Have a Nice Day

It just happened. I thought it never would. For the first time ever, a random stranger on the phone actually considered the context of our conversation and self-edited. This has never happened before.

Here’s the scene: I was cancelling my dad’s Amazon account. I spent about a half hour bouncing around on the phone, feeling a bit like I was on a world tour with all of the varied accents of the numerous international phone workers I encountered. You know, the phone bank where you can hear endless conversation in the background? 

When I told this particular woman that my father had died, she became very serious and genuine with her condolences. We conducted our challenging business of communicating through noise and language barriers. Then she did it. She closed the conversation by once again expressing her condolences, then got halfway into, “You have a—“ then abruptly cut herself off, paused, and said, “Take care of yourself.”

This has never happened before. She is my new favorite international (including within the US) random stranger on the phone. Probably always will be.

In the weeks and months following Pat’s stroke, I had to make countless calls on really painful and life-altering subjects. Often I cried. The individuals for the most part were genuinely kind. For example, for the first year I had the direct number to a representative at Blue Cross Blue Shield who kept my account number on a sticky note so I didn’t have to look it up. I called that often.

Consistently, people performed well, then would drop the ball at the very last moment when they chirped,

“You have a GREAT day!!!”

I’ll admit that I occasionally indulged myself with a, “How could I NOT??!!” Or perhaps something that included a bit more colorful language. Just a few times, though.

…all this to remind myself to be mindful of the experiences of others. To push myself to be present in conversation—even with strangers. Since you never really know what someone is going through at just that moment.

So: You take care.

The Lens of Possibility: Resilience Tour 2018

At our house, we are students of resilience. I like the word, how it feels in my mouth and to my ears. Resilience sounds strong and powerful, which are traits that I held dear in the past. I’ve noticed, though, that the practice of resilience doesn’t feel strong.  It feels like soft and vulnerable and pain and tears and doing it anyway, at least when you can. We are its students. And it got me thinking:

Can resilience be learned only through challenge and pain? 

It’s time to move our story forward. So much of what's happened to us--to anyone--is not what we would have chosen. Until recently, it's felt like all we could do was react. Life has given us limitations, more limitations than some. We have physical limitations. Both Pat and myself. Which have, in turn, become career and thus financial limitations. We have a child to raise. For quite a while still.

For a long time--3 years since Pat's stroke, 2 years for my Lyme--I felt small, vulnerable and trapped. Fear has been my dominant emotion.Today, I feel small and vulnerable and not trapped. Which is a significant shift.

It went like this: Pat will not be returning to his career. As of the end of this year I have retired. The trainings are just too hard on me, both physically and logistically. And my dad’s rather sudden death has hit me  hard. Not the nurturing type earlier in life, I learned his love through my struggle with Lyme. He was my greatest cheerleader for two years. Just like that, with no time to prepare, he is gone. I have to dig back into memory for his support now. When I do, I principally remember what he said to me nearly every time we discussed my challenges:

“Don’t look at where you’ve been. Look ahead. Look to where you’re going.”

…but when I tried, where I was going looked the same as where I’ve been. I couldn’t imagine a different future.

Then one day a month ago, James, now 10, came downstairs and announced that he is finished with school. Decisively and emphatically, just like his mother. I opened my mouth to argue, and then closed it. 

…Pat isn’t working.

…I can finish my book anywhere.

…our income is not geographically-centered.

…James is unhappy and needs change.

So we are going. I can follow my dad’s advice now. It is time for change. Our start will be both grand and cautious. After winter break, James will be homeschooled. In mid-January, he, Pat and I are headed to warmer climes. First a month or so in LA, San Diego and Phoenix. Then another five or six weeks in the Tampa area. That’s right, we are taking this ragtag crew on the road. Or, more accurately, to the air.

…because we still have to be cautious. The places we are headed are the homes of close friends and family. We still need support. Crazy as this all may sound, it will be pretty conservative in its execution. The important part is that we will be experiencing life circumstances of our own making. We haven’t done that for quite some time.

Am I scared? I’m terrified. Mostly that there will be some kind of mobility challenge that will put off our launch. Now that I’ve posted this, I’ve set an expectation. Will I plan this adventure anyway? Absolutely. Because I’m learning. It’s possible to be small and vulnerable and soft and resilient. Welcome to Resilience 2018.

If you do only one thing--

Things don’t work the way we think they do. There is no “They” in our present system (as in, “They need to help you/get him/take care of…” There is YOU. And your planning and your support. That is all.

Biggest point? You probably have life insurance. And you really, really should. But are you prepared for what happens if the person *doesn’t* die? It sounds cold to bring it up, but believe me, it’s more cruel to live it without being as prepared as possible. We had some glaring errors in our preparation, but we did one thing right—

We always signed up for and maxed out on the Long Term Disability Insurance through Pat’s work. We didn’t know exactly what it meant, to be be honest, but we knew it sounded better than nothing. In the end, this has saved us financially. We will receive 60% of Pat’s monthly salary until he is 65. Let me draw you a picture here: If we hadn’t done that, weeks after his stroke, we would have had 0 income from Pat, who was—and now continues to be—our primary financial support. We would have blasted through short term disability, cashed in his vacation time, and then nothing. Absolutely nothing. All while I was at the hospital 8+ hours/day with him, then also being Mom, keeping our household running, and planning the next steps in his care. If you have an option for Long Term Disability Insurance, TAKE IT. It’s not very much monthly, and can literally save you. Even today, two years later, it is saving us, despite this interesting twist: The insurance company requires that you file for Social Security Disability, then once it’s awarded, they deduct that amount from what they pay monthly, so you can never get over that 60%. It’s in the fine print.

I cannot imagine our lives without that net. We would be destitute.

Next, and equally important? POWER OF ATTORNEY. I thought we had done that. I really did. But when the time came, I couldn’t find it. Again, here’s the picture: Pat had a stroke. He was unconscious for days, and when he came to we learned that he had expressive aphasia. What this means is that when he tried to talk, the words came out like senseless sounds. Same when he tried to write. He could understand what we said, but couldn’t reply. So here I am at home, trying to find out about say…whether there would be any money coming through on our regular direct deposit. If I’d be able to pay our mortgage and electricity. Whether we continued to have health insurance. You know, little things. And NO ONE would talk to me. I literally could not find out the answers to any of these questions because I didn’t have Power of Attorney and Pat couldn’t speak.  Or write sensible sentences. We totally lucked out.  His signature—rote learning—was stored in a different part of his brain, and he could sign his name. A friend drafted a POA for us and the hospital notary stood by while Pat nodded and pointed to agree to her questions and just like that, the veil was lifted for me. I could legally act on his behalf. What if that hadn’t been the case? What if he had remained unconscious? In the middle of this tremendous all-consuming life event, I would have been in the process of filing for power of attorney. I can’t even imagine.

Next: Do not have all your retirement investments in in one person’s name! This was a big one to learn: If your legal partner ends up needing to live in a facility, such as a nursing home,  health insurance doesn’t cover it. These places are incredibly expensive—here in the Philly area, your garden variety nursing home will cost about $10,000/month. That’s a Medicaid-participating facility, not a private one. You are probably wondering how you could possibly pay for that?  Well, most people can’t. So what happens is that you spend down all of your assets in that person’s name—I am spacing on the exact number and it’s probably changed in two years, but it’s under 10k. So every month, you pay the nursing home their 10k. You liquidate your assets. Your retirement. Everything you’ve worked for, until you are financially destitute, and THEN you can apply for Medicaid (which is FOR the financially destitute) and they will take over the payment. Here’s the kicker—BEYOND what your monthly income is. So that 60% of of Pat’s income that we get through the long term disability insurance/month? That  would have gone to the nursing home. And Social Security Disability? Same. 

I consulted with an attorney who specializes in the field, and had that been our situation, the law would have allowed James and I to keep something like $1800/month to live on, and the rest would have gone to Pat’s care. For as long as he was in such a facility. And our retirement? Well, Pat’s company doubled any money we put away, so we had almost all of our resources invested on his end. Definitely the way to maximize on your retirement. Also works if the person whose name the investments were to pass away—you still get more bang for your buck. But again, what if the person does’t die? What if they require ongoing care? That money is going nowhere but to the long term care facility. And once disaster has hit, you can’t transfer it over. The assets couldn’t be transferred to my name. That’ illegal. So while there were some allotments where we could use it to pay off our mortgage and for Jamie’s education, the majority of our retirement funds would have been spent on care. However, any resources in the well spouse’s name cannot be touched by Medicaid. So I could make a kagillion dollars/year (wouldn’t that be great?) and my partner could be on  Medicaid. I could have have a kagillion dollars in retirement assets and Medicaid couldn’t touch them.

This was interesting information to have, just about 20 years too late. It’s an interesting twist to the choices of parenting roles we made all along. Had things gone a little differently,  those choices—for me to have more of the parenting and less of the income responsibility—could have devastated us financially today. Would I do it differently if I knew what a vulnerable state we could be left in IF—and it’s a giant if—we had ended up with a situation in which Pat required care? Could I even imagine such a thing 26 years ago when we seemed invincible? I don’t know. I’m offering this information as one more factor to consider—as if these choices aren’t hard enough!

Either way, I strongly suggest that everyone evenly distribute assets between partners, just in case. 

I read what I’ve written above and what shouts out to me is my privilege. That we started this journey with assets to lose in the first place. Not a day has passed when I haven’t considered what this experience would be for someone who works an hourly wage. Who doesn’t have insurance. Who doesn’t have family and friends to fall back on. I imagine being who I am but in living in a society where men are the protectors. Where I couldn’t get a job. That said, there is value to passing along this information. I am aware also that circumstances vary by state, my recommendations are given through the lens of my experience and memory, and that there may be more options out there. I sure hope so. My whole objective here is for people to think ahead and know how the process can feel in the moment, so they can plan. 

Wishing us all health and peace in the New Year.

"If you don't have your health..."

 "If you don’t have your health, you don’t have anything.”

Obvious, right? For me, it was a memorized platitude (fortunately, not one that I ever spoke aloud). Important words, but to be honest, they landed inside me but  just rested there. They didn’t register. Today, I get it. Not at all empty, these words are TRUTH. What they mean is this: you don’t have—anything. Nothing feels solid.  What you held firmly in the past now crumbles and slips through your fingers. Let me explain.

If you don’t have your health--

There is no certainty. Will you get better? Worse? Stay like this? When? Is this the best treatment? Should you find something else? There’s a constant conversation in your head. Life becomes more questions than answers. I’m convinced that eighty percent of the challenge in my illness has been anguish. Pain is bad enough, but uncertainty is torturous.

You don’t have time. Fighting for wellness is all-consuming. Making appointments, going to appointments, telling people about appointments, arguing about bills from appointments, paying for appointments.

You don’t have money. Well, maybe some people still have money, but they sure have a lot less of it than they started with. Whether it’s loss of income, medical bills, early retirement, outsourcing tasks you’d normally complete on your own…it slips away. Fast.

You lack self confidence. Your body is failing you, and it can become hard to trust. You’re insecure in ways you weren’t before. There is a vulnerability that is unspeakable, somehow invisible and glaring at the same time. 

You don’t have your identity. You become the sick person. Everyone is concerned, everyone asks—your health becomes a shared priority. It makes sense, then, that people discuss your situation in your absence, as well as in your presence. Your body becomes public property—people discuss your weight, your skin—they comment on appearance in a manner that does not usually take place in polite society. You can’t do things you did before, and would reinvent yourself…if you had the time and the money. And the self-confidence.

You don’t have your friends…sometimes. It’s hard to be a friend to a person in crisis. Way less fun.  Many rise to the occasion and are rock-solid. Others are more good-times friends. They’re frightened or overwhelmed by your situation.  Or just plain worn out and need a break from being a primary support person.

You don’t have spontaneity. While in the past you’ve made plans thinking, “…barring anything unforeseen”, today the unforeseen has a shape and a name. It’s challenging to commit to events (see anguish, above) and sometimes feels simpler to just not make any than going through the emotional effort required to plan for eventualities. Day to day spontaneity falls away as well. There’s self-care and med times and endless rituals and limitations that can somehow arise as focal points of the day.

There are positives to be gained, certainly. Patience comes to mind first and foremost. Adaptability. Grit. Gratitude. Would I trade them all in a flash to have my certainty, time, easy friendships, money, identity and spontaneity back? Puhlease. You bet your ass, I would. In the meantime, I offer the above as my effort to provide perspective and perhaps harvest a tangible positive for myself while doing so.

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….

Plugging the Holes

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.

...and yet you smile

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.

One Week: A Minimalist Endeavor

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.

Move

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.

Move.

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. 

There Are No Good Stories Here

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.

The Kindness of Intimate Strangers

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:

Dear 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.

With gratitude.

Today I Ran

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. 

Away.

Far.  

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.

The Less Than Obvious Thanksgiving

Thanksgiving has always been my favorite holiday. Time with family, good food, no commercialism. All of the best elements, I've always thought. I looked forward to it. Blindly assumed that others felt the same. 

Not today. Not now. Right now, gratitude is a challenge. Sitting in a hospital all day with most of my now-changed family. My family of origin in another state, grieving the death of my sister in law, my sister since my teenage years.

 No big dinner. No family laughter. Cafeteria food followed by a take-out meal from Chinatown. And suddenly, I crave commercialism. To lose myself in some item that will give me pleasure, offer distraction, fill a hole for a moment. There are many of us in the hospital experiencing a day like all the others have been lately. Stressful. Lonely. Empty, worried eyes.

Today it feels especially important to practice gratitude. Maybe this is what Thanksgiving is truly about.

Finding the color in the bleak grays. The health of our beautiful children. The 28 years of uneventful, healthy Thanksgivings before this one. The decades of life we were able to share with my sister-in-law. Our safe, warm home. Friends. Always the friends. And the joyous holidays ahead of us. Today I learn that gratitude isn’t just a feeling, but must sometimes also be an active choice—a practice. This year I learn to focus on the smallest of gifts and to be grateful.

That's ok. I like a challenge.

A few other gifts:

Red leaves, right outside my window

My new boots (yes, retail therapy is a real thing)

Family art and games

Good scotch

I absolutely love training doulas

I absolutely love teaching/studying karate

I absolutely love my family

Amazing nurses and therapists

The ladies at the desk at Magee, cafeteria workers and others who offer more effective support than the PhD's

Hope

I feel better.


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