As we wrapped up our time in the west, I headed out for a sunset hike. The weather has turned cloudy and windy, and I knew the lighting would be spectacular. The sky and rocks competed for my attention, changing moment by moment as the sun and clouds rearranged themselves. The sound of the coyotes howling in the distance was both beautiful and a bit worrisome to this suburbanite, and my pace quickened, scrambling quickly up and down the rocks.
As with most of the hikes I’ve taken on this trip, I spent a far amount of the time crying. Every time I become aware of my facility with my body, my gratitude wells up and spills out. I am genuinely disbelieving of my own ability, after two years of life-changing limited mobility. My heart literally sings.
The gratitude swells and I am tempted to think backward and wallow, to remember more painful times. Every time, my father’s voice interferes.
“You don’t worry about where you’ve been. You focus on where you’re going!” Stern. And loving.
,…and then I really start to cry. Because my dad said this to me countless times in the past two years. I’d voice my fear and pain and cry and every time he said the same thing. And every time I snapped out of my wallow. Because this recovery has taken determination and a focus that I don’t believe I’ve ever had to draw upon before. It is hard stuff, and my dad served as a cornerstone in this undertaking of healing with both his words and actions. For the first time in my life, I felt him as the fiercely protective father that I always felt was inside him but had not experienced. Often what I had felt was his absence. Now I felt his warmth.
The improvement, as well as this trip, I largely credit him with. Only it’s too late to tell him. Five months too late.
And so I cry. I cry because alongside my siblings, he is the person I most want to call and tell about this triumph that feels so over-whelming that I can’t even put it to words. I have taken about 100 photos of trails and rocks that I’ve been on, and I look through them, disbelieving. I cannot quite believe that I am this lucky, that I am being given this chance. And I want so badly to call and tell him about the sunset, about the colors, about the rocks, about my strong legs—and it all sticks inside of me instead. This is a different crying—big gulps and bouncing tears. And then I’ll notice that the slant of sun has changed and I’ll cycle back to the silent tears of gratitude
All so tightly woven together, I couldn’t begin to tease them apart. Not that I’d want to. That’s what these days are for me, this is my season. Days of joyful, mournful gratitude.
During our stay in California, we made a brief stop 27 years into our past. We had lived in four places during our four and a half years stationed at Camp Pendleton, but there was only one place we considered home. Our lives changed in major ways in that little four room house. It’s the house we brought our first child home to. The house where Pat left for war. The house I decorated for his return. When I think about it, I probably did as much growing up in two years on Ditmar Street as I did at my childhood home. It’s where I learned joy. And cold fear. Most important, it’s where I learned gratitude and the art of support.
As we exited the highway and neared our former home, I felt my eyes filling. So much life had passed in the twenty six years since our days with Steve and Linda, our former neighbors, and in my imagination I was going to race to their door and tell them all of it and they would somehow ease my burden, as they did 27 years ago. I would tell them and I would cry—really let things out. Just imagining that release, my eyes welled up again.
I don’t know why we thought they would be there. I hadn’t communicated with them for several years and while I never knew their ages, simple math places them into their seventies. That said, there I was, driving confidently to their house. As we pulled up our former home looked completely different. Their house looked the same, though, and I knew they were there. I quickened my pace, hurrying Pat and Jamie out of the car.
Please indulge me as I dial back time in order to introduce you Steve and Linda. They had two daughters who were teenagers during our time with them. Steve worked as a mechanic, Linda worked at the local chain drugstore. They kept their lawn nice and flew the flag every day. They loved ranch dressing—I remember they used it on pretty much everything. We were friends as soon as we moved in, but that all quickly kicked into high gear. Five months into my pregnancy we learned that Pat would be deploying for what would come to be Operation Desert Storm. He was to remain packed and would leave any day. The next day, Steve started mowing our lawn. Even bigger, he exercised our hyper one year old chocolate lab every day. With daily lab-centered visits, they began to feel like family.
Pat deployed four months later and a few days after that Ryan was born, barely alive. Steve was the person who rushed my panicked mother to the military hospital, bullying his way in by proclaiming himself the grandfather and demanding to see me. Once Ryan healed and was able to come home, I pretty much became their third daughter. They would bring over a paper plate with a serving of whatever they were having for dinner that night, complete with ranch dressing. Steve continued mowing and dog care. Linda was a pillar of strength; she is one of those people who intrinsically knows what you need. They were both excellent listeners. Today, when I think about the trauma that I experienced during that pregnancy, botched cesarean and medi-vac’d newborn, I realize that I had PTSD and was hyper vigilant in the months that followed. I had experienced trauma and was parenting alone and yet I came through it all fairly smoothly. I know with great certainty that this was the result of Steve and Linda and the care that they gave and showed me on a daily basis. They got me through, just by being themselves.
It may make more sense, now, when I say that just seeing their house, I felt loved and home and vulnerable in a way that I don’t often indulge in. We walked—slowly, of course, since Pat moves slowly—up their walkway. The door opened and Linda said, “See, I told you that was Jackie.” No real sound of surprise or excitement—just that confident, strong voice. I hugged her and also her daughter—now forty years old but to me still looking like the teenage girl I remember. My eyes brimmed as I saw Linda watching Pat walk toward her. Then I looked over her shoulder into the house.
There was Steve, sitting at that familiar table, looking the same, but not the same. He was trying to stand up, but not succeeding. My eyes shifted back to Linda. “He’s having a very hard time. The cancer has really got him this time.” She looked again at Pat. “He had a stroke a few years ago,” I explained. And that was all. My tears vanished. This was no time to indulge in self-pity. We are now peers. I had my turn with receiving their intense support, and I hope I have succeeded in being there for others in their times of challenge. Now they are struggling, and I am far away—decades and miles between us. Yet sitting in their house for those few minutes felt like a homecoming. We are intimate strangers, having been through so much together but living so much life apart since then.
We visited for a short while. Steve indicated to his daughter to fetch the candy bowl and he offered some to Jamie. I saw him sparkle and heard his laugh and was grateful for both. Then I loaded my family into the car and pressed forward in our journey, leaving them to theirs. We are all adults now.
It seems that we’ve done it again. We’ve ruined our chances with yet another child. Our last hope, too.
We’ve created yet another adventure-seeker, lost to mountains —different mountains this time, but the mountains have won yet again. You’d think we’d have broken the code. This afternoon I remembered my vow to never take this last one further than the Jersey shore in order to make certain that his definition of adventure would be the rollercoaster on the boardwalk. It isn’t meant to be, though. It’s my own fault. I saw it happen today.
Joshua Tree National Park is the home of fantastic boulder formations of varied size, color and stone, begging to be climbed. Ten years old, this boy-child is not new to climbing, but this was different. Yesterday we were both tentative and he circled back regularly, not venturing too far. Confident in his abilities, today I set him loose. I encouraged him to strike out further…and then he did.
He zoomed far and wide, running seemingly straight up walls, leaping over crevices, slipping and sliding. Occasionally he lost his footing. Once he traveled so far so quickly, he found himself outside of both eye and ear-shot. He used his reasoning and found his way back. My heart felt the moment he was lost, but my head knew that he is bright and capable and would be back in just a few minutes—which he was. Then he raced off again, faster, higher, and further than even moments before. That was when I knew.
We have another adventurer. Squinting into the sun in an attempt to track him, years of parallel sensations of the tenuous thread of control that is parenting shuffled through my mind. Hiking a gorge in Greece was the moment when I felt our older children shift. All three of them eventually took on adventures far from home and not without risk. I miss them. I worry about them. This distance, this letting go--it is the worst of parenting. It is the best of parenting. And now it begins…again.
Jamie was trying out his new camera as we were waiting for a friend. I was reveling in the sunshine and not really paying attention when he told me to tip my head up—and back—and over—and then cackled with glee. The result you see here—somehow there was a beam of light that he managed to place in just the right spot.
“That’s how you look anyway, when you’re mad. You shoot out those Mommy Eyes. You could make anyone stop with those—even any grown up!
I love this boy.
Choosing the items that will last for months yet fit into one suitcase and one backpack has become an exercise in self-awareness. Things I’ve learned about myself: I do not need most of the things that I have. It feels good to leave my normal trappings behind and live more minimally. But here’s another trait that’s made itself known—I don’t want to live too minimally. I use clothing to reflect my mood and experiences. The thought of rotating through a few sets and laundering often held great appeal in theory. In practice, packing felt—sad, dreary. I surrendered a few items (see you in the spring, yoga block) and found what I think will be a happy medium. We shall see.
"Fret not, my son. None of us is perfect.
It is better to have crooked legs than a crooked spirit.
We can only do the best we can with what we have.
That, after all, is the measure of success: what we do with what we have.”
This quote is taken from The Door in the Wall, a Newberry Medal winner published in 1949. I can tell you nothing about this book other than this quote. For reasons I cannot explain, I hand wrote these words in my best sixteen year old calligraphy and affixed them to my wall. There they remained throughout my high school and college years. Why?
Perhaps a childhood of living with my elderly grandparents. Perhaps because I had a close friend whose mother was a visually impaired dynamo and inspirational human. Perhaps because her daughter, my friend, was already grappling with her own early vision loss. Perhaps because due to recent volunteer work with people with disabilities. The why makes no matter, really.
The words have been lodged in my head since then and from time to time, they bubble up. This morning when I woke for this inaugural day of our Resiliency 2018 trip, they were repeating in an endless loop. Sitting in forced stillness on the plane, my conscious mind has caught up with my subconscious and it is clear to me—these lines are the whole point of this trip.
Doing the best we can with what we have. Expanding our limits while respecting our limitations. I doubt that we will accomplish much that is grand over the upcoming months, but that will is not the measure of success. We will be kind. We will smile at strangers. We will help when we can. That will be our measure of success.
…what we do with what we have.
Originally written 11/1/14
Have you ever experienced a moment that so ironic, you can taste it? Feel it in every fibre of your being? A conversation that leaves you silent, trying to find a place to house it within yourself once it’s complete? These days, I have conversations that feel this way pretty much every day. Today’s conversation involved explaining to my mother-in-law, who herself experienced a stroke 4 years ago and has been confused ever since, the challenges facing her post-brain-bleed son.
Explaining to her that he experiences gaps, but doesn’t feel that they are there. That he is sometimes confused in his thinking, as she has been for years. A confusion which he had little patience for in the past. All without saying to her, “Your son is like you now. He gets things wrong and is confused but denies the problem when confronted with it.”
At the same time, acting respectful during his challenging moments, without the obvious, “You are now like the mother whose confusion earned your disdain,” escaping my lips.
My words dance as I explain, I describe, and I swallow the obvious like the awful, cherry-flavored medicine of my childhood. I choke it down and it goes—somewhere. I choke it down, I. Choke. It. Down. Like the ocean, I suspect that at some point I’ll discover a continent-sized flotilla of crap somewhere inside of me. But for now, I have the conversation that feels unbearable. And then the next one. And the next. Because they are both lost in time. And they both deny it.
Originally written 10/16/14
Our daughters turn 22 today. 22 years ago at this very moment, we were in a different hospital. On the other side of the country. For a very different reason. 22 years ago life was all potential. Who our family was about to become. Who our children would turn out to be. Who we would be as parents. What our lives would become. 22 years ago we never could have guessed what was ahead of us. So many things. Some wonderful, many hard. But never this.
And today, we sit in a hospital. This time I’m in the chair rather than the bed. Sitting and wondering. What will become of us? Who will we be? Who will our children be? The same. But so different.
Originally written 9/15. Disquietingly prophetic. My Lyme hit in November.
On this, the eve of the first anniversary of Pat’s stroke, I can feel it creeping along the edges—soon, I may lose my shit. I don’t mean tearing apart someone from billing over the phone (been there) or screaming at a family member for some minor mistake (done that). I mean Losing. My. Shit. Big stuff. Biblical. I feel it coming.
What I don’t know is what it’s going to look like. Will I grab my little guy, hop on a plane to Mexico, and stay there for a year or so? Will I be the perpetrator of road rage? (although I don’t have a gun, so I guess it would be road yelling). Will I just start crying and be unable to stop? Quit? Take to my bed and just not get up? This is the one that most people end up with, I think. People who just can’t go on. I hate this one. Not for me, I think.
Will my body take the bullet and create a health crisis of my own? That happens a lot too. Also unappealing.
On this one year anniversary as the “you’re completely fucked” envelopes keep landing on my table—no health insurance, no life insurance, no money—will I eventually just leave them lying there, unopened? Just wait as things crumple and fall down around us? So tempting…
My new, enlightened, “When life gives you turds, make lemonade” philosophy assures me of this: I can’t plan my shit-losing. Because that would be too straight-forward and clear. That’s not how life works. You’re following the magician’s cues—“Look over here! Eye on the prize! Sparkley shimmery…” meanwhile the other hand is launching those turds your way. So I will relax (see? I’ve learned something) and allow my shit-losing to unfold in its on way and time. Because you can’t plan these things. Or, arguably, much of anything else.
Originally titled: Fuck You, I’m Not Interested in Warming Your Heart
Never published. Written 5/15.
Let’s get this straight: I practice gratitude. I am grateful that Pat is alive, grateful that he can walk when they thought he never would, grateful that he can talk and be with us and we can all laugh together. Grateful for our amazing children together. Grateful for our supportive friends and family, grateful for financial security, even if it has been altered, our safe home and neighborhood, my rewarding career, the sun, the warmth, beautiful flowers and new experiences every day. Grateful that we have options.
That said, my least favorite part of our neighborhood strolls is walking past people who we kind of know—you know, those we know enough to smile and wave, but who really have no insight into our lives. People who don’t know that no, Pat isn’t back at work. And likely will not ever be. That things are very different and that change is painful and slow. That this walk isn’t just a part of our day together, then we both get back to work. This is what he can do right now.
I have to tell you this:
Please stop giving us the thumbs-up. Fuck that shit. Please stop telling us how amazing Pat is doing. Please stop putting your hand to your heart or your mouth with the involuntary expression of inspiration that you are feeling when you see him (us) out there day after day, striving to improve. I don’t want to be your inspiration. I don’t want my husband to be be your inspiration. I don’t want our struggle to be your inspiration.
Especially during our walks. They are challenging for me—time to actually think. These days thinking =bad. Especially when our situation is right in my face. Our slow pace. The repetition. The things that are obvious to me but not to Pat. His lack of judgment in terms of avoiding rocks and potholes. His wheezing. His talking to himself. The fact that this may be the only thing he really does today.
It’s completely irrational, but I feel like your heart being warmed has come at the expense of my life. Of my options. I want my life back. And you look at it and somehow it inspires you. I guess more than anything, I wish I had that inspiration that your body shows me you are feeling.