The Day the Worst Happened. Also: The Day I Learned to Cope.

Obviously, no one who was alive on this day 17 years ago will ever forget it. Even at the time, we all knew this was history in the making. There was a new permanent demarcation of time: pre-9/11 and post-9/11. For my generation, this was our first experience with the likes of D-Day, or Kennedy or King being assassinated. It was the day that we will remember for the rest of our lives where we were when we first heard that the towers had been hit, and how almost unnaturally blue and cloudless the skies were, and how strange it was to look up without seeing a single plane in the air.

But that’s not what this is about.

In all the accounts I read every year, one of the common themes is one of fear in the weeks following, and the feeling that nothing was safe anymore.

It’s notable to me to read these sentiments. I understand them. They make sense. In the aftermath of a massive terrorist attack, fear is a perfectly reasonable response.

But that was not my experience.

I was always anxious, growing up. Everything unknown was cause for anxiety. It would pool in the bottom of my gut on the way to school every morning: what work would I be overwhelmed by? What nasty things would the mean girls come up with to say? What awkward way would I stick my foot in my mouth?

I think I was about 11 when I had my first real panic attack. I had taken a CPR course, and became convinced that I was going to have a heart attack. In my pre-teens. With no history of cardiac issues. Later, it was that someone was breaking into the house. Every night. There was an entire summer that I mostly only slept during the day, because it was safer.

I recognized how irrational my fears were, so I didn’t tell anyone about them. I was also afraid of being teased about them, and having them dismissed as ridiculous. Especially since I already knew they were ridiculous.

This continued to manifest throughout my high school and college years in various ways. I was particularly terrified of diseases, because there was little controlling them. I took urban legends about intentional HIV infections at face value, and news reports about Ebola and flesh-eating bacteria kept me up at night. The one fear I did talk about was my fear of vomiting, only because it was hard to hide the hyperventilating when someone was sick around me.

It also seemed like a relatively reasonable fear. Nobody likes being sick.

My anxiety also manifested over approaching milestones and assignments I felt unprepared for, such as getting my driver’s license and applying for college and financial aid.

What I have come to realize in the last twenty-some odd years is that the anticipation was always worse than the actual event. When I had to take care of a sick and vomiting child, I dealt with it. When I got sick myself, I got through it. When I had to take my driver’s test, I studied for it and did well. Applying for college was far simpler than I’d expected (and they were paper applications back then!).

So when I woke up on 9/11/01, having skipped my first class of the day in favor of sleeping in, and turned on my radio to hear the president speaking gravely of a national tragedy, and then ran out to my living room to turn on the TV and watch the footage of the planes hitting the towers, and the towers collapsing, a strange sense of calm came over me.

When I went to class that day and we spent the hour processing what had happened and what might be yet to come, I felt a sense of cool detachment from the discussion.

When people I worked with panicked about the thought of biological weapons being released from air ducts in local malls and schools over the following weeks, I was the composed voice of reason pointing out that our small college town was unlikely to be a terrorist target.

It wasn’t that I was unmoved by the lives lost in those planes and buildings, or unaffected by the horrifying footage of people jumping from the towers to avoid a slower death by suffocation, starvation, or fire. I understood the gravity of what had happened. I was well aware that all of our lives would be forever changed by what had happened. I was as horrified and grief-stricken as anyone else about the lives lost, and the trauma of the first responders. I’m still angry about how we have failed those first responders who worked tirelessly to find survivors and recover remains without a single thought for their own safety.

But what I finally understood with perfect clarity 17 years ago today was that any sense of safety we had up to the moment the first plane hit was an illusion.

One of the worst possible things I could imagine happening had happened.

And all of us who are still here today survived it.

And to live through that made anything else I felt anxious about seem small and petty. I understood, on that day, that whether or not a mall in Lexington, KY would have anthrax spores released through the vents on a day I was there was completely outside my control – so why waste my energy freaking out about it?

I would be lying if I said I never got anxious anymore.

But that was the day I stopped letting fear rule me.

We’re never actually safe, but in order to live our lives, we have to pretend we don’t know that. But if the worst happens, and we survive it?

Then we pick up the pieces and carry on. It’s the least we can do for those who didn’t make it.


Urban Spelunking

Back when we were young enough to have disposable incomes and time, we would wander periodically through the part of town filled with little shops and cafes and restaurants serving various ethnic cuisines that were not found in the surrounding suburbs we grew up in. Some of the shops – especially the ones that had more illicit products ranging from elaborate glass bongs to flavored glow-in-the-dark condoms – were well established, and being old enough to enter them was a rite of passage. Others came and went, most selling some mix of semi-precious gemstone jewelry and bohemian chic clothing with anime patterned vinyl wallets and used CDs and tarot card decks. There was always enough to look at to make the trip worth passing the day, and always the chance of finding some ring or bracelet I couldn’t live without until I got tired of wearing it.

That day was the first time I’d ever noticed the pet shop, and I never could find it again when I went back. Of course we went in when we saw the puppies in the window, because puppies. The shop was none too clean, but seemed legitimate enough; name brand pet food lined the walls. The puppies ran free through the store, apparently just a litter or two of non-descript mutts. There were birds in cages and hamsters and gerbils in aquariums throughout, but the puppies were the highlight, or so I thought before noticing the entrance to a black metal spiral staircase leading down underneath the store. I peered curiously over the railing, trying to get some sense of what was below. The shopkeeper noticed. “You can go down there,” he told me.

Briefly, I had visions of my face on milk cartons; this was how horror movies began. But the shopkeeper seemed nice enough, and my curiosity won out. We stepped carefully down the metal stairs, and entered a place that didn’t seem possible. Whatever I might have expected, it wasn’t this.

It was dark and cool and a little musty, and smelled of water and shale. Streams ran in a winding pattern through the stone floor, filled with brightly colored fish that also filled the backlit tanks set into the stone walls. The space stretched out the full length of the building. We wandered through what I could only think of as a cave, watching the fish drift lazily through the streams and dart around the tanks. It was quiet, worlds away from the bustling city and rowdy puppies. Just the cave, the water, and the orange and blue and purple fish, and our own thoughts and breathy exclamations of wonder.

I emerged at the top of the spiral staircase back into the brightly lit store filled with rough-and-tumble puppies feeling changed by what I had seen. “Pretty cool, huh?” the shopkeeper asked, and we agreed, wide-eyed.

Months later when I next drove past the spot where I remembered the pet shop to be, the storefront was dark and appeared empty. I’ve long since forgotten where exactly it was. But I still wonder if the cave is still there, and if someone is taking care of the fish.

Or did I just imagine the whole thing?

Adventures in Medical Care

I was hospitalized last week with a kidney infection that I initially mistook for a mild UTI that I could treat from home by staying better hydrated. Even when I woke up last Sunday with a fever and in so much pain that I couldn’t stand up straight, I figured that I would go to urgent care, get some antibiotics, and go home. Even when the nurse practitioner said they couldn’t rule out kidney stones or other infections, and mildly suggested I would probably be better off going to the ER, I said I thought I could tough out the pain at home for a day or two to wait and see. It was only when the nurse practitioner point blank told me, “I can’t force you, but you need to go to the ER,” that I finally acquiesced.

I’ve always had some mild hypochondriacal tendencies, for which I compensate by making a conscious effort not to overreact. This is necessary with a chronic illness, when I have to guess whether my left arm and shoulder pain is arthritis or a heart attack. I generally play the odds and assume that it’s arthritis, which is all well and good for now, but might be a problem if I ever actually do have a heart attack. It doesn’t help that I have a relatively high pain threshold. I totally could have toughed out the pain last Sunday until it killed me. Literally.

The ER doctor decided to admit me to administer IV antibiotics and monitor a spot they’d incidentally found on my liver during the CT scan to rule out kidney stones or appendicitis. They were concerned about the severity of the infection, and the possibility of an abscess on my liver, both of which had the potential to go septic, given my compromised immune system.

Because I have a compromised immune system.

When the hospital transport workers took me from the ER to my new room, I commented to my family that this would be the first time I’d stayed overnight in the hospital since I was 8 years old, when I’d had surgery on my Achilles tendons.

What I didn’t say, but was in the back of my head the whole time I was in that room, was that this probably wouldn’t be my last overnight hospitalization.

Up to that point, I had been able to delude myself into thinking that, aside from the chronic pain and being slightly more likely to catch whatever might be going around, I could lead a relatively normal life. Being hospitalized for what I’d believed, just a day earlier, only required some extra hydration threw me into a tailspin.

I had a follow up appointment with my primary care doctor on Friday, to make sure I was still recovering well with the antibiotics. With him, for the first time, I voiced my fears: “Is this just the beginning? What the rest of my life is going to be like?”

He started to reassure me, and I reminded him that I’d been a frequent flier in his office in the last few months, most recently for shingles. He paused, and smiled. “You recovered really well from the shingles,” he pointed out. Then he admitted, “The meds could have played a part in you getting shingles.”

He told me that he didn’t want to become a hypochondriac, but his threshold for treatment with me, even for something as simple as an upper respiratory infection, was going to be a lot lower than it would be for a normal person. That he would be more likely to prescribe me antibiotics while taking a wait-and-see approach with anyone else, because my body might not be able to fight it off on its own.

That I couldn’t wait before coming in for a mild UTI, because it was more likely to develop into a severe kidney infection.

Because I have a compromised immune system.

So maybe I can avoid being hospitalized again and again if I go to the doctor right away. But I need to go to the doctor right away. No more playing the odds.

And just because I could tough out the pain, it doesn’t mean that I should.

High Hopes

This time of year can be hard for me. It’s when the reminders of the life I thought I would have come back to the surface, and tug at the thread that I’ve gotten better at tucking back in.

It’s hard to say where the beginning of the destruction of that life actually fell. Was it the day I lost my job? The day I finally got diagnosed? The day of my first major flare? The day I realized it wasn’t going to go away? Those were all a progression, a slide into irrevocable, ugly change. I didn’t recognize at the time how dramatically this disease was going to fuck everything up.

But the reminders of the onset of illness aren’t the hardest part.

The hardest part is being reminded of the hope that came before it.

Looking back now, I’m startled by how much time has passed. It’s been seven years since that awful summer that ended life as I knew it, and the future as I planned it. I’m nearing the end of my 30s. I have no idea what the future holds, but I do know the one thing I really want seems less attainable every day, and I have no idea how to make the next 30 or so years feel worthwhile without it. I don’t know how that can ever be a future I want.

I feel like the last seven years have been a way station that I’ve been trapped in, waiting to have a real life again. And a real life feels unattainable to me now. I can’t work a full week without needing to sleep at least most of one day to recover. I am barely able to stay on top of everything I need to do. I get through the day to day with distractions – work, Netflix, cuddling with my pets. And sleep. Whenever I can.

It’s just surviving, though.

I don’t know if I’ll ever be able to thrive again.

What We Remember When We Are Grown

About a year ago, I attended a “coffee and conversation” event at my neighborhood coffee shop. I thought it was a fantastic idea – the basis of which was to allow people in the community to get to know one another. The initial conversation prompt was to come prepared to talk about your favorite childhood memory.

I have a lot of good childhood memories, so it troubled me a bit that the memory I kept coming back to, and ended up sharing, was one with my paternal grandfather. Pawpaw was a zookeeper at the Cincinnati Zoo, and as a result, many of the zoo trips in my first 5 years involved behind-the-scenes animal encounters and sneak peaks of new exhibits. The memory I shared was of one particular visit when I was about 4, which included several relatives on my mother’s side of the family, two of which were older cousins who I was desperate to impress, and who also were dismissive of me, and, being both older and bigger, often pushed ahead of me and didn’t want to include me. During that visit, my grandpa took us through an upcoming addition to the children’s zoo, which included a huge indoor play area with climbing maze tunnels and slides. It was like a McDonald’s playland on crack. (It is, sadly, no longer there, I would presume because parents complained about being unable to retrieve their children from the child-sized tunnels.) As we approached the entrance, my cousins, of course, tried to push ahead of me, but Pawpaw stopped us at the door and beckoned me forward. “My granddaughter gets to go in first,” he announced, in a tone that was at once proud of me and reproachful of my invading cousins. I felt so thrilled and special, and I walked into that play area ahead of the big kids with my head held high, as mighty and regal as any queen.

An excellent and enviable childhood memory, most would agree. So why, you might ask, did it trouble me that this was the memory I kept circling back to the night of the coffee and conversation event?

Pawpaw was an alcoholic. It was a word that I didn’t learn until a year or so after that zoo trip, when he had an alcohol-fueled breakdown – on Christmas Eve, in front of me – that resulted in an extended psychiatric hospitalization. I remember visiting him once at the hospital. And from that point forward, he became an inconsistent presence in my life. Years sometimes passed without me seeing or hearing from him. Some of this was his choice. Some, I learned later, was because my parents, appropriately, limited his contact with their children when it was not safe for us to be around him. Pawpaw passed away from liver cancer in 1995, when I was 16. It took me 20 years to come to some kind of peace with my relationship with and memories of him.

My maternal grandfather, Boppy, on the other hand, was a consistent and loving presence in my life throughout both my childhood and adulthood. It was devastating to lose him in 2014. He was a rock of support for me and my entire family.

So it troubled me that not a single childhood memory with Boppy stood out with the same color as that day at the zoo when Pawpaw insisted that his granddaughter got to go first.

I thought about it a lot that night. And what I finally realized was that the reason that memory was so strong was the very fact that it was one of the few times in my life that I truly felt special to Pawpaw.

I never had any reason to doubt that I was special to Boppy.

I don’t mean this to be critical of Pawpaw. I recognize that addiction is a disease, and his disease was impacting his life well before he ever had children, let alone grandchildren. I loved him, and I still do. And I know that he loved me, too, but alcohol had too strong a hold on him for it to show much of the time. I can look back now and be grateful that I had those moments like that day at the zoo that allow me to know just how special I was to him.

And it’s not that I don’t have special memories with Boppy. I do – many of them – and their sheer number is part of the reason it’s so hard to zero in on one that stands out above the rest.

I’ve been thinking about this recently in terms of my relationship with my nieces, and how it is impacted by my arthritis. I get Facebook memories now of times that my shoulders were sore from carrying Chloe on them when she was 5 or 6, and of places we used to go together and things I was able to do with her that I’m not able to do with Bella or Charley. I’m only 39. I should be able to carry Charley on my shoulders, or take Bella to festivals. I feel like I miss out on so many opportunities to make memories with them now. I want to be the fun aunt, but instead I’m the one who has to stop to sit down every few minutes, and can’t go on the rides with them.

But that’s okay.

Because they may not remember everything we do together, and they may not think of me as the fun aunt, but they will know – always – that I am here for them.

And they will never doubt it for a moment.

The Bad Days

I am lying sleepless in bed because I slept most of the day. I could probably still fall asleep, regardless, but I don’t feel good about that.

I skipped a grill out hosted by my boss as a reward for a great week at my office to which I contributed – significantly – because I can barely walk right now.

I have my dog closed in the laundry room tonight, with the back door open to the fenced in yard so he can get out when he needs to, instead of in my bed with me, because it’s too hard to get up and down the steps to let him out when he needs to go.

I’m scheduled to work a four hour shift tomorrow. I haven’t been able to do laundry and have no idea if I even have anything clean to wear. I have no idea if walking will be any easier tomorrow. I may have to call in. Again.

I am not just out of spoons, my spoon account is severely overdrawn. I have no idea when the next deposit will be. I do know it won’t be enough. It’s never enough.

I went to my future sister-in-law’s bachelorette party on Friday. We went to the Oaks race at Churchill Downs. I had reservations about it from the beginning. Not about celebrating my brother’s upcoming wedding with his bride, who I adore. About walking. About sitting in flimsy folding chairs. About being there the whole day.

I wanted to be there. I just didn’t trust my body to cooperate.

I don’t even have the energy to go into the nightmare it was, almost from the beginning. I will say that I will never return to Churchill Downs. Their idea of disability accessibility is a complete fucking joke.

There were a lot of tears. Especially at the end of the day, when I genuinely wasn’t sure I’d make it back to the car.

I’m not even 40 yet. How is this my life?

How much worse is it going to get?