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.