Posted to the HDL: 30 Sep 2006

Volunteering

Phil Hardt

I want to talk about volunteering in hopes that what I share will encourage other Persons with HD (Phds), who are no longer able to work but who still have lots to offer, to volunteer whenever and wherever they feel comfortable.

Looking back on my own experience, I felt a great void in my life after having to quit working. I missed the business trips all over the country, social interactions, lunches with fellow employees, friendships I had made, participating on continuous improvement teams, the independence I had grown accustomed to, and the good feeling that comes from just being a "contributing" member of anything. I didn't start out volunteering but soon found I was bored with virtually nothing to do but "house chores!" It's a "man" thing I think. I just wasn't content staying at home like my wife was. Even watching TV all day didn't help either!

I think it was during my third annual PHAROS visit to the Mayo Clinic in Scottsdale, when Dr. Caviness said kind of matter-of-factly, "Have you considered using all of the time on your hands now to volunteer?" I think I replied, "No, but let me think about it." It took several months after that to finally get up the courage to convince myself that I was still "competent" enough to volunteer and to then begin thinking about where I could volunteer. I say "to get up the courage" because after not being able to work for almost three years, I guess I felt like I couldn't contribute anything worthwhile anymore, so why try? It's was extremely hard to go from being so productive, independent, and dedicated to feeling worthless and like I couldn't possibly contribute anything worthwhile anymore. It was a huge paradigm or "attitude" shift I had to make.

I had worked hard for the last 22 years, in fact, I had worked two jobs for over half of those years because of my large family. I had always had a regular job and then, out of necessity, after we started increasing our family through adoption and so Laura could stay home with the kids, I taught college classes three nights a week and on Saturday. I had always pushed myself to be the best at whatever I did and so it was hard to finally convince myself that it was okay to still try to do something, knowing from the start, that I wouldn't be able to give 110% as I had in the past because of not being able to function both physically, emotionally and cognitively like I used to. I had also discovered that I felt more comfortable expressing myself in writing, where I had more time to think things out, and could take a longer time if necessary, than having to speak orally and process things rapidly like I used to be able to.

In addition to these concerns I was also reticent about volunteering because I didn't want to do ANYTHING that would be stressful as I had already experienced firsthand how stress had aggravated and increased my symptoms. I knew that whatever I did, it had to be completely stress free, in other words, it could have no deadlines, no strict time schedules, and no rigid attendance requirements. I would also need to feel completely comfortable about being able to call in "sick" whenever I wasn't feeling up to it. It also needed to be a place where the job that I performed wouldn't jeopardize anyone's life if I messed up. In addition, since I couldn't drive any more, whatever I decided to volunteer at had to be someplace close so I could walk, ride my adult tricycle, or ride the bus.

The next problem I had was figuring out what I could still do relatively well, and probably more importantly, what I still felt "comfortable" at doing by utilizing my formal education and the experience I had gleaned over the years- the information still undisturbed by HD in long-term memory. I felt like I could comfortably handle any volunteer job that utilized my Master’s in English, computer education and skills, or music. Because of the failings of my short-term memory and the short-circuiting of how to get to lots of stored information and my inability to "think on my feet" anymore, I felt most comfortable working on a computer, or doing things by myself, rather than constantly having to communicate with other people who were asking questions, needing immediate help, etc.

Based on all of this I decided that I would feel the most comfortable volunteering at the local elementary school where two of my sons Ammon and Gary were attending. Shortly afterwards I also volunteered to accompany Meredith's 6th grade chorus on the piano. I approached the school and they had me put down the areas that I felt were my assets (like English, computer skills, and piano) and the potential areas that I felt like I'd enjoy working,

Within a couple of days Hartford Elementary contacted me and asked if I would work in the library two days a week, and Erie Elementary contacted me and asked me to accompany their choir. For several months all I did was reshelve books and check books in and out manually since they were in a temporary location while the existing library was being remodeled and enlarged. However, after the remodeled library was completed and new computers were moved in, no one knew how to operate them. They had also received in lots of new books that needed to be input into the new computer system. I surprised them by telling them that I could help them get the new computers and the library software up and running, plus input all of the books automatically using the new barcode reader system- thus saving hundreds of hours inputting everything manually! In the meantime, the choir director gave me easy pieces to play at first and then when she decided I knew what I doing, she started giving me more advanced pieces of music to accompany the choir with.

Although I didn't know their new library system, because of my past computer experience as a college teacher, Material’s Manager and Senior Buyer, I knew enough about data bases to know what they could and couldn't do, how they operated, and that their commands and functions would at least be similar. Sure enough they were. Talking with the librarians beforehand and telling them about my symptoms and limitations also helped me to feel more comfortable, knowing that if I ever did happen to mess up, they would know it was the disease and it wouldn't seem like me coming back with the HD as an excuse.

I have had no problems adjusting and fitting in. I started out volunteering just two to three days a week and now I go in five days a week for four hours each morning! The librarians and school principal have been extremely understanding and even honored me with the Volunteer of the Year award last year! I also continue to volunteer two afternoons a week accompanying the choir. I can't remember "accidentals" in the music anymore so I have learned to compensate and write them in. Otherwise, long-term memory is still hanging in there!

I would highly recommend volunteering to any Phd who is still able to get around. It has given me back a feeling of self worth knowing that I can still contribute something again. I enjoy volunteering and feel good about still being able to help others. It's not hard to get up in the mornings now either because for the first time in my life I "want to," not just "have to!" In doing so I have also forgotten a few of my own problems that I tended to focus on before. Many cities have organizations that coordinate volunteering efforts. Some help is only needed seasonally and some is needed year round. Some requires you to leave the house but some may even be able to be completed right at home.

Ralph Waldo Emerson gave this yardstick by which to measure our personal success. He wrote: "What is success? To laugh often and much; To win the respect of intelligent people and the affection of children; To earn the appreciation of honest critics and endure the betrayal of false friends; To appreciate beauty; To find the best in others; To leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; To know even one life has breathed easier because you have lived; This is to have succeeded!"

Think about your strengths and what you still feel "comfortable" doing, start out slowly, and most of all- have fun!

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