I still remember in August 1996, waking up in the ICU and breathing on a ventilator. My doctor told me a few hours later that I will need to be on a ventilator for the rest of my life. That night was one of the worse nights of my life, for I was aware of every breath I took. I actually thought that having to feel every breath would eventually drive me crazy.
A few nights later, I started watching the 1996 Democratic Convention, and in a way, it saved me. One of the speakers was Christopher Reeve. He came onto the stage in an electric wheelchair, and he was breathing on a ventilator. I don’t remember what he talked about, but at that moment, he gave me hope. It took a lot of courage for Christopher to be on that stage and give a speech to millions of Americans. He became my hero that night. The emotional crisis I was facing was gone and replaced with a determination to accept my new life and learn to adapt to it.
A lot has happened since then, as it would for many after twenty-five years. I took up writing to express my transition from being single and independent to being dependent on others and needing 24/7 care. Since then, I have written twenty short stories, have self-published two books, and planning to publish another story in December.
Nature became my physical and spiritual therapist. When I visit a park or hiking a trail, I am more relaxed, which helps me breathe more comfortably. It is a feeling of being home when I am surrounded by nature. This connection to the outdoors motivated me to be a wildlife photographer. It was also was a way to share with others the beauty of nature through my photos.
However, what has meant the most for me, is helping recreation areas be barrier-free and accessible for everyone. That, and posting reviews on my blog of all the parks and trails I have visited. The outdoors is for everyone, but more needs to be done to get the disabled community more involved with programs like nature hikes and education on the health benefits of the outdoors.
I have had individuals ask me why do I have a celebration of life anniversary. They’ll say, “You’re in a wheelchair and on a ventilator!”
The reason I celebrate life each year is because I am still able to. Each day is a precious gift, especially when you have a progressive disease that has no cure or treatment. My life celebration is a way for me to give thanks and be grateful for the love and support of family and friends.