I had the second talk today, for Intel employees. I mentioned the talks briefly before, but lemme recap.
The leader of the Veterans’ Resource Group here where I work contacted me to see if I’d be willing to help. Veterans are twice as likely to get ALS and we don’t know why yet, so they’ve dedicated this quarter to raising awareness. Part of that awareness campaign was two scheduled events where they brought out the technology available to assist ALS patients, tried to drum up support for the Walk to Defeat ALS, and talked about ALS in general. He asked if I’d be willing to just give a short talk about my diagnosis, how it came to be, and how technology has come into play. I came to his attention because of the news story on voice banking, and he thought that was a wonderful way to introduce ALS to Intel folks – apparently I am the only Intel employee currently working, who has ALS. He asked if I’d share my story. Of course I said yes, no big deal.
I thought a lot about what to say. I didn’t want to just stand up there and talk about my diagnosis. I didn’t even really want to talk about myself much, except to say, this is what ALS is, and if you have any questions at all about what it’s like, or how you get diagnosed, or anything, please ask, because I want people to know this stuff. There’s a lot of misinformation out there, and most of the information that is correct is cold and clinical, hard to put a face on. And I didn’t want to be a Sally Struthers pity party campaign of DON’T YOU FEEL AWFUL LOOK AT THIS HORRIBLE STUFF YOU SHOULD GIVE US MONEY AND FEEL BAD.
And so instead I talked about the tech. Both times, I didn’t manage to stay on script, but this is more or less what I said. And I wanted to share it here, because it’s valid and important to me.
After a 6 month chase including MRIs, a spinal tap, a biopsy, and several impressions of an electric voodoo doll, I was finally diagnosed with ALS. (As it was stated) ALS is also called Lou Gehrig’s disease, after a then-famous baseball player gave a speech telling America that he considered himself the luckiest man alive.
That April 1st, as I sat in the neurologists office and tried to process the news, the first thought in my head was not that I felt particularly lucky. The first thought was actually, “I have to wait until tomorrow to tell people, because NO ONE is going to believe me when I call them on April Fools’ Day to tell them I have a terminal disease.” And my second thought was, “Ok, now what.”
Some people interpret this as courage; I think it’s actually closer to pragmatism. If anything, working here has honed my natural ability to deal with crises with grace. I *can’t* panic; I’ve suddenly lost the luxury of time, and in less than a year I went from perfectly healthy to planning advance directives and making decisions about feeding tubes and ventilators. And it’s become a full time job figuring out how the heck am I going to AFFORD all of this. Dying of ALS is a very expensive endeavor in the States. There’s all of the mobility equipment I’m going to eventually need, there’s the two story house I had bought a handful of months before I was diagnosed that now has to be sold because stairs are becoming impossible. There’s going to be hospice care, and figuring out who I can rely on to get me to medical appointments.
And even more stressful that figuring out money, I have to tell a lot of people about my diagnosis. When a coworker asks if I’m limping because I’ve hurt myself, I have to tell them why I’m limping, and I find more often than not that it usually entails an explanation of what ALS even IS. When I told people of my diagnosis, while their first reaction is always “I’m sorry” – which feels lame to you? But it helps, it really, truly does – the SECOND thing out of everyone’s mouth is always some variant of: “What can I do to help.” I have never realized how many amazing people are in my life. When I was diagnosed, I knew I’d need someone to lead my care team when I couldn’t, and when I looked up, my best friend had her bags already packed and checklists in hand. When I realized that it’s become so much more difficult to do the simplest things like go to the store, I have a plethora of people offering to take me. My little brother moved his entire family from California to be here for me. Casual acquaintances have become friends. And my coworkers have become my invaluable allies.
I have the very good fortune to be working here at Intel. Our benefits are actually really good, especially when you compare them to the nightmare that is Medicaid. And most importantly? The people I work with are an incredible asset. You have two things we really need if we’re going to defeat this stupid disease. First? I’ll be honest, …we need your money. Research takes money to fund, and did I mention how expensive having ALS is? But second, and probably most importantly, you have intelligence and innovation. If you look at the tech available to make living with ALS easier, and compare it to what is POSSIBLE, you’ll see an almost comical shortfall. Eye gaze tech allows ALS patients to use a computer after their ability to move has gone, but it costs thousands and thousands of dollars, and the best stuff isn’t covered under insurance. There is good technology available, and there’s AMAZING technology POSSIBLE. And you’re just the people to help us push this tech to the next generation and make it available to everyone that needs it, not just those that can afford it.
Ever since that April diagnosis I have been shown time and again that I am completely surrounded by people who are willing and able to make this disease suck less – for myself and every other person with ALS.
And because of that, I realize that I am actually very, very lucky.