Two Years On: Emerging from the Shadows

The Road to Betterness

The thing about living a life with three kids, extended families, jobs, friends and household responsibilities is that it doesn’t stand still when you are recovering from illness. It just keeps on hurtling forwards, whether you can catch up or not. For us, a regular routine is a pretty astonishing merry-go round of soccer, baseball, lacrosse, feeding cats, feeding children, lost cats, rotating Au-Pairs from around the world, minor sports injuries, karate, found cats with flea infestations, trips to Costco, fixing ancient cars, stepping on lego bricks, work travel, hamster chasing and keeping up with family that is spread across the world. And, of course, just growing.

This year, however, we decided to throw a little extra chaos into the mix with a spontaneous garage fire (a real fire- with flames that broke windows and needed multiple fire engines to quash,) a giant tree that landed on our roof in the middle of an ice storm (followed by more than a week of electrical black-out), and a close family member with cancer.   

One might think us unlucky, but in truth it seems that while we seem to attract more circus-like drama than some others, we also seem to have nine-lives, cat-like. Each one of these events could have been disastrous but none of them were. The house has been put back together and the family member is pronounced cancer free. Oh, and Kevin got hit by a car while out cycling. He bounced skillfully off the windshield escaping with just a bent wheel and a bruised shin.

Here’s the regular circus that is our life! Note the giant tree on the right and the big fire in the middle. The rest is just our everyday.

It is against this backdrop that I celebrate the two-year anniversary of the accident that could have been so much worse. While the circus of life has whirled around me, I have been slowly plodding through a tunnel of recovery from a broken neck, back, nose and leg and head injury. This one to two year epilogue does not have the drama of the first year and (spoiler alert) there is yet to be a storybook ending, but I continue to write for a number of reasons:

1)   It helps me to manage my feelings, to make sense of what I learn and experience, which in turn helps me to move forwards.

2)   It holds me accountable. The act of sharing the story spurs me towards ensuring I continue to make progress.

3)   For some reason, I need people to know what’s going on underneath- that it’s still a struggle. At this point, there is nothing to see. There is no limp, no obvious scars, I no longer look fragile. Self absorbed as it may sound, I need people to know that what they see is only part of the story. Maybe they will cut me some slack for not showing up to that thing, or for not staying late-or for requesting a special chair.

4)   Over the course of my journey I have started to pay attention to the fact that I am far from alone in my struggle. Millions of people suffer from chronic pain or long-term diseases or mental illness or loss.  Maybe there are a few things inside my ramblings that might be helpful to my comrades in arms.

Audrey deWys Photography

Until a couple of months ago, I was beginning to lose hope that things would ever change but then, on the back of an extreme test, an intense world work tour that took me across four continents, I feel like I am emerging from the shadows.  The constant electrical headache at the back of my head is just a little bit less, the nausea is not quite so nagging, I can hide from symptoms with activity just a bit longer, deal with social situations just a bit more comfortably and I don’t need to nap quite so often. (Although, please know, I still believe in naps). Once the acute phased of physical injury passed, dealing with the head injury and chronic pain swamped me, I felt like managing them was my full time job.

I still feel far from the person that fell 8 feet atop a VESPA moving at full speed onto train tracks that September morning.  But, at this two year mark, despite the fact that I still have many symptoms, and that many head injury specialists say that most of the recovery takes place in the during this period, for the first time in a long time, I feel optimistic that the new me can live a big and busy life. It’s likely be a different life from the one that was on the cards, but I am starting to believe that maybe it could be a better, more balanced and more fulfilling one than I had planned.

Symptoms, Treatment and Beyond

So let’s start with the crappy stuff.  Overall I still suffer from a range of symptoms- all of which I am constantly aware of, some of which cycle in and out and most of which mean I have to make small adjustments to my life. Bright lights, loud noises, screen time, traveling through space (driving, trains, biking) busy streets, complex conversations, multi-tasking, work days longer than seven hours all trigger migraine-like symptomsI have largely learned to live with chronic neck and back pain but I am very particular about what kind of chair I sit in (I swear some chairs have been made as torture devices) and how I travel.   These spinal issues in combination with vestibular issues and the after effects of knee injury mean that my extreme sports days are over and that running, high heels and even yoga are not a great idea. I miss high heels. 

The weirdest effect is that I can no longer put my knees together when I am lying on my side, so I have to sleep with one leg hanging off the bed!

For those of you who are interested in the nuances of the physical symptoms I have linked to it here. But for the rest of you I have compiled the cliff notes below. (I’m not convinced the full and kinda boring description really makes for exciting storytelling.)

Here is the catalog of what ails me at this two-year mark, along with its level of annoyance.

• Post Traumatic Migraine: XXXXXXX

• Vestibular “trip switch”: (Vertigo) XXXX

• Vision Convergence insufficiency: (Blurry vision) XXX

• Degenerative disk collapse

• (Neck “mess” which causes both neck and head pain)

• Big metal plates in my back: from crushed T10: XXX

• Big metal plates in my knee: XX

The migraine symptoms in particular, while mostly low level, are insidious and if I’m not careful, can quickly escalate.  Sometimes I push through, but sometimes I succumb and go back to bed. Sometimes the distraction works, other times it doesn’t.  If I am running on adrenaline (a deadline, or I am facilitating or otherwise stressed out)- then I can keep moving. The tough days are when I have a lot of screen work to do. When I have a mountain of PowerPoint or email, inevitably the headache slowly creeps over the top of my head and the nausea seeps down my windpipe. On days like this, when I cave in and lie down, the back of my head is so sensitive as it hits the pillow that my hair hurts and my neck is full of knots. Thanks to some great recommendations, I have discovered the joys of tiger balm and ice on the forehead in these situations.

But these episodes are getting less frequent and easier to recover from. A year ago I would automatically feel disgusting after one big day, now I can go for two or three days of full on intensity (e.g teaching, traveling, family occasions) before I need to back off.

I have also noticed that the volume of my discomfort is linked to my cycle. I have one week a month where I feel pretty good. During this week, I often forget about what the bad times feel like. I see friends, I do stuff. I make big commitments during this week that I then have to fulfill for the rest of the month! (Note to self- stop doing this.)  On the flip side, I usually have one week which is much more difficult.  The pain and nausea are much louder and closer to the surface and the boring chronic pain of my injuries is ever-present. A few minutes concentrating or walking in chaos can make me really uncomfortable. I can really feel the metal in my back and knee and my neck feels constantly like it needs stretching.

The other two weeks are somewhere in between, and often more activity dependent.  During these weeks, if I am careful, if I pace myself, keep noise, crazy sound and screen-work to a manageable level and if I keep on top of the self-care routines, then I can live a pretty normal life.

There are no miracle cures for these long-term symptoms, instead it’s a recovery by inches, in which I work with an awesome multi-specialty team at NYU, chipping away at them bit by bit. At this point we have got to a treatment cycle of epidural steroid injections, Botox and medication combined with lifestyle modifications of celebrity hat and rose-tinted glasses, anti-inflammatory diet, regular exercise and strengthening, meditation (I wish I could say I managed this one regularly, I would sound so much cooler) and an understanding of the psychology and mechanisms of pain.

Each treatment helps just a little bit and taken together with the most important factor –time--mean that I start to function.

One of my most important tools to manage my life is living behind my super-cool glasses! In the top middle, I am at the movies with noise cancelling headphones, on the bottom right I am watching an action movies at home. But the big thing to notice is that last year I looked miserable in my glasses. This year not so much

Miraculous Mind Shifts

While I continue to do the work of working on physical symptoms, the progress is slow and there is no guarantee that they will ever go away. But, broadly, I am learning to live with them. I know that as long as I am sensible (hmm- being sensible has never been my strong suit) bad days will give way to good days and that distracting myself from the background symptoms is the best course of action.  

I have learned, that a-lot of the battle is mental- that how I perceive my own health and pain have a massive effect on how it actually feels. 

This is both exciting and upsetting as I come to terms with the fact that although my pain and discomfort is real, I do have some level of control over my quality of life.  It’s an incredibly empowering thought in periods when I have the strength to go at life with gusto-but it takes discipline.  

On the flip side it’s pretty disheartening on bad days, to admit that perhaps it is my inner victim that is taking over and that if I were working harder, there would be less pain.  On those days, in truth, I want all the psychology of pain theory stuff to go away. I wonder if those clever psychologists types have tried to control pain themselves just using a positive mental attitude, some articles about the biosocial basis of pain and a few deep breathing techniques. Every. Single. Day.

However, I do want to describe two pivotal moments in my recovery that were entirely mental and that have really helped me to take a massive leap forwards.

 The first occurred last fall, during a period of time that I was really starting to feel sorry for myself. The first anniversary of the accident had passed, the brain injury nausea and sensory flooding were making me tentative and the constant chronic pain in my neck was making me tired and grumpy. I had pulled back from work to see if it would make a difference (and I after ending up in bed for several days unable to life my head after pushing too hard) and was doing less physical exercise following my attempt to do a mini triathlon in the summer of 2017- which resulted in me feeling much worse. I was working hard on the idea that the best plan was to have no plan- but was not finding it easy. I had been discharged from vision and vestibular therapy- but didn’t really feel better. (Insurance cuts off after 24 sessions.) But the one thing I was doing was walking. I had taken to walking up to six miles on a regular basis. As I walked, I listened to audiobooks.

The Old Croton Aqueduct. This has played a leading role in my life both before and after the accident

One gorgeous fall day, as I walked along my usual route, a tree covered aqueduct that runs parallel to the Hudson River between Yonkers and Tarrytown a torrent of memories hit me that pulled me out of my funk. I was walking along a path that I know every inch of, a path that I have run along (pre-accident) more times than I can count. I know every tree root, every slight dip and incline and every landmark, so my mind was free to shift into alpha-the type of thinking that has been associated with our most powerful kinds of mental energy. On this particular day, I was listening to a book that was, in part, set in West Africa when it was as if a door of memories had been unlocked. As a fearless twenty year old, I had spent a summer doing voluntary work in Ghana, and a there was scene in the book I was listening to that described a West African village. The scene pulled from my consciousness vivid memories of my own. Memories of Gold Coast beaches occupied only by fishermen and rural dusty villages outside of their reach of modern amenities with roadside sellers and sun baked huts. Over the next few days, as if unloosened by the first set of memories, other life experiences jumped into my mind and hokey as it may sound, all of a sudden I became aware of the richness of experiences I have already lived. I became aware that whatever happened in the future, my technicolor past was already pretty awesome.

Instead of trying to describe how I felt in those days,  (which sounds even more hokey reporting it now) here is what I wrote a few days later:

Over past few days visions of the big life that I have lived keep coming to me in snippets- like one of those kaleidoscopes, each memory overlapping the other, clamoring for recollection.

 A few hours after the walk (see above) my adventurous past was reinforced in a conversation with the children about night-time raccoon spotting. (We have a family of raccoons that live in our drains!)  In discussing how easy it is to see the raccoons at night because of their gleaming eyes, I was reminded of an encounter with alligators in South America. During a river trip on an Amazon tributary in Ecuador, a swim at dusk was interrupted as my travel companions and I slowly became aware of multiple pairs of shining eyes on the river bank- eyes of alligators that only really become visible in the dark. And with these incredible life memories freed, other life experiences began to flood in.

So while the window is open and while the colorful images are jumping on top of one another, I am writing them down, so that next time the dark shadows descend, and I know for certain that they will, I can relive and draw checks on the bank of stories, experiences and feelings that make up my life.

In those dark days I want to be able to remember that I have traveled around the world in first class and once stayed in the presidential suite in the Fairmont in Singapore, a magnificent room that took up a large portion of the penthouse floor. It was a suite that included a grand piano, a sauna and a view over the harbor. But equally, I want to remember that I have slept on night buses while traveling across mountain passes in Latin America and trains in Eastern Europe. I have lived like a king in a South African game park, with a glass bathroom that overlooked elephants in their watering hole, our own servants and private guide but have also camped along side tarantulas in the Amazon basin, black bears in North America and got caught in the middle of riots in Mexico City. I have smoked too much weed in Jamaica, drunk too much red wine in Rome, been to warehouse raves in London and stayed sober close to home. I have visited dusty ancient mosques in Egypt, attended Rosh Hashanah at synagogues in Manhattan and lived across the street from a 12th century Abbey.

There have been jobs that seem glamorous, that involve wearing high heels and lipstick and commuting to Park and Fifth Avenue in Manhattan, but also times when I was paid minimum wage to mop the floor or stand over a vat of hot donut oil for eight hours straight. I’ve had the chance to study subjects just for the love of study and I’ve worked all night on mountains of PowerPoint just to find out that the presentation is cancelled. I’ve smelt the excitement that comes with performance, be it singing in dark New York cabaret clubs, at evensong in English Cathedrals or experimental dance in experimental venues. I have equally felt the power of leaning on the shoulders of fellow wounded souls as we share our experience, strength and hope in support groups in church basements.

And through all of it I have felt the feelings that are part of the human experience: the incredible pain of childbirth and the difficult to describe love and joy that comes with being a parent. I have felt the deep searing love that rages like a house fire damaging everything in it’s wake and a softer love that melts your insides slowly like warm chocolate. I have dipped, more often that I would like into a dark pit of depression, feeling hopeless and useless and in the dark, but I have also experienced the incredible sense of belonging that comes with being part of a family and what it feels like to know that someone else has your back. And I have known a moment when everything went dark and light and I didn’t know if I was alive or dead but did not feel afraid.

 Below are just some of the memories that triggered the kaleidoscope.

By writing this down, by really internalizing the idea that the life I have already lived will provide ample ammunition for stories to my grandchildren (even if I spent the rest of my life sitting in a chair) I was jolted out of the downward spiral of self-pity that might have been.  Instead I had the strength to execute the “plan of no plan”, walking up and down the aqueduct, working when I could, drinking coffee with friends when I couldn’t, hiding from the boys when they got too noisy and generally embracing an existence that seemed small and quiet, safe in the knowledge that it was just part of my story.

The second pivotal moment is equally other-worldly and random, in that it came in the form of a dream. A dream that told me that I should stop being tentative, that it was time to put my fear aside.

At this point you may be worried that I have been captured by a cult. I have not, I promise that I am still the same cynical, sarcastic me. Although I am learning to listen better to the universe, for example, I think I have well and truly understood the message that I shouldn’t ride mopeds

The dream came right at the end of 2017, more than a year after the accident and on the back of a series of dreams I had been having.  I had not been dreaming about the crash itself but the hospital part, the pain part, the not being able to move part. In sleep, I had often been finding myself on a gurney in a corridor, or in some kind of imaging scanner or on an impossibly high hospital bed. The scene was always swathed in crisp white cotton sheets.  

However, during the dream in question, I was not the one swathed in sheets- it was someone else that had fallen and suffered devastating injuries and I was helping to transport her to the hospital on the top of a double decker bus. (Obviously!) It was on the top of this double decker bus that someone I haven’t seen in several decades, came by and told me to stop being afraid- that I needed to start to attack life again.

It was a message that struck a chord, one of those dreams that I couldn’t shake. I think because it made me realize that I had begun to get into a pattern of holding back. I became aware that while I had reached a certain level of peace with my new normal, I was also starting to take it on as a role. I had begun to feel guilty about the days and moments when I felt OK- becoming reluctant to let myself feel joy, to laugh raucously, to enjoy the moment or sometimes even to admit out loud that I felt OK (if only for a few hours.) The dream made me realize I had become afraid that by admitting to flashes of betterness, the world would expect me to go back to my old life, the non stop, busy all the time whirlwind that I was definitely not ready for and may never be.

I needed to figure out a way of being both bold and careful at the same time. I needed to move the the line, set new boundaries and see how far I could push.

2018:The hard slog towards betterness

Testing and learning: experiments across four continents

And so I entered 2018 with a bit more determination. Still with all the symptoms, but with a willingness to try and live along side them. And, in line with some of the newest thinking on chronic pain management and neuroplasticity, I decided to push through them a bit more, employing a test and learn approach and (perhaps unwisely here and there) using the “grit my teeth” method that I had used in physical recovery. I was also very much aware of the more traditional theories around brain injury that say that most of the recovery takes place in the first two years, and so my time was running out.  Of course much of this “push through it” mindset has revolved around my work, because that’s just the way I am wired

Over the period since the accident, I have of course, considered that I should be thinking about a more suitable, gentler career.  Indeed, on any given day, I might be tempted to plan a future as a fortune teller, a librarian or an astronomer, anything that means I can sit mostly alone in a dark, quiet room.  I might also have thought about becoming a full time, stay at home mom, had I not tried that a few years ago and realized that I was terrible at it. Much as I love my kids, we are not destined to spend all day together, plus the physical and mental work that comes with that job is just as difficult as anything else I might consider- such as housework (tough on my vestibular system) loud boys (sensory overload, emotional stress), making sure each kid is in the right place with the right stuff (multi-tasking) being the family taxi driver (again tough on the vestibular system).

I have read stories of trauma survivors that have epiphanies becoming therapists or starting foundations. This has not happened to me, instead, I have felt compelled to stick at the same old stuff, making the work thing work and knowing that it least in this career I have some history and that by showing up each day it will eventually get better. Plus, it seems much easier to chip away at something I already know how to do- even if that doesn’t sound very transformative.

And so, work is both the easiest and the most difficult thing for me to do.  Now twenty-five years into my career (gulp), I have spent most of my adult life working, so it’s kind of second nature and really the only thing I know how to do. In addition, as an activity, it’s relatively still and quiet. Conference calls and long stretches on a computer are difficult, but meetings (as long as they are not under florescent lights) are generally comfortable as are short bursts of computer time. So a work-day which is a mixture of meetings and hallway conversations, punctuated with email and reviewing work is pretty straightforward and the flexible work schedule that has allowed me to take time off when I need to has been an incredible safety net. Although in practice, I have been working 30-40 hours a week since February.

However, this straightforward routine is not as simple as it seems, and even a regular work-week can be fraught with mini obstacles that need to be jumped.

Firstly, I have to commute into New York City, though one of the world’s busiest train-stations. (And, if I stay home, I have to do the conversations via conference call, which are harder for me than face-to-face conversations.) Secondly, in the always-on digital economy, multitasking, constant connection to a screen and unlimited stamina are really the stand-out skills, none of which I do well. Sensory overload and some still lingering cognitive deficits quickly hinder my multi tasking skills. Light sensitivity, eye strain and other migraine triggers may or may not cause a reaction to screen work re and I have about seven hours of stamina in me for work each day- before the alarm system starts to kick in. This is almost considered half day in the 24/7 economy. Thirdly, one of the things I am known for, my particular niche of expertise, is leading and facilitating workshops, multi-day or large audience events that are very often out of town. Obviously these pose a challenge. Fortunately, these kinds of assignments require a good dose of adrenaline, the wonder hormone that numbs all pain until the end of each day. Powered by this natural painkiller, I can easily run a one or two-day event, sit with a client for 24 hours straight, or present to a big crowd. But if it turns into a longer workshop or I don’t get time to reset in a dark room afterwards- then it can take weeks before I can settle back to a comfortable routine.

So between January and August, I have undertaken multiple experiments, figuring out how far I can push, knowing that as long as I can get rest at some point, I am not doing myself permanent damage. I have continued to have the incredible support of a work team that has been generous and understanding. They are quite used to meeting in the dark, not being able to reach me because I am napping or putting me into a car service when things get too much. With their support and with constant attention to being bold but careful, I have been called upon to help plan, design, create content for and then physically lead or support workshops and conferences across the US, in Europe, Latin America, UK and across Asia. The preparation for and recovery from these events is always intense- even in full health, but for me, they require some extra energy, evenings spent with tiger balm and icepacks and big doses of both humility and humor.

Sometimes my experiments failed. I went back to old patterns of behavior forgetting about the boundaries I needed to set and trying to do much too much. I had one particularly harrowing week in early March when, already feeling beaten up by my first really long week since the accident, the North East corridor suffered an ice storm. Just as I was going into the final review for a conference with the client, I was alerted by our poor aupair, that a massive tree had fallen onto our house. I had just a few minutes to call emergency services, a tree surgeon and the insurance company before the meeting started, and by the time we were finished virutally the whole town was out of power, so we had to evacuate for the weekend. 48 hours later I hopped on a plane to the client conference for two days, flew back to NY to run a workshop and then back on a plane to complete the conference. After clocking a grueling eighty-hour week, it was patently obvious that my body and brain was an incredibly long way from being able to manage that kind of intensity (Actually by hour 45 I was constantly nauseous with a headache that felt like some kind of alien was trying to escape my brain and crying on strangers in odd places … but by then I was committed). Having said that, it was a useful experiment, because it just served to strengthen my resolve to balance pushing through with self-care. That I cannot do what I did before, but instead I need to keep my work schedule to a reasonable level. When I am tempted to say “yes” to more than I can do, I need to keep in mind how I felt at the end of that marathon.

The pain came with me on this road-trip to South Carolina with the boys in April.

In addition to pushing through the pain at work, I also vowed to take the lessons from my kaleidoscope of memories and find energy for life experiences- and again, it took a few tries to get the balance right. In April, I took the boys on an overnight train from New York to Charleston to visit my friend at the beach in South Carolina for Spring Break. I was looking forward to it being a big moment, my first vacation and visit to beach since the accident, a milestone of feeling better. But I was sorely disappointed when all the symptoms came with me. During the excitement of the Amtrak roomettes, with chairs that converted to bunk-beds, checkerboard tables and foldaway sinks my continuous head pressure and just enough to piss me off back and neck pain distracted me. As I walked along the long stretches of beach, it was accompanied by the familiar nagging nausea. I had become accustomed to all this in my everyday life, but I had imagined that because I was on vacation, the symptoms would go on vacation too.

And so after these back-to-back lessons, I quickly needed to learn to adjust my expectations, while still put myself out there. In May, while in the UK for work, I consciously prioritized seeing old friends, but one on one, in quiet settings. In July, while in Thailand I carved out time to visit temples-even when I didn’t feel like it and knowing that it might make me feel unwell. I was so glad I did.  In August a client team needed too much from me, and I had to do the most difficult thing and simply ask for help.

As the ultimate celebration and milestone in recovery, our family took a trip to Paris and Amsterdam- for the last week of the summer vacation. I felt, for a moment bummed out that I could only do half of the things that the rest of the family did, before I had to retreat to our hotel. But then I remind myself that in that portion that I did manage, we had an incredible time. The symptoms- while present- were low enough for us to be able to wander backstreets of St Germaine, Le Marais and The Nine Streets, climb up the Eiffel tower and the hills of Monmartre, take boat trips along the Seine and the canals and eat mousse-au-chocolate for every meal. One year ago, all I could manage was a three-day break to Lake George and I spent a big chunk of that in bed!

Images of getting comfortable with pushing myself- but staying slow enough to keep smiling. There were alot of naps that you can’t see.

The final wave: finding joy in unexpected places

Slow TV, non-sugar baking and the beige bunker

One of the most unexpected things that happened in this journey is a personality shift to become more introverted. It’s not that I don’t enjoy the company of others, it’s just that with noise, bright lights, crowded rooms and complex conversations being triggers for symptoms, I am more likely to seek out quiet. For social events, I sometimes dress up and do a fly-by for a party, just to show my face. But more often I will prefer to meet a friend one-on-one choosing an outside table or simply order take-out at home. Meanwhile, I have just started to be able have the stamina to both cook and then actually serve and enjoy the food with a small group in my home— so maybe there is more entertaining in my future.  But in the meantime, I have discovered the joys of more prosaic activities.

For example, in 2018 I have conquered my fear of baking. With the help of cook-books for simpletons and watching food TV, I have managed to tackle some previously intimidating projects such as Key Lime Pie, cakes that require water baths and even healthy desserts containing only nuts, berries and maple syrup. Even better, all of them ended up being edible and in fact liked. For someone fond of instant gratification, the experience has been—well--gratifying (except for the clearing up part- that part is noisy and messy).

For entertainment, I have built up a large repertoire of what I like to call “Slow TV”. I have worked my way up from the slowest, which mainly includes British detective series set in small towns or the near past, to the more engaging character driven drama shows that can be found on HBO, Amazon, Netflix etc. For Friday night movie night with the boys at home, I can even manage an action movie-as long as I wear sunglasses! I have also really re-discovered reading, both in written and audio format. And with the help of large print text and a Kindle with a dark background, (it’s amazing how teeny words are in a printed book- have they always been like that?) I have worked my way through a balance of important reads as well as countless works of junky fiction, humor and beyond. Each day, I have had pretty much had all the sensory input I can take by about 9pm —and so retreating to bed with a good book has become one of my favorite things to do. The trick is to keep my eyes open until ten. I’m a very exciting evening companion.

Of all things that a head injury likes best for recovery--it is sleep.  (Besides, it has become very hip to say you prioritize a good night’s sleep)

Meanwhile, inside our busy, noisy house of boys where there is loud wallpaper in every room and almost always a new Spotify playlist under construction, a mock battle of super-heroes or a real battle of wills in progress, I have managed to create myself a haven of quiet. A dark, cool room in our basement decorated almost entirely in beige.  It started as a project to move our office from the attic to the basement –but eventually I realized, that I was creating a retreat.  So now, I can be undisturbed by sensory input, hidden away in a difficult to find nook of the house, in a space that is so sparse that my husband calls it a bunker. This suits the new introverted me, as it means no one else wants to visit!

I don’t talk about my awesome boys much in this essay. But of course,as well as being the cause of much noise and chaos, they are a they are a constant source of joy. One of the most remarkable things is how protective they are of me. They are well aware of what I can and cannot do, hug me tight when I’m not feeling great, police my sugar intake(!) and celebrate the milestones along the way.

Finally, on the fitness front, I have taken a bit of a U-turn. Through the summer of 2017 one year after the accident, I had pushed myself hard physically to see if I could manage a (very mini) triathlon.  I had imagined that completing the (very mini) triathlon would feel like a triumph, a symbolic moment of return. However, when the time came, it didn’t at all. The swim immediately made me seasick which was then reinforced by the teeny bike ride. My limpy run felt kind-of pathetic. The whole thing felt like a big ego trip gone wrong and frankly just served to remind me of what I could not do. So, I have put aside the idea of triathlons or skiing or any other extreme sports in favor of a kinder, gentler approach. Walking and eating well are now my go-to healthy activities.

Walking serves as a triple-win, as it helps me to move (I still strongly believe in the mantra “motion is lotion” staying still is the worst thing a person in pain can do), and also helps me to indulge my desire to be alone and listen to a great book at the same time.

After reaching an agreement with my pain management doctor, that for now, we should pull back from any additional treatments he sent me out the door with the suggestion to try an anti-inflammatory diet. Since then, I have found myself joining the hoards of women my age adopting one of the Brooklyn trendy Paleo, Keto, eat nothing really good diets.  There is no butter, no red meat, no sugar, no white flour. As I say, nothing good. And, I have figured out a couple of places where I can exchange ½ of our monthly mortgage payment for some sugar free treats that just about satisfy my sweet tooth in between.  But, I am not obsessive about it, and allow myself treats on a Saturday and suspended the whole things while visiting France. So worry not, my cult-free status is intact. I am not going to become an evangelical proselytizer for these diets anytime soon, but I do believe that it is another of the things that is making a small contribution to lifting the shadows and letting me see the world again.

So as I sit here at the two-year anniversary I do so with a mixture of hope, resignation and I will admit some fear.   Just a few days ago, I shifted my ‘freelancer- hourly schedule” back to a four-day-a-week real job.  While this is largely a symbolic move, as I have been working more than 35 hours a week since February, it feels like a big deal, as it’s a re-commitment back to my life as it was, a signal that maybe it’s time to get back to business.

But I make this commitment with trepidation. This is a recovery that comes in small, sometimes imperceptible shifts and there are no promises of returning to a pain free life.   Instead of focusing on a big outcome, I have to focus on each day that is in front of me. I have to do the work of moving one more inch forwards, work that sometimes takes effort that seems disproportionate to the result.  Often I fear that I don’t have the strength, that I will give in to the impulse to give up.

On those days I have to employ the two miraculous mindshift lessons. To put aside my fear and attack the day head on, knowing that I am not alone in my struggle. And more than anything, I need to remember all the amazing things I do have, to enjoy the experiences and moments along the way, to carve out time and energy to maximize the present and to drink in the big chaotic life that swirls around me. Because, it is these moments that make up the rich fabric and stories of our lives not the places we seek to go in the future. And, I know that this September, I am able to attack life more, be more present for others and have more confidence and joy than I did a year ago. Plus I am celebrating my new “superpower”— Perspective.

Perhaps finally, after two years, the accident can be something that starts to move slowly into the past, just one of those moments that makes up my story, as opposed to being constantly and jarringly in my present

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Massive thanks to the gang that helped to put this together. Kim for her advice on commas and giving me the support and confidence to write. Audrey for lovely pics. (Not the iPhone crappy ones or selfies of course- those are mine.)

We actually took a whole bunch of pictures actually, celebrating an emergence from the dark. Go take a look here “Emerging”

I can’t figure out how to link to Audrey deWys Photography site from there- but if you want the link here it is!

Audrey deWys Photograph

Hastings Train Station now has a ‘No Motorized Vehicle” sign. I like to think of it as “my sign”.

Not quite the one-year celebration I wanted.

And so it comes, the one-year mark. The anniversary of the day I almost died by driving my VESPA onto train tracks.  This was the point at which I had pinned my hopes of returning to normal. At one year, I thought I would have my energy back, I would be back to social activities with my career going full throttle . I would have replaced running with hot yoga or barre and would be keeping up with the family schedule. But sadly the actual story is not going according to my planned narrative. One year after that fateful day on the train tracks, when I broke my back, neck, leg and nose and sustained a head injury, I am still getting to know the new person that inhabits my life, trying to find the mental stillness and acceptance to deal with a path forward that is unknown and plagued hourly by symptoms that make life uncomfortable.

While the first part of this story was full of drama-this part is not . In this part nothing really happens.  My physical injuries have continued to recover steadily, so that my broken leg, nose and back are now background noise. While I still get daily pain and struggle with many physical tasks, or sitting for long periods, I am largely at peace with those injuries and am in control of driving continuous improvement via physical therapy and exercise. Instead the current villains of the story are my head and neck, and the post-traumatic concussion syndrome that revealed itself after the orthopedic injuries started to heal.

Recovering from mild traumatic brain injury is like living in a holding pattern.  Doctors promise that over time, (they won’t say how much) things will get better.  They tell me that I should not expect to see an improvement in a linear fashion, that there may not even be improvement week to week, but that month to month, if I compare September to August, September should be better. The science (like the brain) is squishy. It’s the last great frontier of human understanding. And so, I am wandering around, with millions of others who suffer from mTBI (mild traumatic brain injury), in a foggy landscape, with only a sketch map, trying desperately to position the whole experience as some kind of adventure.

So what does this post concussion/ mTBI thing entail?

For me, it means that I have a whole load of seemingly unpredictable physical and mental symptoms.  I am nauseous for about 50 % of my day.  My brain says no to bright light, loud noises, concentration, moving visual stimulus, multiple sound inputs, stress, emotion and movement. It feels like someone is zapping an electric current through the back part of my head.  I get easily overwhelmed by stressful or noisy situations and suffer from several different types of headache. One of the headaches is akin to a hangover headache- pounding through my forehead, which is particularly egregious as I haven’t had a drink in several years. Another is in the back of my head and results in a continuous aching in the big bones that make up the back of my skull and sensitivity in my scalp. It means that lying on a pillow is uncomfortable, putting in a ponytail is painful and that sometimes my damn hair hurts.

In practice this means looking at a computer or cell phone, spending time with more than a couple of people, driving, concentrating on a conversation, watching action TV,  attending anything in the kids classrooms,going to a movie or slightly loud restaurant, walking around in NYC, spending time in the sun, reading, writing, ( I have done this in 15 minute bursts!) exercising, housework, sudden noises, trying to do complex cognitive tasks- e.g math and even beating an egg make me feel ill.  It means that most afternoons it feels like someone has attached weights to my head. I can put aside the discomfort and power through if I have to, but then suffer a rebound effect that puts me in bed with nausea, headache and general fogginess for several days. So, broadly, I live like the average senior citizen. I like early starts, one on one chats, procedural TV shows, coffee and cake dates, afternoon naps, books with large print, country walks, early bird dinners and going to bed by 9pm. Actually the AARP (American Association of Retired Persons) keeps sending me mail, so perhaps it’s time to surrender to the lifestyle completely.  Meanwhile, I avoid tight ponytails where possible and wear a baseball hat and sunglasses. Sometimes as I walk around,I like to imagine that people think I am a celebrity in disguise.

Many different baseball hats and disguises. If I am honest I don't look like a celebrity at all!

Rose tinted glasses and the red bead

Of course, in conjunction with an army of doctors and therapists I am taking a meandering path forwards.  In recent years, there has been much public discourse on the subject of brain injury and concussion, with the initial focus on football players and veterans. As a result the science is moving forward rapidly and specialist concussion clinics are opening to deliver a “multi-disciplinary” treatment approach.  I am lucky to live near New York City,  so that I can take advantage of one of these specialist clinics. I am under the care of the NYU concussion center where I am treated by physiatrists, neurologists and multiple therapists. At one point, when I included the teams that were helping with my neck and back injuries, I counted 13 health professionals that were involved in my treatment

 Concussion and brain injuries are very complex and I have learned that many diverse symptoms can be typical. And, while there are similarities between one post-concussion sufferer and the next, every person has a unique experience.  In my case we did a series of tests that revealed:

Vision disorders: While each eye works just fine, they don’t work together well.  My brain has forgotten how to converge the two images together properly (Convergence insufficiency) and very much dislikes refocusing after each eye movement.  (Saccades/Pursuit Dysfunction) In a world where we make more than 10,000 eye movements each day, this is problematic. During the recent US open, I discovered that my worst nightmare is watching a tennis match on TV. Tracking and focusing on a small object from side to side quickly made the electric circuits in my brain go haywire.

Vestibular disorders: My inner ear had become damaged such that the free- flowing crystals that usually tell the brain where it is in space had become stuck. This caused vertigo in response to over-stimulation and movement a condition known as BPPV. When I began my treatment- it was determined that I was a "fall risk"- i.e despite the fact that I like to think of myself as co-ordinated, I walked around like I was drunk most of the time.

Cognitive weakness: Thankfully tests have shown that mainly, my brain is functioning well cognitively. There is one exception, information processing- which can make me seem forgetful. This means that I have to concentrate harder on whatever information comes in for it to be retained. Concentration, as previously mentioned, makes me physically sick. Or maybe- because concentration makes me physically sick, I don't pay as much attention to incoming stimulus. All I know, is that I am allergic to thinking.

Cervical stiffness and arthritis: Following the break that I suffered to the bone that joins my head and neck and multiple ligament injuries, there is still some swelling and scar tissue. This may be causing some blood flow reduction to the brain and or putting pressure on the occipital nerve and thus causing referred pain and nausea. It's likely that this is also causing the "hair-ache".

Migrainous response to stimulus: This one is the most complex. Essentially, the impact of the initial accident likely caused some severing of brain axons – i.e. cellular level damage. This set off a reaction inside my brain where it has essentially gone into a state of emergency. Everytime a trigger stimulus is detected (e.g light, noise, concentration etc.) the brain calls in the National Guard who stomp all over everything causing the nausea and headache (sort of….)

Each one of these very nuanced conditions requires its own set of therapy to help rehabilitate and retrain the brain.  I have at least 3 types of therapy and one doctor’s appointment each week and daily exercises, which together add up to almost ½ of my time.  Everyday I am required to do the following seemingly simple but actually torturous exercises:

·      Walk 100 feet looking side to side and every 2 steps X3.

·      Repeat looking up and down. Explain to neighbors that I haven’t gone mad yet.

·      Focus my eyes on a series of red, yellow and green beads on a string.

·      Fight with the cat for possession of said string. (It really is a perfect cat toy)

·      Move my head side to side while looking at a stationary letter B.

·      Try to ignore the weird clicking sound inside my head as I do above exercise.

·      Read a 10 by 10 grid of random letters moving between my cell phone and letters on the wall.

·      Watch movies of grocery stores, or subway trains or optical illusions and other disorienting environments. https://www.youtube.com/watch?v=YWaGzTFRlWg

Just some of my exercises, and my rose tinted glasses.

Honestly, I hate these exercises. They all seem so easy in theory, but I struggle with them.  For someone who hasalways been able to rely on my body and mind to do whatever I want it to, the idea that I can’t do these remedial tasks is very frustrating. I have bad dreams of the nasty B and what I affectionately call the “fucking red bead”. Some weeks I tantrum and don’t do the exercises at all.  Obviously that’s that not a very helpful way to progress.

In addition to the exercises, my vestibular therapist has undertaken multiple maneuvers (The Epley Maneuver https://en.wikipedia.org/wiki/Epley_maneuver) to retrain my inner ear system to understand where it is in space. This means that I can now walk in straight lines and on good days around corners and up and down hills.  My neuro-opthamologist prescribed special glasses with pink tint lenses. These lenses not only soften the light (which means less nausea) but they also contribute to my rock star look and are a great conversation starter. The joke of seeing the world through “rose tinted glasses” never gets old, but more than that- when people look through my glasses, they are surprised at how pleasant the experience is.  Seeing the world with a rose tinted attitude is more of a challenge.

The idea with all of the exercises and therapy is to re-habituate my brain. To identify the triggers (light, sound etc.) that cause problems and then re-expose the brain little by little to these tasks, creating new pathways.  It’s like a combination of  allergy diagnosis and fitness training.  Triggers are often hard to identify because they might be a combination of stimuli (e.g light + stress or movement+ noise). Once the triggers are identified then the “retraining” process begins.  As with physical fitness, the idea is to gradually increase strength. Being an all or nothing kind of girl I find this particularly hard.  

 On the other hand, as a student of self, I have found it super interesting. My way to manage this phase of my recovery is to learn as much as I can about this emerging science. (Sometimes to the point of obsession. I even had my neurologist print out some incomprehensible clinical papers- which my healthy brain would not have been able to make any sense of! http://journals.sagepub.com/doi/abs/10.1177/0333102416681571 ) I had a particularly enlightening moment in neuro-cognitive testing when I was asked to remember a list of random words or to repeat numbers backwards. I immediately felt the physical symptoms of nausea and headache.  However, in the same session when I was asked to fill in one of those personality questionnaires. A questionnaire with crazy questions like-

 “ Sometimes I feel like I want to have a fist fight”,

 “ Sometimes I’m not sure if I’m ashamed of being bashful” (?).

Even these confusing backwards questions did not result in the same nausea and head vice response. This immediate cause and effect response to hard cognitive tasks was actually gratifying as it proved to me how real the issues are and helped to further my understanding of what I can and cannot do.  The power of what these tests did to my brain were further illustrated by the fact that after 2 hours of testing, I had to go home to bed and did not recover properly for several days.

After several months, it became clear that the nausea was not going to go away with the visual and vestibular therapy and so I have been working with my neurologist on alternative approaches.   He has theorized that the nausea and headaches are a migrainous response caused by cellular level damage. Treatments have included high doses of anti seizure medication-which are proven to help migraine (sadly so far no effect) and anti nausea meds which have given me side effects of a kind of crawling sensation in my legs. Next up is BOTOX that will be injected into sites that include my forehead, base of my head and neck. Botox is one of the newest ways of handling chronic migraine; it works by disabling the nerves in the tissues that surround the brain and thus numbing the pain. Since the brain itself is a numb organ, i.e. it doesn’t feel anything, it is the muscles, nerves and blood vessels that are outside the brain that make migraine hurt or in my case make me feel nauseous. And even if it doesn’t work, there are obvious side benefits for an almost 45year old woman!

The most difficult thing to handle about all the treatment is the rate of progress.  Unlike recovery from injury in other parts of the body, where tissues literally mend themselves, brain cells do not spontaneously regenerate. Instead, a process called neuro-plasticity occurs. New connections are made between brain cells that create new pathways to do the job of the damaged cells. But they do this REALLY slowly.  Over months and years. Plus they only do this in response to hard work. This makes it incredibly difficult to track improvements.  Over the course of the last 5 months or so, my eyesight has become 20% better (but has about 2x as far to go) but sometimes I struggle to make words stand still on a page, the BPPV (vertigo caused by inner ear dysfunction) is theoretically gone- but any kind of head down pose (e.g downward dog) still sends me into a headspin and there has been little progress on the migraine treatment.

Although my neurologist is confident that I will get better, when I ask him when, he leans forward across his table, looks me right in the eyes and says empathetically,

“It’s impossible to tell.”

Making it work

If the hero of the first part of my story was my community, then the heroes here are my work colleagues.  After a month of trying to lie low, I realized that just going back and forth to doctors’ appointments and therapy was going to make me crazy and depressed.  I couldn’t bear for my daily activity to be entirely about being a patient. And so, one day, I wandered into my work place and my CEO's office with a ridiculous request.  I wanted to work just a bit, a few hours for a few days a week, when I felt up to it.  I will forever be impressed and be filled with enormous gratitude that not only did she work with me to come up with something that would work, she also championed the idea with peers and colleagues.  For an industry that has occasionally been held up as “what not to do” in the workplace, her willingness to endorse this progressive approach is very powerful.

Over the last several months I have worked between 10-20 hours per week, split between my home, the office and with clients. During this time, my colleagues, my clients and the teams that I have worked along side have shown incredible patience and compassion. Some days I have been all-in and ready to go, while other days, I simply haven’t been able to show up. When I have been unable to look at a screen they have printed stuff out for me, or created documents out of notes that I have written down longhand- on paper- with a pen. They have patiently waited for me to catch up when I have missed days, collected my forgotten belongings when I left them behind in the office, (a post concussive is very forgetful) rearranged in-person meetings to conference calls or found quiet locations when I have been struggling with light and noise sensitivity.  They have picked me up and put me into car services when I have crumbled under too much sensory input and have offered wise words of wisdom and support when I have become despondent. Clients have had to get used to seeing me in a baseball hat and my crazy pink glasses. More than anything they have allowed me to feel like I am being useful, that I am able to bring my expertise and, here and there, they have allowed me to try on my old life.

I have also discovered that with enough adrenaline (the adrenaline that got me through that 6 weeks in January and February) I can do pretty much anything. I facilitated a 3-day workshop for 20 senior marketers for 3 days in June, traveled to Mexico for a one-day workshop in July and stumbled my way through MCing a 4 day 100 person conference in August. Each time powered by a cocktail of adrenaline, anti-nausea and pain relief medication and caffeine, I was able to glimpse the old me. It was incredibly gratifying to know that I can still do it when pushed and worth every-bit of the profound rebound effect. Each time, I had to spend two days in bed nauseous and wiped out, for every one-day that I had asked my body and brain to perform.  But as my doctor says, my brain won’t get better unless I push it, and maybe next time, I will only spend 4 days in bed recovering and the time after maybe 2days.

My work often involves facilitating and leading large groups- not so easy when you think you might throw up any minute! But the adrenaline is a good distractor.

One thing I know about my chosen career,  however, is that just being able to perform well on occasion is not enough.  In the always on and rapidly changing world of marketing and consulting, stamina and a voracious appetite to keep up with what’s new are critical drivers of success.  Even in this digital age, it’s important to be able to jump on a plane any time to cultivate relationships and my current “allergy” to screens, reading and concentrating is debilitating, distressing and exhausting. So while I am incredibly grateful that my cognitive function seems to be mostly intact and it’s great to for be able to contribute to key projects, its clear that while working literally makes me physically sick, it’s going to be a long time before I can take on anything other than a very limited schedule.

For all but 2 of the last 22 years ( while I was having babies), I have been very career focused. While my family and my role as a mother to 3 fantastic boys are incredibly important to me, I have channeled much of my identify and self worth into work based goals and and have always been driven by a relentless need to push forwards, a need that borders on the workaholic. This means that I am finding it very hard to step back and take the time I need to recover, even though a year is not a long time in the grand scheme of things. I don't really know how to take care of myself or to give myself permission to be a different person,for now. On bad days, on top of feeling unwell, I get super frustrated. Frustrated that I I don't have the stamina to do the work that I had planned and neurosis that I am falling behind and letting people down. On other days, when I am feeling strong , I try to focus on how incredibly lucky I am to be able to have this flexible approach to my work and enjoy the downtime that comes in between.

Finding strength in friends, family and flowers

If physical injury is loud and dramatic, head injury is quiet and private; it’s much harder for people to understand.  With physical injury, there are obvious signs that everyone responds to.  In my case, this meant the neck brace, the leg brace, crutches, and bruising.  Now I look normal and so naturally people are relieved and excited to see that I am better.  Occasionally, I have conversations that go like this,

“ How are you feeling? Are you feeling better?”

“ Well, yes much better, but now I am dealing with head injury stuff”

“ Well you look great”

“ Thank you, but I feel kinda nauseous all the time and still can’t go back to work”

“ I am so glad that you are feeling better”

 At this point- it seems rude to reinforce the disabling symptoms that are still interrupting my life.  I will say this is not the norm, in general people continue to be incredibly supportive and understanding, but when it happens, it’s particularly jarring.  Of course, when I do see people, I am usually feeling better vs. worse, which re-enforces the idea.

Along with the fact that this invisible injury is harder for people to understand, comes the fact that I can’t tolerate groups, both of which mean that over time I am becoming more socially isolated.  In order to stay connected, I am learning the art of the “drop in drop out” for larger social situations.  I spend the enjoyable time picking out my outfit and getting ready, drift by for an hour and then leave as the nausea and head pain start to creep in. However, I am also conscious that I often have very little to give in social situations. I am far away from my pre-injury socially fun self.  I now feel like the needy friend that always talks about her own problems.  Meeting new people is almost impossible and I have been completely absent from the children's classrooms and an infrequent visitor to the side of their sports fields. As a result I am sure that the parents of new friends my children have met in the last year probably think of me as the snooty and aloof mom.

While, I have been unable to join many organized social gatherings, I am lucky to have a network of women friends and family that will spend one on one time with me and listen to my woes.  Thus over the course of the spring and early summer my social activity became walking with these good friends in our local nature as I slowly increased my mileage, helping to heal both my body and my mind.

Interestingly, on the advice of someone else who had experience with long term concussion symptoms, I have learned that I feel strong and hopeful outside in nature.  In the spring, I had the need to put my feet on British soil, to see my sisters, to visit my parents and connect with old friends. I spent the week taking in the best of British nature, walking in arboretums, along rivers, in nature preserves and visiting the grounds of country houses. I sat in cafes and gardens, drank endless cups of tea, and ate Victoria sponge, fat British chips and toast with Marmite.  I returned to the US feeling more grounded and ready to tackle the next stage just as the spring flowers were making my hometown look like something from a picture book. The Dogwoods, the Cherry blossoms, the Forsythia and the Wisteria all bloomed at the same time, and I was filled with hope that for the next phase of my recovery. I started to discuss flowers with bewildered colleagues who wanted to talk about project timelines and brand positioning.

Finding strength in nature and family. This spring was full of flowers.

Of course, my main support system has continued to be my family. Kevin has continued to take on the bulk of household responsibility and has supported me unconditionally. The boys have also been compassionate and strong. Time at home with my boys has of course been another important silver lining of this period . We have continued to have our Au Pair who manages their day-to-day schedules, which leaves me free to cuddle with them in corners and have long chats.  My eldest Zac ( 12) doesn’t typically open up, but being able to sit quietly with him has enabled me to learn more about his inner "tween" brain, as he navigates the rocky social waters in middle school and starts to obsess about the things that adolescent boys obsess about. ( I probably shouldn't publish it!)  Finnegan, (10) my middle son, is a meticulous planner about the small stuff in life. Over the course of the long months at home, I have been able to help him carefully handpick school supplies and organize his new bedroom- mapping out exactly where each piece of furniture will go. Sebastian (8) has often kidnapped me for afternoons of drawing together, in which I draw and he makes suggestions for colors.

I have been impressed by the level of empathy that the boys have developed over the course of the last year.  Notwithstanding the invisibleness of my current condition, they understand it fully and completely.  Zac, who despite his tweeness, is still a frequent hugger, the other day, said to me,

“ Mom- you can ask for a huggie too y’know- when you are feeling sad”

Finnegan has his own theory of how brain injury works- calling mine a “ double concussion”- because I hit the front and the back.  He has a spiritual perspective on life, which always surprises me,

“Mommy”, he says, “ it’s not fair, I don’t know why God did this, because you don’t deserve it, you don’t deserve it at all”.

Sebastian, just instinctively understands when I am sad, and crawls into bed with me.

Cuddling with my boys....the best therapy of all ( as long as they are not too wriggly)

Staring feelings in the face

Of course, as I take on this meandering, unpredictable and slow journey, I have a whole lot of feelings- and frankly feelings that I could do without. On any given day I might feel sad, angry, frustrated, depressed, resigned, helpless or grateful and hopeful. Most days I am living with an undercurrent of anger.  I am still angry with myself, for putting myself in this situation to start with. I am angry at the adrenaline seeking me, that needed the glamor of the VESPA and that wasn't as equipped to drive it as I needed to be. I am also angry at the situation, that there are no definitive answers or magic pills, that the path forwards is mainly patience. In my worst moments, I worry that I will never get better.

The frustration at just not being able to control the path forwards is also ever present. I have always had vivid dreams, and this period has been no exception. For as long as I can remember, my dream self has been able to fly. It’s really one of the best things ever. I highly recommend it. However, since my accident, I have not been flying. Instead, my dreams have been full of vertical mountains that I have been trying to climb or drive up unsuccessfully. I frequently dream of swimming in water that is so thick that I can’t take a stroke. I am not sure that it takes a genius to interpret the overall feeling of frustration that these dreams represent.

Despite this active dream life, in general I sleep well, and I am lucky that each morning, I wake up early, feeling good. If I am heading into New York for work or therapy, then mornings are the best time. Alternatively I can manage a few hours of work, do my exercises or meet a friend for coffee.  All of these activities result in nausea but I push through so that each day can have some kind of positive productivity. But as the day wears on and the chronic pain from my back and neck creep in, the nausea becomes heavier, or the back of my head feels like it might explode- I start to feel sorry for myself.  The afternoons are a time to “get through” and the time that all these feelings push through. If I am working on a deadline, I might power on feeling sicker and sicker, knowing that I need to get to the end- but frankly this always ends up badly. The best plan is usually to take a nap.  Sleeping, for me, is like rebooting the computer, plus I can skip the bad part of the day- including all those scary feelings and start over. The kids eat dinner at around 6pm. I know that if I can get to dinner time then the end is in sight.  I take to my bed at the same time as the children, around 9pm, knowing that the next morning, I am going to feel strong again.

I deal with this afternoon anger in a multitude of ways, some healthier than others. Some days I simply yell at my kids. I get mad with them for making too much noise, (why is it they need to have 3 different types of music going at once?) or not picking up their stuff.  Some days, I catch myself before I feel crappy and pre-nap, other days I wait too long or do too much and crawl into bed nauseous and sad. Sometimes, I have the strength to channel this energy in more productive ways. Practicing what I have learned about neuroplasticity and the power of positive thinking, I try to write a gratitude list each day. Literally things like“I am alive, and not in a wheelchair”, “the sun is shining” or “what a great cup of coffee”. After reading Sheryl Sandberg’s book,Option B- which focuses on post traumatic growth and how we can become stronger and more resilient through adversity,  I have also started a “small moments of joy” list.  It helps me to remember and underline times of enjoyment. It’s interesting what makes it into the list.  Sometimes it's the obvious stuff- when one of the children is so happy to see me that they run down the street and throw themselves at me, but I am also learning to notice the joy in the small stuff.  The other day I noted the moment I caught my two cats lying in identical positions next to each other basking in the sun.  The idea with a "joy" list- is you start to remember the happy moments, savor them, store them up and then reinforce them as you write them up at the end of the day.

In addition to these” power of positive thinking” methods, I am also enrolled in a clinical trial with the NYU headache center to integrate relaxation techniques into my treatment- both as a way of managing my chronic pain and my emotions. Each day, I undertake a 20 minute guided relaxation exercise and then journal my symptoms and feelings. I love it as if I skip days; they call me and remind me. Overall, I don’t see a difference in my pain, but I think its super helpful in keeping me grounded and dampening my inner crazy.  It’s also fun to do with the boys. Although sometimes it's hard to find a quiet spot in the house.

Gratitude, audiobooks and relaxation exercises- tools to help power through feelings and re-inforce the positive.

Historically, the way I have dealt with feelings is to move into high action mode, specifically cardio exercise.  Of course, with the injuries that I had sustained and now the heavy head, I hadn’t been able to really get out of breath and had been cautioned not to push too hard.  As mentioned before, walking has been great therapy, and a long walk with an audiobook has often been a good way to deal with glumness. However, one afternoon in June, I simply didn’t know what to do with myself. I was so angry I could understand the desire to pull out my own hair, take drugs or punch the wall. Knowing that none of these responses were likely to move me forwards, I decided that trying to push my self hard physically might be a great plan and that perhaps getting more blood in my brain might help my recovery.  (Note this was not based in any science, it was just my own non-proven theory.) So that’s what I did. Starting with low impact exercises, on the elliptical, stationary bike and swimming- I have pushed myself up to a level where I sweat, push my heartbeat up and sometimes even shout out loud. The first ten minutes are always awful, getting more and more nauseous, but then the endorphins kick in, and I have a few hours of feeling positive about the world and pain free.  There is a cost later in the rebound nausea, and if I do several days in a row then I suffer overall increase in symptoms- but the impact on my mood is profound.  In the post exercise energy boost, I can reintegrate into the family, cook dinner and I feel like I have accomplished something.  Gaining in confidence, I have even started to run. Starting with mixing 50 walking steps with 50 shuffly, limpy old person running steps and gradually adding more and more running steps, I have now hit two miles.  My pace is now close to 12.5 miles an hour, which is about 50% slower than before the accident   I feel sick from beginning to end and every step I wonder why I am doing it. I can literally feel the hardware in both my back and knee and my head throbs, but at the end of it, I feel like I am slowly taking myself back, that I am me.

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 Exercise is definitely not fun when I am doing it- but I am always glad after it's done!

After consulting with my doctors (after the fact- of course), it seems that my gut feeling was on target. A controlled amount of cardio exercise can help with recovery. We have agreed that I can continue with this approach as long as I promise not to work out on consecutive days and that I will run infrequently.  With their blessing under my belt, I am slowly reaching some significant physical milestones. Open water swimming is one of my favorite things to do. The limited visibility and fresh zing of the water make it both meditative and invigorating and so on a recent family trip to my father-in-law’s Vermont house, I took on swimming one of my regular summer open water routes. Flanked by my boys in one canoe and my husband in another I was able to undertake the 1-mile lake swim from the house to the beach. We went old school- with no cell phones, so there are no pictures- but I will remember the experience vividly, with my most loyal support team cheering me on. Another day, I was able to join my family on a 3 mile, uphill rocky hike, in the rain, and this week , I took my first outdoor bike ride. I have been riding a stationary bike for a while, going outside adds the variables of emotional stress ( it's most similar to riding a Vespa) as well as movement and stimulation (I wont' say how nauseous I felt, it won't do anybody any good to know that!) In a few weeks our whole family is planning on undertaking a miniature triathlon. (My goal is simply to finish- with or without throwing up) It is a ¼ mile swim, a few miles bike and 1 mile run, so very different to triathlons past.  All these big milestones give me a re-bound effect that mean I have to lie down for a day or so afterwards. But the sense of accomplishment is very helpful for my mental health, and my doctors say that as long as I space them out, I am letting my brain move forwards to the next stage.  I want to emphasize that the engine that drives me forwards on these physical challenges is not blind ambition or personal strength but those scary feelings of frustration, sadness and anger.  As I work my body on the trail, in the pool or on my bike, I can allow the intensity to settle in, mingling with my increased heartbeat and eventually I can push through to the other side.

Life in the slow lane.

So, I finish this essay in the same place that I finished the last one. I continue my quest for strength and patience to accept where I am.  I struggle with an inner debating society that wants more certainty- will I get better or do I need to learn to live along side chronic pain, nausea and fatigue and retool my life accordingly?  I continue with my limited work schedule, with the understanding that sometime soon, I’ll be back- with a vengeance, able to take on everything I had planned. But sometimes, I am wonder if this perception of complete recovery might well be leading to more frustration.  Many days I dream of becoming an artist, a jam maker or fortune teller. At this one-year mark, I wanted to have a plan of action. However, at this stage, I continue to live in a holding pattern, a life of in-betweens that I share with thousands of people who suffer from post concussion symptoms.

While I have added back some exercise into my routine, overall, I am trying to be at peace with living more slowly, giving up my relentless drive to move forwards.  This is not easy – at all.  Society and has trained us that busy is virtuous and synonymous with success.  We wear our busyness, our exhaustion and our packed schedules like a badge of honor.  A friend of mine likes to say that we have become “human doings”- not “human beings”

In this crusade for “beingness”, I look to be satisfied with today.  My goal is to enjoy a schedule that many would kill for, a schedule that includes yoga, baking, a bit of work, writing in small doses and endless cups of coffee. To be grateful that despite a disruption to our financial security, we won’t lose our house or starve anytime soon. Where I can, I look to believe that because of this adventure our family will end up stronger, more compassionate and more accepting. And, if plan A doesn't work out, we will ( as Sheryl Sandberg described in her book) kick the shit out of Option B. More than anything, I work to be thankful that on September 15th 2016, I made it off the train tracks and to the hospital to begin this long journey to wherever……