Living is an Art

It is somewhat astonishing to believe that eight years have gone by since I woke up miraculously able to move my arm after the surgery that saved my life. Three surgeries, twenty eight days of radiation, more than twenty MRIs and CTs, countless hours of physical therapy, not enough in therapy therapy, and 2,920 days, and I am happy to report that I am still actively above the ground. I have a lovely patch of silver hair and I really like birthdays. 

I stopped actively writing and sharing about my cancer journey in 2018. My last entry was after my last appointment at MSKCC, when they told me I wasn’t a candidate for lymph transplant surgery. I figured people had heard plenty from me about how the “new normal” was not normal and no longer new. Progress plateaued. I learned that no one knew enough about lymphedema to be helpful, my immune system was on permanent hiatus, that I would probably never go back to education full time, and that life was going to be different. Very different. 

From 2015 to 2018, I fought my reality, and honestly, I was so very angry. While my health was stable, I was far from fine. I just didn’t want to talk about it anymore. No one wants to read about anxiety attacks, depression, and midlife career stall. Cancer, radiation, and surgeries traumatized my body and the aftermath traumatized my brain. 

In 2018, I began to accept it. I took on a new job. I tried to move on. And for the most part, I was successful. I found a new niche running a small
library. I found ways to contribute to the community. Eventually, I found my way back to the barn and riding. I wrote Mama, What Color is Your Love? a book that helped me process crippling anxiety. I found comfort singing and on stage. 

Through it all, I have continued to struggle with my body. Outwardly, you would never know I had cancer or continue to struggle with the side effects of its aftermath. People routinely tell me I “look great!” which, while a lovely compliment, is incredibly far from my reality.

When you’re young and healthy, you simply assume that all of your limbs will work as they were designed to, that all of your systems will function according to biological plan. My body is like a lifelong friend that betrayed me, and we’re still working on rebuilding our relationship. My arm is not reliable, my hand damaged, but all still faithfully attached. My lungs like to play host to all kinds of infections and crunk, like those awful houseguests who show up and don’t know when to leave. And while I no longer have to stop on the side of the road to sob through an anxiety attack over my fear of dying, my brain frets and stews about what I am not doing, what I feel like I should be doing, or the dreams that I’ve had to put aside. My relationship with my body is complicated.

When I saw Alli Gaulin post about her Forty Over Forty project, I initially dismissed it as vain and superficial. I don’t particularly love pictures of myself, and I was told once that I was impossible to photograph. But then I really thought about it. I have always admired Alli’s gorgeous work. I needed a chance to see the art in my body, no matter how scarred and broken.

During our pre-photo meet and greet, I pitched her an idea. I had seen some beautiful examples of kintsugi portraiture. Kintsugi is the Japanese art of repairing what is broken with gold. The idea is that the fractures can make the piece even more beautiful. I asked if she would be willing to consider the project, maybe not during this session, but sometime. 

I have a LOT of scars. Big scars. Scars that still hurt and burn with phantom impulses and the searing pain of skin over nerve over bone. Scars that I don’t like to touch myself or have touched by other people. Alli was not only on board, but she researched, practiced, and honed her technique to make this idea come to life during my session. With care and kindness, she painted my scars, illuminating both my physical and mental journey. 

On this, the eighth anniversary of the surgery that saved my life, Alli shared with me the first image from that shoot today, just before I set off to yet another appointment at DHMC. I cried. 

My body and my mind have been broken, healed, and mended. I am still a work in progress, a human becoming. The scars are still there, but the fact that I am here to possess, embody, and share them…that is pure gold. 

Mama, What Color is Your Love?

In December of 2019, just before the holidays, a labor of love many years in the making finally saw the light. I gave birth to a book! Today, I committed to the process of spreading its message and getting into the hands of other cancer patients. 

On the surface, Mama, What Color is Your Love? is a children’s story about colors. Go a layer deeper and you will learn about the love of a mother and her child as witnessed in the beauty of the world around them. But go to the root you’ll see that it’s really a love letter to anyone who has ever wondered how to make love visible or ensure their love is felt, even after they are gone. 

You see, when the idea for this book was born, I was afraid to die. My life had been abruptly upended with an aggressive cancer diagnosis. What made this especially terrifying was the idea of leaving behind a toddler who wouldn’t remember me after I was gone. I couldn’t fathom leaving him, not having him know how I loved him with every ounce of my person. What could I leave for him to remember me by? Tchotchkes? Pictures? Gifts? Letters?

In the end, it was this same child who came up with the question that gave me my answer. One day, before going to sleep, he asked me, “Mama, what color is your love?”

Honestly, I had no idea the answer to this question, but I knew it was the solution I was looking for. I knew if I wanted him to truly know that my love was going to be with him forever, wherever he went, whatever I gave him couldn’t be a singular tangible “thing.” But color, color is everywhere, the same as love. It surrounds us. It makes our world vibrant, alive, beautiful. All we have to do is look around us to see reminders of love in all its beauty, all its wonder. Anything and everything can be a reminder of love, even after the person sharing the love is long gone from the world. All you need is to know where to look.

I found the perfect illustrator in Shannon Hunt, a lifelong friend and brilliant artist whose own father passed away from cancer when she was very young. Together, we hope we have given the world a story you can use. Whether you are looking for a way to teach a small person about colors or the beauty of our natural world, or you’re looking for a way to remind someone in your life that love is omnipresent in the face of our own transience, we hope you enjoy Mama, What Color is Your Love?

Atypical

One in a million. A one off. An aberration. Rare. Atypical. Weird.

Since my diagnosis with synovial sarcoma of the left axilla (aka super rare armpit cancer), all of these descriptors have been used to describe me.

At the start of my treatment, one of my trusted doctor friends told me being so singular was a good thing: countless doctors discussed my case, which was made all the more complicated since I am left handed (10 percent of the population) and the offending mass was wrapped around some pretty significant left side nerves, veins, and arteries. What were the odds?

The many brilliant clinicians did the absolute best they could. They plotted my radiation treatment then replotted it when they realized the original plan would cause too much damage to my lungs. They planned my surgery, then changed course once I was on the table, hoping to preserve more of the functionality of my arm.

Using techniques similar to (but also very different from) what they would use during a mastectomy, I essentially got an armpit-ectomy. They carved out muscle and removed nerves, harvested lymph nodes, detached my lat muscle and reattached it under my arm and to my chest. They sewed me up with a thick swath of my own skin. I broke ground.

And then they sent me off. Six months later, I was diagnosed with lymphedema, which my radiation oncologist missed and dismissed as too rare a complication (10-30% chance) but my surgeon said with radiation, radical surgery, and missing nodes was almost to be expected. Unfortunate, but not rare.

For a moment it felt good knowing that there were other people who had gone through this. There were known strategies to help.

Then my breathing became affected. It started to feel like I was drowning and my sternum was being crushed, so they sent me to a pulmonologist. Oncology didn’t know what to do with me.

My lovely pulmonologist ran tests and tried every steroid, antibiotic, and inhaler in his arsenal. None of them helped and he admitted to not knowing what else to do. He had little experience with cancer patients and no experience with lymphedema. He sent me back to my oncologist.

My oncologist admitted to not knowing much about lymphedema or pulmonary complications, but he sent me to a physical therapist.

The physical therapist gave me MLD (manual lymph drainage) techniques, had me fitted for a wardrobe full of compression garments, and recommended that I look into programs designed for breast cancer patients. Which I look like. Sort of. A little.

For two years, I have been reminded by lymphedema nearly every day that cancer is the gift that keeps on giving. Some days are easier than others. On some days I feel relatively normal. I get tired more readily, my immune system sucks, and I have to take precautions against even little cuts or scrapes to my left hand or arm, but it’s okay.

And then there are the days that just aren’t okay. These are the days where I can breathe. Where my chest hurts so badly that I can’t stand up straight. When I’m so full of fluid that I weigh 10 extra pounds. When my immune system simply can’t keep up.

These are the days that sent me back to MSKCC, back to someone who knows the lymphatic system and is pioneering surgery to transplant healthy nodes to replace those that were removed. The hope of normalcy through surgery.

Dr. Mherara was funny, kind, and baffled.

“Synovial sarcoma of the left axilla is pretty rare. It’s actually pretty weird,” he laughed. But lymphedema wasn’t a surprise.

My left arm may have Stage 2 lymphedema, but it is healthy and not very swollen day to day. My left breast, which often bears the brunt of my visible swelling is “perfect” (Why thank you, doctor.).

I explained to him that my symptoms, while never silent, get ugly during the ramp up to my menstrual cycle.

“We know that there is a link between lymphedema and hormones,” he said, “but we don’t know what link is yet.”

“Could you get on that please?” He is the kind of doctor you can say that to.

“It’s part of the grant,” he smiled. “But the chest pressure, the phlegm-like fluid, the difficulty breathing... that’s atypical.”

He could run some tests, but they would come back inconclusive abnormal. And since I don’t look like his normal surgical patients, they wouldn’t give us information that would lead to a solution.

He asked about pulmonary function tests (low normal) and inhalers (tried them all) and quality time with doctors who do lungs and heart and symptoms that look and feel a lot like congestive heart failure.

I asked him if he knew any pulmonary oncologists. He did, he said, but none that would be familiar with a case like mine. Because I don’t have lung cancer. Because I’m atypical.

By his best guess, I have radiation complications. Maybe pulmonary fibrosis or pneumonitis. Or maybe it’s some kind of lymphedema that only one in a million people with lymphedema have, and because of that, there is no protocol.

My occasional torturer (or rather, the OT that made sure my my arm worked again) calls me a singular miracle. My one in a million cancer, lodged in a place where even people with weird cancers don’t get cancer, was found before it could kill me, which is rare. My mobility recovery is singular. My being here is a miracle.

However nice being a miracle is, this is one of those days where being an outlier, an atypical aberration, a person for whom there are no clear answers, does not feel so miraculous. I don’t want to be atypical. I would, for once, like a nice, clear, “normal” path with some bold print answers.

But that’s clearly not how this game works for me.

So here is to more digging, more research, more questions. And hopefully, someday, a new normal that feels less new and more normal.

Seasons of Love, or, Harmony Admist MRI Dissonance

“Hey, Broadway!” My favorite MRI tech knows me not by name, but by the Pandora station I choose to listen to while I’m stuck in a tube. My guess is not many people choose to rock out to Broadway show-stoppers during their body scan. Leave it to me to be the odd ball.

My sensory journey to Cancer Camp today was a strange one: 90 minutes shrouded almost entirely in dense autumn fog. For the majority of the drive, I had no companions on the road. Or if I did, they were just far enough ahead or behind me that I couldn’t make out their lights for the pea-soup thickness surrounding me. There would be no marveling at the landscape of Vermont changing from green to gold, no looking out over glistening lakes and rolling hills during the early September morning. It was literally freezing when I left Whitefield, so I turned on my blessed heated seats and allowed myself to be snuggled in warmth, as if I were still in bed. I left the music off, and after learning enough about Aleppo on NPR to make me thoroughly depressed, I silenced the radio, too. It was as if I was supposed to have the drive to contemplate this adventure in as distraction-free a way as possible. A time for my brain’s own music.

Once you enter Cancer Camp, the scan-land version, it is impossible to find silence. The  waiting areas ring out with the rote questions from intake, patients’ names being called across the large room, quiet couples talking, and lots of coughing. CT scans robotically remind you when to breathe and you’re asked your date of birth a dozen times. But MRIs, with their cacophony, are the most disruptive to zen. That’s why they offer you music to listen to while you’re trapped inside the scan.

In order to really get the music loud enough to be heard over the whir and buzz of giant magnets, I’m sure the volume would have to be cranked to a level that is not advisable or permissible in the healthcare world. So after they get you appropriately strapped in, covered up, and stuck with needles, they put headphones on you, with the volume just loud enough to give you the essence of sound. It’s best to pick music you’re pretty familiar with because you’re going to have to fill in a lot of the gaps. That’s why I pick Broadway.

In the quiet space before the scanning actually began, I got to listen to the entirety of “Seasons of Love,” from RENT. It’s a personal favorite of mine, a hopeful song, one that I love singing along to when I’m not stuck in a tube, although it inevitably makes me think of mortality, AIDS, lost friends, and also being 16. Somehow it worked as the foundation to accompany the day.

Many of the other songs were lost under the din of the machine. I caught bits and pieces from Frozen, Grease, Les Mis (always Les Mis), most of Bebe Neuwirth (I love her) and “All That Jazz.” But eventually I had to close my eyes and stop trying to reconcile the musical subtext with the avant garde time signatures of the machine. One scan maddenly staccatoed out a pattern of 14 eighth notes and an eighth note rest which did not at all go with whatever was trying valiantly to be heard beneath it. The magnets buzzed loudly, inserting percussive sounds like dot matrix printers and buzz saws in the keys of Maybe and Probably at the same time, clashing terribly with bright Broadway melodies. The machine created discord, the rhythms didn’t match up, and my inner musical ear started to scream STOP!

Sometimes there is no making sense of this journey, or at least parts of it. The words don’t match the music which doesn’t match the key signature which doesn’t match the time signatures. I hate chaos like I hate bad jazz. It all sounds wrong. But at the end of the day, when you feel like you might explode if you don’t cough and that last cc of fluid they pushed through that IV is going to make you burst, “Hallelujah” manages to make itself heard under the drone, and the key is somehow just about right. I have no idea if it’s from a Broadway show or how it made its way onto the Pandora playlist, but it’s a beautiful song regardless. In this season of love and this time of hope, when some things don’t make sense, close is close enough.

Playing the Part

A few months ago I did the 23 and Me ancestry/DNA test; six to eight weeks later, the results confirmed that I am Irish enough to be superstitious. Hence why I haven’t written in quite some time. I don’t want to jinx myself.

I am very careful about the thoughts I put out into the Universe because I’ve learned from experience that words have a powerful way of manifesting into reality. And my Fairy Godmother has a very strange sense of humor. While I have yet to find just the right sentiment to conjure a lottery win, I know the power of what you think, feel, and speak.

So for months I have remained essentially mute on digital paper and somewhat recalcitrant in person talking about the newest leg of my journey for fear of disrupting the delicate and finicky nature of Karma, Fate, god or God, whomever is directing this particular show. In fact, instead of writing, that’s what I’ve been doing- shows.

Since last September I have spent an inordinate amount of time being someone else. It has been a welcome change from being being my often-angst ridden self to be the glib and lovely Gwendolen Fairfax, or the glamorous show girl Janet Van de Graaf, or even the witchy but redeemed Polly Harrington and Prudy Pingleton. Memorizing lines, blocking, and dances, honing mannerisms and accents, transforming myself with wigs and makeup and costumes.  Having to hold so many things in my head has been a great excuse to not let spend a lot of time in my own head rummaging around in Courtney-ness, thus not letting my thoughts out to wander unsupervised on their own.

So it’s only appropriate that on August 17, I will pack away Prudy, my summer role, back into trunks and storage racks, in exchange for a role I haven’t played in years: Ms. Vashaw, Humanities teacher.

Exactly how and why did I get this part?  Thanks to some great new supplements, I’ve been able to have the most “normal feeling” stretch I’ve had since before my diagnosis.  I have energy again (most days). I always said if I was really going to go back to teaching, it would be middle school; and sure enough, that’s the position that opened up at my wife’s school this spring, just as I started to feel well enough to take a chance. So starting with in-service on August 16, I will be a new teacher again.

I’ve played this role before, but I know well from past experience that even a familiar role can look strikingly different the second or third time around. Just like a new theatre or director brings new nuances, costumes, and sets to every play, a new school means a new culture, new kids and parents, new rules and regulations, state mandates and buzz words.

I am a very different me from the person I was two years ago or ten years ago. I think this is what scares me the most. In my previous teacher life, I was the “there early, stay late, advise, coach, go to everything” teacher. I worked at home at night, on the weekends, and over the summer. I had to design my own curriculum at every school, starting virtually from scratch, building resources, writing grants. I rocked it.

Now I’m worried about catching some ick that my body can’t handle or being able to stay functional and awake all day.  I took a part-time teaching job last October, working with at-risk teenagers. I loved it, but I didn’t talk about it much because I was afraid I wouldn’t be able to keep doing it, that my body simply wasn’t up to. I pushed through until January, when our semester ended, but then had to scale back and work on curriculum from home. I spent an inordinate amount of time in the winter and spring going to PT, researching supplements, exploring and testing, and napping. I’ve come a long way since then, but my body no longer plays by any established set of rules, so every day is unpredictable. But since there have been more good than bad over the past two months, I’m hopeful. So very hopeful.

So, Universe, I’m putting it out there. I will be a teacher again. I’m looking for the strength and energy to help nurture and excite young minds, the creativity and resourcefulness to open their worlds and their hearts, and the time to share myself with them, but also with by family. I want to be great, but I will settle for healthy and good. I want this to work. I’m perfect for the part.

And Fairy Godmother, a really good sale on Sharpies, dry erase markers, and sticky notes would be great, too. :)

Travel Through the Journey

In my B.C. world, I was a road trip warrior. I have been known to log hundreds of driving miles in a day, down the eastern seaboard, across the Mississippi Delta, or through the Great Plains, the road stretching endlessly behind and beyond. I have joyfully traveled solo, quietly people watched in cafes, navigated some truly horrendous airports and had laughingly bad travel nightmares. While I’ve never been great at pulling all nighters “just because,” as a traveler, I have crossed multiple time zones, countries, continents, and zones of comfort in the name of a new adventure (or a beer in Amsterdam). Armed with a backpack and a good pair of shoes (or sometimes fashionable boots, because, you know...France), I have easily earned my 10,000 steps before lunchtime.

Today, it took me an easy drive to Concord, a bus, a taxi (what?! Never…), and a well placed IMAX movie to get me through a day in Boston with Sterling.

In the two years since my first surgery, life has looked decidedly different, especially when it comes to travel. It is not to say that I have been house-bound, but I have haven’t gone more than 90 minutes away from home on my own. In the beginning, I physically couldn’t drive, so much of that task fell to Jessie. Now, with fatigue a very real part of my world, driving wears me out. Flying, which I used to do so cavalierly, has become risky for me because there is a chance my body isn’t going to be able to handle pressure changes with all of the extra fluid my body holds on to thanks to lymphedema. I can wear a compression sleeve on my arm, but my back and chest, not so much.

The biggest change is my lack of travel autonomy. While I am capable to getting from point A to point B, there isn’t a lot of point of doing so if I’m too tired to function once I’m there. When we have gone anyplace with the kids, it has been a tag team approach, going so far as to take my parents with us to Florida last year because there was no way I would have been able to keep up (plus, they deserved it).

As I’ve been learning to navigate this new world, I have had to make some very real changes to the way I do life, and travel has certainly been one of those shifts. I have come to realize that my energy is unfortunately finite. I have to be very strategic about how I plan my time, how long it will take me to get somewhere and do something, if there will be a place for me to stop and rest if I get stuck in a fatigue cycle. I know if I push, it will take me a day or more to recover.

So as I was thinking of what I was going to do with Sterling on a rainy day in April during his school break, which happens to not be the same break week as Jessie, Willow, and AJ, I had to be incredibly methodical in my thinking. He wanted to go to a madhouse full of giant bouncy castles. It’s loud, smelly, 2 hours away one way, and without his siblings, I would be co-jumper #1. Thanks, kiddo, but no way in hell were we both surviving that adventure.

I thought of taking him to the little children’s museum he likes in North Conway, an hour away, but the bang for the drive just didn’t seem worth it. I knew I would come back exhausted and there was a strong likelihood that he wouldn’t take a nap.

And then it dawned on me: If I could handle 30 more minutes driving, I could get us to Concord. And if I could get us to Concord, the bus could get us to Boston. And Boston, well… once I got there, I was pretty sure I could find a place to sit down if I really needed.

My early riser was up at 6:00am yelling a detailed narrative of his morning ablutions from the bathroom while asking a full slate of questions about dragons and wondering if I would like to pretend to be  characters from Moana with him.

Barely functional and wondering which non-human entity I had been assigned, I asked him, “Hey Bud, would you like to go to Boston today?”

“Yes!” (Did I note he LOVES Boston?)

“What would you like to do there?”

“Pat the sting rays!!!” So the Aquarium it was.

Today was not a day where I was able to meander the streets of Beantown showing him cool architecture or exploring the nooks and crannies of the city’s many culinary wonders. From South Station, I gave in to literally door to door taxi service. Not only was the weather dreary, but I couldn’t expend the energy walking the streets that I knew I would need to keep up with him in the exhibit halls. Scanning the schedule and knowing when my body typically decides to peter out, I enticed him with a mid-day IMAX movie. He has a thing for marine iguanas (“Can we have one of those for a pet?” “Not on your life, Buddy.”), so getting him to sit for 40 minutes through a 3D Galapagos Island adventure was a breeze, and also a great way for me to regain some functionality.

So Sterling had his first taxi rides today. He took three different trips to the ray and shark petting tanks, two trips to the northern tidal pool creatures, two treks to see the Pacific Octopi and anacondas, squeals and jumping at the poisonous frogs, sea dragons, jellyfish, and seahorses, a cursory cruise through the sea mammals (“Don’t you want to watch the seal show?” --hoping, hoping… “Meh…” Fish and Reptiles- 873, Mammals- 0). I let him eat a soft pretzel with mustard for lunch and he earned himself a new t-shirt by going clavicle deep into his ray-patting adventures. Those Dyson hand dryers only work so well. You can’t actually put the entire child in one.

Warm, fed, and dry, he was asleep in my lap before we got out of South Station. After a few pages of Harry Potter tonight, he told me, “That was the best day of my life!” The day was a success.

By my old travel standards, the day was barely a blink of time. I misstepped by forgetting that I’m not supposed to wear a backpack anymore thanks to my franken-armpit and uncooperative lymph fluid, and I’m paying for it tonight. I will likely have to take a couple of naps tomorrow.  

If all goes well, and if I have enough energy to pick up the prescription, tomorrow I will start a trial of a medication that may help with cancer related fatigue. Maybe next April will find us venturing out to points more distant. Regardless, today truly was one of the best days of my life. I got to have a travel adventure with my boy, one that he may or may not remember 20 years from now, but I hopefully I will.

"Mama, can I brush your hair?"

“Mama, can I brush your hair?”

We are standing in the bathroom, having the conversation about washing our hands, with soap!, for the one hundredth time. Today. Perhaps he is trying to procrastinate or get me off topic, and it works. This is such an act of kindness, a small and precious moment, that I can’t say no.

He sits me down on his little stool, the one he doesn’t need anymore to reach the sink, and begins to work his chosen brush through my hair.  It is the longest it has ever been and I don’t fuss with it much these days- no straightening or curling iron, so it’s wildly wavy and more complicated than he originally planned, I think. But he’s careful and meticulous, gentle, laughing as he brushes it all over my face, Cousin It style.  He doesn’t know how much I love to have my hair brushed or how poignant this moment is to me.

When I was first diagnosed, my first thought was that I wasn’t going to live long enough for my son to remember me. He wasn’t yet three. I would be nothing more than his mama in pictures. In those first few months, it took every ounce of self control I had to not cry every time I looked at him. I worked so hard to make life look and feel normal for him, but my whole heart broke if I let my eyes linger on him too long. Tucking him into bed at night, I would cuddle him up and wait for him to go to sleep before I would silently cry long after he settled into the soft breathing of a slumbering toddler.

I would love to say that this dread went away after my big surgery, or that December after I received my official N.E.D. status, but it didn’t. I knew I could handle pain, and I wasn’t scared of death in its terminal finality, but I was still so terribly, dreadfully afraid of leaving him behind.

When we got through Year One, I knew I was one step closer to not being a myth in his mind. This spring, as he approaches five, I realized that it has been months since I had to pull over on the side of the road to cry. He has real memories now, and I’m pretty certain I’m one of them. I also understand that my anxiety around cancer runs far deeper than whether or not my son will remember me, and I’m working on navigating the terrain of “survivorship.”

In the two years since my tumor was found, I have read countless stories of parents with cancer, and my heart breaks every time.  Tonight I cried over the diagnosis of a man I’ve known my entire life, someone not that much older than me who has a little girl who deserves to have a father who can watch her grow up.

There is so much about this disease, or any one that makes you significantly contemplate your mortality, that weighs heavily on your mind. No one wants to see a child sick, or anyone for that matter, but a parent with cancer has the additional burden of not only wanting to get better, but also fretting and worrying about making sure life doesn’t come crashing down around their children or what will become of the little person who is their world.

I am more grateful than I will ever be able to say for the time I have been given to be part of his world, and it’s because I know that my time may be limited that I work every single day to make sure it is a better place. I’m sure he doesn’t know that in any conscious way, but my hope is that somewhere, ingrained in his memories of me, he knows how deeply he is loved and how his existence makes me fight to not just exist, but to truly live.

So for today, that’s what I have to offer. Nothing grand or especially noteworthy, but a reminder that we are here for all of these precious moments, which, done in kindness and love, cannot help but make the world better for us all.  No one knows how many days we have or how many memories will will get to create, so it’s best to honor every one we are given. Twenty years from now, he may not remember asking to brush my hair, but it is my hope that I will be around to remind him of how much those little things truly do mean. And if I’m not, I hope the accumulation of many little memories paint a picture that small gestures can yield indelible good.

When my body hurts, there is nothing I want more than to be wrapped in something warm and soft, cuddled into a cocoon where I can try to forget about the pain. Reading (the right book) is a fabulous escape. Writing is the next best thing. Needless to say, today has been tough.

Please, could someone please wrap me in a nice soft book? My body needs a new reality today; I’ve been combing the shelves for something cashmere bound and down filled, a balmy 76 degree place to nestle and nest.

Adventure, romance, travel, happy endings all, filling the pages with the appreciative murmur of satisfied characters, plot and theme essentially irrelevant so long as I get amber gold imagery conjured from mellifluous language, deep rooted words smelling of sandalwood and exotic fruits.

I’d like to lie back on this raft of silken words, a river ride of clouds and sun, and watch the galaxy turn in slow motion while shooting stars land in a whisper like so much dandelion fluff or milk and honey rain pitter patting soft and low, percussive kisses, feather light.

Give me a thousand pages where I can alight barefoot and quietly wander, methodically picking my way through the dense forests of metaphors and allusions, seeking but not lost, senses heavy with wonder, my mind electric.

In return, I will strip off this weighty dramedy and put it back on the shelf or lose it under so many cookbooks and catalogues. It’s pages carry the acrid smell of pain and jutting plot points, sitting in jarring juxtaposition to an underlying maudlin theme. I’ve never been one to cast aside a book, but this one needs some serious editing.

Fixed State, Change State

As Americans, we seem fully willing to acknowledge that our bodies are a work in progress. We have no problem telling someone how many hours we spent at the gym, how many pounds we lifted, how many miles we logged this week. Our FitBits celebrate our steps, MapMyRun shares our routes and times with the world, countless workout selfies and pictures of chia seed-laden smoothies serve as “fitspiration” to keep us on track. Despite the fact that many of us don’t get enough quite exercise, there is no shame in proclaiming to the world our progress toward our body goals.

My body goals have very little to do with my mile time. I’m not working toward the perfect six pack or buns of steel. I’m just really psyched to have an essentially functional arm and I’m working exceedingly hard at breathing these days. If I had a little gidgy to count the number of hours I have spent over the past 17 months in physical therapy, (trying to) exercise, visiting specialists, redesigning my wardrobe, attempting this or that new technique, or simply flat on my back in a tube being imaged, all in the name of getting my body to cooperate, I would be rocking the celebratory confetti.

So last week, after a particularly miserable episode of feeling like I was either going to A) drown, or B) be poisoned, thanks to an overabundance of stagnant lymphatic fluid hanging out in my upper torso, I happened upon a snippet of a TED talk (which I will try to dig up and reference later) that essentially posed the question, “What if we worked on our minds in the same way we worked on our bodies?” The speaker was noting how willing we are to work on our physical selves, but our subsequent inability or unwillingness, thanks to our classic American reticence, to talk about our emotional well-being.

Full stop.

There was never a doubt that I would have help regaining my strength or range of motion, and it has taken an impressive team of experts, including oncologists, surgeons, neurologists, physical and occupational therapists, and chiropractors to get me to where I am today. Last March, when I started manifesting symptoms of lymphedema, I added even more members to my already full roster of health professionals, including three different physical therapists, professional compression garment fitters, skilled tailors, and soon, acupuncturists.  As frustrating as it can be that my body still doesn’t function in a way I would like, all of this was essentially expected. There was never any question that I couldn’t do this alone.

So why did it take a team of wild horses (and my best friends, my wife, and my mom) to get me to agree to at least walk through the door of an oncological therapist? And why did it take me over a year to do it?

I grew up the proud product of rock stubborn Irish stock. One of my mother’s favorite sayings, proffered countless times as I lay in a heap of reins at the hooves of some horse is, “Are you bleeding? No? Buck up. It’s a long way from your heart.” This woman has severed her big toe and finished barn chores and taken a hammer to the face and continued building (separate incidences, but no less hard core). Couple this with the fact that she was the primary caregiver for my completely unstable grandmother for a lifetime and you get someone with very little tolerance for nonsense and shenanigans. And while she has never treated me with anything but kindness, understanding, and softer kid gloves than I ever would have expected through this entire cancer ordeal, there is an undeniable vein of steel that permeates my consciousness, one that has frequently served me quite well. Stand strong, work hard, be independent. We don’t do wussy here.   

When I learned about my cancer, the radiation, surgeries, potential side effects, and, you know, the possibility of dying, I truly didn’t expect for it to have a profound effect on me. I thought, Suck it up, Buttercup. Many people have been through so much worse. I thought that I would be able to buck up, get back on the horse, and continue life as usual without much interruption. But for so many varied reasons, that has not been the case. And mentally, emotionally, I was not prepared. I was not prepared for anxiety, depression, and fear. I certainly wasn’t prepared to need help doing something about it. And for all of that I have felt so damn weak.

Cancer changes your life. It changes your body, your health, your job, your family, your sense of safety, stability, and well-being. It changes you. No matter how hard I wanted to believe that wouldn’t be the case when I was first diagnosed, no matter how hard I have fought for it to not be true after my surgeries, there is simply no denying this fact. Trust me, I tried for all I was worth.

This week, thanks to more body work, I achieved 15-20 degrees more range of motion in my arm. No one knew if this would be possible, and in fact, there was no indication that it would be. I also went to therapy and talked about my life adjusting to cancer. I didn’t think that would be possible. The fact that my body still shows signs of growth, rather than being frozen in the static state it has been stuck in for the past year, gives me hope. And more than simply giving me hope for strength and mobility in my arm, it gives me hope that my mind will continue to grow, adjust, and settle, as well. There is no shame in working on it. Now if I can only find an app that will deliver chocolate every time I hit a new milestone.

Erase Hate. Educate.

I was nine and my brother was three the first time my parents were asked, “Aren’t you afraid to leave your children with them?” referring to their gay best friends.

I was ten when our friend Greg was murdered, and his family was told by the state police, “He was gay. We’re going to just assume it was a ‘crime of passion.’ We’re afraid it’s not going to get a lot of attention.”

I was twelve my great aunt refused to come to our house anymore, for fear that she would contract AIDS.

I was sixteen, with my short burgundy hair and freedom rings (“Aren’t you afraid of what people will say?!”)  when I was told in the middle of my sociology class that all the gays should be put on an island and bombed. That the world would be a better place.

Shortly thereafter, the "gay plague" of AIDS took the first of our friends. His family didn't know he was sick because he had been afraid to tell them.

I was a first year teacher when I was told we needed to be afraid for Ryan, because kids were getting mean, and being not only gay, but a hemophiliac, if he got beat up, he could die.

I was an adult when my mother reminded me that we do not live in Boston or Burlington, when she apologized for encouraging me to be too liberal, too progressive, too bright and female and empowered, to work in the North Country and admit to my boss that I was in love with a woman. That that would be too much. She was afraid I would lose my job. 

I was an adult when I was asked by a closeted friend if I was afraid to walk down the street holding that woman’s hand.

It was this past spring that my wife’s parents sent her a letter, telling her that they were afraid they don’t know how to support her, through my cancer journey or really at all, because they fear she is an abomination and is going to burn in hell. 

It has been more than 25 years that I have sat with the fears of people coming out, staying hidden, praying for something different, because they were afraid of losing their friends, their families, their college funds, their faith, their safety, their lives. And I have always been afraid that I couldn’t do enough. 

I refuse to live a life of fear. We cannot live in fear.

In fear, our bodies and minds change. The way we see the world changes. We become primal. Are we going to flee, hiding from that which makes us afraid? Are we going to freeze, the proverbial deer stuck in the headlights, and do nothing? Are we going to flock, finding other people, similar people, with whom we can shelter from our fear, or are we going to fight that which we are afraid of?  From fear, we develop anger, from anger, hate. And from hate, all too often violence. 

But what if we refused to let fear control our lives and poison our hearts and minds? If we said enough of the fear and hatred bred of ignorance. If we decided to defeat violence, hatred, and anger back at their very roots.

In the words of Jonathan Larson, the opposite of war isn’t peace; it’s creation. Peace can be passive. Creation cannot. Similarly, I believe the opposite of hate isn’t love; it’s education. Active, concerted, meaningful, education. If we want the violence to stop, if we want our world to be a better place, if we want to start living with less fear in our hearts and our world, we must seek not only to tolerate, but to truly know, to empathize, to be educated in the lives of the people around us. To see them as we see ourselves. 

Life is too short, too precious, and too precarious to live in fear. As we come together in this space at this time when so many of us are left wondering, let us commit to not only filling the world with love, but understanding. Let us commit to educating ourselves and the world around us of the possibility of a world without fear. 

ERASE HATE. 

EDUCATE.

The opposite of war isn’t peace; it’s creation.

The opposite of hate isn’t love; it’s education.

My 1000 Kids

In the early, pre-dawn hours of this morning, one of my kids died. I say "my" kids because when you teach, you have the special privilege of seeing a young person every day for 180 days grow up in front of your eyes.  This is especially true in middle school when the span of time from September to June can mean a six inch growth spurt, head gear and braces to radiant smile, facial hair and an octave drop in a boy's voice, say nothing of the relationship transitions, ah-ha moments when their reasoning fully shifts from concrete-ish to abstract, that first real conversation where the glimmer of the adult they will become shines through the bathroom humor or self-conscious mumblings. 

I have had the honor of seeing somewhere in the neighborhood of 1000 young people through these years, spanning 7th grade through seniors in high school, from about 12 to 19 years. Many I have watched grow from awkward middle schoolers all the way through self possessed, talented seniors, a decided perk of a 7-12 school. My oldest are now in their mid 30's and the youngest barely teenagers. I feel fortunate that I don't have much more grey hair than I do. 

After they graduate, I will accept their Friend requests, and I encourage them to call me by my first name.  A decade and a half out and some still just can't do it.  I love seeing their parents, or better yet, the kids themselves, in the grocery store and hearing about their first year of college, or how they landed this amazing internship or job, or that they are still playing soccer. I love the pictures of engagement rings and weddings, first homes and new jobs. Yet even when I get to hold their babies, I can still see that baby faced teenager who wreaked havoc on my third period class or cried in my office after school or wrote a brilliant essay about their favorite activity being a totally fictional underwater sport.

But not all news comes from benevolent social media posts. Yes, I read the police reports, searching for the names of "my kids." It crushes me every time I see one splashed across the news. I want to take them by the shoulders and shake them or hug them and show them a picture of that adorable (or sullen or purple haired) kid they were when they sat in my class wondering why I insisted they learn how to use a comma when really what I wanted was for them to pause and be good people. I want to ask them if there was an opportunity I missed or something that I could have done to prevent such unwanted notoriety. When I see them later in the aisles, head down and averting my glance, I try to catch their eye, smile, and search their face for the answer. I ask them how they are doing and I really want to know. I still want to know.

And then there are the headlines I could have done nothing about, even if I had made them read one more book about a better world or had given them an extra dollar for lunch money. These beautiful young people do not deserve to be fighting for their lives, or worse, have no fight left to give. I cannot save them from cancer or car accidents, and this incenses me even more than a trip to court or even jail.

I understand better than most that our time is finite. Tonight I look at my own son, snuggled in his bed, and I want to put him in a bubble and never let him out from under my protective watch. I have wished these past six months that I would live to see his graduation from high school, to dance at his wedding, to hold a grandchild. But it's on nights like this, as I watch my feed fill with the tears of my past students, when I fervently wish that I could protect all of those kids who have come under my care, that I simply, selfishly ask that he outlive me. Because anything else is unthinkable.