Payback is a Blessing, or The Story of How I Inadvertently Created the Village that Saved Me

I have been called unlucky, and I guess, by the calculations of those individuals, I could be considered so. I am a person who big things happen to. Big, hard things. Of course, everyone has stuff--life happens to all of us. I’m talking about enormous catastrophes that drop out of the sky.

My first child was born extremely ill, while my husband was at war. More recently, my husband had a massive stroke. You know, big kinds of things.

Also, my business—the child of my intellect and passion—was a failure. I work in the childbirth field, as an educator, doula  and breastfeeding counselor. For years I helped, one family at a time. And I knew, I KNEW what I needed to do—what families needed. I created BirthMark, a center for growing families. There were support groups and classes, lactation counseling and more. The core families would be around for at least a year. 

I remember mothers who were at my place every single day. When I arrived in the morning, there they sat, sometimes in tears, on the steps. At the end of the day, I gently escorted these mothers out the door. I helped couples find counseling. I heard depression stories. I heard other, harder stories. I watched friendships spark, women turn into mothers, men turn into fathers. And then parents of two. Or three. 

My work was rewarding, but life was hard. The economy tanked soon after our opening, and while the community thrived, my bank account did not. I couldn’t afford to hire help. My own family suffered. I simply had too many responsibilities. I worked nights and weekends. The community grew even stronger, and soon there were multiple groups of families gathering for events, sharing childcare, supporting one another. It was working…but not for me. Not for my family. My debt grew to tens of thousands. I felt a failure in every respect—as a mother, partner, and business owner. It was a crushing weight. While I treasured the families, I became resentful. Sure, BirthMark worked for “the community”, but it thrived on the life-blood of my family—of me. I couldn’t endure it any longer. After five years, I surrendered and closed.

…and it was a relief. An enormous relief. In two years, I was able to pay back all my debt and to draw an income, while working a fraction of the hours. I could spend time with my family. I could heal.

I remained involved in various BirthMark circles; I was invited to birthday parties and play dates, and experienced a perhaps undeserved pride in these families.  The crone, nodding with contentment at the fire. Yes, I did have some success. I created the opportunity for community, they availed themselves of it, and eight years later I am witness to powerful, rock-solid friendships. I watch these easy relationships and remember their awkward beginnings. Groups of round-faced women, fresh in their motherhood, unsure of themselves in their new roles. A moment ago. A forever ago.

I watched them and realized, “They have their community. I did it.”

…and then. And then. Our lives changed when Pat collapsed at our son’s soccer game, close to two years ago now. It changed, and never went back. Months of fear, months of hospitals, months of firsts that you anticipate with a child, but not a partner. Surviving. Walking. Talking. Cliche, I know, to say that it’s all a blur—but it is. Some memories are pure and clear, though: BirthMark families bringing food—for months. Buying groceries. Raking my leaves. Nurturing my son. We adjusted, and had begun to learn our new life.

…and then. And then? Yet another chapter. This time my turn, with a debilitating case of Lyme Disease that has pretty much leveled me. Me. The person steering the ship. The person my family genuinely depends on—incapacitated. Unlucky, I hear regularly. If I didn’t have bad luck, I wouldn’t have any luck at all, they tell me.

…and yet. People have, again, cooked. Done my laundry. Watched my child. Driven me hours for treatment. Held me while I cried. Not one person. Not a couple. Dozens and dozens of people have kept my family alive for the past two years.

The other night I attended a gathering of one circle of BirthMark mamas. There’s deep history in that group, and an easiness—true familiarity. I waited for her--the crone, nodding with pride. Then I realized, looking at their now angular, more mature faces, that today I don’t see them as parents—I see my tribe. My saviors. All that time I was working for no pay? Losing money? Feeling resentful? I was building my future. That community I worked so hard to create for others? It snuck up and saved me. 

I pointed all this out to a childhood friend. "See? I am lucky." She informed me that it wasn't luck--I forged my support through hard work. Luck is inherently fickle, I believe. Fuck the luck. 

Rearview Mirror: A conversation with my school-aged self after attending my 30 year reunion

Dear Insecure, Painfully Pre-Me Me:

I have just returned from my high school reunion. Our high school reunion. 30 years later, there was finally enough distance to take a hard look and who we were and who we’ve become. As well as those around us.

This much I know: If I was introspective back when I was you, I’m a super-pumped up version of that person now. I live in my head. Some days it’s a cozy bungalow, others a house of horrors. This post-reunion week it’s a house of mirrors. And we both know that mirrors can be scary.

3 days before the reunion, I saw on FB that one of the girls who teased us mercilessly when I was you would be attending the event, and I went totally fetal. I mean I. Lost. My. Shit. Suddenly I was you—an insecure 11 year old being bullied. The world was close and painful. I felt vulnerable in a way that I haven’t for decades. The feeling was so jarring that today, a week later, I’m writing about us as if we were two different people. And I am filled with gratitude that I do not ever have to be that 10 or 11 or 13 year old girl again. To all the young men and women out there who feel left out by their peers and are being bullied: my heart goes out to you. I have lived through some very hard things in my life. The childhood bullying still rates extremely high on the list. What you are doing is harder than the adults around you have the capacity to remember. 

Fortunately--and I mean this--I am no longer you. I value myself, and the mirrors I hold up are mostly my own. I have faced some scary shit--might as well add my own demons to the list. I grabbed some strappy, high heeled shoes and went. Because--fuck you. I'm done with that. Good news: that girl is gone.

In the days that have followed, that same childhood bully has liked FB photos of me as a teen, and I have to wonder—what does she remember when she sees those pics? Does she think, “I remember that girl!” or “I remember when we all used to joke around,” or most likely, is there a big blank bubble over her head when she sees my face and name? Does she remember absolutely nothing? Because that is not my experience when I see her name. I see red. A glorious, hateful rage--your rage--still bubbles up. Even though today-me, parent-me, recognizes that she probably hated herself. And likely had pain in her own life. But still.

More recently, I have a FB friend request from this same person. And again, I wonder. But I’ve been working through this for a week now and I’m getting better. I don’t feel frightened any more. Just disappointed that there isn’t a “Fuck off” button, because that’s what I’d send her back today, 30 years later. And now "we" can just be me.

Veteran's Day Musings

I sent my eldest son to Wawa for a free coffee, which they're offering to all veterans and their families today. He paid for his, though, because no one asked him and he understandably felt foolish announcing, “My dad is a vet.” So he bought his own coffee. Makes sense.

Every year I attend our local Veteran’s Day Parade—and cry. When I was a young Marine Corps officer’s wife, I also cried at patriotic displays. I was moved by the tradition, the dedication, the bravery. I still feel all those things, but today’s tears are shed from eyes that have more of a sense of what sacrifice looks and feels like. I watch the veterans walk and ride down the street and weep to think of what they were exposed to. Knowing that while some feel proud on this day, others are remembering their past in a different way—feeling shame and regret and other things that I can’t imagine. Most, I’d imagine, feel some of each—which to me, seems the hardest—pride and regret, mixed with gratitude, mixed with survivor’s guilt—hard emotions to reconcile within oneself.

I  watch the cadets march by and think of the young people I know who are now headed into their military service. These older and wiser eyes see their intently focused young faces and I have to pull myself away from the parade, because I want to tell them NO! If you see combat it will change you and everyone around you in ways that are impossible to predict yet guaranteed. It is guaranteed. Really. 

Of course that is unrealistic because while my idealism seeks a world living in peace, that ’s not the world that I live in. We still need strong, dedicated young people to be ready to protect and defend. But they will sacrifice. Some with their lives, their limbs, their emotional well-being. Others with their relationships— with their partners, children, and selves. 

For those who haven’t lived first-hand through sending a family member into combat, it is impossible to imagine. Of course, every experience is unique. Mine began when I was five months pregnant with the young man who today paid for his own coffee. Pat was told to pack his sea bag, it remained on base, and every day for the rest of my pregnancy I didn’t know if he was coming home. This was late 1990—leading to the Gulf War. Eventually, at the end of my pregnancy, they deployed. I was 40+ weeks pregnant and kissed my husband goodbye. I didn’t know if I would ever see him again, when or how I would hear from him. This was prior to cell phones, emailing and Skype. He was just gone. That experience changes a person.

Several days later, my son was born—barely alive. He was moved to another hospital; they told me he had a chance of getting better. A Red Cross telegram was sent to my husband on board ship in the Persian Gulf. I have it to this day. I think about how it must have felt, to learn of the birth and illness of one’s child through a barely legible piece of paper.

The waiting began. Family members stayed with Ryan at the NICU while I remained at the original hospital, having my own recovery challenges. The doctors would come in and tell me, “You aren’t doing well. Neither is your baby. Your husband needs to come home.” We waited and waited. It took more than a day for him to get the message. Days for them to release him. More days for him to get home to us. 

Ryan and I recovered, and Pat had a bit of time with us before returning for the mid-January commencement of Operation Desert Storm. He came home when Ryan was six months old. I was so grateful to have him home intact, seemingly fine. It took decades to figure out how much he was impacted by the experience. Others showed signs of their trauma much faster—a friend tells me that her husband was different in very unsettling ways immediately. None of them came back the same. And of course, neither were those of us who waited.

There’s more to the story. And compared with other people, so much less. But this little pebble—in which everyone remained intact and alive—still had huge ripples that impact our family to this day. It’s what I think of when I see those young faces. It’s a knowledge that can only be acquired through experience. An experience I wish on no one. 

It’s why  I am headed to Wawa and getting myself a free coffee. And why my son should have one too.

Three prized possessions—fully functional while holding a lot of baggage

Please consider:

*An ugly grey fleece

* One of those tall glass water bottles with the rubbery blue covering over it

*A large cooler on wheels with water trapped in the lid

It amazes me, how a bland, over-used inanimate object can trigger powerful emotions. When our lives exploded last September, any semblance of normalcy was suspended for the four months that Pat spent in ICU’s, hospital rooms, and the inpatient rehab. It’s difficult to describe this kind of existence. Every moment is the same, yet in no way mundane—every moment is moment-ous. Life and death. Future determining. Big stuff, while all the little stuff never stops—people need to eat, trash goes out, pets need food, schools expect homework turned in. Everything has changed. Nothing changes.

10 months later, things have evolved. They certainly aren’t “back to normal”, and I still can’t picture what the new normal might eventually look like, but life goes on and my eyes can focus now and then. As I went about my life today, some items made themselves known to me.

*The ugly gray fleece

When I packed to head to karate the morning of the stroke, I had no idea that I would be away for days, in a cold hospital, in shock. I sat in that ICU room at Jefferson and shook and shook. Finally I took a walk with friends. We walked to the closest store—Macy’s—and bought a fleece. I remember that on the way there I stepped into traffic against the light and my friend grabbed me and pulled me back onto the sidewalk. I was dangerously out of it, yet I remember every bit of that excursion. Where I found the fleece. Other fleece candidates. Deciding it was the one. I hate this fleece. It is ugly and was ridiculously overpriced. And yet I love it. It helped me to stop shaking, that day and in the months of cold hospital rooms that followed. If you happen upon me, that fleece is nearby, just in case. It may be hiding in the car, but trust me--it's there. I hate to be cold.

*The glass water bottle

My girlfriend came to visit me at the hospital, the second or third time Pat was in the ICU. She said, "I didn’t know what to bring you but I got this.” It’s the kind of water bottle that’s way too posh for me; more often than not I’m being teased for drinking from my little guy’s old Angry Birds bottle. This bottle is pretty. It’s also big and heavy and cumbersome. I love my friend and I liked the idea of having her with me so I gave it a go. I figured out that I could put hot water into the glass without breaking it  and that the rubbery stuff created the perfect insulated sleeve. When Pat was at the rehab for 10 weeks, that bottle went with me every day. Every couple hours I would go down to the cafeteria and top off my hot water supply from the machine that is set to “surface of the sun” temperature. I got to stretch my legs. And talk to the cafeteria staff. And clear my head a bit.

When I use that bottle today, I think of my girlfriend and how she kept me warm and hydrated for months. I also remember the cafeteria manager who always put a hand on my shoulder and looked into my eyes. I think of the lady at the register who more often than not wouldn’t take my money when I got myself a little snack. And I remember the young man with the hairnet over his beard who found me whipped cream when I forgot to bring it for the Thanksgiving dinner that we held in a conference room on the 4th floor.

*The cooler

The rightful owner of the cooler asked me about it this week.  It’s July, after all. Pat has been home for 7 months. “Hey, can I get that cooler back?” Appropriate. I’ve been embarrassed about hoarding it, to be honest. “Of course!” I said. Of course. It’s been here since just a couple days after Pat’s stroke, when she organized an online sign-up so that people could bring us meals and snacks. She left it on my porch and asked that people bring ice to keep the food cool so it would be ready whenever we straggled home. It was September, and the weather was hot. People brought food for three months, until I I couldn’t let myself continue imposing. It was now December. The cooler no longer required ice. 

I hung up with her, went into the garage and looked at the cooler and cried. It represents so many meals, so many people who went out of their way to bring us sustenance, to show us that that they care. I have no use for the cooler, but I just can’t give it up. It feels like my friends. It feels like a talisman.

 I think I need to get her a new one.

Crying Out Loud

Lately, I've been thinking about crying. Not considering having a cry, mind you--I'm already all in on that one--more of its importance. Crying ties in with culture, emotional state, and feelings of safety.  When my husband and I married, my parents worried about our different faiths. What I learned reasonably quickly was that faith was a small part of our differences. He was a Christian boy from Iowa. I was a Jewish girl from Long Island. Yes, our families and ancestors worshipped differently, but that paled in comparison to how we approached feelings.

Pat’s people are stoic. I mean s.t.o.i.c. Several years ago we had a voicemail from his mother. Let me set the stage: she was 70 years old, recently widowed for the second time, lived alone and had suffered a minor stroke. The message went like this:

“Hi, this is Liz/Mom…I just wanted to let you know that Percival (the tiny farming town of 100 people where she was  born and raised) is about to become a part of the Missouri River. They’re going to flood it. It will be gone forever. We have about three days to evacuate. Ok, that’s about it here. I hope all is well with you…”

These are his people.

I come from a family of criers. When my step mother died, the five granddaughters cried so loudly through the service that we still maintain that they could serve as professional mourners if they were so inclined. And I was not embarrassed. To be honest, I was kind of proud.

My grandparents lived with us when I was growing up. I remember my grandfather crying while watching the 4 o’clock movie on tv (remember the 4 o’clock movie?). My sister and I cry together with some regularity. I’ve seen my dad and brother cry—not many times, but I’ve seen it. Crying and emotional displays are a part of the culture of my family. I am comfortable with displays of emotion, for the most part.

It shouldn’t come as a surprise, then, that when my husband suffered a massive brain bleed, I cried quite a bit. I cried at his side. I cried on the phone. I cried on the staff, to include techs and cafeteria workers. Actually, I need to  clarify: it has been point of pride for me that I have mostly cried *near* people, rather than on them. The grabbing and sobbing has been reserved for close friends and family members (you’re welcome). 

At some point early on in this process I realized that I was crying near people with some regularity, and started keeping count. I even had a couple friends who I would text updates to. It was likely horrifying or at least annoying for them, but it somehow amused me. “Today I cried near 7 people. I got some bulk crying done, because there were four people meeting with me during the intake at the rehab, so I was able to cry at them all at once. Great time saver."

We are now more than 8 months into our new lives and you’d think that things would have settled down, but honestly it doesn't feel that way. Pulses of frustrating and sometimes disturbing experiences, medical and financial news still manage to take us by surprise fairly regularly. As a result,  I get to continue to practice my emoting. Waaaay less frequently and dramatically, but still pretty regularly. And it's evolved. Yes, crying can evolve!

I pride myself on my adaptive skills; I hardly ever cry publicly these days, and it takes quite a wallop of bad news to get me going. I feel that I have grown into my role. Just today, I was telling my daughter about this week’s visit to the VA, where after hours of tests they once again told us that they have nothing to offer Pat.

I bragged, “This time I made it all the way out of the room before I cried!”  Then I added, “…and this time I made it out of there without any yelling or profanity!”

To which she responded, “This time????”

I did say that I was comfortable with emotional displays, didn’t I? And I did mention that I’m a New Yorker…

The Lens of Possibility

Until a couple years ago, our little guy substituted the word possibility for disability. “Mommy? Does that person have a possibility?” And the heart of the special ed teacher that I had studied to be would swell and I would reply, “Yes, baby. She does have a possibility.” Every. Single. Time.

And here we are now, with possibilities of our own. Who knows where they will take Pat? Or the little boy who changed the wording to “disability” when he turned 6? Or any of us? One thing I do know: things are different. Different for us, certainly, and also to others. People view us through a different lens now.

I realized it recently when we were at the Italian Market in Philly, where two men (students? professionals?) were armed with video equipment, shooting everyone who walked down their side of street. They leaned against a storefront until people came their way, then grabbed their equipment and shot a few seconds of footage. I watched from Anthony’s as we sipped our coffee. Now they’re resting, now they’re up. Now they’re resting, now they’re up.  After our coffee, we eventually ended up heading their way. Now they're resting…and they’re resting…and they’re resting. No cameras. We were not what they were looking for. And yet—everyone else had been. Young, old, posh, shabby. For us they continued resting.

I have noticed that we have are now invisible to many. I have lived 47 years, almost 30 of them with my husband. I never realized that we had a rhythm of communication with strangers until it changed. People don’t look in our eyes these days. They watch us pass. Maybe they feel awkward. I don’t know. To be honest, I don’t care. It doesn’t hurt my feelings. But I’ll admit that it does fascinate me. I am fascinated by being ignored.

I am equally fascinated by the people who NEED to talk to us. Because it seems that wearing a leg brace and having an obvious physical challenge is for some people an invitation to chat. “What’s wrong with you?” (or worse yet, what’s wrong with him?). Bad ankle? Keep on going! Do you need surgery?…and I am transported to my own experiences of standing out and looking different—my pregnancies. It is surprisingly similar. Apparently, having some kind of obvious difference can be an invitation to comment in ways not typically experienced in polite society. When do people walk around commenting on strangers’ bodies? When they’re pregnant, in my experience. And now, also in my experience, when they stand out as different.

I am finding Pat’s brace, his gait, our pace, to be a lens of sorts. The reactions of the people around us tell me so much about them. Their questions for him—or about him, even when he’s right there-- are to me statements about themselves. Through our pace and gait, I have gained a secret portal. People reveal themselves through their actions and reactions. It may not be typical (or sane), but I have developed a new hobby. I people watch, through the lens of our new lives. Of Pat’s disability. Our possibility.

Changing Speed: Downshifting

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….