Let go or be dragged

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What it feels like sometimes to have a chronic illness.

This blog has always been a place of healing for me. You, dear readers, have contributed to creating this safe sanctuary with your comments and stories, sharing your hearts, your struggles and your fears. Vulnerability breeds vulnerability. But for these past few months, hitting the publish button on WordPress has been a terrifying idea for me. To share what has really been going on in my life comes with risk, mostly the fear that I will invite in pity and that no one would understand.

What has pushed me to finally tell my story here is my frustration over the last few months of the lack of personal stories around chronic illness, particularly young adults living with chronic illness. In other words, stories like mine.

As a lover of non-fiction and memoir, I have listened to, watched and read accounts of people’s chronic illness experiences, mostly about those who are living with and/or survived cancer. I turned to others’ stories of sickness to try to understand mine. I longed to find stories that helped me connect with someone else who might be going through/or have experienced similar challenges. I found some nuggets of comfort in their stories, points of relating, but I have since come to realize that every person’s story is unique, and so is mine, and it is one worth telling.

During this past summer, my health was relatively stable, and I started to feel like I was getting my life back and getting ME back. I was running again for the first time in years and I cannot tell you how good it felt to reclaim that. I felt normal again–hopeful. I ran 4.8 miles in a relay race and signed up for my first 10K. I spent the rest of my summer training for my 10K in September—the 10K that never happened.

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Me over the summer when I was back to running and feeling strong and on top of the world. 

For the past month, my chronic illness has flared because of a virus that I contracted. Over these past few weeks, I’ve been re-experiencing what it’s like to have a chronic illness rob me of big things like my identity and little things like cooking dinner. Anger and frustration have been building inside of me. I feel like I have control over nothing and it scares the hell out of me. While these emotions don’t always feel good, they’re fueling me to feel more empowered in this mess and not be afraid to use my voice to share my story and also advocate for myself in a healthcare system that downright just sucks.

***

Chronic illness can be a lonely journey. Throughout mine, I have often felt that no one could understand what I was experiencing, and so I isolated myself. Beyond my immediate family, only a handful of my close friends know about my illness. I coped by not talking about it. When you say things out loud it feels too real. I no longer want to stay silent.

Over the summer, I finished reading Natalie Goldberg’s latest memoir about her journey with cancer: “Let the Whole Thundering World Come Home.” In the preface, she writes “a writer has a second chance to digest experience.” For me, writing has always helped me make sense of the world, process what feels unexplainable and painful. But for the last nine months or so, I have been so immersed in my health that I no longer had the energy to digest my experience. It was easier to shut down and numb out. All my strength was poured into grad school, doctor’s appointments and medication changes. I fell into my default mode of pushing through. During that time, the pages of my writing notebook and journal sat mostly blank, except for some random entries about doctor’s visits or quotes that moved me. It wasn’t until May that I cracked open my notebook again while lounging on the beach listening to the constant calm of the sea and trying to make sense of the past year. It felt equally freeing and scary to put words to paper and face those difficult emotions.

The thing I wanted to write about, the thing that had become a constant presence in my life since August, I have been most afraid to write about. To write about anything else would have felt false, inauthentic, which is why you haven’t heard much from me in the last year on this blog.

There is a Zen proverb “let go or be dragged.” Writing about my illness has been part of my grieving process and has helped me accept what is and let go of what was. And yet I’m constantly being reminded that the grieving process is never linear, and I find myself these days revisiting the stages of grief that I thought I was done visiting.

Holding on to the past keeps me stuck in my suffering. Writing has always been my therapeutic release. Lately, I have been writing just for me, but now I feel called to share it because I hope my story may help others in their chronic illness journey, but also because selfishly I need to share it for my own healing.

***

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This is the first picture I took of the regimen of pills I was first prescribed bc I’m weird like that and like to document things. :p This photo was taken in Sept. 2017. Since then, my medication has morphed into four different medications totaling close to 3,000 mg a day. 

Every new diagnosis comes with grief—a loss of health, a loss of normalcy, frustration, anger, fear, anxiety, sadness. Just when my health reaches a period of stability, it seems something else is positioned in the wings, waiting to reveal itself. Chronic illness has the worst timing.

Barely a few weeks into my first year of grad school, I was diagnosed with Mycobacterium avium intracellulare, or MAI, a rare and serious lung infection. MAI is an atypical nontuberculosis germ that lives in the environment. It is not contagious. However, it is difficult to treat because the bacteria is slow-growing and thus it takes longer to eradicate. Treatment is further complicated if the infection has formed in the cavity of the lung, making it difficult for the medicine to reach the infection, and putting a patient at higher risk of permanent lung damage. It is a lifetime disease with a 40 percent reinfection rate, which is a high and sobering statistic. I, unfortunately, contracted the cavitary type. This also means that for the past year, I’ve been on a regimen of nearly 3,000 mg of antibiotics daily—three different oral medications and one inhaled. In addition, I take eight different supplements daily to counteract the effects of my drugs and my disease.

My MAI diagnosis in September 2017 marked my fourth confirmed lung disease at age 37. Living with this disease in addition to three previously diagnosed lung diseases, one of which is in remission, has been an exhausting and tumultuous journey that has turned my life and my family’s life upside down. Having lung disease often feels like having the flu—you lose your appetite, your muscle aches, your body feels weak and tired. And one of the most frustrating parts is that you never know when it’s going to strike, and you have to spend the weekend in bed.

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Nurse Molly at the ready when I am not feeling well. 

***

My health history is like a domino effect. Nothing lives in isolation. One disease breeds another disease breeds another disease. Between 2011 and 2017, I had a few periods where my health felt stable. But every day I lived in constant fear that I’d have a flare up or some new and rare illness would surface. That anxiety has never left me.

“You can feel the pain, but suffering is when you want it to be different, when you want to be a horse instead of a donkey, an éclair instead of a slice of bread. Suffering is when you want the pain to stop,” writes Natalie Goldberg in “Old Friend From Far Away,” a beloved book I often find myself returning to. …

I want to be the horse. …

I want to be the éclair. …

***

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Desperately seeking Atticus

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I believe her. I will always believe her.

I need your help. I need your help to get through the next couple of days. Probably longer. Probably a lot longer. It’s as simple as that. And I promise to help you, too. The faux FBI investigation of Brett Kavanaugh is “completed”, and he will most certainly be confirmed by the Republican majority in the Senate. And after we scream and rant and weep, we will desperately try to hang on to everything we thought we knew about truth and justice and…kindness.

Kavanaugh’s confirmation was perhaps inevitable, but I had a flicker of hope after Dr. Ford’s wrenchingly raw testimony last Thursday that maybe, just maybe, this seminal moment in our nation’s history would not be viewed in only red and blue lenses. Truth has a crystalline quality – it makes everything more clearly apparent.

That faint hope was decimated Tuesday night when I saw the president of the United States cruelly mock Dr. Ford’s testimony in front of a frothing white crowd who laughed and applauded his unhinged performance. Every time I saw the clip, I could feel my ears flush with white-hot rage. RAGE. What do you do with rage? Where do you put it, so you can kiss your wife goodnight and go to sleep? Sleep. I try to remember what that feels like – a good night’s sleep. Tylenol PM helped me remember on Tuesday night.

Yes, even my sleep aids are blue.

When I woke up Wednesday morning, my rage was gone, vanquished in the dark of night and replaced by a paralyzing hopelessness. My legs felt as heavy as my heart as I tried to start moving through my day. I felt trapped – caged in by despair. I started a dozen tasks and abandoned them all. I finally just sat down in the reading chair in my home office and cried. Not an ugly cry – Lord knows I’m capable of that – but a cry of helplessness. I just did not know what to do to make it – anything – better.

And then the damnedest thing happened – I was resurrected by a post by a friend on Facebook. Okay, I know that sounds a little like a Hallmark movie, but it’s the truth. My friend Kristin lives in the DC area and founded an innovative fundraising company that supports some outstanding non-profit organizations. She’s a chronic do-gooder in her professional and personal life and she’s a smart cookie, too, so I try to pay attention to what she’s saying. This is what she posted yesterday morning:

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Yes, it was Facebook, but it was a lifeline to me. I immediately scanned through my inventory of postcards. Sidebar: My dear Aunt Phyllis sent me a postcard from every place she every traveled and it instilled in me a great love of  handwritten correspondence. I found one that seemed like a good fit and wrote my brief message to Dr. Ford. And I felt better. No, I felt good! And I got to thinking about what Kristin wrote – “to counteract every act of hate with an act of kindness and support.”

This sounded like a feasible plan to me, folks, so I reposted Kristin’s post on my Facebook and Instagram accounts and the posts went moderately viral – at least by non-Kardashian standards. As I write this, almost 500 people have “liked” or commented on the IG post and that makes me feel a lot less helpless than I did yesterday morning.

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And it wasn’t just Kristin. My friend Jimmy is an addiction counselor in long-term recovery. He is honest and open about his journey and I have great respect for him. Yesterday morning he posted this message:

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Followed a bit later by this one:

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Jimmy got some very thoughtful responses including these:

Mr. Rogers had the best advice for trouble times. Always look for the helpers. You will find them all around you and friends that care and people with good hearts. Look in the mirror to start with. We are not alone.

If we don’t transform our pain we will most certainly transmit it. I personally take comfort in the certainty that all things change… The best way to find yourself again is to lose yourself in the service of others.

Take a break and watch Mean Girls – it’s October 3rd! 

Okay, that last one just made me laugh and I thought you could use one, too.

Last night, Jimmy posted the Tiny Buddha meme below and it made my heart sing. That was about all I did yesterday, too, but it was enough.

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#goals

This morning, it was my dear friend Jeff who gave me some hope. I adore Jeff but he would be the first to admit that at times, he can be a crusty curmudgeon and doomsayer. And then he’ll surprise you with a post that’s so optimistic and inspiring that you can almost hear a choir singing. He did it again today. He heard historian Doris Kearns Goodwin on the radio on his long commute into work this morning. She was addressing the great division in our country – liking it to the Civil War. Goodwin painted a pretty grim picture of what’s going on and said that we need a figure to rise above the division and bring us back to the central idea that we all want what’s best for our country.

I’m sure dear Doris would really appreciate Jeff’s summation of her thoughts and would smile at his post:

Things are going to get far worse and I think the chances are high that they’ll never get better. Even so, I will not let these dark days dampen my enthusiasm for the election in November. All we can do is continue to fight and hope that a hero, regardless of if the cape he or she wears is red or blue, emerges from the current dumpster fire and saves us from the abyss.

Jeff is right. All we can do is continue to fight and hope. We are the ones who must save each other. Yes, by all means VOTE and help get out the vote and drive people to vote and ALL of that, but also – be kind. I love Michelle Obama, but I’m not espousing her “When they go low, we go high” mantra – I’m just not that good and I will sometimes still have to bitch slap Lindsey Graham on Twitter, but I can commit to not letting those who do not believe the way I do – in the things that I hold most dear – diminish me. I cannot let my own rage diminish me.

If you’re not familiar with the author and activist Glennon Doyle, you should be. She has been a balm for me of late on social media with her wise words and truth-telling. Today she posted a passage from To Kill A Mockingbird that I have printed out and put on the bulletin board in my office. I will read it over and over again during the next few days, months, however long it takes…

Atticus is trying to explain to his son, Jem, how someone can do the right thing and still lose. Here’s the passage:

“I wanted you to see what real courage is, instead of getting the idea that courage is a man with a gun in his hand. It’s when you know you are licked before you begin but you begin anyway and you see it through no matter what. You rarely win, but sometimes you do.”

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Damn. Where is a good Supreme Court nominee when you need one?

We will see this through the way we always have – together.

And I think we will freaking rock a cape. And it might even be seersucker.

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One size does not fit all.

 

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What she said.

Supreme rage

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Dr. Christine Blasey Ford, Truth Teller.

I haven’t felt this gutted since the late hours of November 8, 2016. I watched every minute of the Senate Judiciary Committee hearing yesterday. I had to see it for myself and I will never forget some of the images.

I started crying as soon as I saw Dr. Christine Blasey Ford sit down at the hearing table. She looked completely and justifiably terrified. I swear I didn’t breathe for the first few minutes of her opening statement. The raw gravity of the moment was palpable. I wanted to puke. I don’t know how she didn’t.

Dr. Ford was genuine and refreshingly unrehearsed and the rarest of all things – non-political. She came not to destroy Judge Brett Kavanaugh, but to tell her story – to be heard – because she felt it was her civic duty. And tell her story she did. It was excruciating to hear her recount the laughter she heard as Kavanaugh held her down and put his hand over her mouth.

There’s not a woman I know who hasn’t had that hand over her mouth – sure, maybe some of them not literally, but figuratively time after time after time. Me, too. Me, too. Me, too.

I won’t even address the absurdity of those questioning Dr. Ford’s veracity except to say that NO ONE would blow up their own precious life to share such a shattering story if it were not true. The End.

When she finished her testimony, I actually stood up (alone) in front of my TV and applauded through my tears. This unassuming professor and mother of two had told her truth with poise and grace and staggering courage. And for a couple of hours – sweet, sweet hours – I truly thought that it would matter – that she would be heard. What a glorious feeling that was. Today, it feels like a gauzy memory from long ago.

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Angry. White. Male. Privilege.

Kavanaugh was up next and he took a page from the oldest playbook of them all. See: Adam in Genesis. The man as victim. He ranted and screamed and attacked those who would dare question his path to his promised prize. He was loud and rude and tried to bully the Democratic women on the committee. If a woman candidate – for dog catcher – had shown such temperament, she would have been dismissed and destroyed. But guess what? Kavanaugh’s foaming rage worked like a charm and this afternoon, the Judiciary Committee will vote and advance his nomination to the floor.

I feel that heavy hand on my mouth this morning – trying to suppress my absolute rage. I’m just too old for this shit. I am over it. OVER. IT.

One of the most heartbreaking parts of yesterday was reading so many painful stories of sexual assault posted on social media – some by friends that I was not aware of – others by strangers. All of them gutting. I was so moved that those people felt empowered by Dr. Ford to share their stories – some for the very first time. I thought about them last night when I went to bed with the sense of dread over Kavanaugh’s inevitable approval.

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The same old story.

I’m lucky. I don’t have such a story to share. I have never been sexually assaulted but I have been professionally assaulted by some angry white men who felt threatened by my power. Those men took a job I loved away from me because one man yelled louder than me and played the victim card. It worked for him in spades and I wasn’t even given the opportunity to speak my truth. I was never heard, and I can still feel that hand on my mouth.

I know how difficult it has been to put my experience in a place where it doesn’t interfere with my everyday life and I cannot fathom how you do that when the assault is physical and violent and sexual. It must be a never-ending nightmare. I thought about you all when I couldn’t sleep last night. I worry about you today.

So, what’s the answer? We vote? Yep. Done that. We march? Yep. Done that. Yell louder? Well, that might just be a start. I follow author and activist Glennon Doyle on social media and she has, as always, been a righteous prophet for many of us. This morning she tweeted:

If a woman tells her story and no one in her government hears her – does her government exist at all? No. Women have no government, so we will become ungovernable. Way to radicalize women, @GOP. We will now become strategically and relentlessly disobedient.

I’m ready and not waiting.

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A Reckoning is coming. You’ve been warned.

 

 

 

 

One nation under carbs

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Last week was a terrible, horrible, no good, very bad week. If a root canal and the Norovirus got together and produced an offspring – it would look like last week. I can make some tepid jokes about it now, but there was nothing funny about last week – it was the worst many of us had felt since the wee early hours of November 9, 2016.

While we were still reeling from the coverage of immigrant children being separated from their parents and held in cages, came the staggeringly sober news that Justice Anthony Kennedy was resigning from the Supreme Court. When I got the BREAKING NEWS alert on my phone I prayed it really was FAKE NEWS.

It felt like the time years ago when I hit the wrong button on my first iPhone and accidentally did a factory reset – losing all my never backed up photos and contacts. That slow motion feeling of not being in control mixed with deep sadness for what might be permanently erased.

I don’t care if we knew it “might” be coming. I’m a proud reality denier and I had put that particular item far down on my To Worry About List. Once I caught my breath, I cried. I did. It was just too much to process after EVERYTHING else. Fortunately, I was at home by myself, so my cat was the only eyewitness to my breakdown and her silence can be bought with a few extra treats.

I’ve spent much of my adult life working for LGBT civil rights – including devoting a sizable chunk of my professional life to advocating for people living with AIDS. I suddenly saw the past 25 years or so like a montage – all the meetings, all the marches, all the fundraising, all the stinging defeats, all the friends – some dead now – all the years of incremental progress – then the rush of huge advancements. I could feel it all slipping through my hands like sand. I felt hopeless.

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My guy, Jeff. I guess you could say he wears his heart on his T-shirt.

And then my phone started blowing up. First one in was my gay boyfriend, Jeff. We’ve said for years that we would be the perfect couple except for the little detail of sexual orientation. He’s the gay man version of me – cranky with a wicked sense of humor. I adore him, and we have shared many hours stuffing envelopes, canvassing neighborhoods, hosting fundraisers and kvetching about the current state of affairs. Side note: We narrowly avoided a tragic accident years ago while delivering a Porta Potty to a special event. It almost tipped over in Jeff’s truck while we were placing it in a friend’s backyard. If the Porta Potty hadn’t crushed us to death, we would have most certainly died from humiliation.

Jeff basically expressed the same things I was feeling – that everything we had worked so long and hard for could be eradicated as the balance of the Court shifted. And then he texted a few minutes later to say he had gone to the men’s room to throw up. The thought of losing some of your civil rights can make you toss your lunch. My crying didn’t seem so bad then. Jeff always makes me feel better.

Then I got a Facebook message from my friend, Bo, in Wilmington. We served on the

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Bo is rather shy and retiring. Said no one ever.

board of Equality NC for several years and have stayed in touch. He wrote, “I share your fear and I want to walk with you in our next right thing. You taught me that all is not lost. We have to keep teaching each other.” Damn. I was crying again – only this time the tears were sweeter.

And then I got a phone call – old school – from my mentor/Jewish mother/friend/sage, Phyllis, in DC. I worked for her years ago and we became family. She and her husband hosted my wedding to my dear wife in 2014. Phyllis is fearless and is always the first to call – in good times and in tough times. When I answered the phone, I said, “Please tell me we are moving to Norway.” She said, “Addy, I feel like someone in my family has died.” Just hearing her voice made me feel safer.

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Phyllis always calls. Always.

 

I turned off the TV. I couldn’t bear to hear the talking heads start to circle the body like vultures, speculating on who Trump would select. I’ve barely watched any news since then. Thank God for BBC crime dramas – I find them oddly comforting. Nothing like a good grisly murder or two set against a gray London backdrop to lift your spirits.

My wife and I had dinner plans that evening with a friend from our church. She’s a delightful and smart retired woman who has hosted us for supper in her home a few times. I’m a vegetarian and she’s kind enough to even prepare some fabulous tofu dishes for us – nobody ever does that. We usually bring a bottle of wine – that night we brought two. Just in case.

We had a surprisingly lovely evening sitting around her dining room table as the sun went down. I love that time of day and the light cast a peaceful balm over us as we talked. We came home feeling a bit better.

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Breaking bread with a kindred spirit was just what we needed.

I had one more Facebook message waiting for me – from my good friend Megan. We worked together for years around HIV/AIDS issues and she and her husband are two people who always seem to be on the right – as in fair and just – side of everything. She oozes integrity and her support has always meant a great deal to me. She wrote, “Holding you and many others in my heart… don’t lose hope.” I felt like I had a logjam of life rafts available when I finally fell into bed that night.

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This is a typical Facebook post from Megan. All the feels.

But do you want to know what lifted my spirits the most amidst the angst of last week? I could give you a gazillion guesses, and you wouldn’t come close. Ready? A chocolate éclair. And, no, I wasn’t self-medicating. It wasn’t even my éclair. On Friday, I met my bestie, Carla, at a local coffee shop. Carla is in grad school and we’ve been taking advantage of her summer off by meeting every other Friday for a three-hour coffee date. Seriously. We always meet at 9 AM and we’re never done before noon. That’s a lot of coffee and conversation.

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Coffee with Carla. The best part of summer.

Our croissants and cappuccinos were long gone by the time a smiling young Asian man put down his paper plate on the table right next to us. We both started staring – lusting really – at the scrumptious looking chocolate éclair on his plate. Clearly, we were not as smooth about it as we thought we were because he looked at us sweetly and said, “Would you like a bite?” We both giggled with embarrassment and I think I fumbled a bit and said, “Oh, no, sorry, that éclair just looks so good.”

Carla got up to use the restroom and our new pal returned to his table with his coffee and settled in to enjoy his treat. He caught my eye as he held his plastic fork and knife in his hands and said, “Really, are you sure you wouldn’t like to try this?” Seriously, I really DID want to, but honestly, I could feel my throat closing with emotion. There was something so incredibly moving about his simple but genuine kindness in that moment. I wanted to hug him, but I was afraid he might think I was going to nab that big ass éclair.

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The object of our affection.

Carla returned to our table and as we headed towards the door, I told him that we would not have been so generous with our éclairs and he laughed and told us to have a nice day. I could almost hear Won’t You Be My Neighbor playing in the background.

Let’s make the most of this beautiful day

Since we’re together, might as well say

Would you be my, could you be my

Won’t you be my neighbor?

I know it’s a gross simplification to imply that good pastries make good neighbors. I just know that a random exchange with a perfect stranger in my local coffee shop made me feel like somehow, we will make it through to the other side of this darkness. Together.

When I got home I reread the last part of Megan’s message:

“You just need to know you’re not alone in this. I come from a perspective, forged from coming of age in the 70’s, that we’re smart enough and tough enough to outmaneuver the bastards if we just work together.”

Mr. Rogers couldn’t have said it any better himself.

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Can you say outmaneuver the bastards?

 

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Carbs will keep us together.

 

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This tweet saved me last Wednesday. Long live Ruth!

 

 

Tender age

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In my mother’s arms.

Once when I was six years old, I thought I would never see my mother again. It was a feeling that only lasted for about 30 minutes, but even after all these years later, it’s still a memory that can make my throat close.

I can remember it as clearly as other historically upsetting events in my life – the Kennedy assassination, the Challenger explosion, and Donald Trump’s election. Okay, maybe I’m being a little dramatic, but it is a memory that is firmly etched in my grownup brain.

It was my first day of first grade in Petersburg, VA and it was my maiden voyage on a school bus. My elementary school was near Fort Lee – a large Army base – and because of an influx of students that year, we had to go to school in shifts. I was assigned the morning shift which made for a dark pickup at 7:00 AM and dismissal before lunch.

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It looks a lot bigger when you’re only 42 inches tall.

I recall being nervous about riding the bus for the first time, but my mom stood with me in the dark and told me she would have my favorite lunch – tomato soup and grilled cheese – waiting for me when the bus dropped me back off after school. To this day, a grilled cheese can still serve as an incentive for me.

So, I climbed up those big steps on to the bus clutching my Beany and Cecil book bag and was greeted by the driver – a burly man who already seemed a little grouchy for so early in the day. I quickly found an open aisle seat and steeled myself for the ride. I nervously scanned the other rows and realized that I was one of the youngest kids on the bus. A lot of them seemed to already know each other, but I kept my game face on. I was, as my mother had reminded me – a big girl now.

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Beany and Cecil were as big as SpongeBob Squarepants in their day. Really.

The school day was unremarkable. My teacher, Mrs. Westinghouse, was at least 78 years old – or so she appeared to me. She was rather portly and pretty no-nonsense which is perhaps the most strategic approach for facing a room of 30 six-year-olds. We read and had a milk break. I never enjoyed the milk break – the milk always seemed to be curiously warm. A few months later, I would throw-up during milk break, forever unendearing me to Mrs. Westinghouse.

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It was never meant to be served at room temperature!

The morning passed quickly and it was time to board the bus for the trip home. Once we got on the road, burly bus driver told us he was learning the route for the new school year and that we should just shout out in advance of our house so he would know when to stop.

I could feel my tiny palms start to sweat. Do you remember how loud your school bus was? The thought of yelling over that thunderous noise in front of a bunch of older kids terrified me. I decided I would just see how other kids did it and copy them – only they were almost all older kids so the bus driver already knew where they lived.

I practiced silently in my seat and as we neared my street, my heart began to race. Then the countdown began – 30 seconds, 10 seconds, five seconds… I choked. Actually, I froze. Nothing came out of my mouth as we sailed by my house. Now before you judge my mother (that’s clearly my job) for not being at the bus stop waiting for me, you need to know that she was inside the house tending to my three-year-old brother at the time. And she was getting that grilled cheese ready, too.

My heart sank. Now what? I thought about walking up to the front of the bus and telling the bus driver he passed my house but, let’s face it – that was not going to happen. I’d like to tell you that I did some masterful six-year-old problem solving but the truth is – I just sat there quietly – knowing that not only had I ruined my academic career on my first day of first grade, but that I would never get home and see my mom.

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The wheels on my first bus came off pretty quickly.

The last kid besides me got off the bus and the driver looked back at me quizzically and said, “Where do you live?” Gulp. I did not know my address. Again – no judging – it was a simpler time. My heart was pounding so hard and I wondered what would happen next. The bus driver was aggravated, and I wanted to cry, but I figured that would aggravate him more. I just wanted my mom – even more than that grilled cheese – so I swallowed those hot tears.

The bus driver sighed and told me he was taking me back to school to see if someone in the office knew where I lived. That sounded like a good plan to me, but I still felt so alone and scared. We got back to the school and I followed him into the office and he presented me to the secretary like I was a juvenile delinquent. “She doesn’t know where she lives,” he grumbled to the seemingly nice lady behind the desk. “What’s your name, dear?” she asked sweetly. I did know my name – so I had that going for me.

She pulled out a big notebook and turned a few pages and came up with my address. I was the only Addison Ore in the directory. “Confederacy Drive,” she told the bus driver.  (Yes, Petersburg was big on Civil War references.) He sighed and told me to get back on the bus. That was way before I knew about The Walk of Shame, but I’m sure I did the elementary school version. I got back on the bus and sat in the front row by the window. I was not missing my stop this time.

By now, my mother was getting worried – knowing I should have been home by now. This was long before cell phones. Little did I know that she was standing by the end of our drive with my brother in tow waiting anxiously for me to arrive. The bus driver slowed to a stop and I stood up and said, “This is MY house.” Okay, a little late, but it’s always good to stick the landing.

I came flying down those giant steps and fell into my mother’s arms. All was right with my world again. We walked down the driveway to the side door off the carport and into the kitchen where there on my little table was my lunch – steam still rising from the tomato soup.

I was home.

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Waiting for me.

All these years later, it may read as a silly story, but I was reminded of it again this week as I watched in sheer horror the images of immigrant children being separated from their parents – some for days and months – some perhaps forever. How can this be happening? I know how. We all know how. This isn’t a political post. It’s a human post. The question now is how we fix it. We must fix it.

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America the Beautiful. Not so great.

Over 50 some years ago, I was separated from my mother for half and hour and the memory of that fear can still quicken my pulse. I can’t imagine – I don’t want to imagine – the kind of fear those children are experiencing now. I worry, as most of us do, if they will ever get back home – which for most of them means their mother or father – not a physical place any longer.

Everybody Lost Somebody is a haunting song by Jack Antonoff of Bleachers. He wrote it about his younger sister Sarah, who died of brain cancer several years ago. The song is about death but it’s also about finding our way home.  I’ve been listening to it a lot this week and thinking that for these kids, this separation must feel like death. Click here to listen.

I think pain is waiting alone at the corner

Tryna get myself back home, yeah

Looking like everybody

Knowing everybody lost somebody

I’m standing here in the cold and

I gotta get myself back home soon

Looking like everybody

Knowing everybody lost somebody

Everybody lost somebody

Everybody lost somebody

I don’t have the answers. Most days I simply rant and rave at the cruel absurdity of what’s going on in our country courtesy of the current administration, but this is different. I don’t have kids. I never really wanted kids. I’m the person that doesn’t want to be seated anywhere near kids in a restaurant. But I have cried for these kids and I know many of you have, too. Hell, even Rachel Maddow cried.

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This is us.

A grilled cheese isn’t going to fix this, but we gotta get them home soon – even if they don’t have an address.

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“For I was hungry, and you gave me something to eat; I was thirsty, and you gave me something to drink; I was a stranger, and you invited me in.” Matthew 25:35  Photo: cnbc.com