A diagnosis can change or end everything you thought you knew about your world. CW Nahumck is struggling with that today.
It had been two and a half weeks since the last time we visited the doctor. The last visit was our first visit, at least for the purposes of testing. Much of the prescreening genetic counseling would be old news, things that we had learned before. No shocks there. We just were there for a simple blood test. A simple, definitive answer. Two and a half weeks ago and a small vial of blood that was sent to the lab. Two and a half weeks of hope, terror, and plans.
Those two and a half weeks were up. We walked into the waiting room, waiting for the doctors to bring us to the conference room to tell us what the future had in store. Two and a half weeks and eight years of waiting. The doctors came to us, tears of terror already in our eyes, and walked us back to the conference room.
They asked us if we had any questions before they let us know the news. A further pause in the delay of knowledge. Is she a carrier, or not? Will she be sick, or not? What does the future hold? Existential questions are outside of the professional realm of the medical doctor; and really, all we wanted was the truth of the situation.
“Well,” said the doctor, “I have…”
And the world cracked for us… for me. It was cataclysmic. The world would never be the same. All of our planning, wasted. And we couldn’t stop crying.
Eight years ago, after less than 6 months of marriage, my mother-in-law was diagnosed with a rare genetic disorder. It is hereditary and there is no cure. The chances of passing it on to the next generation were 50%. Typically, the disease has a slow, debilitating onset that leads to a premature death that tends to happen at about the same time as the person who initially carried the gene. In my mother-in-law’s case, that would be the age of 52.
Less than six months into being married, with plans of graduate school and adventure just beginning to take place, and we learn that my wife has a 50/50 chance of a 52 year life-span, the last ten of which are likely to be filled with less independence, more isolation, and a near complete loss of dignity. It was devastating. For a few months, we really didn’t know what to do. Her mother was sick, but there was no cure.
We talked about returning, to see how we could help. After a lot of discussion, we decided that we would continue with our plans. We’d do the school thing, so that we’d be better off in the long run, and better able to financial support my mother-in-law when the time came. I found it easy to give myself over to the totality of graduate school and almost full-time work. Running the gauntlet meant that those worries that crept into our marriage could easily be pushed from my mind. Those thoughts were not forgotten, but the dark cloud that hung over our heads was farther off, and I could focus more on the silver linings and occasional sunshine. It would be five years in Chicago, with one undergraduate degree and two masters’ degrees before we headed back to Los Angeles and all that awaited us.
The trip back to Los Angeles was the opposite of the trip that had us leave La-La-Land. When we left after a month of marriage the road was an open path of possibilities and adventure; late night hotels, interesting sights, young honeymoonesque passion at interstate rest-stops. Our lives together were starting, and there was nothing that worried us. We had long, wonderful discussions about who we could become together, what we would do. Together, we’d make it through anything.
The trip back was filled with trepidation, with each passing mile bringing us closer to our final destination: the family home, to help take care of my mother-in-law. Each day was heavier on my mind and heart than that last. When we arrived, what we found was a situation worse than we had imagined.
It is different for me than it is for my wife. When I saw her mother, I was filled with compassion and a desire to help her as much and as well as I could. There was obviously only so much I could do, and some tasks required my wife’s attention to protect her mother’s dignity. When I saw my mother-in-law, I saw what my wife could turn into, but my wife saw what could be her future. 50/50.
It takes a different toll, I think, to be caretaking for someone whose life situation is your possible future. Now, I don’t mean to minimize other’s suffering, but given the nature of the genetic disorder, it is rough, and at times embarrassing, to live with. Eventually, everything that you work for is taken away. We went from enjoying Chicago and building a life with the shadow of the future distantly held away from us, to living with the specter of the future, stalking us every day as we worked with compassion to show a woman dignity that she would likely not have in public. I knew that no matter what I was working through and dealing with, all the thoughts of being alone and worry, were nothing compared to what my wife was shouldering. I knew that nothing I could say would make it better. All I could do was be present, with no answers and no real understanding.
For my wife, there was only so long that she could wait. After two and a half years of living day to day with a possible future staring her in the face, she had enough. It was time to get tested. She had plans, she said, and she needed to know how best to move forward.
When we first found out that this was a possibility, those eight years ago, I had wanted to move forward with testing. I pushed – too hard. I thought it better to know. My wife was not so sure. She was hesitant to learn her future, and the weight of that knowledge was too much for her back then. And I was more concerned about managing my own questions and fears than listening to hers. She said no testing, and I learned to listen to that and be patient. I had settled into a routine that allowed me to plan what I could for myself, and give her the space to live her life and dream.
For the most part, I think we did alright. She studied abroad for a semester in Rome (while we were married, which was pure hell for me). We both worked and went to school. We took trips, enjoyed the city of Chicago, and learned how to be “us” away from the pressures and joys of either of our family’s direct involvement. Things were changing, however, and choices were coming due.
We were at the point where the discussion of kids, graduate school, trips and travel, career choices and all sorts of other questions that needed to be answered and could no longer wait. Not one of these questions could be answered without knowing what her fate was. The coin toss – 50/50, was blocking the future. Graduate school for her would be a wonderful and fulfilling prospect, but why work hard for three years to do something for five and then decline? Children would be great, but were we ok with putting children through the suffering of seeing their mother get sick and die before they finished high school?
So, she decided, and I supported. We would get tested, and finally toss that coin. Obviously, the truth of the situation was determined long ago, the moment she was conceived and her genetic make-up was made.
Two and a half weeks– and eight years—of waiting. We made plans; what to do if the news was favorable, what to do if the news was not. We made lots of plans. My wife was hesitant about having children, even moreso if she was sick, a choice that I understand. It wasn’t until I was honest with her and said that I didn’t want to build a life and then be utterly alone, likely losing both her and my parents at the same time, that she said ok to children. They would be expensive, pre-implantation genetic screening children, made in what can only be described as the opposite of the old fashioned manner.
We made plans, telling people at our jobs and school that we would be taking time off when we got the results. Either way would be a life changer. Either way would require us reassessing and dealing with the news. Celebration or anguish – triumph or tragedy.
So there we were, in the conference room with the doctors, ready to hear the news. When they told us, it was like being punched in the stomach and the nose. Tears welling up, not being able to breathe, holding each other sobbing uncontrollably as we tried to make sense of what we had just heard.
The doctor said, “Well, I have good news for you… there is no sign of the genetic disorder.”
It’s strange how good news can totally destroy your life, upend all your plans, and make you feel like your entire life has been shattered. The rest of what the doctor’s said is lost on me now. When we left, we wanted to rush out and do fifty different things at once and nothing at all.
The story hasn’t ended, and even our good news has two consequences. First, my wife’s wonderful result does not mean that we are done dealing with the disease. My mother-in-law still is sick, and there are other family members who are at risk and have not been tested. Telling everyone our good news was something that we knew to be a delicate dance; how do you tell someone that you are clear but they may not be, and perhaps hadn’t thought about getting tested yet? The doctor’s said that other people will need to learn to deal with our good fortune, and while that is true, guilt and a desire to not run away and abandon others has made that process sticky and at times uncomfortable.
And second, while the news for us is good, it is still cataclysmic. Eight years of planning, of thinking about, and living as if she would be sick have had a long effect on us. I had been building for a life that would never come.
I cannot speak for my wife, but for myself I can only say that my world has been shattered. All the habitual ways of thinking about the future, of planning for the worst, of how I interact with others and live my life are no longer optimal. The old habits don’t fit reality anymore. The life I was living was a life spent preparing for something that never came. I was waiting for an event that will never happen. Nothing will ever be the same.
I find that the hard parts of the patterns are when I realize that I’m acting out of defensiveness or potential pain. I literally need to reexamine everything. What is it that I want now that I don’t have to worry about this illness? How do I want to plan for the future? What do I—and we—want to be?
The cataclysm came, and it was glorious. The world broke apart, and set us free. But that freedom from the world we feared hasn’t meant that this new world is all peaches and light. I’m living in unfamiliar territory, and I have absolutely no idea how to be in it.
It is literally starting over from scratch. I’m incredibly thankful that we got the news we did. But sometimes even with the best of news you’re still left standing there with everything around you in ashes, wondering how to put the pieces back together.