Today I had several conversations about my comfort zone. The conversations were with different people, but all were centered around the same idea — that I haven’t been in my comfort zone in more than six years.

Before Sam died, we seemed to be on an upswing. He was in therapy, on medication for his bipolar disorder, and had a great job, and was about to move into a new apartment. I was in my comfort zone. My kids were (seemingly) doing well, I had a job I loved, our first grandchild on the way, a great marriage — life was good, and I was completely comfortable in it.

Then Sam died, and even after the immediate pain and shock wore off, I realized that I would never be the same person I was before. I’d never be as comfortable in my own skin as I had been before losing him.

More than six years have passed. There have been great moments of joy and celebration, often celebrated with tears running down our faces. We have welcomed three grandchildren, seen our children grow and flourish, published books, traveled, and achieved so many things that we had wanted to do, but still, it is not the same comfortable feeling of before October 2013.

Then we have faced this ALS diagnosis. Everything is new. Medical tests. Appointments with doctors and other providers. Discussion of things to come. Truly invasive (and sometimes offensive) questions. Uncertainty. Fear. Humor. Figuring out how to eat Keto while traveling. Making house renovation plans. Being told at least ten times a day that self-care is important. Yes, all of those bits and pieces are part of our new life.

Facing the future of unknowns is exhausting and at times, can be overwhelming. Good friends and family who will look unflinchingly into that future with us make all the difference.

So, yes, I am still fully out of my comfort zone. Maybe this uncomfortable zone is my new comfort zone…

Tomorrow will be six years since Sam died. Six years. How can that much time have passed? Some days it feels like it was yesterday…

As we come on another anniversary, I have been reflecting on how much my grief has changed over these six years. Now, I can go days, weeks sometimes, without sitting sobbing in my missing of him. I laugh and smile when I talk about him, or think of him, more than cry when that happens. I can now remember him better in my mind (picture him) alive rather than dead. But the grief is still there. It still hits like a freight train, sometimes when I expect it, and more often, when I least expect it.

I also have been reflecting on what I miss most. I miss Sam walking through the front door and slamming it so hard the handle on the shade would fall off every single time — he never slammed it in anger, it was always in enthusiasm. I miss hearing him yell, “I’m home, what’s for dinner?” I miss him running in to tell us about a new song he’d heard. I miss the muddy footprints on the bathroom floor that he’d leave because he was always barefoot. I miss the hugs that seemed to not end, and how he put his whole heart and soul into each hug. I miss the recap every single Sunday morning of what had been on SNL the night before. I miss hearing his “I love you.” I miss the text messages, the messes, the hair in the bathroom sink. I miss hearing his opinions. I miss seeing his devotion to those he loved.

I also have come to understand how much I grieve for what was taken from us in terms of future memories. I grieve for the fact that we never got to see Sam hold his first niece, who he was so excited to meet. I grieve for not getting to see him dance at friends’ weddings. I grieve that we never got to hear Twiddle live together. I grieve that he is not here to help us on our journey with ALS.

Six years. The last time we saw him alive was on the bleachers at Otter Valley six years ago today. The last time we talked to him was six years ago tonight, when he called to say good-night. Six years ago tonight, he told us he loved us for the last time.

How much I wish I could hear him say it one more time…

Recently, I posted a review of the book Without Jenny by Mark Gunther. I invited Mark to share a piece with us about his writing, which is included below:

Twenty-two years ago I watched my twelve-year-old daughter Eva get killed by a drunk driver. For several months, I lived two lives. One life looked normal. I worked, worked out, ate, slept, lived with my wife and daughter. In the other, I wandered alone through the valley of the shadow of death, guilt and despair my companions, an uncompromising rigidity my face to the world. After a few months, when I could think again, I thought that I maybe could write myself out of the trauma. Despite having never done a single piece of creative writing in my life, I wanted to write a book about that day, that hour, that minute, those few seconds. I’d write from the point of view of everyone involved in it: The driver of the car. His passenger. The cop. The Good Samaritan passerby. But I never even touched the keyboard. It turned out that I couldn’t tell the story of everyone else while my own story, obscured by the froth of my two lives, remained untold.

Thirteen years passed. I turned sixty. On a lark I enrolled in a creative writing workshop. And there, in a twenty-minute exercise, I wrote six paragraphs that went back and forth between a husband and wife, the mother and the father of a dead daughter. It was fiction; it was true. I was hooked. After the workshop was over, I kept writing. The words were there, and they just kept coming. After fifteen months I had nearly 90,000 of them, ones and zeros stacked haphazardly in a file I called “Living With Jenny.”

As weak as that draft was, the words had power. They forced me into an MFA program to try and learn how to manage them. It worked; 65,000 of those words have become a novel, Without Jenny, a deeply emotional story of loss and despair, of suffering, of love and hope and forgiveness. It’s nothing like the book I had imagined; but it’s the book I wrote. The story it tells is true. I’m proud of it.

But as this story was being channeled through my fingers something else was happening to me. Books started to make a different kind of sense. I read more fiction. I saw the structure as well as the content in those New Yorker essays I’d been reading my entire adult life. I read the book reviews. I began to observe my life differently. I became a writer.

It was never something I imagined for myself, when I was young, yet it is so. I am changed. Most weekday afternoons I sit with the keyboard, and on some of those afternoons new words are there. I write stories of my past, of choices made or not made, of my years of ultra-cycling, of the constancy of love and the thoughtlessly fickle nature of living. One wall of my study  is covered with a profusion of Post-it Notes outlining my next novel. Even my emails, my business writing, the birthday cards I write; all my words have acquired specificity, color, and intention. It’s all story.

Eva’s absence grows larger with the passing of the years, rippling outward endlessly in all the moments lived without her, in the markers that pass without acknowledgement; no graduation, no career, no wedding, no grandchildren. Yet oddly enough, the corollary of grief is gratitude. Sometimes loss and love are quilted so tightly that I can’t tell one from the other.  This is what I learned from those days at my keyboard, and is what informs my writing: These dichotomies are dynamic, and it is between these dichotomies that the story lies. Their mysteries tease and entice me; my writing practice is to seek out the words that bring them into the light.

To learn more about Mark and his work, please visit his website at: Author Mark Gunther

Several years after I started my teaching career in the mid-1990s, I returned to graduate school to earn a degree in counseling psychology. As part of that program, I read many books about grief and thought that I had a pretty detailed understanding of grief and how to respond to it as a clinician.

Then, as a parent, we lost our middle son to an accidental overdose almost six years ago. While I had lost other loved ones before his death and thought I knew how to handle my own grief, I was not prepared to grieve for my beloved son. So I read books about parental grief, trying to find help to survive our reality. There were many books that talked about nutrition, religion, therapy, and other ways to handle grief, but none of them resonated with me. While we read those books, we also listened to the well-meaning comments on how his death would destroy our marriage and our family, and had to figure out how to make our own new reality with our family intact.

This past month, I picked up the novel Without Jenny by Mark Gunther. The book was suggested by a writer who knows my work as well as Gunther’s work. A novel about grief? I was intrigued. When it arrived, the gorgeous cover pulled me right in, and I didn’t even bother to read the “about the author,” which I usually do before starting a book.

Within pages, I was holding back sobs as I read about the main character’s pain and anguish as her beloved daughter was killed in a freak accident. I could feel her loneliness, the guilt, the uncertainty, the not wanting to eat, wanting to or not being able to sleep, the feeling that life would never be the same again. I read each page of the struggles Joy’s family endured trying to figure out their new lives, and how to keep their family together, rooting for them, but also knowing how hard just surviving on a daily basis can be. I relished the depiction of grief within the Jewish community of faith and wished for a moment that my religious community had such simple but beautiful rituals for grief. I felt her absolute devotion to her living son, and her desire to figure out how to keep their family together, even as their lives were so completely changed with Jenny’s death.

Beyond it being a truly beautiful story of love, healing, and hope, Without Jenny is exquisitely written. Gunther’s use of descriptive language is tight and lyrical, clear but not overwhelming. I am amazed at his ability to write from a woman’s point of view. I marveled at his ability to depict a parent’s grief, and his ability to explain the complexities of family life after the death of a child, and to do so in a work of fiction.

Later, as I finished the book, I read the acknowledgments and Gunther’s biography. Reading that he too is a grieving parent (something I hadn’t known until then) made me reflect on how writers often wrestle with their own demons as they write fiction. Without Jenny is a beautiful book that is uplifting even if you aren’t grieving yourself.

The book can be found on Amazon at Without Jenny