Growing up, there were always kids in the streets…. Playing stickball, riding bikes, chalking out hopscotch boards on the sun warmed cement. In the winter, snowfall brought sleds to the few hills we could find on the flat Hempstead plains, later farmland, that our town was built upon. So the sumps that reclaimed our rainwater or the woods nestled in the curve of parkway exits provided us with the vertical we needed to get some good speed on our flexible flyers. Building forts, snowball fights… voices carrying in the wind. Memories.
We were a loose ragtag group that all lived in the development of houses on the edge of our town.
We were separated from the next little village over by the remains of Old Motor Parkway. Part of Vanderbilt’s 1908 motorway that criss-crossed Long Island, it was now a kid’s paradise of wooded thickets and fields with intriguing bits of cement and macadam that reflected its earlier use. It defined us.
Bordered by what were then considered busy roadways, we were insular as a group. We were on “that side of town” so otherwise removed from the rest of our hamlet until we were old enough to brave crossing Glen Cove Road. It was, therefore, of no surprise that any kid in our neighborhood could and would be called on to fill out a pick up team or invited on an adventure.
Rich and I grew up in that same neighborhood together.
Memories of knowing each other go back to his earliest cub scout days when he and my brother were in the same den and my mom one of the leaders. Billy and Rich grew up together, graduated high school together, and through our marriage, became family together. In 2014 as Rich left his stem cell cocoon, my brother began on his own series of cancer treatments complicated by the diabetes he had for forty years. Conversations that used to be “remember when we…” now became “what do you do when…” Billy’s treatment and its effects has never been my story to tell. His decisions and twists and turns on his path were never mine to relate. Forever, though, will his journey be entwined in ours.
As I lay awake at 3am those early post-hospital nights, finally back in our own home, my cell phone would ping a message “Are you awake? Can we talk?” and moments later I would answer my buzzing phone and we would be whispering to each other; shades of those times when one of us would tiptoe across the upstairs hall in the house growing up and sneak into the other’s bed to giggle and connive well after lights out… feeling like we’d pulled off a great coup in fooling our parents. The subject matter as we chatted was now more serious but the connection of those days when he would tease me by singing out to me “Missy-mou I love you” in a tangle of our Irish and Greek heritages, that connection was still there.
There came a time last year when physically we could not be together. With both Rich and Billy having compromised immune systems, the passing off of random bugs made it impossible. Nick and I tried but despite our best efforts to decontaminate ourselves on getting home from a visit, as if we’d been exposed to some sci-fi outbreak, Rich would end up in the hospital. It was a very difficult decision, but the consequences were too severe to allow. Our doctors had to finally put their collective feet down. But as Rich traveled some interesting roads to relieve his neuropathic pain, we always, at the end of each consult, discussed Billy’s own pain and his current treatments with our gurus to see if what we were about to explore could be viable for him. Always, his health and possible options were with us on our own journey and we’d share our findings.
As with many who find themselves in the world of severe and/or chronic illness, the concept of the “right” way to go, the “correct” treatment to take, the “proper” protocol to follow, is ambiguous. At first diagnosis you are overwhelmed. There are so many questions, there are so many days of anxious waiting, there are so many different answers. Finally, you connect yourself to a group of experts and you are then tasked to determine how much of a partner you will be with them. Do you question decisions or accept without hesitation? Do you research, explore, delve or leave it to their expertise? Do you conserve the energies you have or do you push past the ever-present fatigue? How much do you have to immerse yourself into your cancer life and how much of yourself can you continue to hold on to?
In reading forums and blogs these last few years, it’s been very apparent that there are as many ways to take on this illness as there are people who have been diagnosed. These decisions are very personal. Not just by agreement between caregiver and patient, but ultimately by the patient themselves. Many times have the discussions between Rich and I been lively as we weighed the options before us. Mostly we’ve been in total agreement, but as the one who has to deal directly with the consequences and effects of our decisions… there have been compromises for the sake of Rich’s comfort while balancing the needs of health… always, ultimately, he has had final say.
Have we sometimes pulled a few slightly unauthorized bits and pieces from our bag of magic tricks to get him the peace that he needed… absolutely! But overall, our group of gurus has been stellar in listening to what our concerns are and working with us for, not only the best possible outcome, but for the best possible quality of life. Are these decisions the same as someone else in the same situation would have made? Nope. Our journey is ours. We cannot speak of nor judge choices that others have made, only our own.
But having been on the other side of that mirror, we can understand the frustrations and pain of those who are bystanders with hearts firmly entrenched. It isn’t easy to see those you love struggle with these choices. As we have continually been lifted up and given strength by those who follow and support us, we have also been alongside and supporting those who are finding their path to health, recovering from treatment or, sadly, have left us too soon.
Names that are still on our list of guests here and elsewhere on social media belong to some who are now gone from this life except as cherished memories. The Greeks say “May their memory be eternal.” They live on within us all. One of those names on this list now belongs to my brother.
On November 13th of this year, he peacefully died in his sleep from complications of multiple myeloma and diabetes. While others have celebrated and given tribute to his life and career in music, Rich and I find ourselves celebrating the boy we both grew up with. When we rejoice with his music, we remember him singing at our wedding. When we give tribute to his career, we remember his “job” as uncle to our kids that he was so successful in achieving and the love and laughter he brought them. We mourn the loss of our cohort who shared so many memories with us both. No longer will there be those “remember?” moments from him. We now carry the light of his memory within us. We are the sum of the people who have touched our lives. That they are gone does not diminish that sum, but increases the light within us. May it always shine brightly.
In this season of lights, we celebrate life in all its glory and cherish the memories of days gone by. Peace.
Use What Exists 