Originally posted 5/3/15
Today I posted a photo of Pat and I walking at Tyler Arboretum. "1.5 miles today!" Within a couple hours, there were over 100 likes. Within a couple hours!! We are nothing if not well supported. I love hearing from friends, near and far. They have kept me alive and keep us going. But I want to tell them: this is only part of the story.
I want to talk for a minute about Facebook. Or Saving Face(book). Or Two-Face(book). Because let’s be honest. Things aren’t what they seem when we post them.
Yes! Pat, James and I walked 1.5 miles today at the arboretum. That is absolutely true. A man whose doctor has told us that four months ago, it was her expectation that he wouldn’t be doing much walking ever. Ever. Just walked 1.5 miles. Astounding. Photo-worthy, most certainly.
Know what else is astounding? Here’s what’s not in the photo: That walk? It took 115 minutes. Just shy of two hours. Take a moment and do the math. That’s about a 76 minute mile. Know how I know? I HAD TIME TO DO THE MATH. Try walking 1.5 seventy-six minute miles with a 7 year old. Give that one a moment to swirl around. What do you do with a 7 year old who is moving for 2 hours at a 76 minute mile/pace? I tell you what you do. In our case, with every single step you are grateful that you have the children you do—because ours are outstanding. This little boy? He’s exactly who we needed. But that’s another story : )
So we walk (painfully, laboriously, precariously) and I worry. And we talk. Endlessly. About dragons. And baseball. And bugs. And anything else Jamie wants to talk about. Because he is so patient and deserves it. And I worry. I worry about what to do if Pat falls, if he doesn’t feel well, if we can’t finish.
We walk slowly. I mean slooooowlyy. I know it. Pat knows it. Being sarcastic people, we are snarky about it. Why pretend? Everything we do, we do at a whole new pace. After four months, I am still nowhere close to syncing our new pace with our schedule. I’m still “popping in” places for minutes at a time when I plan my day. Popping? We don’t pop. I have yet to adapt. But Pat has always told me that I think time works differently for me. To him, this is nothing new.
We’ve discussed our new pace. To be honest, we don’t care for it. I’ve tried to come up with some kind of artful transformation: we have time to smell the flowers, or to really appreciate the landscape, the brilliant blue sky…but honestly, I hate going slow. I’m going to just come right out and say it. I mean, I’m a New Yorker! I don’t do slow. Or I didn’t do slow. And for the record, Pat hates going slow too. I’m pretty sure he hates it a whole lot more than I do. And with good reason.
The paragraph above is the point of writing this... I have a confession to make. I am not making lemonade out of every lemon. Some aspects just suck. Is that bad? Can I tell you that? Is it ok?
This time of year makes me happy. It’s all promise—new beginnings. This year is no exception. Once it’s warm enough to be outside (by my hothouse plant standards), that’s where I want to be. This weekend I woke up and could feel the warm sun and thought, “A hike! We can hike!” then I remembered—we can’t hike yet. Right now a hike is a walk on a hill without a path. And it’s kind of stressful, at that.
Right now, life feels like a chain of realizations. It kind of amazes me that I can be taken by surprise so frequently. We can hike! Not right now. There’s a street fair in town! Let’s go! Wait—slowly. And again, kind of nerve-wracking. Last summer we took an adventure vacation. We hiked a mountain in Idaho. Went white water rafting. Jamie was old enough for us to get back to being more grown-up active. And now…we need to adjust. This isn’t complaining. It’s our reality. And life is a series of realizations. To pretend that it isn’t disappointing and hard sometimes—for all of us, Pat most of all—just seems ridiculous.
So there you are. Not inspirational. But where we are to date. We are so grateful for the support we receive. We are adjusting to our new lives while keeping our eyes on the prize by not accepting them. Constantly pushing forward. I believe strongly that it is possible to have more than one feeling at a time. We can be grateful for all that we are regaining while being frustrated and disappointed by what we've lost. Maybe you are sometimes too? Feel free to chime in. Today I am grateful to be alive and for our health AND also wouldn’t it be great if….
Originally posted 3/19/15
Plugging all the holes is impossible, and that’s good news. I think.
I am a natural worrier. Should a young child of mine cough, my mind can have them in an oxygen tent in under 10 seconds. The pace of my imagination is staggering—first this happens, then this, then this. I would call it a gift, if self-torture could be a gift.
This is why I am acutely aware of this habit in others. I watch their minds whirl when they hear about Pat’s stroke. “A stroke? At 49?” So young! How did it happen? Did he have high blood pressure? Did he take Lipitor? Did he exercise? Was it genetic?” And I can actually HEAR them take off…”I work out, I just had a check-up, my life insurance is up to date…"
I’ve observed the same around the recent suicide of my friends’ son. “Was he depressed? Being bullied? Were there signs?” Followed by internal cataloguing, “She’s been on Zoloft for a year, sees the therapist every week, we changed her school…” The questions are both for and about the asker. We need information—for ourselves. So we can breathe. The holes are plugged. We are ok.
This process exists because we are acutely aware of our fragility. Every time we hear of someone else’s loss we search, fumbling to find the cause. Less for blame and more to shore up our own defenses: if we figure out what they did “wrong”, we can make sure that we do it “right”. What seems (and sometimes sounds) like a blame game is, in fact, a fear game. We are vulnerable, and we know it.
Sometimes things just happen. Drunk drivers exist, no matter which car seats we choose. Genetics exist. And things even more random and less sensical. We make the best choices we can, and yet there is tragedy. Not because of what we did or didn’t do. It just—is.
Our gas grill broke years ago and required a match to light it. I wouldn’t do it—what if I blew up the house? This went on throughout the summer of 2001. On September 12th, the grill didn’t seem scary at all. It was one little match. Terrified, feeling the earth disappear beneath my feet—beneath all of our feet—I became brave in that one tiny way. Perspective can be a funny thing.
Since experience is the best teacher and I now have heaps of it, I feel qualified to announce that I’ve broken the code: I cannot protect us from everything. A wise woman would stand down, stop trying to anticipate. But I am not yet wise.
These things I know (and yes, I am aware that they are incongruous): My fears limit me. My fear makes me strong. My searching and worrying are not helpful. Yet being human—and more precisely, being me--my mind will keep whirling and I will keep searching and plugging the holes with fingers and toes in cartoon fashion. A regular Sisyphus of Stress. But I do like the ideal of standing down—a worthy goal. Change is a process, after all.
Originally posted 3/15/15
After 10 years, my accountant chose this year to disappear. Her replacement had quite an initiation, hearing about Pat’s brain bleed six months ago, his subsequent challenges, and our modified finances. “And yet, here you are, laughing, smiling—I don’t know how you do it,” he said.
I have heard this before, from strangers as well as people I see on a regular basis, who experience the nitty gritty of our lives.
Here’s my secret:
I am not my life circumstances. I am a person. We are people. We are people who have challenges in our lives. Sometimes just unpleasant. Sometimes awful. Sometimes devastating. Sometimes humiliating. Often life-altering.
…and yet we are alive. The snow is melting. Spring will come, despite our circumstances, perhaps without us even being able to look up and take note.
In recent months, we’ve almost lost my husband—twice. His health has changed. Our finances have changed. Quite honestly, everything has changed. My brother lost the love of his life. Friends lost a beloved parent. Others struggle daily with their health or consuming concerns about their children. Last week friends lost their 13 year old son to suicide. So much pain. We are bereft.
…and yet we remain ourselves. Things happen in our lives. Sometimes tragic. But that doesn’t make us tragic people. We modify and accommodate and our core remains intact. To know pain, isolation and despair is to also have a heightened appreciation of their absence. Tragedy teaches us the blessing of a blue sky, a chance to look up, the touch of a friend. We learn to measure our days in moments. A sit in the warm sun. A morning in which absolutely nothing happened.
I smile and laugh because I can. Because I am acutely aware of despair. I have lived it, and every moment that offers an alternative, I will seize upon.
While I have no voice in what is set before me, my humanity lies in my response. I am not my life circumstances. They do not define me. My choices define who I am. I will never be surprised by people choosing joy in life. What surprises me is when people are somehow surprised when they do.
Originally posted 1/12/15
Caffeine. Sugar. Chocolate. Sugar. Chocolate…Chocolate.
Chocolate. Caffeine? Caffeine. Sugar…. Chocolate! Wine.
Sugar. Sugar? Sugar. Sugar. Caffeine with sugar! Chocolate. Wine?
Caffeine! Caffeine. Sugar. Chocolate. Caffeine. Wine/Sugar.
Caffeine. Wine? Sugar. Wine? Chocolate. Wine? Chocolate. Wine.
Wine? Caffeine. Wine? Caffeine. Wine? Caffeine. Chocolate. Chocolate. Chocolate.
Chocolate. Chocolate. Chocolate. Chocolate. Chocolate. Chocolate. Wine/Chocolate.
Originally published on 1/1/15
Ten years ago, I was attending a martial arts seminar and is the tradition, we were asked to “take a knee” while the instructor demonstrated. The room was crowded, and I was frustrated by the sea of taller people blocking my view. I craned my neck, shifted left and right. No luck. My own teacher and mentor was nearby. I leaned in and issued a hushed, “I can’t see…” His clear reply? “Then move.” Time stood still for me. Move? I considered. Seems like a small thing, but it wasn’t. I didn’t want to be rude, and the room was full of people. I felt awkward; I didn’t want to call attention to myself. He looked at me, waiting. I stood up, walked to a better location, took a knee and enjoyed my improved perspective.
The most important personal safety message I’ll ever receive.
The more I considered, the further it unfolded. Uncomfortable? Move. Don’t have what you need? Move. The population at large will not organize themselves to ensure that we have the perfect view. Sometimes we need to stand all on our own. Take chances. Real life risks. MOVE.
As a woman, this is not how I was raised. My mother and grandmother modeled self-sacrifice. Theirs were stationary lives. In no way sedentary, but stationary all the same.
How often do we stay where we are, choosing forced contentment above risk, no matter how small? Because we aren’t certain that the view will be better. Or someone might not like the place we’ve moved to. Because it would be wrong to inconvenience someone, make them uncomfortable. Better to sacrifice ourselves.
Certainly, some moves are easier than others. Some line themselves up in a handy, linear manner. All it takes is the willingness to stand up. That seminal day, moving didn’t require me to leave the seminar. All it required was a new perspective--a change within myself. But even when the stakes are higher, the core is the same. Assess the situation. Figure out what you need. Create it. Move.
Originally published 12/11/14
It finally happened today. I met the woman whose experiences in the past couple months have been close enough to mine to feel that someone actually could know what it feels like to be me right now. And it felt painfully glorious.
We met in the elevator. She spoke sharply to someone on the phone, so I turned. I looked at her pained, teary face and asked if she’d like to sit together for a few minutes. “I can’t,” she replied. "I cannot take a moment off. I need to answer questions and make decisions and be available. I cannot sit. I haven’t eaten today. I haven’t showered for three days.” I understood.
Her husband is going home on hospice tomorrow. The cancer from his brain has spread. A very different situation. But until they received that information yesterday, her experience had been a lot like mine. My turn came, and she listened and teared up, nodding. She knows. She’s right there, right now. “There are no good stories here,” she said. We scanned the room. “Believe in a way back,” is their slogan. Our eyes hit it at the same time. “They should change that," I said. "There’s no going back. Only forward.” “It’s bullshit," she replied. "I hate those signs.”
I thought I was the only one.
In twenty minutes of kinship we found so many shared experiences. We both felt ourselves inadequate but were impressed by the other. I am confident that we are both doing the best with what we have. We do disagree on one thing. I think that there are many good stories to be found at Magee. For me, good is not synonymous with easy. Or desirable. A good story makes me think and grow. And there exists the potential for both when walking amongst people whose lives have turned on a dime.
We sat. She ate some soup. And we connected. So intensely, and so briefly. Because we both need to keep running.
Originally posted 12/9/14
Today we returned to 900 Walnut St. for a CT scan, almost 3 months into our new lives and 7 weeks from when Pat was a patient in the NICU. We approached the security desk, and there he was—William. In his Jefferson Hospital green blazer, he shouted out my name, ran over, and hugged me. He then rushed over to Pat, shook his hand, and told him, “We’ve said a lot of prayers for you.” It was the first time they met, but we have a deep history. Combined, I spent more than 35 days walking past that desk. William knows my older children, has seen us cry, comforted us, and vowed to pray for our family. Today he told me, “It’s hard, because you feel so limited in being able to help in this position.” This letter is to William:
Your ability to help is boundless. You and your coworkers have served as an anchor for me in a way that no one else could. While friends and family couldn’t be with me every day, you could. Every day, you looked directly at me and checked in. You noticed the days when I had strength and the days when I was struggling. You were my yardstick. When Pat was moved to the hospital around the corner, I continued to park at the Neuro Hospital, because you and your coworkers felt like home base to me. I preferred to walk the several blocks in the rain for weeks over being anonymous. You are anything but limited.
Now we are at the rehab hospital, and there are new yardsticks, new touchstones. The doctor and nurses, therapists and aides, of course. They keep Pat well and improving. They are a great support to our family. But they aren’t the only ones: The ladies at the front desk, much like you, see me cry with regularity. Because you can only keep a stiff upper lip for so long. It tends to fall by the end of the day, and their genuine caring and kindness get me though. One of them told me this morning, “You’re doing ok, because you’re still on both feet. You’re still standing.” So I continued to stand.
The manager and staff at the cafeteria, who have understood more than once when I’ve forgotten my purse at home because I’m focused on remembering to pack Pat’s clean laundry or Jamie’s lunch. The concierge, who set up and decorated a conference room for us to have a private Thanksgiving meal. Who sees me, tilts his head, then crosses the room to give me a fist bump or a high five to remind me that he is with me.
Each day, it’s the combined efforts of the entire staff that keep me going. It’s people who don’t know me but somehow hold me up who get me through each day. People like you, William.
I have never been good with names, but now there are dozens locked into my mind. Being a recent student of brain injury I will say this: I feel confident that should there ever be a time when my memory is less sharp, when it’s a challenge to remember what I ate for breakfast, I will remember you. Perhaps not your name, but I will always remember this feeling of love and caring from intimate strangers. Your impact is profound, and it is ongoing.
Originally posted 12/4/14
Almost three months into things, and the adrenaline has worn off. I am tired and scared and faced with changes to our income and every aspect of our lives, in addition to Pat’s challenges, changes and wellness. On any given day I am asked to consult and make major decisions that will impact my family forever without having any training or expertise or guidance. I am somehow expected to know. And I am scared. And overwhelmed. And exhausted. The support of friends and family and peer mentors can only take me so far. At the end of the day, all of these decisions—and their outcomes—somehow rest on my shoulders.
Today, I wanted to run.
I was about 7 blocks from the rehab hospital, and it was time to head back. I started walking—slowly. It was a hard walk. The real me was clinging to doorways and cars, and I kept having to pry her fingers off and drag her along. We made it a block.
I wanted to run.
So I ran.
But instead of running away, I ran toward toward the hospital. With my purse, and red boots, and plaid leggings. Around construction, across Broad Street, through protesters. I ran like my life depended on it. Which I guess it did. It does. It will.