When Steve was diagnosed with ALS in February, 2011, we went to a restaurant on our way home, and through our tears, clinked our glasses to Life! We declared that, while ALS is not from God, this sudden and unexpected move into a new community was certainly His plan for our lives and we decided that we would not go kicking and screaming, we would go loving and serving.
Because the disease is rare, our “country” isn’t very big. We rarely run into people with ALS (we’ve once or twice asked people in wheel chairs if they have it – we stopped doing that because the look of horror on their faces just reminds us that no one wants to visit our country). When we do meet someone living in the land of Lou Gehrig, it’s like finding a fellow sojourner on a long journey and you feel not-so-alone.
When we arrived at the ALS conference last week, I imagine it was like someone from Finland stumbling into a hotel ballroom in Arizona and finding a thousand people from Helsinki there. Everyone speaks the language. They understand the street names from back home. They know the same food and they have lived through the up’s and down’s of a culture that the rest of Arizona couldn’t possibly understand. That’s the best way I can explain our week: it was like finding your country, comfort and comrades…all in one space.
I arrived late because I had been speaking at a conference, and so I was almost immediately whisked off to a candlelight tribute rally. This rally was attended by hundreds of PALS and FALS and it was very moving. A woman shared the story of her brave husband who faced the disease with valor and grace. She talked about how their marriage grew stronger as a result of the disease as did all of his relationships. He slowed down and invested in people and his life really mattered. A man shared of his grandmother – a former dancer – who died of ALS years ago and he has given himself to the fight. And a 13-year-old boy shared about losing his dad just a few months ago and I would tell you what he said but…it’s still just very deep and raw for me. It was beautiful, though.
As we all stood together in solidarity for life and for a cure…and as we remembered those who were and are fighting this disease, our candles flickered hope. Tears rolled, hugs spread through the crowd, a certain bittersweet loveliness permeated our hearts. As I stood with my beloved in the middle of a busy city, by the glow of warm candlelight, I whispered to God, “Thank you for sending us to this country. It’s brutal, but it’s beautiful.”
The next day, we attended lots of sessions led by seriously smart people that centered around ALS research. One session was extremely hopeful as Dr. Brian Traynor showed the progress being made in labeling the genes involved in ALS. Aside: Dr. Traynor suspects a link to the Vikings in the 16th century and produced the following slide:
I’m astounded that people as smart as these doctors have any room in their brains for humor, but there it is.
After that session, was one on Clinical Research Trials. This is where we ran into some dangerous, difficult terrain in our country. A panel of researchers explained the breakthroughs on the horizon and the tests being conducted to verify the effectiveness of new treatments. They spoke of possibilities and complications and the astronomical odds of making a treatment actually work. I appreciated their candor and I know they are working so hard to eradicate this disease, but I have never felt despair rise so palpably in a room before. A man took the mic and talked about a clinical trial he participated in and received some help from, but now he cannot get the medication because it’s not yet approved and his condition is rapidly declining. He begged the doctors to find a way to make the treatment available. A woman spoke of her son – still in his early 20’s – who cannot qualify for a trial of any kind.
It was at this point that a woman with ALS at a table behind us began to cry. Not just cry, but sob…soul-deep, gut wrenching sobs that neither she nor her friends could contain any longer. It was the desperate cry for help for which there were no adequate words. It was the cry for deliverance from a land she never wanted to visit and now she knew she would probably die there. The doctor tried to be heard over her weeping, as he carefully explained that we are far from knowing what we need to know but they are working as fast as they can.
I sat at my table and put my head in my hands as tears ran off my face and into my lap and this time I whispered to Jesus: “I hate this country. I love the people, but I hate every single thing about this country.”
A long dinner with our team of superheroes – each of whom has lost someone dear to them to ALS, each one so familiar with the soil of our battleground – restored hope and rest to me. We laughed and ate and carefully remembered everything promising that we had heard that day. We planned our attack on Capitol Hill, where we would – with more passion than ever – ask our government to please help us in this fight. I’m so thankful to Aubrey, Carolyn, Barb, John and Beth for helping me find solid ground again.
And you know who else I’m thankful to?
I wish I could explain how he really is when no one is looking. I wish I could show you how brave and strong and righteous he has been in this fight. He is valiant. He is so many things that I am not and while this disease attacks his muscles, he still carries me along pretty effortlessly. I am thankful that I even get to know him…being loved by him so well for so long is a gift beyond telling.
So, I promise tomorrow I will turn this blog around. Good things happened on Capitol Hill and I can’t wait to tell you about them. But I wanted first to be very honest because I’m guessing you might also live in a land you didn’t choose. You may have built a home in heartache or disappointment or struggle or pain and you are longing for a miracle of Exodus proportions. I am longing too. But I know He is enough. I know that He also has a home in our grief and He doesn’t ever make us go alone. He always reminds us that a better day – and a beautiful home – is coming.