We live in a small, rural town where pretty much everyone knows or at least knows of everyone else. Other than three years, I have lived here my whole life. There can certainly be downfalls because of this but the positive experiences outweigh the negatives by far.
We waited a few months after my diagnosis to talk openly about it because we wanted to first tell our three girls. When we did break the news, I was attempting to tell our close friends first, in person. This was very difficult for me as I always felt like I was ruining somebody´s day. When this became overwhelming, I decided to write an email to our friends and aquaintances. The support that we have received since has been unbelievable.
First, our friends secretly took up a collection and presented it to us as a surprise to help fund a trip to Disney World. Next, my friends at work threw a fundraiser and then the whole community kicked into gear. Our church opened a fund for donations to help offset our expenses, numerous fundraisers and even a home renovation to turn one bay of our garage into a first floor handicap accessible master bedroom and bathroom. We have constant support from friends that feed me lunch (PEG tube) when Melissa is working. We also have friends that mow the lawn in the summer and plow the driveway in the winter.
ALS is a real struggle but the support from our friends and community sure helps lighten the load. I don’t like to think about where we would be without that support right now. ALS is an awful disease that not only affects the person with it, but also the whole family. The list of negatives is infinite but at the same time it has shown my family the true good in people.