Write Away / Write A Way

Just call us the Joy-Seekers.

On January 1, my mother and I began keeping a collaborative joy journal — The Book of Joy Journal: A 365-Day Companion by the Dalai Lama and Archbishop Desmond Tutu (with Douglas Abrams).

Mom was resistant at first. Rolling of eyes. Exasperated sighs. That look that seems to convey one thought, and one thought only: Are you bleepin’ kidding me?

That may seem a bit extreme, given the seeming simplicity of the task.

But there is something you should know. My brother, Ryan — my mom’s eldest, and only other, child — passed away in July after a long, valiantly fought illness. (F*ck cancer.) Even after having lost a parent (my father died in 2007) and a sibling, I can’t imagine the grief one feels at losing a child. The unfairness of it. The helplessness. The sorrow and the rage and the disbelief that life’s ebb and flow can be so … illogical. So unnatural.

My mom’s grief has been further compounded by other losses stemming from a brain aneurysm and subsequent strokes in recent years: her general independence (she has lived with me and my wife since late 2016), her speech (she has aphasia, which has severely limited her communicative abilities), the use of her dominant hand (though she has become quite a proficient lefty), a significant portion of her sight (she is nearly blind in her right eye), etc.

The last three-plus years have been a continuous loop of doctors’ appointments, therapy sessions (OT, PT, and Speech), and medical procedures. Despite the relentlessness and tedium of this schedule, she has shown awe-inspiring tenacity and commitment, seldom allowing depression and frustration to derail her.

But to lose a child after all that? And to be so limited in your ability to act and express in the wake of death?

I can’t even.

Needless to say, the last six months have been agonizing. To deal with your own bereavement while trying to find some semblance of peace and purpose is a sanity-testing endeavor. But to try to help instill a sense of peace and purpose in somebody else? That’s the real challenge.

I believe the grieving process is unique to the person. There is no right or wrong way, no one size fits all method. We are entitled to our anger and sadness and tears. Yes, there are healthier options than those which hinder healing rather than help, but we should all be able to choose our own path forward.

But what happens when you can’t find your path forward?

While I had no choice in the matter — full-time caretaking doesn’t always allow for time off, and the first days after Ryan’s passing demanded attention to necessities such as notifying family and friends, writing the obituary, and planning the wake — mom’s first instinct was to isolate herself. Understandable? Yes. (Hell, it was downright desirable to me at times). But it quickly became apparent (to me, at least) that any benefits of this were far outweighed by the emotional and physical toll of such isolation.

My mom had sentenced herself to life in a prison of her own making, and reminders of her loss — photos, old cards, gifts and mementos — were everywhere, the penance for a crime she didn’t commit but couldn’t absolve herself of.

So, despite resistance, I insisted on some return to routine within the week. First, we went back to therapeutic horseback riding. Then, OT and PT. And finally, low-key visits with family and friends.

Yes, it was awkward. And no, I couldn’t protect her from the sometimes absurd-if-well-meaning things that people say and do in the aftermath of tragedy — nor could I protect myself, for that matter. But the great majority of those people were able to acknowledge mom’s loss sensitively, motivate her to begin moving forward, and serve as a reminder that she was not alone in the world despite feeling so.

It has been, and continues to be, a gradual and ever-shifting process for both of us. Grief is like that. Nuanced and unpredictable and omnipresent in its manifestations. Just when you think you’ve transcended some small part of it, it swoops in with a gut punch that leaves you breathless and teary-eyed.

I understood this (because I was experiencing it both firsthand and vicariously), but I don’t think mom could appreciate my awareness, so alone was she in her own grief.

So, despite the progress, there were arguments and misunderstandings and resentments. There still are. It’s a complex situation made worse by the fact that after my initial malaise — which may never have been apparent to her, given my need to get out of bed every day if only to get her out of bed — I chose to look forward rather than to look back. To make a mindful attempt to be in the present rather than to be in the past. To focus my attention on trying to find happiness rather than to succumb to heartbreak.

Because if Ryan taught me anything, it’s that life is fleeting — and that you must live in the now. There are no guarantees of tomorrow so you must find your joy today. Or try to.

But mom’s inclinations were different. They still are. And there is no easy way to give her purpose, no magical words that will allow her to forgive herself for a situation that was beyond her comprehension and control but that she feels immense guilt over, no matter how irrational.

And so I remind her — gently, I hope — that Ryan marveled at her strength and resilience. That we all do. And that the last thing he would have wanted for her was to give up. I also remind her that, while his physical being may be gone, his presence remains forever in her heart and in her mind. And I know that she sees him in the things that were meaningful to them — in every sunflower and hawk and cardinal. That’s its own gift.

Thus the joy journal.

Because joy is always there for us to find. We just need to know to keep looking, and to have faith that there are miracles — even if they’re mini-miracles — in the mundane.

While mom has been a bit begrudging (who can blame her?), she has joined me on this journey — and has been able to articulate things that still do bring her joy.

Our respective lists, thus far:

Mom: Beauty, Sunflowers, Cardinals, Memories and mementos of Italy, Linda (her sister, whose birthday is today) …

Me: Opportunity, A good cup of coffee, Writing (sometimes), Good things happening to good friends, Laughter — especially my mother’s …

My hope is that, gradually, this will lead to a change in perspective. It’s so easy to think about the things that we don’t have, the things that have been taken from us. But it doesn’t have to be quite so difficult to recognize the things in front of us — no matter how small or seemingly inconsequential — that remain, and are just waiting to be seen. We just have to remember to look.

This is not to say that the joy journal minimizes our loss. It doesn’t. But it does remind us that there are still reasons to live.

JBV