My mother passed away suddenly four years ago this month after a short battle with late-stage NASH. Which is impossible, but somehow true. Just a few days before being diagnosed with NASH she was celebrating with my wife and I at a housewarming party at the Shore. A picture of her from that party occupies a prominent place on our fridge; the last picture of her before our lives were all changed forever.
They call NASH the “silent killer” and in Mom’s case it was certainly true; she was only diagnosed six weeks prior to her death. Looking a little further back my family and I can identify a few other symptoms that I now know to be associated with the disease, which none of us had ever heard of before. We noticed some yellowing of her eyes and convinced her to go to the doctor a month earlier, but it took time to get an appointment with a specialist. She stayed in the hospital for a few days of testing and then was released pending the results of a liver biopsy.
As I’ve written previously: “A few days later I received a frantic call in the early hours of the morning from my Dad. Something was wrong with Mom. Luckily I was only a few blocks away and raced over to find her in a dazed and confused state, aimlessly walking in circles and incoherent, a condition I later learned was due to her liver failing and not being able to cleanse dangerous toxins from her blood. She was rushed to a local hospital, where the initial diagnosis was not good. The liver biopsy returned later that night and confirmed the initial suspicions…Mom had late stage NASH that had progressed to severe Cirrhosis. She needed a liver transplant to live.”
The time frame of my Mom’s last few weeks really complicated the grieving process for me. It wasn’t instant or nearly so, like a massive heart attack or a car accident would be. In those terrible scenarios there is simply no chance to say goodbye, no time for the Kulber-Ross model to kick in, no chance for hope to take root. And yet it was also not as extended and drawn out as someone who is diagnosed with cancer or other deadly diseases that take months or years to steal someone precious from us. No time for it to sink in, to come to terms with it, to be as ready as anyone can be to say farewell.
Six weeks. That’s how quickly she went from being diagnosed with end-stage NASH to leaving us forever. Just enough time for the survival instincts to kick in. Enough time for a family not accustomed to failure to execute a plan of attack, to plan for a transplant, to bring Mom home for a time when we thought a crash diet change and carefully administered medicine would provide a lifeboat to recovery. To learn a modest amount about NASH and cirrhosis and MELD scores and begin to hope that she could beat it.
As a result when she suddenly took a turn for the worse in her last few days it was like the rug being pulled out from under our feet. We’d had our scare, realized how serious the condition was, and put into motion a plan to get Mom out of it. My sister was ready to donate a portion of her own liver to Mom. It was going to be OK, we had told ourselves.
Until it was not.
I had another reason that Mom’s sudden passing hit particularly hard. Just a few weeks after she fell ill, my wife and I found out that we were pregnant with our first child. My Dad was staying with us in our small NYC apartment so that he had easy access to NYU hospital, where Mom was being treated. At this point she was out of her coma and we were building hope for an eventual transplant.
As my Dad slept on an Aerobed in our tiny office-con-bedroom after yet another exhausting day at the hospital, my wife came tip-toeing back from the bathroom and leapt onto the bed, whispering urgently the good news. I had dreaded waking up for the last few weeks into a reality where my Mom was terminally ill, and I’ve never been particularly quick-to-wake in any case (as both my Mom and my wife were fond of pointing out).
For the second time inside a month I found myself snapping instantly alert from sleep and bombarded with emotions. Instead of fear, worry, and anxiety, this time I was filled with the warm euphoria of a child receiving the gift he waited for all year on Christmas morning. We embraced and kissed and basked in the glory of the moment. We’d been trying for a while, and now it was finally happening.
The guilt started almost immediately.
I knew that I shouldn’t have any. The logician in me was easily able to separate the immensely good news from the immensely bad. But trying to process intensely contrasting emotions will cause cognitive dissonance in anyone. How could I be happy when my Mom was going to die without a transplant?
It was only a month in, far too early for us to feel comfortable telling anyone else and it wasn’t the proper time to do so in any case. It was looking like we had enough time to work with Mom to get healthy enough for a living donor transplant. And so we didn’t tell anyone. I’m not generally a person with second thoughts, but there isn’t a day since my mother passed away that I don’t regret not telling her about my daughter while she was still awake.
Mom had come home for a period of time after being stabilized, but had to be checked back in only a few days later. Still feeling optimistic, my wife and I took some time away from the hospital to attend one of our best friends’ wedding. It was another moment where I felt very conflicted…how can I feel joy and happiness for my friends with Mom back in the hospital?
As it turned out, Mom took a sharp turn for the worse that night, and my brother called me in the middle of the wedding to let me know they were going to put her in a medical coma.
She never woke up.
A day later, when the doctors started using ominous sounding words that they hadn’t uttered previously, I took some private time in Mom’s room to hold her hand and tell her she was going to be a grandmother for the fourth time. She had to fight through this, I said through teary eyes, because she had been begging me to have a kid for years and I had finally listened.
I like to think that she heard me. I’m not particularly religious, but I like to believe that she is, even now, watching over my wonderful daughter.
My daughter is now three years old, and I’ve been coping with and grieving for the loss of Mom almost the entirety of her born and unborn life. I use the present tense because I have found that you never really stop coping; there is no “end” to the grieving process. And my daughter has been an enormous part of that process for me.
Before she was born I read this powerful letter a mother wrote to her son about the grandmother he would never meet. And more recently, that same mother has written an excellent follow-up discussing how she has approached teaching her son about her mom. A particular quote from her latest sums up my feelings incredibly well.
I’ve never I felt more connected to her than when I’m creating memories with my children. – Emily Page Lockamy
My daughter is intimately connected to my mother in my mind. Not just because of the timing mentioned earlier, but because of the connection that I have felt ever since. And this quote is a perfect encapsulation of how I’ve coped since Mom’s death. I wish I could transcribe my feelings as elegantly as Ms. Lockamy, but you’ll have to settle for this: Every time that my daughter does even the smallest new thing, I feel the bittersweet touch of my mother’s memory stirring inside. In that way, she is just as much a part to the experience as I am.
At first, I hesitated to talk much about Mom to my daughter…Grammy to the grandchildren. Not really because I couldn’t handle it, but mostly because I didn’t know if she could. There are so many thousands of parental lessons and duties that you must deal with daily, and I wasn’t sure that I knew the best way to discuss concepts like death with her.
Turns out, kids are pretty darned smart though, and they’ll find a way to direct you where you need to be anyway. She started asking about Mom in the pictures that we have around our apartment soon after she could talk. “That’s Grammy” only held her off for a little while, however, and she soon was asking who and where this Grammy was.
“That’s my Mommy, just like Pop Pop is my Daddy,” I would tell her. “She’s not here any longer,” held her off for a bit. “She’s an Angel watching over us” raised a lot of questions about flying and fairies, and eventually led to her concluding enthusiastically that Grammy was also a “star in the sky.” I think my wife came up with that one, which we use to describe where our daughter and other people were before they were born.
Soon after we began establishing these basic facts about her grandmother, my daughter began to show some remarkable insight into my feelings. My wife can immediately tell when I’m thinking of Mom; I guess I have a bad poker tell. Strangely enough, my daughter has somehow been able to pick up on it as well, in downright eerie ways.
One time in particular stands out; we were eating brunch at a local diner and they were playing a mix of 70’s and 80’s music. A favorite song of Mom’s came on and I must have broadcast that emotional tell on my face, because my daughter immediately pouted and said. “I miss Grammy.”
She was around two and a half years old at the time, and I recall being stunned. I asked her why, and her response sent a pang of that guilt and sorrow through my heart. “I just miss her and wish she was here with us.”
I know that she likely overheard my wife and I speaking about this subject before (kids hear everything, especially the things you don’t think they hear). I know she was emulating emotions that she hadn’t even fully developed yet, and couldn’t truly understand why she was feeling genuinely sad. And yet that single utterance at an otherwise unremarkable meal did more to help me heal than anything else. It helped me finally learn one of the most important lessons in managing grief. Sharing it.
Of course, my wife and family and I had all been sharing our grief for years. We had lived through it together. And I had already started to work with the American Liver Foundation, telling others Mom’s story and doing what I could to help raise awareness. This was different. It marked the first time I would share an empathetic bond with someone who hadn’t shared in the original grief. Sure, it was just my two-year old, but it opened a door for me to realize how truly liberating such an emotional outflow can be. It helped prepare me to talk more openly about Mom’s ordeal, to start this website, to speak more plainly with all sorts of people about liver disease and my personal tale.
To my daughter, I responded that I missed Grammy too. And told her the truth about Mom.
She is still with us, and always will be.
October is Liver Cancer Awareness Month. To learn more about the more than one-hundred types of liver diseases, please visit the American Liver Foundation.