About six months ago, I drafted a list of life goals ranging from the trivial (“Master badminton”), to the grandiose (“Exhibit at the MOMA”). The list included hiking the Appalachian Trail, perhaps one of the more ambitious prospects on the list. To hike the trail requires four to six months of “free time,” a willingness to forgo showering, hygiene, civilization, and the ability to entertain oneself for hours on end while hauling a middle-schooler on your back up thousands of vertical feet. The appeal is obvious.

When the opportunity to take six months off presented itself, I made the decision to go. Some people say I am crazy, others say I am courageous, but they all have one consensus – I will surely be eaten by bears. For four months now, I’ve been researching, acquiring gear, and trying to convince friends to willingly throw themselves into the gaping jaws of grizzlies with me. Oddly enough, no one volunteered.

While planning for my trip, my grandmother died of complications from Scleroderma. Susan Dart was an incredible woman who remained active until her death, never accepting the limitations of her restricted mobility. She was the author of five books including, Market Square, Edward Dart Architect, and The Friday Club. Susan Dart was also a columnist for both the Lakeforester and the LA Times and a professor of English at Barat College and Loyola University. Determined to have her grandchildren speak and write correctly, she taught grammar classes, vocabulary lessons and manners tutorials over my summer vacations. These were more fun than you might expect and often involved prizes. Perhaps this is the origin of my love of language.

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In the foothills of North Carolina, a stone’s throw away from the A.T., she lived a rustic life in a cabin without plumbing or electricity. With her husband, she would draw fresh water from streams, hot water from wood burning stoves and light from kerosene lanterns. Together, they developed a series of trails through their mountain property, which she hiked regularly. Eventually moving from the cabin to a house of modern conveniences, Susan maintained the cabin preserving its history in a book entitled, The Old Home Place. A fellow nature enthusiast, champion of natural foods and wildlife conservation, Susan Dart would have appreciated my desire to tackle the Appalachian Trail.

After her death the trail took on a new meaning for me. I saw the opportunity to make my hike count for more than personal satisfaction. I have decided to hike in Susan Dart’s memory and am hoping to raise a significant sum of money for the Scleroderma Foundation through pledged donations in her honor. This trip is a chance to increase awareness of Scleroderma while honoring a woman of great strength, energy and conviction.

8 Responses to “The Reason”

  1. emily d Says:

    what a wonderful grandmother you had! you are a tribute to her memory, john, and your trip sounds exciting, scary, and i’m delighted to hear updates! if you’ll be down near maryland, lemme know, and i’ll gladly hike an afternoon with you- i miss you madly and am sorry for your loss. i lost my grandpa to Parkinson’s last May and am still reeling from the loss. i’m here for you, bud! xo

  2. Hope C Says:

    I, too, suffer from scleroderma and it is a horrible disease that not enough people know about. I am sorry for your loss, but am pleased to know you have chosen this route to honor someone you love, and to make the world more aware. Have a safe trip. I will be keeping up with this blog!

  3. Cat Says:

    Excellent! I used to live near the AT in Vermont for many years and that makes me a little biased when it comes to the beauty along the way. Although, the entire trail must be something to behold. Three years ago I was diagnosed with Scleroderma and like your grandmother I am going to continue to live life to the fullest while dealing with this. My mother also died from complications of Scleroderma in 1974. It is a terrible disease and I honor you for honoring your grandmother and in some way all of us. Thank you! Happy Trails!!

  4. Wendy Says:

    John
    How proud your grandmother would be to see you start this journey!! I personally want to thank you for honoring your grandmother this way. My mother also has scleroderma and like your grandmother never lets it get in her way even when shes faced with the terrible complications it can hand out. God bless grandsons like you who continue the fight! I will be keeping you in my thoughts and prayers as you make this journey.
    God Bless

  5. Terrie Says:

    Well, you get to hear the horror stories about how we too, have scleroderma or know someone who does. My mother died a year ago from its complications (pulmonary hypertension), but fought a brave fight for over 8 years. We are certain she had the disease long before it was diagnosed and we are thankful for people like you who try hard to bring awareness & resources for such a cause as this. Have a wonderful trip! God bless your walk of a life time.

  6. sandra zayas Says:

    hi,
    my name is sandra and I have scleroderma ans its been a rouhg ride for me and my family and we are having walk in west hartford conneticut and we dont really get enough recognition we nees to tell the world that thos condition is deadly please if you have a bit of time out of you busy schedule to give me any advise you can on how i can get someone important to cme and speak or even just to show up so that more people can come to our walk it would greatly appreciated.
    thank you,
    sandra zayas

  7. Lori Says:

    HI,
    My name is Lori and my mother died three years ago from complication with Scleroderma. Thank you for walking to raise awareness of and fund for the Scleroderma Foundation. What a wonderful way to honor your grandmother. The hardest part of Scleroderma for me was watching someone I loved suffer from a disease for which there was is no known cause and no cure. The second hardest part was the response when you said the word Scleroderma – you could tell in an instant the people who had actually heard of the disease, it was written on their faces because they knew of the harshness of this disease. Harder yet, was always having to explain what Scleroderma is – too many facets to explain quickly and everyone wanted to reassure you it would be ok. Which it never was.
    We just had a walk in Albany to raise money for scleroderma. Sadly none of the requests to local media brought us any coverage. We need more people like you to bing attention to this cause so people are more educated and don’t feel so alone when they get the diagnoses.
    Thank you and God Bless you on your walk. Lori

  8. Erin Says:

    Thank you for all you are doing to raise awareness & funds for scleroderma.


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