When I visited Ed Gulley yesterday, Carol was out shopping. I itched for a portrait of these two photogenic and charismatic people and so I went back today after lunch.
I am sorry about Ed’s cancer, but it is good to see these two so happy and in love, both of them say they have “bonded” dramatically since Ed was diagnosed with advancing brain tumors, and it is good to see them so happy together. Carol is also my friend and I could see the stress and fatigue in her face.
But they have finally, she said, had the time and motive to really talk to each other and understand one another. Cancer, like any other thing, can be a gift, and they both know it.
This time to talk and reconnect t has made both of them very happy, soul mates once more, and it was a pleasure to see it.
Ed and Carol both surprised me – we had a long and sweet talk this afternoon by Ed’s bed and chair. I asked them if they hadn’t bonded before in their 45 year of marriage. They said no, not really, they never had much time alone, they never had much time to talk to each other, they were just too busy with the daily grind of farming.
They often drifted apart, and Ed often neglected his children, he was so busy with the farm.
Ed admits he had little time to spend with his children or his family, he said he gave up too much to his farm, even as he loved farming. He rarely told his children or grandchildren how much he loved them, he said, and he is making up for lost time now. I think he’s telling Carol that now, too.
Carroll and Ed both said on their recent journey, they talked and talked and reconnected in a beautiful and loving way. Carol said she finally understood why Ed seemed too busy and remote to spend more time with his children. She said it was because he was working so hard for them that he just didn’t have any extra time and energy.
Their closeness is palpable, they are so much in sync and together, especially since Ed learned of his illness. Ed and Carol are planning another trip together, this one to Maine. Ed has been in touch with a number of people who have told him of the many years they have lived happily with brain cancer just like his.
I realized today that Ed is becoming increasingly convinced that he is not dying soon, or perhaps at all.
He said when he went on his trip to the Badlands in South Dakota he was certain he was near death. Since he got home, he has had a transformation. Even though he has lost the use and control of much of his left side, his hand, feet, arm, he is in no pain and is eager to do many things, including take another trip.
His family is tearing apart the farmhouse to rearrange the living room into a bedroom and office for Ed, it is big, flat and close to the bathroom. He is eager, he says, to project to the world the importance of being positive and living in the present. He certainly has been energized since he got home from his trip, the family has gathered around closely and is, I think, lifting him up.
He has plans to travel, lecture, write and paint. You can follow his writing and poetry on his and carol’s blog, the Bejosh Farm Journal. They are, he says, moving ahead.
I think I am finding my role in all of this, especially since Ed has come home and we can talk face to face. We are very comfortable with one another. I think what I need to be is myself.
When people get sick, there is a tendency for other people – especially on social media – to adulate and praise them for fighting and struggling and being heroic.
Ed gets messages all day telling him how wonderful and brave and honest he is. That can be beautiful, and it can be dangerous or misleading.
But I know that praise alone can be misleading. That is not the role of the friend – to be a cheerleader. My idea of the friend is to be just the same as I always was, to be familiar and honest, to say the things he doesn’t want to hear sometimes.
My job is to remind Ed that being sick alone does not make one wonderful, we can never take ourselves for granted.
I am not Ed’s cheerleader, not here to shower him with praise and admiration. A lot of people are doing that. And I do not believe that is what he wants from me, or what I want from him.
I’m the one who tells him the truth as I see it and as I believe he wishes to hear it. When we get close and look into one another’s eyes, I see a friend who relishes the truth and treats life with respect and dignity. A friend who wants to know what the reality is.
A friend who must always look beyond himself, as Ed is working hard to do.
Sometimes, his eyes look pleading to me. Sometimes, they are just looking elsewhere, they are not there. Sometimes, he is drinking up the excitement of being the object of so much attention.
I know that an illness like this is an agent of change, it changes the person who is ill, it changes the people around the person who is ill.
Every day that I can, I plan to stop by and say hello, drop off sandwiches, look into those eyes and just be myself. I am not fans, I am not family, I am not a therapy volunteer, or a doctor, or come to say how wonderful he is. I’ll leave that to others.
it is good to have him home, good to see him often, good to hear his thoughts and see his feelings as they churn and bubble. That has helped me to see where I need to be in this.
Ed is a truth seeker, he is always seeking to know. My job is to tell him what he wants to know when he wants and needs to know it. That is what a friend does.