Waiting (and waiting)

Undiagnosed, I am certain I qualify as having ADHD, given my lifelong symptoms. My brain often moves like lightning from one thought to the next, progressing through steps A-Z in an instant, often skipping several pertinent, but pesky letters in between. I had the chance recently to look through a collection of my report cards, and the theme was consistent – “Elin’s grades would improve, if only she would apply herself.”

Waiting for me has always been difficult – waiting for my chance to speak, waiting to be called upon in class, waiting in line at a buffet, waiting for the previews to end and the movie to begin, resolution of the “WAITING FOR PAIRING” announcement given by the Bluetooth emulator as I start up our circa 2006 Toyota Rav. Life is filled with waiting, and being patient is so much more impactful than just having good manners and allowing others to go first. There is an unmistakable anxiety that swells in my body while waiting, anticipating action and worrying about my ability to meet expectations.  

Recognizing the anxiety as a young adult, I began to test those instances in an attempt to de-sensitize myself against them; intentionally letting others go before me in line, waiting to speak up in a meeting, serving up the nicest-looking plate at dinner to a guest instead of securing it for myself, intentionally taking the chipped coffee mug from the cabinet… each exercise designed to tamp down the anxiety that threatened to expose me to the world as an impatient and self-centered person. Doing so opened me up to the world, gave me the time and space to truly see other people, and the intuition to cater to their needs. Those skills served me well as a mother, as a caregiver to my own mother with pancreatic cancer, as support for my sister, widowed at 53, and as a caregiver to my husband with FTD/ALS.

While advocating for my mom in the ICU I learned to lean into what I called “hospital time”, the time between visits from the nursing staff, the time it takes to bring needed meds, the time waiting for surgery reports, even the time it takes to be discharged after an extended stay.

After we brought her home on hospice, time seemed to slow down, every moment pregnant with possibility, poignance, and permission. Listening to her quiet breathing, anticipating her pain, learning her physical needs all led to a greater bond with the woman I’d had such a difficult relationship growing up, her fragile state igniting the nurturer in me in a way even being a mother to my children did not. Waiting became second nature; serving did, too. Overall, “waiting” became sacred in a way I had never experienced before.

My mother’s death opened a chasm filled with conflicting feelings – sorrow over being motherless, relief that she was no longer in pain, gratitude that we’d had time to repair our relationship and express the love for one another that was hidden by the strain in our past interactions. But it was the waiting, the time spent, the hours together in silence that reformed me the most. It was in those moments that I learned to be still, to listen, to absorb everything around me, to just BE, and for that being to be enough.

A few months after the COVID shutdown lifted and the world began to open up, I was hit with the sudden realization that my husband had “something wrong with his brain”. Larry came home from a training session for his new job and announced, “I’ve just been fired,” in a very nonchalant and unaffected way. When he told me the reason – he’d confidently told his new boss he was going to carry a box-cutter, brass knuckles, and a screwdriver in his backpack every day, “to use as weapons in case the kids on the bus attack me” - I knew something was very, very wrong. To say the floor fell out from under me is an understatement – my anxiety exploded and my brain whirled at a dizzying speed. I tried to understand what I was seeing, tried to decide what to do first, scrambled for control over his out-of-control behavior, and searched vainly for doctors who could identify the problem.

Once we had our diagnosis of FTD, I fought valiantly for our new “normal” but found it difficult to be philosophical about this next waiting period, filled with uncertainty and fear of the unknown mingled with the daily challenges with behaviors and the ever-changing loss of function. Instead of meeting each day with an open heart and a desire to fill each moment with meaning, I found myself waiting for the next disastrous behavioral episode, the next loss of function, the next person attempting to comfort me by asserting, “I know what you’re going through, my grandmother had Alzheimer’s.”

When we were given the eventual diagnosis of FTD/ALS, my anxiety came to a head, my grief found resolution, and I finally knew for certain what it was we were waiting for – Larry’s eventual death. We wouldn’t seek intervention; a symptom of his dementia, anosognosia, made it so he didn’t realize he was ill. I couldn’t get him to sit for a nebulizer, how would I explain NIV, or a feeding tube?  I knew our search for answers was over, that ALS diagnosis let me finally relax, understanding that now, we waited for his suffering, and ours, to be over.

Now that Larry is gone, I find myself waiting once again – this time, I’m waiting to see what the rest of my life without him will turn out to be. Gone are the dreams of retirement, traveling with him, sitting on the porch watching the world go by with him... but grief has settled in to stay, and I am waiting for the pain of this experience to diminish, to feel at home in my own body, in my own house again, to want to be involved in the world outside my door again.  Though I have found peace with Larry’s journey, and meaning in advocacy, both in the FTD and ALS spaces, I long for the time when this doesn’t hurt so much. I wonder if there will ever be a morning that I wake and my loss is not the first thought of the day, or a night where it is not my last.

I know that I will never find answers to the questions brought on by Larry’s dementia, or any sort of closure, or understanding of how he felt in those last months. After my mother’s passing, I came to terms with becoming an orphan, I am now coming to terms with being a widow and waiting for healing. For now, I am waiting to be recoupled with my sense of self, waiting for the return of my confidence, my certainty, and to understand my place in the world. In the really dark times I ask myself, “Will it ever come? How long must I wait? How can I bear this waiting?” The darkness whispers back, “It will. It matters not. You can.”