week prior to our arrival on the Hill Melissa posted this article on Facebook about a World Champion martial artist living with ALS. She posted "Honored to be going to DC with this dude." As we sat at the table in the grand ballroom with about six hundred other people, a man and his family came and joined us about thirty minutes into the meeting. The man's wife gently helped him to stand from his wheelchair, turn and sit down in a chair. We moved our seats closer together so his teenage kids could join us as well. At a break in the presentations Melissa looked over at him and gasped. "Oh my God! You're the karate guy! It's you, you're the karate guy! I posted an article about you all over Facebook last week and you're sitting at my table!" Her enthusiasm was infectious and soon we were chatting up the karate guy and his amazing family.
Cornering Congressmen in the Elevator
At the end of the second day when I accompanied Melissa to her last meeting, we were visiting the office of her local congressman. She was already annoyed with him for sending her a generic email a week earlier in response to a personal email she had written to him about ALS. As we were approaching the elevator on our way out the building, a tall well-coiffed man in a dark suit darted onto the elevator ahead of us, having just ducked out of a door that we later realized was a side door to his office which we had literally vacated just minutes earlier. "Hey!" Melissa called out as we leaped onto the elevator with him. "You're my guy! We were just in your office! We need to get a picture." As he stammered that he had to get to a vote she held the elevator door and shouted for her New York contingent to join us. Before this guy knew what was happening, he was shoved into the corner of the elevator by ten eager advocates, the elevator doors were closing and Melissa was shoving her phone at me to quickly get a photo. I'm pretty proud of myself for this one.
He scurried off pretty quickly once the doors opened back up. Melissa was thrilled to have pinned him down but a bit miffed at his reluctance to take a photo and the fact that he seemed to be sneaking in and out of his office through a secret door to avoid their group. I just loved the fact that she seized the opportunity and got this great photo of herself and her fellow advocates mobbing the congressman!
Chatting up Kuwaiti Soldiers
We finally left the building. Surely nothing else interesting could happen to us on the way to the metro, right? Never assume this when you're with Melissa. A group of men in uniform passed us and one gentleman was wearing a distinctly different uniform than the rest. Before I knew what was happening I heard Melissa say "Oh my God, are you a Kuwaiti soldier?" Why, yes, I am, he answered and thus ensued an animated two minute conversation about what a Kuwaiti solder was doing strolling the streets of DC on a sunny May afternoon. I decided then and there that I absolutely have to spend more time with this girl.
So there you have it. A family reunion, ALS Advocacy and lots of adventure on Capitol Hill all rolled up into two wildly exhausting, emotional and exhilarating days. My story is done.
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