Who Is Bonnie Guzelf?

 

Who is Bonnie Guzelf?

This is a question I have asked myself a lot lately. What inspires me? The person I am today is not the person I was 10 years ago, and probably not the person I will be 10 years from now. But who AM I?

I was diagnosed with a slow progressing form of ALS in 1999. My life and my dreams change in a heartbeat. I was in my early 40’s and I thought that I had the rest of my life to figure these things out. What was I going to do with the rest of my life now?

 

By 2002 I could no longer work, walk or drive. What was I going to do to occupy my time and occupy my brain? When I was young I wanted to be a writer, but life got in the way: work, school, home and family.When I could no longer work I started to write this blog. At first it was mostly to vent my frustration and to share information that I had gained over the years.

 My husband Phil and I always loved to travel. I decided that this was one of the things I was not going to give up, at least not easily. We did some traveling while I was still using a cane or walker. Once I had to use a power chair to get around it became a little more difficult. But it didn't stop me. I didn't give up.

 In March of 2012, I organize a wheelchair accessible to trip to Israel.  A place I have always wanted to visit but after my diagnosis never thought it would be possible.  I found a tour company that specializes in Tours of the Holy land for people with disabilities, adults, children or people that just want a smaller group and a slower pace. It was the trip of a lifetime.  I wrote an article about it which was published in the  MDA Quest Magazine.

This year my husband and I went on a cruise to the Caribbean. Although we got a wheelchair accessible cabin, and the ship was fairly accessible, there were still many issues and difficulties traveling with my wheelchair.

When we returned from the cruise I decided that I wanted to take another trip to Israel. It was so easy so and so nice to be with others who have issues like myself. I did not have to be self-conscious about eating with special utensils or needing more time to get ready in the morning or having to take frequent bathroom breaks. I got back in touch with the tour company from last year and I am now in the process of organizing another tour to Israel in May of 2014.  He is also  putting together a tour in October of 2013 called “In the Footsteps of Jesus” .  My motto has always been “Don't take no for an answer.”

I began to get more involved with MDA.  I got involved in some fund raising events and participated in the MDA annual telethon. I wrote a blog about remodeling my home to make it more wheelchair accessible for me. The MDA quest magazine published that article. Suddenly I was a writer, an author. I had a voice and a purpose.

I began to get to know the people who work for MDA. This year they asked me if I would be the 2013 MDA/ALS Adult ambassador for Arizona. I am honored to do so.  As ambassador I have attended many fundraising and informational events. Just recently I was part of the 2013 Muscle Walk in Phoenix Arizona. They asked me why I do the walk.  I think it is to bring awareness to the fact that there all over 40 different types of muscle diseases covered under the MDA umbrella. Most people associate MDA with the children. And of course  that is great. However, people don't realize that MDA serves the adult community also. MDA provides me with support and the opportunity to help others. It has given me the purpose I have been looking for. One day they will find a cure. Of that I am certain.

Don't get me wrong, I am not saying that all my days are filled with joy and sunshine. I have many good days, but I have my bad days too.  When that happens I don't fight it, I allow myself to grieve, for that is what it is. I may have lost the lifestyle I once had, but I gained a whole new meaning to my life.