Monday, April 10, 2017

Keeping it Normal in the Age of Digital

No matter how much control you think you have in life — events come along that prove how wrong you are. Last October, my brother lost his four-year battle with a hideous disease called Myesthenia Gravis. He was just short of his 71st birthday - much too young to leave this place. My brother, who had been my protector in the early years of my life in so many ways, and who continued to be my friend as adults, was gone…just like that. He was a big strong guy as long as I can remember — older brothers are always that, right? It was really hard to watch as a disease destroyed his body and his strength day by day. 

As odd as it sounds, I have been given the gift of being able to sit with friends in their final days and hours while they were in home hospice care. In those times, I believed my purpose was to do what I could to make that time feel as “normal” as possible. So regular conversations continued, accompanied by normal periods of silence. Dogs and cats were allowed on the bed as they were in normal times. I always treated the time just as if the friend had nothing more than a common cold and we were just hanging out together waiting for it to pass.

When my brother sent me a text, telling me he had made the decision to have his feeding tube removed and that hospice had been called in, as you can imagine, I had a rush of mixed emotions. While there was anger, lots of anger, it wasn’t targeted at him — it was targeted at the damn disease. My first thought was to orchestrate my life so I could go be with him. I knew his wife was there, along with his son, a few of his grandkids and Ollie, his bulldog. He was at home and surrounded by people who loved him. My inner voice told me I could better serve him by staying home and trying to keep things as normal as possible for him. 

I know it sounds odd — but pretty early in the progression of the disease, my brother had lost his ability to speak; but he was able to text. Over the years we talked via text here and there throughout the day. One of his texts to me after the initial one where he had told me that hospice had been called in said that he was was remembering something we did as kids — and how much fun we had. The lightbulb went off. Over the next ten days I sent old photos of the two of us together and talked about what I remembered of the events. As heartbreaking as it was, it was also comforting. It was good for both of us to look back and remember and share. I shared the texts with his kids, one of whom was there with him, thinking they would enjoy hearing the shenanigans of their dad’s childhood. When my brother could no longer see or text, I asked my nephew if he could please describe the pix and read my little story to his dad. I had no idea which story would be the last…I just kept gathering old photos and writing short memories. Just trying to keep it normal.

My brother passed peacefully on October 16, 2016 at home with his family. My heart was heavy and still is; but I know that he is out of pain, strong and happy in his new place. I also feel him with me every day, I just can’t see him. He still helps me make lighting decisions when something I am trying to photograph is giving me a hard time. I chuckle every time I hit the brakes in my Jeep and pull off the road for a photo opp! He’s sitting gunshot saying “watch the mud, watch the mud, watch the mud!” On more days than not, you will find me wearing one of many Parr Lumber sweatshirts of his that I acquired over the years. I am now the “last man standing” in our little family. I am so happy that we got to spend those last days sharing our “remember when” stories. I hope that he knows what a gift he gave me by letting me gather old photos and share old memories with him. I will always be grateful for that.

As it turned out, this was my last text to him, sent a few hours before he passed. There was no pix, it was me remembering this:

“Orange fights in the groves with all your buddies and riding our bikes through the hills. Remember the time I got knocked out on the merry-go-round thing the Sages had in their backyard and you carried me all the way home. I didn’t come to until I was on the couch in our living room. If I haven't said it before, thanks for always carrying me home.”