Sunday, August 12, 2018

Because that was Gary


Around 3 a.m. yesterday, as we huddled in a family counseling room full of dirtied tissues and red eyes, the conversation made it around to Facebook. To me, it wasn’t real yet- the fact that my 40-year-old brother was gone, his body in the next room- it still isn’t.

A few years ago, my siblings and I discovered that one of our uncles had died via Facebook, so my sister very quickly issued a request to the stunned group mourning my brother. We decided to give it a day, to make the calls we needed to make before anyone posted anything about his death to Facebook.

Dealing with death has always felt to me like a very strange contradiction. Everything around those moments, those days, after you lose someone is always simultaneously a blur and a strangely, detailed, moment-by-moment slog. I will now always remember the midnight phone call from my sister telling me he was gone, followed by dressing quickly (and forgetting to brush my teeth), an hour drive to pick her up, and another hour to the hospital. It didn’t seem to like we were going to see my brother’s body. For two hours, we just assumed we were going to figure out what the heck was going on, and how my brother, who would inevitably be apologetically hanging out in the ER, had managed to so badly mangle a Friday night that his wife somehow thought he was dead.

But he wasn’t apologetic. This forty-year-old man, who had less than a week prior been golfing with friends and planning a trip for his one-year anniversary, was gone. And I resented that we even had to discuss when the news would flow onto people’s Facebook feeds, along with the dog photos and requests for recommendations and other inane activity that seems to trite in comparison.

Six hours later, my sister-in-law’s sister (so I guess also my sister-in-law?) was calling to tell me, among many other details, that our conversation was for naught. The local police blotter had posted information about the ambulance call that took my brother to the hospital, and some of the younger employees at the restaurant where he worked had identified him and his wife by name in the comments. I muttered much profanity, and we rushed through our last calls so we could post the information along with a request that people stop flooding his grieving wife with phone calls.

I spent most of the day railing against things- crappy maternity clothes options for a funeral, some work stuff that was requiring a lot of detangling before I could take some time off this week, and mostly how ludicrous it was that people couldn’t respect privacy or the dead and keep information off of Facebook. Last night, though, as I tried to sleep, I scrolled through the comments on my wall, my sister’s wall, and my brothers. I stopped railing. I smiled, I cried, and I gawked that the number of people posting their own tributes to Gary.

I also realized something- I didn’t really know my brother as well as I thought I did.

In our cramped “family counseling” room at the hospital, my sister-in-law had apologized as she told her family that she knew my sister would take it harder than I did. I told her not to apologize, it was simply true. Gary was my big brother, and I loved him, but he was my sister’s good friend. I never had the kind of relationship with him she did. All of the Facebook posts drove the truth of that home, and filled me with regret that I had never tried harder.

I come from a family of five. My dad and brother are a lot alike, and share some personality traits that I struggle to understand. I guess I should say were… they were a lot alike. Shit. That is going to be hard to adjust to. Either way, they both keep their emotions near the surface and were quick to anger and quick to forgive and forget. Gary was non-confrontational always. I used to wonder if he just didn’t notice behavior around him that would make me crazy, but when you got him talking, he absolutely did. He just wouldn’t ever address it.

I’m more like my mom was- my feelings are there but I keep them deep and don’t like people seeing them. I might get annoyed, but making me truly angry is quite a feat. However, once I am there, I am not quick to calm, forgive, and forget. I don’t like that about myself. However, I do like that I will tell you to your face if I am upset, generally calmly, so we can talk it out and move on.

I wonder if Gary thought of me like a robot, too logical, too cold, and too in-your-face. A week ago, I wouldn’t have cared. Now I do.

My sister is the only one that bridges the gap between all of us successfully. She is more pragmatic, like me, but her feelings are on the surface. She can’t handle confrontation at all, but moves on from anger too quickly usually for it to be necessary anyway.

And so Kara knew our brother. She knew the side his friends saw, the side I was aware of but didn’t experience often. She knew the generosity there, how liked he was, and how broad his social net was. I guess that’s another way we were just different- most of my friends I’ve known for 20 years, because I making new friends doesn’t come easily to me. For Gary, it was as natural as breathing.

As I scrolled through last night, Gary’s loss started to become real to me in a way beyond just realizing he was gone, that he would never again pass out on the couch immediately Thanksgiving dinner or show up with a bizarre potluck contribution that you couldn’t help but smile at and then eat. I lost my brother, and I lost the opportunity to know him better.

If I am being honest, I was mad at him, my slow burning kind of mad. He was a very involved uncle to my sister’s three kids. He planned ahead and took off for their birthday parties, took them trick-or-treating every year, and knew what they were interested in. He missed both of my son’s birthday parties, hadn’t seen him in eight months, and most recently skipped a cook out my sister threw us to celebrate the impending arrival of our daughter. All the love and generosity he showed his vast social network didn’t apply to my kids, and as a protective mom, I was pissed.

I know there are a lot of factors. He lived 20 minutes from Kara, and 90 from me. Kara’s kids are older and easier to form those relationships with. And, Gary and I just weren’t as close, so I couldn’t, and didn’t, have the same expectation of effort with my son. I knew part of it was on me, but I was still pissed.

And yet, all of that vanished when I looked at his body on the gurney. Gary could do that- you could want to throttle him, and then he’d made some joke or shrug something off in a way that would have you laughing and forgetting about how annoyed you were.

I saw this so clearly last October when he got married. Gary was so excited about this wedding, as w
e all were. He worked tirelessly to plan it, despite the glaring obstacle of Gary being very, very bad at planning things. And so, after the rehearsal dinner, Gary asked if some of us could spend “20 minutes or so” setting up for the reception. He directed us to the massive venue with a vague explanation of how to get in, didn’t account for the need to get 11 of us through security before we could set up, hadn’t organized the tent cards, didn’t have a plan for what we were doing, and on and on. His “20 minutes or so” ended up being nearly 3 hours. As a mom of a toddler, every extra minute was one less I got to spend alone in a hotel room, which was a rare treat I had been looking forward to.

But, try as I might, I couldn’t really get mad, because every time I started to, I would look over and Gary would be busting his ass to make everything perfect. I would notice the ten other people that got roped into that set up clusterfuck were all just going with the flow, laughing with him, because they understood that this was just Gary. He worked so hard on that wedding, on making it a day that would make Connie happy and be memorable for his guests. And it was.

After the wedding, we were all rehashing stories from it, and I was floored again by how he just knew people. We could mention anyone, even using the smallest detail, like the color of their tie or their hair cut, and Gary could instantly tell you who it was from among their nearly 200 guests. He had a story for all of them. Because that was Gary.

That was the Gary I will never get a chance to be closer to. He was my brother, and I loved him, and I am heartbroken, but the best side of him was one I didn’t know or understand well enough. That was the Gary that filled Facebook last night, driving home to me that losing someone isn’t just losing what they were in your life- it is losing what they could have been.

Saturday, January 27, 2018

Another way in which we need to believe women...

There is a part of our culture that I simply cannot wrap my brain around. Women, who can go through child birth, who can manage a household and a full time job, who are so often caregivers for others, are so often treated as hysterical when it comes to their own bodies.

This is something I am personally well-acquainted with. I know what it is to be absolutely sure that something is wrong, but struggle to make my doctors believe me.

When I was 13, my pediatrician told my mother to take me to a psychiatrist because he believed I was faking a pain in my right side for attention. He had run the usual tests and found nothing. My mother was indignant, switched doctors, and continued to believe me even when I started to doubt myself. Months later, exploratory surgery revealed that I had a blockage in my appendix. Though it showed on no tests, the condition was serious and the surgery may well have saved my life.

Later in her life, my mother would be put on antidepressants by a PCP who couldn’t come up with an explanation for why she had broken half a dozen vertebrae over the course of four months. Nothing showed on tests, so he didn't believe her. To this day, I wonder if she would have reached her cancer diagnosis earlier had he sent her to a specialist earlier. I wonder if she would have lived long enough to meet my son had she started treatment before the cancer progressed so far.

At age 30, A GI told me that, as an overweight smoker, I should just expect to have stomach aches. 
He didn’t believe me when I told him I knew something was really wrong with me. While I should be grateful that his laziness and insensitivity pushed me to quit smoking, instead, I remain angry that his indifference meant it took even longer for another doctor to diagnose me with a rare disorder that, like many other things, isn’t easy to find through bloodwork and imaging.

This isn’t just me. It wasn’t just my mom. Study after study shows that women are not believed when it comes to their own pain. Here are just a couple of examples:

Huffington Post quotes a “study found that female patients more likely to have their pain described as emotional or psychogenic.” https://www.huffingtonpost.com/entry/is-there-a-gender-bias-against-female-pain-patients_us_589b6b3ee4b061551b3e06ab

The Independent discusses how “Medical professionals take longer to address women’s pain, and do less to address it when they eventually do, even when they have the same symptoms as men.”  http://www.independent.co.uk/life-style/health-and-families/health-news/how-sexist-stereotypes-mean-doctors-ignore-womens-pain-a7157931.html

The Atlantic cuts a little closer to home by sharing the story of a woman who “has been reckoning in a sustained way about her own fears about coming across as melodramatic.https://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/

That woman could be me.

I had a lot of time to think last night. I didn’t sleep much for a simple and frustrating reason: I was in too much pain. I tried every position, every setting on my heating pad, and everything in the medicine cabinet that I thought might help, but I could not lessen the pain enough to sleep.

Weirdly, though, the pain was a relief.

In March, I first had this pain. I was evaluated for kidney stones and dismissed by a PA that didn't ask a single question. She told me to go to the ER if I "thought" I was in pain. She didn't believe me. 

Later, I was sent to the ER by my GI. There, I was made to wait 14 hours and offered Tylenol for my pain. The triage doctor didn't ask me a single question. She looked at my bloodwork and didn't believe me. 

My current GI, who always believes me, now suspects that my current pain is unrelated to my chronic GI condition. Over the summer, he called my OB/GYN and suggested I have an exploratory laparoscopy to look for endometriosis. Though she was skeptical, my OB/GYN put me on medication to treat endo. My pain vanished. As soon as I stopped the medication, the pain returned.

Monday, my doctor told me it was time to do the surgery and see if I truly have endo. My reaction was to cry.  

As I talked through this with my husband later, he was baffled as to why I was even worried.  He pointed out that I’ve never been wrong when I suspected something was wrong with my body before. It’s hard to explain that constantly fighting to get people to believe you can make it hard to believe yourself. The truth was, on Monday, I had felt OK for a few weeks and started doubting my own memory of the severity of the pain. Thus, last night I felt relief in reliving it and confirming that it is, in fact, debilitating. 

In the last six months, I have considered seeing a psychiatrist. I have googled Munchausen’s Syndrome and Hypochondria to see if either explained my experience. I have pondered whether I am making it up without even realizing it.

I have internalized not being believed to the point of questioning my own sanity.

Perhaps the surgery will reveal something new. Perhaps it will not. But last night, in my many hours of wakefulness, I promised myself that I would not stop seeking an answer if I don’t find one on the operating table. I promised myself that I would always believe me.

Women are fierce and capable. Why is it so hard to convince doctors that our pain is valid? That we know our bodies and are capable of sounding the alarm when need be?

It takes an average of ten years to diagnose endo despite that fact that 1 in 10 women has it. 

Ten percent of women have it, and yet it takes a decade to be diagnosed. Endo doesn't show on imaging or blood tests, and so often, women complaining of pelvic pain are made to believe that the pain is normal, or that they are exaggerating its severity. 

It takes a decade, I think, in part because women aren't believed. 

I am encouraged by the fact that we are FINALLY started to believe women in matters of harassment and assault. I am absolutely not comparing my experiences herein to those of the brave women helping to build this watershed moment in our society- the scales don’t even compare.


But I am asking… can we consider believing women when it comes to their bodies, too? I think the start is for people like me to stop downplaying our experiences because we don’t want to be perceived as hysterical. 

The start is all women promising that we will believe each other, and ourselves. 

Wednesday, October 4, 2017

Until we're the ones who can't move on

Disaster burnout is a very real condition. In a recent article for CBC news, Kate Bahen, managing director of Charity Intelligence Canada, talked about donor fatigue. One disaster, Bahen said, can "galvanize the donor community," whereas "multiple disasters can paralyze it" (see the full article here).

If you swap out "donor community" with "the population of the United States" and change "natural disaster" with "gun violence," I feel like what is happening in this country can easily be explained by the same sentiment.

We're paralyzed.

I thought of this today as I was scrolling through my Facebook feed, and found myself instinctively trying to scroll faster past the many images of the victims of the Vegas shooting. Once I realized I was doing it, I felt guilty for effectively ignoring the tragedy. At the same time, if I think about it, my instincts forcing me past this is likely a pretty clear sign of my mind's push for self-preservation. The emotional investment needed to keep caring so much about every victim of a mass shooting in this country is high. At 4 a.m., after rocking a toddler back to sleep and with my mind reeling over the to-do list for the day, perhaps I just didn't have enough to give.

Logical? Probably. Am I proud of that? Absolutely not. But it did get me thinking about some things.

There is a growing club in this country. Membership is mandatory for those inducted, though their participation is not something they would ever agree to if given a choice. This club is for those people who walk around for the rest of their lives living around the hole gun violence has created.

While I don't know what it is to belong to this club, I do know what it is to live around a hole. I lost my mother to cancer 7 years ago. Her death was slow and forewarned. Every single day since, I have dedicated minutes, sometimes hours, to thinking of her, missing her, and wanting her back. I have learned that grief is not linear, and it is a process that never ends. You never "get over" a loss, you simple learn to live around the hole it leaves in you.

According to USA Today, this country has an average of 8,592 gun homicides each year.  For each and every one of those, there are people left behind- maybe 1, maybe 100- that get their mandatory induction notice into the Gun Violence Grief club. Hundreds of thousands, perhaps millions, of people in this country are living around the hole made by someone lost to gun violence.

I honestly don't understand. I don't think I am alone in this, I think many of us don't understand.

Drunk driving used to claim a lot more lives than it does now. When this was recognized as a problem on a national scale, we went to work. We pushed education to kids in schools, we instituted harsher penalties for drunk driving. Check points became a thing. Signs started warning us to drive sober. As a result, in the last 35 years drunk driving fatalities in this country have decreased by 51% according to Responsibility.org.

I'll need some help here, since I'm too young to remember the impetus of our focus on curbing drunk driving as a country. When we noticed that it was a problem, did people immediately shut down the conversation with discussions about how it is everyone's right to drive a car? Did we consider putting up bumpers on the side of every highway so we don't infringe on that right? Did we throw our hands up and say that making the penalties harder won't stop it all so why stop any of it? Or did we act?

While I generally try to avoid reading the comments section of any article or tweet, lately I have failed in that. What I see there is a lot of sound bytes and generalizations that equate to very effective ways to shut down any conversation about helping to curb gun violence in this country. You likely know most of them by now...

If we make it harder to get guns, people just get them illegally
This isn't a gun problem, this is a heart/sin/human problem 
The left want all of our guns
Republicans don't care how many people die as long as they get to keep their assault rifles 

These all make an easy form response that chews up news time and makes for some heated and cathartic arguments, but very few of them are very close to the truth at all. According to a 2017 poll by Quinnipac University, 54% of us support stricter gun laws in this country- more than half. More than 90% of us support background checks for all gun buyers.

In the interest of transparency, I am pretty far left on most of my political opinions and beliefs, but we need to take that out of the equation.

This isn't about left or right. I support American citizens' second amendment right. I do not want, nor would I support any law aimed at stripping our population of all of their guns. I also support stricter gun laws in this country aimed at limiting the scale of tragedy one well-armed person can cause.
Just like driving a car, owning a gun is a responsibility. Thus, just like driving a car, I support requiring evidence of someone's fitness to do so before they can purchase a gun.

It's really that simple.

Perhaps if we stop making it right versus left, we could all step back and demand action from our legislators. This is a democracy, so given that well over half of us want something to happen, we should have the power to make it.

If we all stop scrolling past the news of the next mass shooting...

Sunday, May 14, 2017

Motherhood is never feeling just one thing

"You're supposed to be sleeping in."

My day began with an admonishment as I tip-toed past my husband (sleeping on the couch with the baby monitor so I wouldn't be woken early) to grab my laptop.

"I know," I said, because it was easier then again trying to explain why I love the early morning hours to the consummate night owl that I married. The man who generally communicates via unintelligible grunts because his first cup of coffee will never truly understand  how much I delight in the rare calm I find in the stillness before everyone wakes up.

It's Mother's Day, and my one promise to myself was to make some time to write. This was a necessary to-do, as I've been lately feeling the haze off too many thoughts unwritten crowding my mind. So here I sit, pre-dawn, on the day when I am supposed to be lounging in bed, happily typing away.

And yet, I keep glancing at the time and feel an increasing anxiousness for my son to wake up. Less than twelve hours ago, I was willing the time to move faster and hasten him to bed so I could just sit for a while. I never truly understood how glorious sitting still can be until my son learned to walk.

But now, I am missing him. I can't wait to say good morning, to see him proudly yell "hi" while he gives me his deliberate, chubby-handed wave. I love the mornings, when he is still groggy, because he wants to be held and to rest with his head on my shoulder. I know every day that the last moments of my stillness will evaporate when he declares "done," hands me his cup, and races off to whatever the most interesting thing is that moment in toddler world. I love to watch him play, but always feel a moment of sadness when he climbs down from my lap.

I thought of this last week when a coworker told me her son was about to get his driver's license. She was excited to give up her chauffeur's hat, but also nervous at the prospect of all the worry his knew mobility would bring her.

"Isn't that just motherhood?" I asked, holding my hands up to mirror a scale. "It seems that it is never feeling just one thing."

She nodded with a smile, and we chatted more, having already covered the simple truth that unites moms, no matter the age of their kids.

Motherhood is never feeling just one thing.

Last year, I remember being elated that my baby was no longer a newborn and I was suddenly able to sleep again. At the same time, I missed having my kid at arm's reach all night after moving him to the crib to allow said sleeping.

Now, I am in awe of all the new things he seems to learn every single day. I love his newfound independence, of how much easier it is get some time to myself, but wish I got more than those first few minutes every day when all he wants is to sit on my lap and rest his head on my shoulder.

Motherhood is feeling so happy that, more and more, he can tell me what he wants instead of crying for it but wishing he didn't suddenly delight in offering a hard "no" when asked to give me kisses or hugs.

Motherhood was being embarrassed by his jealousy yesterday when we had a friend's son over for a few hours, but being excited by his first utterance of a two word phrase (which was "Mommy MINE").

Motherhood is greedily typing away and being so thankful for the few minutes I got to write this morning, but missing my kid and hoping he wakes up soon. Motherhood is knowing that, within an hour, I will be wishing he would just sit down but feeling guilty over not having all the energy I would need to keep up with him.

It's Mother's Day, which likely kicked the haze of the unspoken into high gear for me today. Like so many things about motherhood, I will never feel one thing about today.

Already, this year's Mother's Day brought me an awesome hand and foot painting from day care. Already I got to go to Mother's Day tea and giggle inwardly as I spent the entire time trying to stop my little klepto from stealing the other kids' cookies. Later, we're heading out for brunch, my favorite meal, and then I am pretty much guaranteed a nap. I have a sneaking suspicion that the earrings I've been eyeing for months are probably somewhere in this house (at least I hope that was the result of me sending by husband a link for them along with the words "Mother's Day is coming"). And I got to write. Oh, man did I need this!

At the same time, Mother's Day will also never stop being a little sad. I still mourn my mother's loss every single day. I miss her in every moment that my kiddo does something amazing or awful and I feel, like an itch in my head, my inability to share it with her.

I find myself saying things to him and hearing her voice echo through. Some I fight ("it's wakey-uppy time!" Shudder). Others, I embrace ("tell me all about what's wrong"). I feel like she would be proud of me and the job I am doing, even on those frequent days when I am just sure I am getting it all wrong. I take joy in that assumed pride even when it makes me miss her so damn much.

He's stirring now. I hear a tiny voice echoing down the hall as he talks to his stuffed animals. I am both relieved and a bit panicked- I am sure I had more to say. But I will go get him ready, get frustrated when he fights a diaper while finding his futile protest adorable.

I will go celebrate my day and keep feeling two things all together today, and for the rest of my life.

Happy Mother's Day to all the awesome Moms out there. And for those of you who are Motherless today, you're in my thoughts as well.