Our experience with grief and loss

[Chris] This is something I wrote a little while ago but still summarizes many of our emotions and experiences. If you don’t know the general background of Emily’s health and family history, probably read this first: Em’s Health Background.

A few years ago we learned that all the cancer in Emily’s family was due to a rare genetic disorder, Li Fraumeni Syndrome, which predisposes a person to any type of soft tissue and some other cancers. We decided Emily should be tested for the disorder so we knew what screening, if any, she should begin as a result. The test came back positive and so began our ongoing experience with grief and loss.

The initial positive result was a shock. Emily’s brother and sister had a different dad and mostly grew up in a different area. We always lived with the blissfully ignorant assumption that one of these differences was the cause of their cancer; after all, Emily had survived childhood and was healthy. While Emily’s positive diagnosis was a shock, it was more confusing than anything else. Why did we feel so sad when she was perfectly healthy at the moment? How is it that we can feel blessed to know this and at the same time we feel like we are grieving the loss of an optimistic future?

Since the initial diagnosis Emily has collected a great team of doctors and formulated a screening plan that results in dozens of appointments and tests every year. Also since that time, Emily’s mom has been diagnosed with pancreatic cancer (her 5^th cancer), and Emily, in her mid-twenties, has had a cancerous tumor removed and had a bilateral mastectomy—and lost her job around the same time, incase cancer wasn’t enough. Emily’s tumor was not incredibly scary in-and-of itself, but the fact that she has developed something so young has shaken us. It seems that with Li Fraumeni Syndrome the younger a person is when they begin to develop cancer, the more likely they are to develop second, third, fourth, etc… primary tumors.

The difference between our grief and that of someone diagnosed with an isolated, acute disease is the ambiguity of our future. On the one hand, we are young, healthy, happily married, active, smart individuals; on the other hand, we feel like we have a time bomb attached to our perfect lives and we do not know how much time is left. Sometimes we almost feel foolish for letting this bother us, everyone is going to die at some point and we never know when that might be. This feeling of foolishness further complicates feelings of grief and we find ourselves oscillating between sunny optimism and dark pessimism. One day I may be thankful for the modern advances in detection and treatment while the next day I can’t help but think what my life would be like without my best friend.

And what about kids? If we have kids, we will have a 50% chance of passing this on to them. Now, who is to say that their lives wouldn’t be worth living even if they get sick at a young age like Emily’s siblings? On the flip-side, the guilt we might feel and the stress we would deal with could be overwhelming. What’s more, what if I have a sick wife and sick children at the same time? What if I am left as a single parent, or worse, left without my best friend and my children? Now am I just being unduly grim? Should I snap out of it and enjoy the great life I have right now?

So we have been blessed with currently healthy bodies, a great life, good insurance coverage, great medical care for Emily, and a great support system—what have we lost? Well, we have lost our ignorant optimism for the future; we have lost the ability to live in peace not having to wonder what the next test result will say; we have lost the expectation of simply and naturally having healthy children; we have lost the privilege of having carefree, joyful discussions about when to have children; we have lost the expectation of growing extremely old and senile with each other; we have lost the ability to know how we are supposed to feel about all of these things.

What does this loss feel like? I think that grieving a death, or even an acute illness with immediate ramifications, is like a punch in the face or a kick in the groin. It might hurt a lot—it may even permanently damage or disfigure a person—but it begins to heal (sometimes slowly) and those impacted can develop a plan of how to move forward. On the other hand, ambiguous losses are more like a series of small scratches over a long period of time. No one single event has hurt too much—especially when a cancer diagnosis becomes a relatively normal occurrence—but each test, result, and pessimistic thought about the future is another scratch. At first, we felt like we were handling everything well, we would shed a tear or two and move on. But slowly those scratches start to add up. Sometimes scratches come on top of previous wounds that haven’t had time to heal. Caring for these wounds gets tedious. Every appointment, test result, statistic, diagnosis, conversation about kids, discussion of healthcare, story of other families with the diagnosis, and health scare is another scratch. A certain level of pain becomes the norm but eventually it makes a person more irritable, more emotional, and emotionally exhausted. I find myself thinking that one traumatic event would be easier to deal with than this in the long run, at least an accident or death is defined and concrete. Rather than falling off a cliff and dealing with the pain of hitting the bottom we are slowly rolling down a steep incline, bouncing and hitting rocks and thorns along the way and having no clue when the bottom will come, what the bottom looks like, or even whether or not we want it to come.

You might find it odd that we don’t get too concerned about a cancer diagnosis or that we might find it odd that you do; cancer is part of what we do. What you don’t know is that we might go home and cry by ourselves a few days later, not because of the most recent diagnosis or event itself, but because the layers of scratches and scars are piled too high and haven’t yet had time to heal. No single event is too heavy for us, but sometimes the cumulative weight is crushing and we get worn out.

Emily and I have a great marriage and friendship. We truly treasure our time together and love the journeys and adventures we have had thus far. We honestly love our lives and hope to continue this way until we die of old age after 75 years of marriage. And while we do not dwell on the negative aspects of our life we also cannot avoid their ramifications. We will continue to make the wisest choices we can when decisions need to be made. We will continue to enjoy life together to its fullest in every opportunity. We will continue to create adventures and form memories with each other. And we will continue to hold each other in silence, crying or not, on the couch when the weight is too heavy for either of us to try cheer-up the other.

This is just one part of us and the life we love.