Got a Minute with Tom Swift

Tom Swift
Patrick Sullivan/Times-News


Related ContentTom Swift

Age: 49

Family: Two daughters, Emma, 17, and Katherine, 14

Work: Chaplain at Care Partners Hospice and Palliative Care in Asheville.

ALS Support: A group meets monthly in Asheville. Contact Pamela Brown at 252-1097.

You are an ordained minister. Why did you decide upon a career in ministry?

Long ago, I wanted to use my gifts to serve God and that turns out to be the best way to do it -- to join the ministry of the church. I was a preacher for seven years. And then I become a hospice chaplain seven years ago. First at a hospice in Columbus, N.C., and now a hospice in Asheville with Care Partner Hospice and Palliative Care.

What are the challenges of working in hospice versus being a minister?

Well, the congregation is different. The people I am serving now are all diagnosed with a fatal illness. To the doctors' best understanding, they have six months or less to live. So, the relationship I form with them is pretty intense. Within a few weeks, I am able to be with them in some very dark places and offer them comfort and support.

You were diagnosed with ALS, or Lou Gehrig's disease, which affects the nervous system. How did working in hospice prepare you for the diagnosis?

Well, it did. Prior to the past six years, I was diagnosed a year ago, I have had to think a lot about my own dying and how I wanted that to look and how I wanted to prepare for it. But in other ways, I had no idea what it would be like to be diagnosed with an illness that could take my life within fives year. I was not emotionally prepared. Because I don't think you can be until it happens to you.

How does ALS, as a disease, progress?

ALS is a motor neuron disease which causes the nerve cells to fire indiscriminately and they make my muscles twitch as I'm sitting here. My muscles are twitching on my arms and legs. Eventually, they will burn out and the muscles will become weaker and weaker. So I will lose muscle strength over time. Most ALS people die because they can't breath. The muscles in their diaphragm cannot expand and contract.

Your faith was questioned because of the diagnosis. How were you able to work through that?

God and I are still in conversation. Many times I have said, "My God, My God, why have you forsaken me?" That's a quote from Psalms, as well as Jesus. But through it all, I do believe that God loves me and I trust God that it will all be okay. And that gives me a rock-solid foundation on which I stand.

As the disease has progressed, how have you been able to function? ALS makes moving your hands and legs more difficult.

Well, I am still working 40 hours a week. I'm still driving. I am now full-time at our inpatient unit. I was visiting people in their homes and in nursing homes. But now I work 40 hours a week in the inpatient unit. And the really rewarding thing that has come about because of this is I walk in with my walker and come in to meet their spiritual needs, they see me as someone who is going through some of what they are going through. Sometimes, the family of the patient will take care of me.

How has it been to have people perceive you as "different?"

I wrestle with it because I want to be as independent as possible for as long as I can. There are certain kinds of help that people want to give me that I will not accept. If I can open a door or if I can tie my shoes or if I can drive, I want to do that. I want to be as functional as I can. I don't want to be perceived as someone who is helpless.

What kind of support have you gotten from your friends and family and work?

I have gotten excellent support. A group of friends from my church are bringing me food twice a week, my supper. They are stopping to get groceries for me. They have helped alter some of my clothes by putting velcro so I don't have to button my shirt with fingers that don't work so well. I have gotten wonderful emotional support from people at work. I have friends who meet me for breakfast, which helps me get out of bed in the morning, get going in the morning, which is the toughest. I have a support group that I go to once a month and will be asking for more as time goes on.

How has your conversation with God changed as you have progressed through the disease?

I have been through several stages over and over. One stage is why me, questioning God. What do you think? I have a lot to give you. I'm a hospice chaplain. I'm a father. I'm a friend. I'm writing. I'm offering spiritual guidance to people, so why is this happening to me now? It's almost kind of a bargaining. If you don't let me live, I will have less to give you. I become angry about this illness. Angry at God. Other times it is anger at whatever genetic factors are involved. We don't know what causes ALS. We can't treat it. I have been quite sad at times, very depressed.

What lessons have you learned through this?

First, you have to enjoy the moment. This moment. It is great sitting here with you talking about this. And enjoying the next moment of driving to work. I have regrets about the past I can't change. I have fear about the future, which I cannot change. But this moment is very good. The other lesson I have learned is to emphasize the positive. Emphasize what I can do -- visit with friends, go see music and not focus on the fact that I can't kayak or hike and can't button my shirt.

--Interview by James Shea; photo by Patrick Sullivan.

http://www.blueridgenow.com:80/artic...with_Tom_Swift