Image credit: Patrick Kelleher, 9 months post-stroke
This story begins with a question for the reader. Not a hypothetical question—this is the genuine, please comment below or message me kind:
When you observe a person whose movement is other than typical in some way, do you wonder if it hurts?
I’ll explain. Living with a healthy, extremely functional body for most of my life, I knew that some things hurt: injuries, breaks, burns, surgeries, cuts, sprains. So if I saw a person in a cast, I would (unconsciously) conclude that they had an injury and as a result, likely had pain. And so I went about my life. Here’s my admission: I don’t think I really understood that people born with or experiencing long term differences might experience pain with each step or movement. So when I saw an individual with an uneven gait, I wouldn’t wonder if it hurt. “That person’s leg can’t bear weight, so the cane helps,” is what my brain did with that input. I never considered what the experience of “can’t bear weight” might feel like with every step.
When my husband Pat’s stroke happened, the doctors didn’t expect him to be able to walk, but walk he does. With an uneven gait. After six years of walking with him, I know that it often hurts, as does his whole right side. His cane speaks volumes to me. It’s not just a tool—it’s a part the landscape of our lives. It represents hard work and struggle.
During my intense Lyme period, the year of invisible pain when when walking could bring tears, I think those tears instilled my eyes (and their connected brain) with a whole new skill set. These new eyes developed a hyper-vigilance to the pain of others, in addition to my own. Observing people with adaptive devices or differences in their movements released a wave of bodily reaction that I can only liken to that of a nursing mother hearing the cry of a baby. My body absorbed imagined pains. This was way too far on one side of the empathy spectrum for my emotional health, and thankfully, it has leveled off with my own recovery. That insight, though, the sense that people are accomplishing amazing feats just by stepping outside their doors? It has remained fresh.
This is one of those weeks when my body is experiencing some fall-out yuck from the injuries of darker times. Yesterday’s outing felt more like dragging than going to the produce store. It felt...big, I guess. I wrestled my cabbage and apples to the car and was ready to pull out when I noticed the person in the car next to me was wearing oxygen, which reminds me of my mother, so I paused. His door opened, and out came a four-prong cane. The most stable kind, I know, from Pat’s months in rehab. This told me that he requires quite a a bit of support from it. I waited for the whoosh of feeling, but it didn’t arrive. Yesterday’s experience was an evolution, I think.
Yesterday, I felt respect. Admiration. I recognized that he was perhaps managing quite a bit physically in his own shopping journey. I will not say that I was inspired by him (see my blog on this here: https://www.mylifeonitshead.com/blog/im-not-interested-in-being-your-inspiration). I will say that I felt a one-sided connectedness that somehow benefitted me. I took a moment to internally honor how hard he was about to be working to get through the store. I honored that since we are all different, I didn’t have any idea of his inner workings. This might be a favorite experience of his, as it usually is for me. He might, in fact, feel terrific.
No real insight here, nothing original. Just my own journey through empathy. This is where I am so far. I’m sure it will continue to evolve, and I hope it continues in this direction. This one feels pretty good.
Now back to you: When you observe a person whose movement is other than typical or unfamiliar, do you wonder if it hurts?
How do we console when our traditional behaviors and rituals are unavailable to us?
Today I was one of seven people to attend the funeral of a family elder, someone who was a source of love and joy throughout my life. He was ninety one, and dementia had taken much of him from us long ago. His was a more familiar end of life than our fears take us to these days. Sad for me. Devastating for his son. If he had died a month ago, when we began planning, his funeral would have felt familiar.
Passing when he did, his funeral will remain one of the most intense memories of my life. Never have I experienced a service heartbreaking in the way that this was. At the same time, never have I attended one so heartwarming.
Stay at home policy in Maryland dictates that funerals are graveside only, with ten attendants or less, standing far apart from one another. We were six attendees, encircling the grave with about ten feet between mourners. Only two of us were under eighty. The rabbi did a lovely job, referencing the current situation while not allowing it to take over. Then he invited us to speak, which every one of us did. From our distant slots we remembered him, and in ways it became a conversation more than a series of eulogies. Intimate in unfamiliar ways.
When it was time to bury him, as Jewish tradition dictates, the familiar shovel was absent. Today we buried him with our hands. Not all the way, of course, but enough to represent the many people who weren’t able to attend. It felt—gritty. Visceral. I held my breath as elderly mourners stooped, gathered earth, and dropped it on the casket. Helping could endanger them. I felt much further than my ten or fifteen feet away. And also so much closer.
When it was time for Kaddish, additional mourners were taken off mute to contribute to the quarum of ten people required to make a Minyan and fulfill the tradition. In this moment, I was acutely aware of generation upon generation of Jews, conducting these same rituals as best they could. Through persecution and distance and yes, plague. Never have I felt so connected with my ancestors.
...and then it was over, normally the time of handshakes and hugs. Of mutual comfort. How to express with words what we are used to expressing with an embrace? A kiss? Holding a head to our chest while a wave of sorrow is shared? I could find no words. I dug through my repertoire of gestures and offered the only physical offering I could find: A deep bow, a remnant of my years of martial arts training. Scant support, I’d imagine, but I think my cousin understood.
All that was left then was to walk away. Walk to my car while the rest of the mourners—his son, his brother—walked to theirs. Each of us alone in our experience. No meal, no quiet laughter over photographs. Grief without touch.
Photo credit: Gabriel Jimenez
Looking out the kitchen window, I sighted the vestiges of summer play—collected shells, sticks, soldiers. All abandoned to the call of dinner or perhaps a friend. They are frozen, waiting for my twelve-year-old to re-animate them with his young mind and limbs. “Time to put these away for winter,” I thought. And then, “No.”
At that exact moment, I realized: this portion of childhood, the time of open-ended, “Go out and play—and come back dirty!”? It may be behind us by spring. The soldiers and toys part, at least. My little guy is twelve now. For some his age, life has been mostly about screens, texting and perhaps even dating for months or even longer. But I’m an old-school mom. Sure, there’s plenty of screen time, but we’ve also held onto time in nature, just playing. Not throwing a ball or something else that offers structure. The “Come up with something to do. Boring people are bored,” kind of playing. And while I will do my best to continue that aspect of our days, today I recognized that it is fleeting. I could get another year or so. Or there may be months left.
James is my fourth child, which means that I have a familiarity with change. It's pretty much all we do as humans, and we are acutely aware of this as parents. Every time we *know* our children, they change. This is why your 70-year-old mother says things like, “But you love yogurt?!” Some changes we miss. Some we accept. Others we fight. I’m finding myself fighting this one.
Introspective to a fault, I’ve been exploring the why of my reaction. One thing I’m clear on. I am afraid of this new world of ours, in which young people interact primarily through technology. I am stone-aged. Of course, he is stone-aged too, although he doesn’t know it. The needs of our bodies and minds are no different from those of our ancestors, yet we have moved away from meeting them--even those as basic as exposure to daylight and moving our bodies. I read and hear first-hand about depression in very young people and want to arm my child with every possible tool. The irony is in knowing that the best tool I can offer him is to limit those that society compels him to crave--the phone, the laptop, the iPad. Communication with peers, entertainment, checking and doing homework: all involve technology. None happen while hiking. Or building with rocks and sticks. His primal needs are in direct conflict with the life he’s stepping into. Yes, that’s my fear.
What will it take? What am I willing to sacrifice to minimize this risk? What is the best path for us? I have no answers.
I’ll begin with leaving out the soldiers and sticks. To tempt him. To remind me: live stone-aged. If only for these months, or moments.
We are five years deep following Pat’s massive brain bleed, and people still ask what our lives are like. At the least, they inquire, “How is your husband doing?” My go-to response is to blink awkwardly, because a million images scroll through my head. Despite identifying as a person of words, I can’t find one. I usually settle on “the same,” because it is both accurate and vague. When I’m honest, people shift and look away, clearly uncomfortable, so I take the emotional hit and choose something they can bear while still maintaining some truth. Because the truth makes for awkward party or supermarket chatter. It’s so much simpler to reply with, “We’re fine.”
People ask because they are well-intentioned and kind, or at the very least, polite. Also because they are confused—they may encounter him sitting in his chair, chat for a few minutes, and see no difference from anyone else. We may watch a soccer game together, and while his gait is off, he may read as fine. More often, we encounter him asleep in his chair while life goes on around him. Or requiring significant help walking through the grass after the game. Or making nerve-wracking choices as people wonder, “Is that guy going to fall? Should I do something?”
It may be surprising to learn that we as family members are equally confused. The experience is akin to living with a familiar stranger. The opportunity to become acquainted with the new normal never presents itself, because changes cycle through by the day or even hour.
Brain injury is unique to each person. The type of injury. The location of the injury. The age of the person when they sustained the injury. Even (my personal favorite) whether they are right or left-handed. If I’ve learned anything through this experience it’s that brains are complex, elastic, sometimes fickle, and in control of pretty much everything. Pat's hemorrhage took place in his basal ganglia. It was described to me as, "Not much originates there, but it's kind of the corridor that everything passes through. So everything could potentially be affected. Or not." Non-committal words that offered little at the time but in retrospect were prophetic.
I have no experience in living with a brain injury. I do have quite a bit of experience in living alongside a person who has experienced one. In an attempt to offer insight, I’ve jotted down some points.
At our house, the experience includes...
...Conversations about civil war battles, but modified: names missing, longer pauses, and hours to days of sleep afterward in recovery.
...A familiarity with current events paired with the inability to make a sandwich.
...A sense of direction far superior to mine (helpful in navigating to doctor’s appointments) paired with the inability to make the appointment, fill out the paperwork, or remember the appointment.
...Carefully coordinating walks to the refrigerator or sink. Crossing in front of him at the wrong time can cause him to be flustered, or confused, or potentially fall. Movements need to be planned; we are self-aware at all times. Except when we forget to be. Which triggers neuro fatigue (below).
...Neuro fatigue. Think of your computer powering down. It’s going along, then windows close, and then...nothing. This happens pretty much daily too. Here’s how it looks: We are living life, and then the wrong stimulation hits: a loud sound, a breeze, the sun in his eyes. His eyes are immediately red and his head slumps. He sways and will pass out if a chair isn’t found. His right side doesn’t work, because the brain controls everything (see above). He can only speak in mumbled whispers. For a few minutes. Or a few hours. Or a couple days.
...Never knowing which version will be with us in any given moment, hour, day. The almost-before-stroke version? The sleeping version? The brain-is-powered-down-so can’t walk version?
...Patience and more patience. Everything takes time. So much time. Leaving the house. Walking. Finding the words.
...A collection of pictures in my phone that no one sees but I am compelled to take. Pictures of him slumped over again and again. Our unchronicled reality.
...Generally one experience a day that leaves me wondering, “Is this ok? Should we be going to the hospital (again)?”
...A fully intact dark sense of humor. Which gets us through quite a bit : )
...Art! Paintings and classes and paint and mess, when before there was none. Many doors may have closed, but he’s found a window.
If you’re confused and can’t quite get a handle on this description, I’m right there with you. If I stare blankly and blink at you when you ask how things are, again, my apologies. What I’m thinking is the above, but that’s not what people are asking, so it’s not the response I offer.
Putting words to this experience has me questioning my purpose. On that I’m clear: we are not the only people living in this type of situation, and others may find it relatable. Anything I can do to help myself or others feel less isolated is worth a go in my mind. At the same time, I am aware that reading this, you may feel uncomfortable. I’ve really grappled with this and have decided that discomfort is ok. Trust me, it’s making me way more uncomfortable than it is you. So if you can sit with my words and gain insight and apply it to another situation, this has been a worthwhile endeavor.
On my end, I promise the next time we run into one another, I will blink, smile, and reply with my usual, “We’re fine.”
Don't call me Supermom.
During a time-filling chat at the salon, my conversational partner hit me with, “You are Supermom!” Reading the panic in my eyes and waving aside my emphatic disagreement, she attempted to reassure me, “You are! Really!” (I’ll note here that I hadn’t described any momentous feat. She politely inquired about my weekend plans and I replied with the words, “Assist with science project.”)
In the exchange that followed, I attempted to make my point, but she wasn’t having it. She was determined to build my self-esteem and the clear route to escape was to acquiesce and accept her compliment. I lacked the energy to clarify my point: I don’t want to be Supermom. I want to be Did Her Best Mom. Or Did What She Could to Minimize the Damage Mom. Perhaps even a generous Marginally Above Adequate Mom.
Parenting two generations of children (both adult and elementary school age) concurrently gives me a perspective of hindsight side-by-side with the real-time moment. I’ve been parenting for twenty-eight years, and there are seven more years of togetherness here at home before our anticipated adjustment date. I say adjustment and not end because as I’ve mentioned, I’ve been doing this for a long time and I've learned that high school graduation is not the parenting final destination. If that’s the way you’re counting, I suggest that you develop a new calendar, because statistically-speaking, you are in for an emotional leveling. Whether your personal parenting lesson arrives then or earlier, don’t feel bad when it hits. We all thought that we were going to beat the odds, too. Those other parents made mistakes we had noted and made a point of avoiding, so all would be well.
We were wrong. Turns out our kids are normal humans. Flawed, like we are. While they’re young, they’re walking potential with just a few wrinkles to iron out with your stellar parenting. Thanks to you they’ll soon be ready to move through life problem free. And you try, you try so incredibly hard! And sure enough some of those wrinkles you took care of stay smooth but others develop because, you know, humanity and all. Some of those wrinkles are in their genes. Others? I hate to say it, but you as a parent likely played a part in them. I know that I did. I’m here to say that it’s okay—life comes with wrinkles. I know that I worked hard not to emulate my parents’ style of child-rearing, and I succeeded--only to make mistakes of my own. Which I will continue to do, even as I strive not to. Back to that whole humanity thing. I'm human too.
So please, keep that Supermom curse to yourself, well-wishers. Enjoy your Pinterest cakes and over-the top birthday parties if they bring you joy, but remember: You can’t ice over an entire childhood with homemade frosting. There will be gaps. It's universal, so be gentle with yourself. If you want to talk about it, I’ll be over here sitting at the Trying Her Best Mom table. I’ll save a seat beside me just in case you need a break.
During the nine years when my life was lived on and around military bases, I was an incidental observer of Taps, which is played to mark the end of each day and also to honor those who served and paid the ultimate price. When Taps is played, life on base is suspended. Vehicles pull over and remain parked. Military personnel in uniform stand at attention and salute. The rest of us stand in silence. At times I would feel my eyes fill as I appreciated the sanctity of the act, but today was different.
This afternoon I was was privileged to attend the military funeral held in honor of a loved-in member of my family: Russ Decker, father to my sister’s husband. Russ was a WWII veteran and genuine hero; his military and subsequent life story are both compelling and motivating. Russ was a person who genuinely saved the world, both during and after his time in service. Today I listened to the bugle and for the first time felt its meaning to my core. To me, it signaled a true ending: time divided between the world with him in it and the task of finding a way forward without him and the sacrifices of his generation. Today, life was suspended as Taps was played and then as always, life resumed. Emulating a life lived in this way won’t be easy. Time to get to work.
With my martial arts studies in the past, I’d been itching for a new challenge. Something to keep those synapses firing and provide some much-needed endorphins. A way to continue to grow and evolve. A challenge of my own seeking, for a change. I’d hate to be stuck in today’s entity for the rest of my life. Sounds like prison.
So this summer, at age fifty, I took up samba drumming. It is, for me, joy-creating in both mind and body.
The first six or eight classes were delightful. I had never been musical, but there I was, participating in the creation of music! And since the majority of class attendees are experienced, it’s real music being played. My body loved it, my pattern-loving brain loved it, and it’s a room filled with what I consider “my people.” Ideal.
Now I’m at—what? Class 12? 14? And I’m getting worse each time! Well, probably not really getting worse (although it's not impossible) but it’s all so much harder! I know why; I remember going through the same thing in karate. First couple belts, I felt like a bad ass. Eventually, the higher the belt, the more aware I became of what I didn’t know. The newness of, “Hey look! I can actually *do* this!” gives way to the realization that while it’s possible to do it, I’m not doing it well. I remember the frustration then, and I’m feeling it today.
I’m no longer new, I’m just new-ish, and correspondingly not very good. This makes sense and yet—it is humbling and painful. I feel shy and embarrassed and frustrated and last night I wanted to quit. I won’t, though. At the core, this is why I’m here. Pushing through this is as important as learning the skill. More important, really. I need that stretch.
The me in me could use work these days and I’ve found an excellent therapist. I like everything about her. The process, the peeling of my personal onion? This part I don’t like so much. I come to each session prepared for internal battle and bite and kick against each revelation. “Jackie, are you a perfectionist?” was a particularly confounding question. I stared blankly in response. A perfectionist? How could I be? There’s nothing about me that’s perfect. My house is a mess, my life is a mess, I’m foundering in my career. Then it hit me. I had been confusing “perfect” with “perfectionist.” In that moment of clarity, I understood that I want to be competent—no, perfect—at everything I do. Correspondingly, my greatest fear is to fail at this perfection. So—yah, it seems that I am.
I will continue my samba drumming classes not just for the pleasure of being a part of something joyful and magical, and not just because I so value the people I'm meeting while doing it. I’ll continue the classes so I can also practice not letting my unattainable drive keep me from living life.
Deep breath and here I go, embracing the process over the product. I may eventually turn out to be a quality drummer. I may not. Either way, I will succeed in being someone who pushes past her fears and insecurities and tries. That’s the person I really want to be (of course if I could be that person and and an excellent drummer, that would be ideal ; )
My father, who died a year ago, was a racist. I've dedicated much angst to sharing that, but in the end I decided that since he was unapologetic about being that way, I'd be unapologetic about writing about it.
As a child, I would describe him as an Archie Bunker-type racist. People understood the reference and the description fit. My father wouldn't go out and deliberately say or do things to people, but in the comfort of his own home? Yeowch. He was an equal-opportunity hater, and family dinners often consisted of him spouting angry words toward any and every group. He included Jews—his own group. I took some solace in that. If you hate everyone, do you really hate anyone? Was he a racist or a misanthrope? There's a kind of fairness in misanthropy.
Ours was a totalitarian household, and never would I have felt safe in contesting his views. I digested myself more than the food, building my own views and arguments while simultaneously trying to hide my canned peas beneath my knife. When I became a mother I vowed to myself that my children would never have to sit and listen to such ugliness. He must've felt it and respected it, because in twenty-six years of holiday meals with him and my children, I never had my moment to leap to my feet and shout, "Enough!"
About a year ago, he declined rapidly, going from feeling discomfort while eating his Ben's Deli eighty-first birthday dinner to dead from stomach cancer in under a month. It was sudden and shocking and I'm just now beginning to tease apart the experiences that happened around it.
His diagnosis arrived on a Thursday. They scheduled an MRI for the following Tuesday to find out more. My father looked me in the eye: "I'll be dead by then." I agreed. Despite his flaws, he was still my powerful dad, and I never doubted his certainty. In the days that followed we attempted to set up hospice and learn his wishes for a funeral. The internment of his ashes. What kind of service. Although he lacked affiliation with his faith in a traditional sense, he wanted a rabbi. In the end, we cling to ritual.
A few days later he was in the hospital. It was a hard way to die (is there an easy one?) and his final hours of pain and consciousness were hard to bear, even for the staff. His doctor was the floor doctor, not someone we knew. She was kind and spent quite a bit of time with him and they talked when he was able, the white old racist and the young black woman in charge of his care. I saw him take her hand more than once and look into her eyes. "You're a good doctor," he would tell her. Her eyes would well and mine would overflow. She couldn't know how meaningful these moments were.
He died, and my siblings and I made funeral arrangements. We found a rabbi who was retired but agreed to officiate. We hired a singer to close the ceremony with Amazing Grace, as my father had requested. The lyrics were printed on the back of the memorial leaflet. The rabbi was taken aback by the choice, possibly even angry. He introduced it saying, "He wanted this Christian hymn read. It's not something we do. I guess he heard it somewhere." Then he left, pushing through the crowd, getting in his car and driving away while we were still singing.
I didn't see the rabbi leave and when friends told me about it later I wanted to find him and scold him. I wanted to tell him that the hymn is about redemption. That it was written by a slave ship trader who had seen the wrongness of his actions and reformed himself. But in the year since his death, I see that it wouldn't have mattered. I will leave the rabbi to his own prejudices, and pray that his knots will loosen as well. For me, Amazing Grace will always be a song about my father's self-awareness and hope for redemption, redemption that came late and not fully, but came nonetheless.
What is it like, being able to (insert athletic event here) after not having been to walk stairs or lift a full glass of water? Not for a week or a month but long enough to see the cycle of seasons repeat? It is simply glorious. And scary. Because I don't want to go back.
Having been brought to my non-functional knees for well over a year, I've lived pain. Loss of mobility is worse than you'd imagine. And as I ever so slowly (coming up on three years) claw my way back, I am grateful many times each day. The kind of grateful where you stop and think of nothing else.
I am grateful every time I climb a flight or two of stairs. "Look at me," I want to tell my neighboring Trader Joe's shopper. "I can climb up these. Also, back down. Also, I can do the ramp now. The ramp doesn't even hurt (stairs often still do)." Can you imagine being faced with such emotional prattle as you pop in for hummus and cheese on your way home from work? I wonder: would you consider me someone's silly, chatty mom and pacify me with a smile? Or might you pause and contemplate, even try to relate?
...which brings me to the fear part. My tangle of pain and enforced stillness continues to gradually peel itself back, revealing still-ripe fruit. I marvel at this progress. One triumph builds upon the next, and I revel in my yoga practice, ability to dance, and only recently, to swim. With some regularity, tears threaten to make my private thoughts public. Those tears are plentiful, and not always joyful. Like me, they are intense and layered.
I cry because I cannot believe that I have been given this chance, and I want to savor it and (hike, dance, swim) forever. I cry because I cannot fathom why I have been given this chance for renewal. I cry for my peers in disability and pain who will not have that chance. I also cry from fear. Mine was not a gradual slip--my illness and loss of mobility were sudden, akin to being thrown from a speeding car. One moment I was flying along, and the next, my body was screaming and everything stopped. This is how it happened. If it can happen once, it can happen again, and this awareness simmers just below every triumph.
Today I was able to kayak. This one feels bigger, because my back problems kept me from it even before my bodily implosion. It seems my rehabbing continues, because whereas six months ago I would have been unable just to get in, today I got in and paddled. As described above, it felt simply glorious. I asked my son to take a picture, which I expected to convey my joy. Then I saw the photo and aah--there it is, the wariness. I look serious. Which, in fact, I am. Taking my life back is serious business.
Ironic, isn’t it? That individuals who have made a commitment offering their bodies and futures to serve and protect their nation often experience trauma during the fireworks ignited in celebration of the birth of that nation? While the us of thirty years ago knew that his service in the Marine Corps could take my husband’s life, we never really considered where it might take our lives.
A word picture for you: For me tonight will be spent holding space for my husband as he curls himself into a grown-man fetal ball, pillow over his head, loyal chocolate lab curled up along-side him. The lab, of course, will also be shaking.
My home state of Pennsylvania is one of several in the US that has lowered safety standards on fireworks purchases. In addition to concerns of safety for those engaging with these products, consider this: for us, it’s not possible to simply stay home. Those gunshot-like sounds will be heard at unpredictable times right outside our door. Or above our roof. There’s no way to plan—we can only react.
The purpose of sharing this is not to propose that people not use fireworks, and I certainly don’t want anyone to feel guilty while enjoying them. But perhaps you might take a moment to hold space with the individuals (and dogs) for whom those sounds have a decidedly different meaning and effect.
We could use the company.
Recently, life has turned on its head for our family. This blog gives me a place to jot down my thoughts..