Jamie was trying out his new camera as we were waiting for a friend. I was reveling in the sunshine and not really paying attention when he told me to tip my head up—and back—and over—and then cackled with glee. The result you see here—somehow there was a beam of light that he managed to place in just the right spot.
“That’s how you look anyway, when you’re mad. You shoot out those Mommy Eyes. You could make anyone stop with those—even any grown up!
I love this boy.
Choosing the items that will last for months yet fit into one suitcase and one backpack has become an exercise in self-awareness. Things I’ve learned about myself: I do not need most of the things that I have. It feels good to leave my normal trappings behind and live more minimally. But here’s another trait that’s made itself known—I don’t want to live too minimally. I use clothing to reflect my mood and experiences. The thought of rotating through a few sets and laundering often held great appeal in theory. In practice, packing felt—sad, dreary. I surrendered a few items (see you in the spring, yoga block) and found what I think will be a happy medium. We shall see.
"Fret not, my son. None of us is perfect.
It is better to have crooked legs than a crooked spirit.
We can only do the best we can with what we have.
That, after all, is the measure of success: what we do with what we have.”
This quote is taken from The Door in the Wall, a Newberry Medal winner published in 1949. I can tell you nothing about this book other than this quote. For reasons I cannot explain, I hand wrote these words in my best sixteen year old calligraphy and affixed them to my wall. There they remained throughout my high school and college years. Why?
Perhaps a childhood of living with my elderly grandparents. Perhaps because I had a close friend whose mother was a visually impaired dynamo and inspirational human. Perhaps because her daughter, my friend, was already grappling with her own early vision loss. Perhaps because due to recent volunteer work with people with disabilities. The why makes no matter, really.
The words have been lodged in my head since then and from time to time, they bubble up. This morning when I woke for this inaugural day of our Resiliency 2018 trip, they were repeating in an endless loop. Sitting in forced stillness on the plane, my conscious mind has caught up with my subconscious and it is clear to me—these lines are the whole point of this trip.
Doing the best we can with what we have. Expanding our limits while respecting our limitations. I doubt that we will accomplish much that is grand over the upcoming months, but that will is not the measure of success. We will be kind. We will smile at strangers. We will help when we can. That will be our measure of success.
…what we do with what we have.
Originally written 11/1/14
Have you ever experienced a moment that so ironic, you can taste it? Feel it in every fibre of your being? A conversation that leaves you silent, trying to find a place to house it within yourself once it’s complete? These days, I have conversations that feel this way pretty much every day. Today’s conversation involved explaining to my mother-in-law, who herself experienced a stroke 4 years ago and has been confused ever since, the challenges facing her post-brain-bleed son.
Explaining to her that he experiences gaps, but doesn’t feel that they are there. That he is sometimes confused in his thinking, as she has been for years. A confusion which he had little patience for in the past. All without saying to her, “Your son is like you now. He gets things wrong and is confused but denies the problem when confronted with it.”
At the same time, acting respectful during his challenging moments, without the obvious, “You are now like the mother whose confusion earned your disdain,” escaping my lips.
My words dance as I explain, I describe, and I swallow the obvious like the awful, cherry-flavored medicine of my childhood. I choke it down and it goes—somewhere. I choke it down, I. Choke. It. Down. Like the ocean, I suspect that at some point I’ll discover a continent-sized flotilla of crap somewhere inside of me. But for now, I have the conversation that feels unbearable. And then the next one. And the next. Because they are both lost in time. And they both deny it.
Originally written 10/16/14
Our daughters turn 22 today. 22 years ago at this very moment, we were in a different hospital. On the other side of the country. For a very different reason. 22 years ago life was all potential. Who our family was about to become. Who our children would turn out to be. Who we would be as parents. What our lives would become. 22 years ago we never could have guessed what was ahead of us. So many things. Some wonderful, many hard. But never this.
And today, we sit in a hospital. This time I’m in the chair rather than the bed. Sitting and wondering. What will become of us? Who will we be? Who will our children be? The same. But so different.
Originally written 9/15. Disquietingly prophetic. My Lyme hit in November.
On this, the eve of the first anniversary of Pat’s stroke, I can feel it creeping along the edges—soon, I may lose my shit. I don’t mean tearing apart someone from billing over the phone (been there) or screaming at a family member for some minor mistake (done that). I mean Losing. My. Shit. Big stuff. Biblical. I feel it coming.
What I don’t know is what it’s going to look like. Will I grab my little guy, hop on a plane to Mexico, and stay there for a year or so? Will I be the perpetrator of road rage? (although I don’t have a gun, so I guess it would be road yelling). Will I just start crying and be unable to stop? Quit? Take to my bed and just not get up? This is the one that most people end up with, I think. People who just can’t go on. I hate this one. Not for me, I think.
Will my body take the bullet and create a health crisis of my own? That happens a lot too. Also unappealing.
On this one year anniversary as the “you’re completely fucked” envelopes keep landing on my table—no health insurance, no life insurance, no money—will I eventually just leave them lying there, unopened? Just wait as things crumple and fall down around us? So tempting…
My new, enlightened, “When life gives you turds, make lemonade” philosophy assures me of this: I can’t plan my shit-losing. Because that would be too straight-forward and clear. That’s not how life works. You’re following the magician’s cues—“Look over here! Eye on the prize! Sparkley shimmery…” meanwhile the other hand is launching those turds your way. So I will relax (see? I’ve learned something) and allow my shit-losing to unfold in its on way and time. Because you can’t plan these things. Or, arguably, much of anything else.
Originally titled: Fuck You, I’m Not Interested in Warming Your Heart
Never published. Written 5/15.
Let’s get this straight: I practice gratitude. I am grateful that Pat is alive, grateful that he can walk when they thought he never would, grateful that he can talk and be with us and we can all laugh together. Grateful for our amazing children together. Grateful for our supportive friends and family, grateful for financial security, even if it has been altered, our safe home and neighborhood, my rewarding career, the sun, the warmth, beautiful flowers and new experiences every day. Grateful that we have options.
That said, my least favorite part of our neighborhood strolls is walking past people who we kind of know—you know, those we know enough to smile and wave, but who really have no insight into our lives. People who don’t know that no, Pat isn’t back at work. And likely will not ever be. That things are very different and that change is painful and slow. That this walk isn’t just a part of our day together, then we both get back to work. This is what he can do right now.
I have to tell you this:
Please stop giving us the thumbs-up. Fuck that shit. Please stop telling us how amazing Pat is doing. Please stop putting your hand to your heart or your mouth with the involuntary expression of inspiration that you are feeling when you see him (us) out there day after day, striving to improve. I don’t want to be your inspiration. I don’t want my husband to be be your inspiration. I don’t want our struggle to be your inspiration.
Especially during our walks. They are challenging for me—time to actually think. These days thinking =bad. Especially when our situation is right in my face. Our slow pace. The repetition. The things that are obvious to me but not to Pat. His lack of judgment in terms of avoiding rocks and potholes. His wheezing. His talking to himself. The fact that this may be the only thing he really does today.
It’s completely irrational, but I feel like your heart being warmed has come at the expense of my life. Of my options. I want my life back. And you look at it and somehow it inspires you. I guess more than anything, I wish I had that inspiration that your body shows me you are feeling.
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.
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.
Originally posted 12/31/16
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.