April is National Poetry Month. In honour of that, I’m digging through my archives and posting a series of poems I’ve written over the years.

I wear the smallest invisibility cloak.
I put it on
Whenever you look at me,
And I disappear.
Like when I left
To go run a marathon
Kitted out
In full bright regalia
And those bouncy Pippi braids I so love

Waving goodbye first thing
And toting the bag
Emblazoned with the name of the race
And you,
Blithely saying goodbye
Not noticing
Where I was off to.
Never realising that I’d gone.

I get smaller, too
Microscopic
I shrunk as you cut me from the frame
In those pictures of us
Skiing in Vermont
To use in your dating profile.
Or when you
Refused to be photographed with me
In the first place
If no evidence of us ever existed
Then no harm could ever be done.

But sometimes
It is cosier.
Insidious, almost.
Like the blanket I wear on your sofa.
Snuggled beside you
Like the whole world
Rests between your head
And my heart.
Isn’t this nice, I think
I feel your breathing and mine
I feel my chest lurch under the weight of you.

Between the beats
Your son calls
His face appears on your phone
Like a ghost or an angel
And you quickly rise
Hiding me from his view,
Invisible again.

(November, 2016)

SarahKatKim & I are to hosting Reverb throughout 2016 as a way to share writing prompts and providing a space for writers via our Facebook group. In December of each year, we host a prompt-a-day to provide structure and a way to close out the year.

White Elephant // What are the gifts you are looking forward to giving or hoping to receive?

Smplefy messaged me days before the NYC Marathon in early November and asked something like Are you sad that you’re not running? People had been asking me that all throughout late October and into November. People always ask me that. The year before, I had stood briefly in the middle of First Avenue as they’d cleaned up the Race and felt All the Feelings of angst and grief and failure. I had just had my knee reconstructed – there was no way I could have run even if I had wanted to – but the pile-up of injuries was breaking my heart and at the time, I had absolutely no idea what was causing my Personal Mess.

I had spent the Summer and Autumn trying to embrace my Ehlers Danlos Syndrome diagnosis; trying to say Yes to everything; however, this was a situation where I didn’t want to say Yes, but had to.

I’m sad, I admitted.

But that next day, I happened to check my New York Road Runners dashboard and realised I mistakenly hadn’t forfeited my marathon entry over the summer. I could’ve sworn I’d cancelled it around the time I had hip surgery; could’ve sworn I’d sworn off marathoning forever. But if I declined my entry for 2016, that would be The End – this year was the end of New York City Marathon deferrals. Historically, if you paid the fees, you could defer your entry in perpetuity. No more.

It was then that I sat with the heavy knowledge that I was physically healthy, largely untrained but in very good shape, and had a marathon entry.

The Friday before the NYC Marathon, I walked out of my office and went out to my colleagues. Do you guys think that I could, you know, run the marathon? I asked casually.

I was wondering if you were running, one of them said.

Have you been training? another one asked.

No, I wasn’t planning to run, and I haven’t been training. But I think I’m going to do it, I decided.

And that was that. I packed up my things and headed for the Javits Center to collect my race number. On the way over JRA called me (remember, I’m still a Phone Person so my friends actually call me on the phone as opposed to solely texting me).

What are you doing this weekend?

Saturday night, Paul and I are having dinner for our anniversary and Sunday I’m running the marathon.

Wait. What. 

Yes. I just decided. As in, I am at the Javits Center now. 

Does anyone else know? Are you sure about this? Do you want me to gather Team Merethon? Should we plan a party? 

I’m going to make a gametime decision on Sunday morning about whether I’m actually going to do it, but Yes. To everything. 

Oh dear.

And that was how I wound up running my final marathon.

I left on the morning of November 6th for a perfect, clear day and a slow race. I packed my bag and said goodbye to Paul, who never noticed I was leaving to run a marathon. I left the house wearing my 2011 Team Merethon shirt in honour of my friend Scott, who died by suicide a few years ago and who loved running; loved the team shirts. I stripped off my tearaway clothes at the start, left the shirt on top of the pile at Fort Wadsworth for Scott, a veteran himself, remembering the celebratory photos he and his wife would send me to cheer me on race mornings past.

Throughout the day, various friends figured out I was running, and came out to greet me on the course: Dorota and Michael at Mile 16 with signs; JRA, PB-BG and Lady H at Mile 20 with big cheers; RHJ at Mile 24 with a phone charger. I ran the slowest race of my life – a nearly a full hour and a half slower than my personal best – and arrived home to a house full of cheering friends and Thai food. I savoured every mile. I walked when I had to. I took on the Queensboro Bridge as a marathoner one last time. I put Harry Belafonte’s Jump in the Line as the “easter egg” on my playlist and it made me crack up when it came on.

I suppose there is some Big Takeaway or some Grand Life Lesson here. The gift I most wanted this year was to be strong enough and healthy enough to run my Last Marathon – to have the support of my friends and family to be able to do that. The real gift wasn’t the medal at the end – it was the truly unique experience of doing this in the first place; the unbelievable amount of support I got from everyone along the way. I got to say Yes to the New York City Marathon one last time, and I am forever grateful.

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Sarah, Kat, Kim & I are continuing to host Reverb through 2016 as a way to share writing prompts and providing a space for writers via our Facebook group. Here’s (a very late entry for) July’s prompt. 

July’s prompt // Freedom: What is freedom to you?  How do you celebrate freedom in your daily life?

We are in a Copenhagen bar talking about our brothers.

We have run two half marathons in two countries in two days and I am shocked that I have finished. I say that running is mostly mental for me – when I run, I think about music; my dog; kissing and being kissed; the sun setting into the Pacific Ocean; running with my brother. I think about happy, positive things, because to become tangled up in the voice of self-doubt during a race is Game Over.

But it is a lie to say that I have just run 26.2 miles in two countries in two days by the power of positive thinking. I have just had both of my hips and a knee reconstructed and been diagnosed with a serious collagen disorder – whether I admit it or not – running is intensely physical.

We are here because in December, I had messaged a group of running friends suggesting we sign up for the Copenhagen Half Marathon – Smplefy; eee; Nat, and their respective partners, Laly, E, and Fox, who would come along to Sherpa. I’m not entirely sure why I did this, but it Seemed Like a Good Idea at the Time. Everyone quickly signed on to this suggestion and added another half marathon in Oslo – even the partners were keen to go (except Paul, who begged off).

So we have each finished triumphantly, albeit for different reasons, and now we are in a bar, wearing matching shirts and our race medals, and we are talking about our brothers.

Nat’s brother died almost a year ago; Laly’s brother died about ten years ago. My brother is alive. I say this in my head, and I chew it and turn it over like a wad of gum in my mouth: My brother is alive.

It is not to diminish Matthew’s hard work to say that it is luck that he is not dead, but there is an element of happy statistics at play too. I listen to these women talk about their dead brothers, and it is real to me how close we came; how lucky we are. Sometimes, I think my parents cover up their raw memories of dread with Republican bootstraps and it was never that bad and stop being so dramatic, you weren’t here! But maybe when you’re in it, or when you’re a parent, you have to do that in order to survive what you’ve seen and how it all played out.

I listen to Nat’s grief – the depth and complexity of it; the nuances of the joy for the things that she experienced with her brother. All we can do is listen. Laly, too, knows that grief in a more intimate way than I do; I merely stood on the precipice and backed away.

It’s different when it’s your sibling, Laly says, It’s the only other person who knows the experience of growing up in your family. Also, it’s out of order.

It is out of order.

I remember my revulsion at the thought of losing the only other person who knew my family experience. He would disappear for a few days and we wouldn’t know whether he was in jail or dead – my mother would obsessively search the county jail inmate register – and I would try on the grief from thousands of miles away; seeing how that heavy suit of loss hung on my little frame.

I realise, now, that when I run, I prepare for every race with the thought of my brother’s first race – of watching him tie on the bandanna from his best friend’s funeral; of hearing his footsteps like a heartbeat beside me. I still dread phone calls after 8pm because I always used to think it was someone calling to say that my brother had died. I wonder why nobody ever dies during the day.

I look at Laly and Nat and wonder how they have borne the loss I narrowly escaped.

When Paul and I were out at the beach with my family this summer, a friend texted that he was in Atlanta with a colleague of his – a sorority sister of mine. I had been her advisor – she’d been in college when I’d taken the call that my brother was in jail and the world was about to end. I laughed and expressed my surprise – he sent me a photo of the two of them together. It was a worlds-colliding moment – strange and wonderful – a reminder of the way we are all connected; how past pain doesn’t necessarily taint future or current happiness/success. The photo came as I was driving back up the coast to see a project my brother was working on; managing in his new life as a builder. Sober eight years, he was working with a friend and he’d asked me and Paul to come see what he did for a living and switch his car back with my mother’s, which he’d borrowed earlier that day.

Paul stayed back in Oxnard, and I drove up to La Conchita to make the switch and see Matthew on the job. To travel that weird bend in the 101 where the sun sets over the coast and blinds you if you time it wrong; to see how far he’d come; we’d come.

As I am sitting in this bar in Copenhagen, thousands of miles from the depths of my brother’s addiction and from that day on the California coast, I think of that moment of seeing my brother at work; of that photo of my two friends; of the bend in the 101 where the sun sets; of the fear in the eyes of everyone around me the day I got the call that my brother was in jail. I think about how lucky I am. I hear Nat ask How do you explain this grief; this loss; to your partner? And I think you can’t explain it; I think your partner won’t ever believe it; I think about how addiction ends and loss is just a snapshot in time, but grief gets you, like a noose, and it works its way around your throat and never really lets you go, even once you are free.

 

This is the fourth in a brief series of posts. Here are the firstsecond, and third.

It is April – a week after my appointment with the geneticist, and I am meeting with the surgeon and his entourage again. I am once again standing in a pair of paper shorts and I find myself chattily filling in yet another doctor about my medical odyssey. The surgeon listens, seemingly wide-eyed, because this story is nothing if not interesting.

You’re not the typical EDS patient, the physician’s assistant, Jonathan, interrupts, With our other EDS patients, the surgeries fail. Your right hip is still intact. You had a great outcome! Anyway, I thought you had Rheumatoid Arthritis.

They think I was misdiagnosed, I say, aloud. In my head I say, Shut up, Jonathan. This is my story.

That’s the other thing about All This: I have spent ten years being told that I have RA; injecting myself with Chinese hamster ovary derivatives; taking chemotherapy drugs; doing all the weird and horrible shit RA patients are supposed to do. In the beginning, I did it with a sort of maniacal devotion to my ex husband, who told me he couldn’t love a woman with “claws.” He was so concerned about my appearance that we did everything it took to prevent my joints from ever becoming deformed. Then it just became habit – if you’ve ever sunk a syringe into your thigh, it becomes easier over time until eventually, you don’t even notice how freaked out people are by the sharps container on your kitchen counter.

Apparently, I didn’t need to do any of it. I am not suggesting I ever wanted to have RA, nor am I suggesting that I miss it, but it suddenly feels very weird to Be One Thing for a decade, and then suddenly Not Be That Thing. To have to live your life with a set of clear and somewhat onerous limitations, then poof, one day that all disappears.

The PA nods when I say I was misdiagnosed, because as he speaks, I am bending my thumb all the way back to my wrist in order to make a point.

The surgeon and I schedule a reconstruction of my left hip for Monday, May 9th, and I decide to run a 5k two weeks before surgery because I do not know if I will ever run again.

Before my first hip reconstruction, I ran the Big Sur Marathon – a bucket-list race – because the Pacific Coast was where I lived out the last days of my first marriage, and the first days of something else, and it was where I trained for the 2009 NYC Marathon. It was an incredibly stupid idea, but I figured, if I never ran another marathon, running a slow, painful race in the place where my Whole Heart resided was the way I wanted go out. My bestie eee was there, and so was Smplefy, though I barely saw either. I wanted to have Highway 1 as my Triumphant Finish, even if it meant crawling across the line (which I did).

I have no special affinity for the Jersey Shore, but it is a friend’s birthday weekend, and we are running together as a group  and having a fun dinner after. If I never run another race, I want to remember that my running career ended with my toes in the sand, on the shores of both the Pacific and the Atlantic, with the people I love all around me.  We are all confident that if it were just the hip I would be back up and running by the Autumn. But since we do not know exactly which gene is the faulty one yet, I do not want to expect to be running by September and then find that I have the type of EDS where my vascular system might rupture at any moment.

As a matter of course, I do not tell anyone I am about to have another joint surgery, except for a handful of close friends. While I know exactly what to expect with a hip repair, I do not know what I am getting myself into with The Rest of This; I barely know what EDS is. I do not have a lot of answers for myself, let alone to give other people, and I hate the idea of being challenged or grilled by well-meaning or pushy friends and family. I am dreading any/all of the following:

-This could have been prevented if you’d just stopped running!
-You shouldn’t worry about this, and you and Paul should just be focused on having a family now!
-So how did you do this to yourself?
-Why did your doctor misdiagnose you?
-Tell me more about [This Thing That I Know Little to Nothing About].

I play out each comment in my head, trying it on for size – trying to separate curiosity from blame. I am afraid of answering wrong; I am afraid of looking like a fool because for a decade, I so confidently managed the RA I thought I had, and told people how they should manage their RA. I thought I knew what I was doing.

I want to be healthy; I do not want to get hurt again.

I want you to be happy.

I want that too.

So I run the race on the Jersey Shore, and I take my shoes off in the sand, and if it is my Last Race Ever, I may not be fully satisfied, but I will be happy.

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This is the third in a brief series of posts. Here are the first and second.

It is April.

It is at this point that I see my rheumatologist, and fill him in on the medical adventure I have been on. I have known my rheumatologist for 11 years, and we are neighbours. I used to work with his college roommate. We are close. So together we brainstorm some possibilities for what caused my odd injuries.

Are you very flexible? He asks suddenly.

Yes. I can do the splits all the way down. I can bend my thumbs all the way back, too. Do you want to see? I stand up, prepared to drop into a full split on his lineoleum floor in my paper gown.

 Yes, the thumbs. That’s part of the diagnostic criteria for something. Anything else?

I can bend my legs behind my head and turn myself into a fruit basket.

The last one I say in earnest – it does not occur to me how bizarre it sounds. He ignores the Fruit Basket Comment and suggests You may have a genetic connective tissue disorder – this could be why you keep getting injured so easily. Let’s refer you to a geneticist.

I go home to Google the diagnostic code on the invoice. I have spent my life with a variety of strange, seemingly unrelated ailments that would instead seem perfectly correlated with the diagnosis he has preliminarily given me.

I call the geneticist in the morning. He is booked for 18 months. I search NYC hospitals for another one. She has retired. Another  is booked for two years. I call the foundation dedicated to this disorder, and they tell me that their genetics centre has a waiting list of five years, but would I like to donate cash? At each of these hospitals, I am told that if I were pregnant, they would see me immediately, but since the testing is for me and not a foetus, no interventions can take place.

I do not know what interventions are, but this process seems Kafkaesque.

As a last resort, I consult Dr. Google again, who refers me to a genetics centre only loosely affiliated with a hospital in Boston. After some negotiation, they offer me an appointment two weeks later if I can send them my files ASAP.

The weather has turned sharply cold after a mild winter, and I am due in Boston on a rainy Thursday. On my way to Boston, I stop by Kat’s house to see her and the new baby. I wonder if I will ever have children; if I even want to have children. As I ponder this, Baby A spits out her paci and waves her tiny fists menacingly at me.

Kat wishes me Good luck as I leave. I wonder if I will need it.

There are still dirty piles of snow on the New England ground and the rain falls in sheets as my reliable Volkswagen cuts through the midmorning traffic. I arrive in Boston in good time, and the Doctor Will See Me Now. He is an older man; South African, with one of those lilting Afrikaaner accents that at once sounds Dutch, English, and vaguely Australian. He asks me a list of questions and throughout our chat, he rolls his eyes in a way where I cannot tell if he is impatient with me, or annoyed I have come.

He asks me at length about my family history and I am as prepared as I can be. I have checked birth and death records; I have grilled family members. I have pulled as many of my own files as possible.

Do you or does anyone in your family struggle to heal from surgery? the doctor asks me as the interview portion winds down.

My mother had a sister who died at six weeks old because the surgery to correct her oesophageal atresia failed completely. 

He looks up at me, sharply. Margaret’s condition itself was incredibly rare, and the genes involved might be associated with the syndrome my doctor thinks I have. The fact that her surgery did not “take” is one more important data point towards confirming my diagnosis, and by association, hers.

Finally, after over an hour, he slams his fist down on his cluttered desk.

How did your doctors miss this? This is a textbook case of Ehlers-Danlos Syndrome. 

He is irritated not with me, but with other people’s failures, it seems. I have taken on the yoke of those failures; been dismissed as a hypochondriac or presumed to be a pill-seeker. As it turns out, I am Textbook.

We proceed to a physical exam where he asks me to touch my thumb to my wrist and my hands to the floor while standing. I again blurt out the fruit basket thing, and he seems unfazed by it. Instead, he asks me what I do for a living.

 I’m a lawyer, I simplify.

I love lawyers, he tells me. He gestures to the photos on his walls, These are all lawyers. Famous lawyers. Do you recognise any of them?

I squint at the walls, which are covered with pictures of the doctor and friends, some of them with a distinctive 70s vibe.

That one is me and Justice Blackmun. Very important man. Great friend, especially to a geneticist.

He finishes his exam, takes my blood for genetic testing. He is certain I have EDS, but the genetic test is important to identify which of the subtypes I have. He tells me he will also test me for being a CF carrier and SMA in the event that I want children. He explains to me the risks of childbearing with my condition. He tells me that depending on which version of the bad collagen gene I have, I shouldn’t be dissuaded from having children, but that I should be selective.

It is not until I leave the office and I get into the car to drive home that it dawns on me that Justice Blackmun authored the opinion in Roe v. Wade. I finally realise what the doctor means by selective; intervention.

More importantly, I begin to realise that none of this is my fault. This isn’t happening because I am a shitty runner or because I ran too many races trying to work out some deep childhood pain. None of it is my mother’s fault, and none of it was her mother’s fault, either.

All of this angst; all of this complex grief; all of this damage was done by a simple quirk of DNA. I do not know whether to be angry or relieved. All those years of therapy suddenly seem like a huge, expensive waste.

This is the first in a brief series of posts.

It is May, 2013, and I am standing in a hipster bar in the middle of Amsterdam in the middle of a long afternoon-into-evening.

I have just come to The Netherlands to receive terrible news. To soften the blow of having to tell me how bad this particular situation is, a group of lawyers is taking me out for drinks. But I am jetlagged and angry about How We Got Here in the First Place, so I have become rather tipsy, rather quickly. But instead of paying attention to the Dutch happy hour and the attorneys who have graciously arranged it, I am frantically texting with a man I have loved for a long time, trying to focus his attention on me. In my head, I feel I am the embodiment of a Joni Mitchell song – winsome, wistful, lonely, pining for a man who is not ever going to be mine alone.

By now dangerously tipsy, I message the man a loaded question – a question that is meant for winesoaked lovers’ lips next to each other in bed, or the shadows of a bar, and not from halfway ’round the world via electronic pings. I ask him: Don’t you love me and want me to be happy?

He replies: I want you to be happy.

It is clear that I have made A Terrible Mistake. I gather up my things and leave the bar. I meet my colleague for dinner like Nothing Ever Happened. By the door of the restaurant there is a large, ostentatiously displayed wheel of stilton. My colleague fusses over it like it is a puppy or a baby. We English love stilton, he explains, as if that excuses his behaviour over a wheel of cheese. We finish an unmemorable meal by ordering a cheese plate – the stilton is standout. They cut it freshly from the giant wheel.

It is after Midnight when I arrive back at the hotel and I put myself to bed.

The next morning, I am up early to catch a plane to Edinburgh to run the 2013 Edinburgh Half Marathon. On the flight, I sit and observe the bracelet I am wearing, which I inherited from my grandmother – my mother’s mother.  I am flying on what would have been her 100th birthday, and the bracelet is stamped with scenes from Don Quixote.

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My grandmother was a tiny, peculiar woman, and had been the mother of four children – two boys and two girls. She had lost one of her daughters at the age of six weeks. Years earlier, when my grandparents had still been living in their house in Florida, and I was a tweenager, my grandmother and I had gone through her jewellery and she had taken tiny enamelled pins out from a case.

Those were Margaret’s, she said. Before that moment, I’d never even known such a person had existed, or that my mother had had a sister. Margaret had been born with an oesophageal condition and the surgery to correct it had failed. The absence of Margaret had left a hole in my grandmother’s heart that my mother could never fill. Perhaps any parent who has lost a child will confess to this; perhaps any after-born child will bemoan it. It did not occur to me until much, much later that maybe the Complex Grief was why my own mother and I were not particularly close: Those sorts of gaps; wounds couldn’t close so easily in just one generation.

The irony does not strike me at the time – that I have been chasing a non-existent love and fighting off imaginary giants. That my own Complex Grief has had a hand in tanking my first marriage and subsequent relationships. I just think that I am honouring the dead.

My friend Smplefy meets me in the Edinburgh Airport with a sign that says International Woman of Mystery, and I laugh for the first time in days. We go to pick up our race numbers and talk about running, and Scotland, and Things That Are Easy to Discuss.

I am grateful.

That night, we part ways early so we can each prepare for the next day’s race. I message my mother before bed, hinting at my romantic failures. You just need to put yourself out there, she advisesNobody is going to come into your office and sweep you off your feet. I roll my eyes from 6,000 miles away.

For once, I draw the blackout shades in a hotel room, because it is 10.30pm and the Scottish night is still purple and blue. It is beautiful – I could drink it in forever. But I have to go to sleep because I have to run the next day. I am filled with missing, and longing, but I am limbo because he wants me to be happy. I should be happy. Alone.

The next day, Smplefy and I meet at the Start, making it by the skin of our teeth, and running the course in the unusually pleasant Edinburgh morning. We run past the landmarks, through the city, along the North Sea. It is Perfect. My heart is breaking, but it is a Perfect Day.

I run a slow race, which is confusing. My body feels like it cannot work. I am in good physical shape, and at the finish, my hip seizes for the first time. I blame a twitchy IT band, and jetlag, but I am baffled.

That afternoon I shower at the hotel and cancel my reservation for the night; opting to head back to London then onward to New York. I have failed; I am failing. I am inordinately sore. My then-assistant manages to get me on the last flight out of Edinburgh that afternoon and by evening, I am safely back in London, my grandmother’s bracelet clanging on my wrist as I exit the Tube and make my way to dinner with my friend PG.

It is the end of May, 2013.

I do not know then that within days, someone will walk into my office and sweep me off my feet – and will later become my husband. I do not know that the pain in my hip is not my IT band – it is a serious cartilage injury that will sideline me for a more than a year. I do not know that the bracelet on my wrist and the story behind how I came to possess it will later hold the key to unlocking a serious family medical mystery; that I will be fighting a different kind of giant.

If you’ve been a part of Reverb before, you know that this is the bit where I invite you to share your favourite photo of yourself from the year (selfie or otherwise).

A few of my favourites from 2015:

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Cliffwalk, Newport, Rhode Island: (photo by eee) I love this picture so much. It was the weekend of my hen party, and Newport is a wonderfully special place to me for so many reasons. eee captured me in contemplation as we took a break from our bike ride, and it was just a perfect moment.

 

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Dublin, Ireland: My husband, making Blue Steel at the last wedding we attended before our own, the weekend Irish marriage equality passed. It was a joyful celebration and a really happy week on travel.

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Washington, DC: Me with my bestie from law school at our reunion – I have infinitely more hair; he has less. I love this picture because we may be older, but we’re still as wacky and wild as we were when we were much younger.

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Tarrytown, New York: My mother handing off her wedding gown to me. (photo by eee)

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Edinburgh, Scotland: Me with eee, posed and snapped by our friend M, the day before the Edinburgh Half Marathon. Scotland is magical.