As each member of the group entered the room I introduced myself and I was welcomed with hearty handshakes, but I also noticed the sideways glances. I was welcome, but not one of them. This was a group of cancer fighters, a group of men who shared a common struggle, prostate cancer, and some brought their wives, but I was an unknown, a stranger, not a foe, but not a friend.
Cynthia, the social worker and organizer, eventually introduced me and mentioned my book.
Instinctually, I knew I had to diffuse this immediately.
“Hi, I’m Bob,” I said, “my book can be purchased on Amazon for $1.99, and out of that lofty price I make sixty cents. Do you know how many e-books I have to sell to walk into Starbucks? I want you all to know that I am not here for the money.”
They laughed, and this helped, but I still had not proven myself as worthy of speaking to these men, these families.
“I have no professional expertise, I have no medical degrees, but I have been a caregiver to my wife for four years. I have experience that most of you will never know and would not want to, I am here to help,” I said.
OK, I may be remembering my own words with a more noble and altruistic echo, but that was the gist of what I said, or at least what I meant to say. This did have my intended effect. I was earning credibility throughout the group, but I was still not one of them.
It was not until I showed them my wife’s x-ray, the one that showed her lower back removed and titanium put in its place that they began to melt. It was when I described how she willed herself to walk, and then the day the titanium in her lower back fractured and the agonizing suffering she went through that I finally earned the membership I was quietly and desperately seeking.
We ended up sharing our strengths and fears and frustrations and tears. It was cathartic and empowering at the same time. And I will always remember the fear I saw in some men’s eyes. It was the fear of leaving a family to fend for itself and the very visceral fear of death itself. These were the eyes I most wanted to comfort if only for a short while.
We were now family.
I implored them to take care of each other. I told them that as much as caregivers take care of their loved ones, the recipients of that love needed to return it to their caregivers, the care has to go both ways. I told them that cancer was a word, but their attitude could be a prison; break out today. There will be time to mourn later I told them, fight to find joy in every moment. The words spilled out of me much like a prayer, but an intense, fervent prayer, and they listened.
Sadly, when they asked questions, it was mostly about our network of friends who labor to keep us alive. How often do they deliver dinner? How did you find them? How do you communicate with them, organize them? How did you find them?
It was not until I received an email the next day from a good friend, a retired hospice nurse, that I realized their greatest fear was abandonment.
The medical community was there to treat their disease, but there were few resources to address the fears and confusion of these families. I recognized in them the same loss of control that I went through perhaps three years before. These were good people, good families grasping at the smallest certainty they could hold on to, the certainty that they were not alone, but even that was in doubt. It was made painfully evident to me that support groups cannot replace the loving care of good friends and family, and that the love pointed in their direction needed to be redirected to the most useful and practical tasks.
It was at this moment that I finally and fully realized how fortunate we are. We have a woman of small stature, but great integrity, that organizes our support with the least amount of intervention on our part. She communicated with my wife while my wife still had the energy to do so, and now carries out my wife’s wishes in spite of her current weakness.
As cancer families go, our journey has been a long one, and we’re being forced to take the exit labeled “terminal”, but we could never have gotten this far down the road without our supporters, our silent saints.
It breaks my heart that some families will never know the miraculous comfort we’ve been provided. It breaks my heart that we’ve been provided this enormous gift for years without providing to you, our caregivers the recognition you deserve.
So Christine, Barbara, Natalie, Jim, Jonathan, Maude, Arminee, and Linda please take a bow along with another dozen people I’ve failed to list. What you consider effortless we consider critical.
And Cynthia at the Cancer Center, Sharon at Komen Breast Cancer, and Bethany at the Leukemia and Lymphoma Society, take a bow for what we are going to accomplish. Our job is find people like this for the families that need it most, and a cure.
I believe in some small ways I was able to help by telling the story of my wife’s cancer, our battle through the medical system, and our caregiving experience. I know that in return I received a deep appreciation for our support network.
The blessings went both ways, and in the end, isn’t that what cancer support is really all about?
Reposted from my blog: http://besidesthecancer.org
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