One of the many things I love about traveling is losing track of time. After a few days of travel, Tuesdays are no longer distinguishable from Fridays, morning and afternoon begin to mesh, and your whole mind becomes a blurry, satisfied pool of relaxation.
Vacationing in sunny Aruba during the month of December has only amplified my confusion as the sudden arrival into perfect summer weather quickly robbed me of last week's Christmas, cold-weather related memories. So it was with a certain amount of surprise that, while nursing my sad little sunburn after a morning at the beach, I remembered that today is, in fact, the last day of 2013.
I imagine many of us will be making resolutions today, as we are apt to each December 31st. I hope we'll all be wise enough to document them somewhere so as to check in on them from time to time during the upcoming year. I'm the type of person who tends to make resolutions during all times of the year. I'm also the type of person who tends to abandon them quickly. On the eve of my 30th birthday (a week before TC's attack), I compiled a beautiful list of all the lovely habits I wished to carry into my third decade of life: healthy eating, more exercise, more sleep, yadda yadda. It should be stated with no uncertainty that each of the items on my list was instantly torpedoed out of my life the day I was forced to face the new reality of the impending decade. Slowly, and with much healing, I have been able to recover many of these highly esteemed habits (albeit with limited consistency).
This year, however, I am not interested in list making or self-punishment. I've spent plenty of years engaging in both. New Year's resolutions are a great reminder that we ourselves are the ultimate driving force of change in our lives, but they are meaningless without the resolve to carry them through. This year I plan to resist the urge to set strict parameters for my existence in 2014. It would be terrific to make it to the gym five times a week, for example, but just to move at every possible opportunity, at every impromptu dance party with my son, or morning meeting in my fourth grade classroom, is more likely to bring joy to me and to others.
I'd like to go forward into 2014 without resolutions, but with great resolve. Resolve to live boldly, unapologetically, and kindly. Resolve to shut up every once in awhile and just listen. Resolve to learn more and read more, for both these things broaden my world, take me outside of myself, and remind me that there's a whole lot of stuff out there about which I am quite clueless (which is, incidentally, a great method for squelching self-importance). I have a whole lot to learn this year about the world and I resolve to let those lessons in.
Call me the New Year's grinch, but the only true difference I can see between today and tomorrow is our resolve to think differently and, ultimately, our resolve to let our thinking impact our actions. Cheers to you all, to 2014, and to all the life it holds in store.
Something sweet and strange about this randomly placed mural in Oranjestad, Aruba.
While driving down to visit our families in southern Maryland on Saturday, I sat silently, considering our holiday plans for this year. Finally I remarked to TC, "Hey, do you realize we don't have any traditions left?"
"What do you mean?" he asked.
"I mean, absolutely everything has changed in the past two years. There's nothing about the holidays that's the same anymore." The whole idea struck me as incredibly sad and I began to wonder what we have at this moment to pass on to Jack. For the first time in his life, Jack is fully aware of Christmas and his excitement about the holidays is adorable, truly joyous to witness. But what kinds of things will he tell his friends and teachers are the holiday legacies of his family?
I don't drive to the "county" (our hometown) very often anymore. Mainly because our schedules over the past few months have been so insanely hectic, but also because my mom spends so much of her time up in the city visiting my dad. For the past 4.5 months, my dad has been a patient at Georgetown Hospital. What began as a bowel obstruction has developed into months and months of related ailments that have caused him to lose much of his physical and mental strength. My dad's health has been problematic for years now, increasingly to the point where my mom decided to sell their house (the one my sister and I have called home for the past 13 years), and build a more manageable home a few miles away. With so many health issues and transitions to deal with, I've hardly had a moment to process the loss of this home - one of the few stabilizing elements of my adult life.
Moving was the best decision for my mom, and even though I feel twinges of sadness when I consider the memories we made in our old house, I'm proud of her for making a decision that has brought her ease in her day-to-day life, something TC and I are trying to achieve ourselves.
Still, it's hard to pretend this Christmas might resemble those in the past. In a new house, with my dad absent, and the emotional scars of TC's injury still fresh, we're still very much in a transition phase. At times, I feel an overwhelming desire to feel secure again, to lay down roots somewhere we can stay put, to get settled, and to infuse some fun in all of our lives, but especially Jack's. The problem is, I'm not quite sure how to do this or whether the timing is right. I find myself fantasizing about the ten years I spent growing up in Arizona, a time in my life when things truly were easy, and I ask myself whether it's possible to replicate this. But the voice in my head, the one that always tries to override my impatience, tells me to wait. It promises that things ahead will get better and more stable if I can just wait it out. It promises that the answers to life's next big changes will reveal themselves if I can just stay true to the course. However, it also reminds me to be bold and risk-taking, to seize opportunities as they come, and to create magic in the life we are living at this moment.
After considering my comment about our traditionless life, TC answered thoughtfully, "Well, it's an opportunity to make new traditions." I know he's right, and more than that, I know we must. We cannot wait for our easier lives to begin before giving Jack the memories we hope he'll carry into adulthood. The task of creating new traditions starts today, in whatever house we find ourselves, with whoever is present. Living in transition does not necessitate living without tradition. As our lives inevitably change, we must search for the things we can carry forward with us, and when those things come to an end, we must carry forward our ability to create something new.
On Friday night I was up late going through old papers and returning e-mails. As I sat there thumbing through hundreds of old medical bills, receipts, to-do lists, and notes to TC, my heart was pounding furiously. Had I really been responsible for all this? Did I really juggle all this insanity last year? Oh, God, was it really that awful? In a simple word: yes.
That work is not over. It probably won't be over for many years. I still panic over unresolved medical bills and disability payments. I'm still behind on returning important phone calls and e-mails. Life continues to throw us terrible disability related annoyances that eat up money and time (my most valuable resource these days). It's not over, but it's certainly a lot better than it was a year ago. And I know it's a lot easier than the hurdles other families with disabilities face.
There are so many moments from the past fifteen months that, looking back, I don't know how we survived. Among the treasures I uncovered on Friday was a notepad I used to write to TC during my visits to the rehab hospital. At that point, verbal language was a complete mystery to TC, so as I talked to him, I'd write what I was saying, either on a laptop or in a notepad. Rereading this little spiral bound book was gutting.
You're not weird, honey. Your brain just doesn't understand words the same way it used to.
They found the people who did this. It was a group of teenagers. They're in jail now.
Don't be embarrassed, but people have been donating money to us. They want to help.
I cringe, remembering the reality of our lives last November, in the days before TC was finally discharged from the hospital. Is it possible those memories are more awful in retrospect than they were in the present moment? Last week I received an e-mail from a high school student whose family suffered a terrible TBI related loss. She was writing a paper for school and wanted to know more about our experience. Do you remember TC as he was before? she asked. I told her the truth: Yes. But I choose not to think about it. For the most part, I choose not to look back at all. I want to remember, but I really can't afford to. There's no way to change the past. We can only go forward.
Humans are built to survive. I've learned this firsthand, of course, but I've also learned it through the incredible stories people have shared with me over the past year. Insurmountable losses, devastating setbacks, daily heartbreaks. I look at other caregivers with complete awe. Some seem to do it so much more graciously than I do. I recognize gratitude and I preach it often, but I still lose sight of how much we have been given in this life. I continue to want more and to lament what is gone. Meanwhile, TC is still here. And given the severity of his injury, he is so much healthier than he has any right to be. He gets frustrated and so do I. Like a lot of people, we want it all and we want it now. Our sense of what we deserve continues to be occasionally rooted in the flawed logic of selfishness. But I am smart enough now to recognize that what is here today may certainly be gone tomorrow. And a quiet evening of reflecting on the surviving artifacts of last year reminds me that we are still growing, still improving, even if we can't see it in our hurried day-to-day existence.
This week I'm grateful for survival. And I'm grateful to all the survivors out there who have taught me the value and beauty of a life in progress.
Please join TC and me this Thursday, November 14th at the Pentagon City Sephora store to celebrate a cause near and dear to our hearts! Marie Claire
magazine and Josie Maran Cosmetics
recently bestowed me the honor of being their Model Citizen of 2013. In addition to being featured in the December issue, I am so thrilled to raise money for two important causes on Thursday: the Brain Injury Association of America and an aphasia scholarship fund TC and I have started to help others receive intensive speech therapy. The loss of language is a devastating disability that affects far too many people. We hope you'll consider stopping by on Thursday and enjoy a little pampering. As a Josie Maran Cosmetics convert, I know you'll be just as obsessed with her all-natural argan oil based products as I am!
Don't forget to RSVP for Thursday's event. We are looking forward to seeing you there!
Well, I think it's safe to say this fall's award for worst blogger goes to yours truly. As I look back at my last posting from nearly two months ago (yikes!), I realize what an impact the return to "normalcy" has had on my ability to keep writing.
These days my time is mainly spent teaching 9- and 10-year-olds how to write. And to be honest: it's a real joy. I never thought I would derive so much happiness from returning to work. And while the transition has certainly been stressful, it was the break I needed from a life that has revolved around caregiving for an exhaustively long time.
As we head into another beautiful Capitol Hill autumn, TC and I have been counting our celebrations, as well as looking forward to the adventures ahead. Last month TC was honored by the Department of Justice and the U.S. Attorney's Office at their annual ceremony for victims of crime. I was one proud wifey as he stood up to receive his award from the leading U.S. Attorney. I was also quite honored to be this year's guest speaker. It was privilege to stand in front of so many brave people - some who were being recognized for putting their own lives on the line in order to achieve justice for others.
The days are busy, but also quite rich. As Jack prepares for 3rd birthday, I am struck by the incredible changes I have witnessed in him over the past year. He is talkative, hilarious, consistently obsessed with dinosaurs, and so good natured. There is nothing in the world that brings me more joy than an impromptu Katy Perry dance party with my happy boy. I continue to be so proud of his resilience and flexibility in the months since TC's injury.
At the end of next month our story will appear in the December issue of Marie Claire. I am so thrilled to have been chosen as the magazine's Model Citizen of 2013 and I'm hoping that by continuing to write about the challenges of brain injury both here and on my new blog (which will be introduced next month on Brainline.org), that we can continue to bring attention to families who are coping with similar struggles. As I wrote back in August, brain injury doesn't end. The transitions from one phase of life to another continue to be an unsteady ride with no clear destination. At times it is easier to stay quiet and ride the waves alone. At other times, it is appropriate to speak up, vent, or ask for help.
As we all are, I am constantly searching for balance in my life. Work, writing, family, exercise, sleep (OK, ideally) are competing priorities for my time and it's hard not to feel as if I'm always falling short. Until I find the solution for more hours in the day, I'm hoping that the next few months will open up greater opportunities for writing, so that I can continue to connect with you all.
Happy Autumn! Wishing you peace and joy in the weeks ahead.
A year ago today I woke up to discover that the world as I knew it had come crashing down. There are a lot of metaphors people use to describe brain injury - it's a marathon, it's a rollercoaster, it's a journey. And it's true. Brain injury is all these things at different times and the experience is different for each of the people involved. For me, brain injury has been an earthquake: a sudden and surprising jolt to the foundation of my life. And while August 18th signifies the day of initial impact, the past 365 days have consisted of a series of aftershocks that sometimes felt as devastating as the earthquake itself.
I've spent a lot of time convincing myself that if I worked hard enough, fought harder, and persevered I could somehow "fix" the cracked foundation of our new life. TC's survival was a miracle that led me to think we could miraculously glue the rest of the pieces of our life back together. I've spent a year frantically scrambling for pebbles, trying to create a mosaic from what was once a watercolor canvas. But that's not the way brain injury works. You don't "fix" brain injury. You don't "fix" people. You heal them. And you heal yourself.
It's easy to look at people's lives and say, "That could never happen to me" or "That's not the way to do it." The past year has been a very humbling experience in that respect. I thought we had it all together. And maybe we did. But none of us have total control over what happens in our lives. And none of us know how we'll handle a particular situation until we are forced to confront it head-on. The best we can do is reserve judgment in our examination of other people's lives and to practice self-forgiveness in our own.
I accept now that we can't glue our life back together. The cracks are permanent. Instead we can learn to live with the imperfections of our foundation, to look for new and creative ways to cross the divide, and to plant a tree wherever there is hopelessness or desolation. We can acknowledge the blessings along with the challenges and grow stronger at the broken places.
Before I go celebrate with my beautiful family, allow me to say thank you for everything you have done to get us to this day. Each message, e-mail, comment, and prayer was the inspiration that got us through another minute, another hour, another day of this experience. Thank you for being there and for not leaving. You'll never know the power of your kindness.
August is a big month for our family. Within a ten day span, I celebrate a birthday, we celebrate a wedding anniversary, and we mark the one-year "anniversary" (there has to be a better word than that, help??) of TC's brain injury. It's a month of quiet reflection, displays of love, and feelings of deep gratitude. There is nothing I am looking forward to more in the upcoming year than resuming normalcy. I love writing and I enjoy blogging and I hope to have time for both, but my biggest priority will be the health and wellness of our family. And we'll just have to see how the rest plays out.
I often get asked why we've chosen to return to D.C. and the answer is complex. To begin with, it's our home. It's where our child was born, where we bought out first place, and where I enjoy a job that I love. We care deeply about our neighbors and friends here. They are wonderful people and they have worked enormously hard to protect us this year. But there are also drawbacks to staying. We don't enjoy the notoriety that has accompanied this experience. It's hard not to reminisce about our quiet life a year ago and envy the privacy we once enjoyed. But we accept the situation, acknowledge our own part in it, and will continue to try very hard to steer any public conversations toward the topics of brain injury and aphasia, which is where we believe the attention should be.
The blog, which began as a way of updating friends and family about TC's progress, spun a life of its own. Never did I intend to grieve or rejoice so publicly, because I never could have imagined how things would continue to change. I am a strong believer in the value of honesty, however. There will be many families who travel this journey after us. I have even had the pleasure of meeting a few already. It would be a disservice to all to pretend the road is paved in rainbows and daffodils. As a caregiver, I wanted to be prepared for the challenges ahead and reading other people's experiences afforded me that opportunity. People need to know that it's OK to be depressed from time to time. It's OK to grieve things that are lost and for that process to be as messy, unusual, or heartbreaking as it might turn out to be. Likewise, people should know that dark feelings are not necessarily permanent and that one day, as it did for us, the heavy fog will likely rise.
Before this year, I never knew so much goodness and generosity existed in the world. As the recipients of abundant kindness, TC and I still cope with awkward feelings about this. We'll never feel completely deserving of what we've been given, but we do hope people know that we'll spend the remainder of our lifetimes trying to pay it back. That is truly our responsibility now.
However, and I don't think I'm suggesting anything particularly provocative or novel here, I do believe the human race could be doing a whole better for one another. I pay a little closer attention these days to the tragedies in our world and I'm both appalled and shocked by the cruelty in people's responses. We are so quick to judge a person's character or situation based on a nugget of potentially accurate information. We accept secondhand knowledge as if it were concrete fact and we rarely follow the old adage of "putting one's self in another's shoes." We see blatant injustice in front of our faces and we choose to look the other way. There is so much potential for kindness in our lives. And, as a whole, we're simply not living up to it.
Life is complicated and ever evolving. I write now with the understanding that my opinions are subject to change at any time. But, as I try to unravel myself from the web of insanity that has characterized the past twelve months, I'd like to use the next year to not simply become unstuck, but to move forward. We can do better for ourselves and for each other, but it begins with honest self-reflection. We can afford to give more. We can afford to give more meaningfully. And I know, without doubt, that we are all strong enough to be more than who we are presently. I'd much rather spend my time on this planet advocating for compassion and kindness than perpetuating cycles of negativity and ignorance. So, I'm aiming high in the year ahead and I encourage others to do the same. Let's make it happen.
I wanted to take a brief moment to thank all the incredible people who have reached out to TC and I since Sunday's story appeared in the Washington Post. One of the greatest gifts I have received this year is the honor of sharing in your own stories, struggles, and triumphs. Your words of encouragement and wisdom have done much to evolve our perspective on life. Thank you to everyone for your support. We continue to be so deeply humbled by it.
It's true that this has been a very difficult year for our family, but as we near the one-year mark of TC's assault, I am left with a few thoughts about the silver lining or upside to this journey. To begin with, TC is doing remarkably well. He remains the most competent, determined, and brilliant man I have ever known and his challenges have only strengthened his innate capabilities. Yes, there are hurdles ahead and some of them are very big, but not a day goes by that we don't marvel at how far he has come. He has exceeded every expectation for his recovery. I have no doubt that in another year we will be even further stunned by his progress.
For everything that went wrong on August 18th, much has gone right for us in the days since. Recovery and rehabilitation are indeed very expensive, but we give a lot of credit to our wonderful health insurance for covering the bulk of those costs. Like any family that becomes unexpectedly disabled, the financial future is uncertain, but we are preparing ourselves for those challenges the best that we can. The generosity of so many made it possible for TC to get top-notch speech therapy in Halifax. There is no end to our gratitude for this opportunity. It's changed our lives and one day we hope to be in the position of sending other folks to InteRACT for the same chance. Everyone with aphasia deserves the very best treatment available. TC and I are passionate about making this possible.
If there was one lesson I would want people to take away from our experience, it's that we're all capable of so much more than we believe. TC and I have both had many days along the way in which we were tempted to give up. Some days we paused and gave into the sadness. But most days, we got out of bed and we just kept going. To be honest, we're both in awe of each other. We witness what the other has accomplished over the past twelve months and it's enough to convince us both that anything is possible if you just keep fighting.
My husband is my hero. He's extremely modest and would never agree, but he's an inspiration. His drive and determination inspire me to be more than I am, to love harder than I thought possible, and to look beyond impossibilities. I'm so very eager to witness all the amazing accomplishments I know are still ahead for him.
It is the first day of our family's annual beach trip (a much celebrated event in our house, and especially this year), and I find myself far behind from where I hoped I would be in the book writing process. My goal is to have a completed proposal before I return to work in August, which is doable if I'm willing to hang up my hat as the master procrastinator.
Therefore, this is a short blog post only to report that I'm on a brief hiatus from blog writing. I'll be spending the next few weeks partying with this guy (gotta love the shades) on the beautiful Delaware shore and getting serious about book writing. SO, if you happen to see me goofing off on Twitter, Facebook, etc., you have my expressed permission to redirect me in whatever gentle, sarcastic, forceful manner you choose. However, I do fully expect someone to notify me when this Royal Baby is born. Some distractions simply can't be ignored.
Today I returned home, leaving TC on his own for three weeks as he finishes up the second round of the InteRACT
program. I'm beyond excited to be back with Jack, but saying farewell has been surprisingly bittersweet. I didn't think I'd feel quite so emotional about leaving Halifax. However, I also hadn't taken a very long pause to consider how this city and our experience here have changed us.
TC and I are a very different couple than we were on May 4th, the day we got in the car and began our Canadian road trip. Simply put, life is a little easier now. The vast improvement in TC's speech is partly to thank, but there's so much more to it. Getting away from home allowed us the time and space we needed to get comfortable in our new dynamic. We'll never have the same relationship we did before. We can't quite read each other's minds as well, nor foresee each other's needs as effectively. We're different people, changed by a experience that deeply shook the core of our identities. The work of rebuilding applies as much to our marriage as it does to TC's physical being. It's ongoing and it's challenging. It's a commitment we reaffirm ourselves to each day.
In Halifax, I got a chance to put myself first: to leave therapy to the therapists and think seriously about my writing. I began the daunting task of writing a memoir and have found joy in imagining a future that, in some ways, is more authentic and promising than the one I had been planning for. After nearly a year of back breaking, exhausting work, I needed this deliciously selfish experience to restore myself for the work ahead. I truly believe the program has been as therapeutic for me as it's been for TC.
Perhaps the greatest gift we've been given, however, are the new people in our lives. It feels impersonal to call the crew at InteRACT
"therapists" because our relationship is so much more meaningful. They have laughed with us, cried with us, motivated us, and inspired us to keep believing in better days ahead. Without judgment, they have witnessed us bicker, overcome miscommunication, and struggle with the deep mourning we feel for our former life. The work they do is so important. Living with aphasia doesn't always feel like a life at all, but the team here has taught us that life does indeed go on - one day at a time.
Before coming to Canada, we had never met another person with aphasia. Being isolated in our daily struggles with communication and recovery made it easy to feel as if we were the only people who had ever suffered in this way. But that notion couldn't be further from the truth. In Halifax we have met the bravest, hardest working people I have ever had the pleasure of knowing. People whose lives, like ours, were suddenly and unfairly upturned; people who work all day, everyday just to get back the things the rest of us take for granted. They too know what it's like to want more from life and to feel cruelly singled out by the universe. Still, they go on. They refuse to submit themselves to anger and depression. They fight back, even when the results are painstakingly slow. It is a true honor to be in their company and I say goodbye knowing I have been greatly enriched by their stories and dedication.
I hope that we'll return to Halifax before too long. Our chapter in Canada has been an important part of the journey leading us back to our lives and I'll forever hold the experience close to my heart. And in three weeks, I look forward to greeting TC with open arms - ready to witness his progress and begin a new chapter together back at home.