[BobbyB]

When a health care issue gets personal, you fight
Catherine Swift • published August 10, 2008 12:15 am




Waiting to step into impressive buildings in your nation’s capitol to plead your case directly with those who govern the most powerful country in the world at age 14 can be compared to waiting to sit down to a philosophical discussion with Plato, Aristotle and Socrates before you’ve started kindergarten. It’s scary, and frankly, you just don’t feel prepared. Maybe, if you are like me, you’ve experienced the first, and maybe, if you have a very vivid imagination, you’ve also experienced the second. But if you’ve experienced neither, as scary as they can be at first, I encourage you to try at least the first one out.

I did so for the first and so far only time this past May, which is National ALS Awareness Month. My father, Tom Swift, was diagnosed with ALS more than a year ago, and he invited me to accompany him to Washington this year for National ALS Advocacy Day. This day is in the center of a weekend in which chapters like the Jim “Catfish” Hunter Chapter from all over the country meet to travel to Capitol Hill in order to inform congressmen and congresswomen about the need to take action against ALS. Of course I was thrilled to go and spend time with my dad, though I was nervous, because I knew I was going partly to help him with things such as pushing his wheelchair and cutting some of his food, things which I do often at home but that are much more challenging in airports and large cities. Actually, I wasn’t just nervous. I was scared. But as the saying goes, things are not always what they seem.
Anxieties and challenges

When we arrived in Washington, things were going as I expected. My dad and I were having a great time together, but even getting from place to place was a constant challenge for me. Not only was I faced with the anxiety of helping my dad into cabs and forcing his wheelchair into the trunk, but the whole idea of riding in taxicabs was new to me. Sure, I’d seen it on TV, but had I done it? Never. But then, on Sunday afternoon, things changed.

After lunch, my dad and I made our way down to the lower floors of the Renaissance Hotel where we were staying with all of the other ALS advocates, and we met them for the first time. For me, though I knew none of the 100-plus people there, it felt exactly like coming home after a long day to the most supportive family in the world. Never before had I met anyone else with ALS, let alone anyone who was in my position, a family member who had to deal with not just the physical hardships but the often excruciating emotional burdens of loving someone trapped by this awful disease. And here were more people than I could count, all of whom shared my experiences, my pain and my passion to fight ALS. At first I couldn’t breathe, I was so ecstatic and relieved. And it got only better.

At Capitol Hill two days later, I realized several things. I realized that “wear comfortable walking shoes” means “WEAR COMFORTABLE WALKING SHOES!” I realized that despite the intimidating titles, senators and representatives were real people who really do care. I realized that, as overused as the expression is, a small group of people actually can make a difference. And most importantly of all, I realized that I was not just in Washington with my father to help him get around. I was there to help him tell his ALS story and bring the disease to an end. I was there to fight. And so fight I did.

Heartfelt appeal

That day I stood up in front of two senators and three representatives, and I told them, more or less, how I felt. I told them what it was like to have a parent with ALS. How I was angry, sad, confused, afraid. How I didn’t know if he’d be there when I got married. How I didn’t even know if he’d be there when I graduated from high school. How I prayed until it hurt that there was hope, that there was a cure. I told them all of this, and I told them that that hope would not exist without their help. And they listened.

None of this was anything I ever expected to do. None of this I ever expected I could do. But I did, and every day I am grateful that I did, that I got this chance to fight not only for myself and my father, but for everyone who I met on that trip who was affected by ALS, and also for everyone I haven’t met who only wants what I do: hope. After ALS Advocacy Day, I believe that it is there. We just have to reach for it.

Catherine Swift is the daughter of ALS victim Tom Swift, a chaplain with CarePartners Hospice & Palliative Care Services. A monthly ALS support group for patients and caregivers meets in Asheville today, Aug. 10. Contact facilitator Pamela Brown at 252-1097 or at pbrown@catfishchapter.org for more details.

http://www.citizen-times.com/apps/pb...D=200880807088