I wrote this about a month ago but waited to post it until Laura and John were ready. They have had many hard choices and hard conversations in the past month. They celebrated what is very likely their last Christmas and New Years together. Please surround them with love as the days and weeks ahead will be beautiful and tragic. If you pray, add them to your list.
I knew about Laura long before I met her, and I was determined not to like her. It was petty and childish, but that is what chick jealousy looks like. I had worked for a small community based hospice from 2000-2006 and then left to work in aesthetics and plastic surgery. I needed a break from the deep dive of end of life care, so I found the shallowest pool medicine had to offer. Sometime after I left hospice, Laura started there and became friends with my former co-workers. I could see her posts on their facebook pages and her sense of humor and relationship with them. It was a relationship I missed having. I felt replaced, and I was jealous.
Five years later I returned to hospice care and Laura was still there. She and I both worked in the admissions department, and as I got to know her, I couldn’t help but love her. Laura is beautiful inside and outside. There is something unworldly about her. Picture a real life Snow White. She has the grace and humility of a Disney Princess, but a silent strength that should not be overlooked. She is equal parts tough and delicate. I’m certain that she wakes up in the morning singing while cartoon birds and mice help her get ready for her day. Laura is fair, and good, and kind. She’s also funny and at moments crass and irreverent. Her laugh sounds like the combination of a bubbling brook and songbird. Laura and I are not a dynamic duo though. We are two parts of a trio that is completed by our friend Ana. If Laura is Snow White, Ana and I are her two faithful Dwarves, Bitchy and Snarky. My only real concern about Laura is that she considers me one of her best friends, and it makes me question her judgement. She’s so amazing I actually look at her and think “why does this incredible person love me?”
No one in our trio works in hospice anymore. End of life care is wonderful and rewarding, but at times you need to step away or you’ll find yourself giving from an empty cup. We stay in touch by the occasional happy hour or more often meeting to walk along the river that winds through the north end of town. Ana was the one who picked our walking spot, and every few weeks we meet there for an hour. We walk at the pace of Ana’s two year old. We watch out for bull snakes in the summer, and just try to stay warm in the winter. None of us are good at small talk and nothing is off limits. We ask each other hard questions and challenge each other when we disagree, but with the understanding and profound respect of old friends. Steel sharpens steel. These women keep me sharp and humble. They are good medicine.
We have a lot in common. We are all wives and mothers. All of us had complications with either fertility or pregnancy. We’ve all faced varying degrees of uncertainty in our marriages. For me it was Garry’s cancer. Ana’s husband is an immigrant and a muslem. Laura’s husband, John, has CF (cystic fibrosis). When I met Laura she and John were dating. Laura always had a giant bouquet on her desk from John. Garry has never been overt in his affections (he has other gifts), and I was always a little jealous of how John showered Laura with romantic gestures.
If you are not familiar with cystic fibrosis, it is genetic and life limiting. The average life expectancy is 37 years old. Laura got married with the full knowledge that she would be a young widow. This was years before Garry had cancer and I remember wondering if I would have made the same choice to marry someone I would not grow old with. Would I let love win, or fear win? Laura let love win, and in doing so wrote herself a beautiful love story. A few years after their wedding they brought a perfect little boy into that story, and the man who was lucky to be alive became a father. I remember when they started contemplating children, my son was a toddler and I told her “if Garry died, our son would be my greatest comfort”. I know I’m making it all sound like sunshine and roses, and it’s not. Marriage and family are hard work in the best of circumstances. Health issues do not make anything smoother. But still, the beauty of their choice to marry and have a child are not negated by the pain and the work it takes to manage a marriage like that. Life for Laura has not been easy, the road she chose is not comfortable, but she almost never complains. She understands the cost of mortal love more than most. She bares it with deep elegance and strength.
When Garry got sick Laura and I had offices that shared a wall. The day Garry called to tell me he had melanoma. Laura was on the other side of that wall and heard me scream. When I came back to work a week later it was her office that I wanted to sit in. It was her knowledge and understanding that I needed most. It was her arms that I needed around me. It was her eyes I needed to look into and know she understood. She had seen the monster too, and she knew what I was going through. It’s a horrible club to be in, but it was comforting to know someone who had navigated it before me.
There were differences between us. Laura did not have the rug pulled out from under her. She had only ever known John as sick. The other difference was that Garry could live. That was never going to be the case for John. Even if they had a magic cure for CF John had been through two lung transplants and would eventually need a kidney transplant. He had been on immunosuppressants his whole life. All of these things are hard on the body and increase your risk for secondary diseases and death. There was hope for Garry and I, but not for Laura and John. Yet Laura was always controlled and refined. My style is a little less controlled and quite unrefined. Laura was everything I wanted to be as Garry’s wife, and I’m afraid I fall quite short.
John has always been in and out of the hospital, any infection is potentially catastrophic for him. He can not safely be vaccinated and depends on herd immunity. When Laura was quite pregnant John got sick and had to be hospitalized. She looked at me with those giant blue eyes pleadingly and said, “Please not now. He can’t die now. ” He didn’t, but at that moment I was struck with what she lives with daily, with the burden she carries, and how well she bears it.
Being the spouse of someone with a potentially life limiting illness is really hard. We are swimming in studies that show how detrimental it is on a caregivers health. It’s incredibly isolating. Laura said she often felt invisible. When Garry was sick I remember feeling like I wasn’t invisible, but I was utterly inconsequential. It’s our cultural norm that the caregiver/spouse/significant-other is sidelined until they are widowed. Then and only then does their story and experience matter. So having someone who could relate and be present in the loneliness was like sunshine and air. Laura was a lifeline for me, and I can only hope that I am and will be a lifeline for her.
As I write this, John’s health is declining. He is running out of options. They are moving towards Christmas with a loss of so many things, certainty, control. Hope is always present, but it evolves. You learn to hope for different things. You hope for peace and a good night’s sleep. You hope for decreased pain, and fear, and anxiety. A few weeks ago she said “There is nothing left but love, and it’s that love that has made all the hard things worth it. I’m so glad I stayed and did the hard work”.
I’ve been walking with Laura for a long time. I am honored and humbled that she allows me to walk with her through this next phase of life, and into the mystery that lies beyond for her. I will grieve with her. I will ache for her loss and her sons loss. I will route for them both as they find joy again, and I will learn a great many lessons from her. She has always been my teacher.
I love you Laura. You knew you could do this the day you walked down the aisle. You are good at hard things. I know it hurts, but life will be awesome again. You will make it awesome again.