May is ALS Awareness Month.
I am so grateful that I was able to attend the Bangor Art Society open forum art show. I was given the opportunity to undust The Bare Truth Project, which I created over ten years ago. I have felt for years that the pink ribbon was so glorified and I felt the true meaning of the ribbon has been lost. Do we really understand why the pink ribbon?
So I found two photographers to work with me and take my overflow that I couldn’t. I would spend from 8A.M. Until 4P.M. Back to back sessions that would take as long as each model needed. Each model I would not even use my camera immediately because what I was asking would be something that would be very difficult. I explained the purpose of the project, that I would ask them to bare their scars on their level and before we start I asked to please share your story. How you found out, the process and how they got the scars. I personally photographed 65 models over the summer one man and the rest women.
When I started the project I was just thinking about breast cancer awareness. What I learned was it was not just breast cancer. It is more than that. It’s many types of breast cancer, support or lack of support, feelings that they feel when they look in the mirror every morning before hiding under clothing, families, emotions. I was able to listen and cry with them. Each photograph was displayed on a 20 by 30 board, all my photographs were printed for free by Nations Photo Lab in Maryland. They were strictly black and white with a hint of pink per request. I wanted black and white because it is showing rawness without the color covering it all up. Every model agreed to bare their scars. The project raised $25000 in three different events and all proceeds went to the Lafayette Cancer Center in Brewer.
I am now bringing the project back out but displaying only my pictures. What will happen to them when I am no longer here? I would love to donate them to a gallery as a permanent display. Each would not be titled except first name and last initial because they are individually one as a whole. The display would not have a pink ribbon. That is my dream and with Nicole’s help I have been able to bring them back out. I won second place on my big picture Michelle and Sarah. The funds from the award is going towards my ALS wish for our 25th wedding anniversary.
David and I are celebrating our 25th wedding anniversary. Immediately I thought that we needed to do something extra special for us. I don’t like to say this but my family deserves this. I feel selfish saying it but we have been blindsided by a motor Neuron Disease called Amyotrophic Lateral Sclerosis aka ALS or Lou Gehrigs disease. In 25 years David and I have faced many highs and lows as any relationship would.
When did our story begin?
Feb 9th, 1998, I had asked my best friend if I could have permission to pursue her brother and then I asked the other sister as well. They both gave me their approval and that was when the adventure of my life began. That night I had delivered a poem I had written for him, placed in a white envelope with a message written on the outside that said, to David, your valentine’s day has just begun, day 1. I did this every day until Friday the 13th and I could not wait anymore. So I called his oldest sister and said can you please get David here somehow? She told him I needed help moving a refrigerator. When he arrived a note was on the table that said Happy valentine’s day love me. Then I came walking down the stairs. He hugged me then we drove to Essex street Hill. The rest is history. We raised three amazing young men. We bought our first home in Corinth and raised our children there. After 18 years we had to move to a more accessible home that put us back on Essex st, we completed our circle.
Since my diagnosis things have gotten more difficult but we didn’t let it stop us. The last five years we really have not celebrated our Anniversary due to mobility, transportation, me being sick, funds and nursing staff needed.
Team Gleason loves to help with adventures to a certain point. They advised a go fund me page to help raise funds that they don’t cover. We find out on May 31st how much they will cover, then they book the whole trip for me.
We thought about where we could go without David having to drive too far. I found out Amtrak has train vacation packages. So we picked the jazz and country trip. We would drive to Boston, hop on the train and go to Chicago , we would stay in a hotel for two nights and explore the area, then we would hop back on the train and head to Memphis, stay two nights in a hotel, go to Graceland and explore the city. Finally we hop on the train and head to New Orleans, stay two nights in a hotel, take the river cruise and site see then back to Boston. Not wanting to go alone we are bringing two of our boys, the third is deployed. We are bringing our first hired nurse and her husband.
I am able to do this vacation because I choose to live. I didn’t remove life sustaining equipment like Hospice requested. I have an amazing new doctor Hannah Livingston from northern light internal medicine. Ever since I gained a stronger supportive team, I have become healthier and filled with hope. So far we have raised just over $4000, the total cost of the trip is $20000. We are just so overwhelmed with the love and support from the community to make this Anniversary to be one we will always remember. Thank you.
May is National ALS Awareness month and every year for the past four years my flag has been displayed with 6000 other flags on the lawn at the Washington Monument. It is an honor to have the ability to share my journey in such a big way. I sent my friends on a mission to find my flag and take a picture with it. I’m hoping they bring friends and feel the overwhelming impact of ALS.