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….