Break It Open

Last night, I had a dream that I was on a train to D.C. I accidentally got off at the wrong stop (Crystal City – which as anyone who lives in D.C. will tell you, is not actually on the line to Union Station, but when have dreams ever been rational?). I had to jump back on the train and purchase another ticket for the rest of the journey. I wanted to call my dad to let him know what had happened and that I would be late to see him.

I pulled out my phone and found it was an old flip phone, the kind I would have had back in undergrad when waiting until after 9 PM to talk in order to preserve precious minutes was an actual way of life. I was flustered by how inefficient this phone was. I couldn’t navigate the contact list well and couldn’t find my dad’s number. I approached a couple on the train to use their laptop and see if I could look it up, but whoever bought my dad’s radio station had finally changed the WNMB website, and his number was gone.

Why is it that I could still recite my house phone number as a kid? Or the number for the old station in Albemarle? But in this dream, all I wanted to do was talk to my dad, and I just couldn’t remember his number. I couldn’t reach him.

I was startled awake by my alarm (iPhone, nice to see you). I sat in bed for a few minutes trying to regain my composure. It was the type of dream that leaves you unsettled and casts a shadow over the morning. Not so much a nightmare, but a reminder that dreams speak to the fragility of our emotions and old wounds.

I found myself reflecting on what this meant in the context of my life now. I often wish that I could talk to my dad to get his perspective on things, even five and a half years later. But not so much as I have over the past few weeks, and this dream reinforced the permanence of the fact that I cannot, in fact, call him.

When these subtle reminders hit me full force, I find myself turning to other ways in which I can experience the memory of my father. Music. Swinging with Ellie in the sunshine. Soul searching with good friends.

I recently finished The Bright Hour, by Nina Riggs.

“Break it open,” she writes, quoting one of her favorite authors. “Look inside, feel it, write it down.”

In recent weeks,  I have reached out to close friends–kindred spirits, new and old. Through our conversations, I have come to better appreciate the idea of breaking, looking, and feeling. Of reaching out, standing up, leaning on.

Riggs also writes about a trip took to Paris she took with her husband after receiving news that her breast cancer was terminal. They visit a restaurant they frequented years before as newlyweds living in the city. The walls are crumbling, cracked,  and covered with plaster. The menu has changed. The floor is worn.

But, Riggs writes, “the breakage and repair are integral to the history of the object, rather than something to disguise.”

The object, or place, or memory–recognized as a whole, appreciated for the good. And the bad. The loss, and the gain.

As I muddle through the last semester of coursework in my doctoral program, the real work is just on the horizon.

At 34, I am too young to be like the restaurant that Riggs describes, but some aspects are true. I have been broken. Plastered over, yes, but the cracks are still there. I cannot talk to my dad, no matter how many times I dream about it.

I cannot imagine at this point where life would have taken me–us–if I hadn’t been kicked in the head on June 4th, 2013.

But.

What struck me most about Riggs’ reflections of life and loss is the delicate balance between living in the moment and accepting the fact that, at the end of the day, we can only control how we ride the waves.

“I have to love these days in the same way I love any other. There might not be a ‘normal’ from here on out.”

 

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Grasping at Straws

A few weeks ago, Paul and I took Ellie out to eat at Tyler’s, one of our favorite local places to go. We’ve been taking Ellie out and about since the day we got home from the hospital last May, partly in an effort to maintain some sense of normalcy and give us a break from the many hours spent in that wonderful, awful, confusing, enlightening newborn phase. Now going out is no longer a race to finish our food as quickly as possible and Ellie joins us at the table in a high chair, entertaining herself with toys, coasters, straws and anything else within reach (note to self, continue to remove knives from reach).

On this particular night, Ellie was happily playing with her Eeyore rattle (which just entailed tossing him about and then throwing him on the ground – “How often will Mommy pick this up for me?” seems to be a fun new game) and Paul and I were debriefing after a long week at school. We were surrounded by families, which seems to always be the case when you go to dinner at 5:30 PM on a Friday (whatever, it’s the new party time).

I looked over at the booth to my right, where a harried looking mom was sitting with her husband and two kids. The daughter picked up a straw, tore the top of the wrapper off, then blew the rest of the paper in her dad’s direction.

He laughed.

I started crying.

They were silent tears, but still they rolled down my face. Ellie was oblivious, of course, but Paul knew. And when he glanced over at the family, he also knew why.

Such a simple, almost mundane interaction between a daughter and her father, but I will never know it again with my own dad.

We got to the point where–when my dad was still alive–he would take out one of the ballpoint pens he always carried and actually write his name on the straw first to make sure I didn’t steal it. Then whenever I wasn’t paying attention, off came the top of the wrapper, and into my face the rest flew.

Virtually every single meal out that we shared.

I never thought that just seeing that sort of moment being shared by another father and daughter would affect me so much. It just was a little tug at the stitches I have worked so hard to maintain in order to hold myself together.

It often strikes me how little we will ever know about most of the people we encounter in our lives. It was raining last Tuesday morning, so I took the bus and enjoyed listening to some music on my phone. We hardly ever have to drive much of anywhere anymore, so taking the bus or running is really the only time I have just to sit and listen to music. As I thumbed through my music library, the Beatles’ “I Will” came on, and I stopped my search and just let the song play.

I’m not sure really how it became our de facto song as a family, but it did, and no matter how many times I hear it, I think about my mom and dad singing it on one of our many beach trips, or about how Paul and I walked down the aisle to it after our wedding. All these memories somehow manage to roll past my eyes in the 1:46 it takes for the song to run its course.

Looking around the crowded bus, it occurred to me that no one else knew exactly how I was feeling in that moment. That in that short span, I heard and saw my dad and my family as complete, even if just in my mind. No one else knew how bittersweet those memories felt even after four and a half years.

But then, looking at all the different faces surrounding me, I realized that I also would never know what they were thinking or feeling. Maybe someone else has a broken heart, or is stressed about an upcoming exam. Maybe they just got a new puppy. Maybe they drank too much last night. Maybe they’re going to drink too much tonight. Maybe their mom has dementia. Maybe they just got engaged. I will never know, and that’s just life – it’s okay as long as we respect that other people are also experiencing their own battles.

Maybe that’s the art of empathy and just maybe that’s something we could all be better at, especially in these tumultuous last few months.

My Sentiment, Exactly

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There is this uplifting scene towards the end of How the Grinch Stole Christmas where the Grinch’s heart expands to three times its normal size. Having a kid is somewhat like having this happen-except throw frustration, sleep deprivation, anxiety and abject terror at the responsibility for keeping this totally helpless tiny human alive into the mix.

To be honest, ever since our daughter Ellie was born six weeks ago, I have walked around with a totally different perspective on motherhood. I have looked at other mothers-especially those with multiple children-and wondered just how the hell they do it.

I don’t mean how do they do it on a day to day basis.

Yes, the sleep deprivation outright sucks. But no matter how long and frustrating the nights get, things always seem a little brighter once the sun comes up (because, let’s be honest, the first few weeks are mostly just about survival).

And yes, the constant crying and occasional screaming (newborns are sort of like dachshunds – a body that tiny really shouldn’t be able to produce that loud a sound, it just can’t be natural!) is frustrating, but at some point it always passes.

No – caring for a baby is hard work for sure, but it’s something that slipped into our lives like it was supposed to, because loving our daughter just made it so. What I wondered about these other mothers-now that I am one-is how they walk around with this expanded heart. A heart filled with boundless love but also what must be boundless anxiety and a fierce sense of protection.

I wondered – how have these women managed to temper these feelings and carry on with their daily lives, appearing so nonchalant? I wanted to know the key – I wanted to know their secret to somehow resuming a relatively normal life and regaining some sense of who I was before the baby. I wanted to know once I found her-this old Jenni-how I could marry who I used to be with this new identity as a mother. I reasoned that surely this must be possible.

Everyone else seems to be able to do it.

A few weeks after Ellie was born, I got on my horse for the first time since last October. At the barn, I felt a curious blend of emotions – a brief taste of independence and its joy mixed with the absolute visceral need to get back to my baby. Still, I pressed on and enjoyed a brief ride because it’s a part of who I am.

I also recently began running again, slowly re-building my stamina. It’s just 30 minutes, but something about getting outside, pounding the pavement with my two (giant) feet and just sweating helped me to slowly start seeing that it just might be possible to still be me

Perhaps becoming a mother for me doesn’t mean that I need to accept a completely new identity – maybe it just means accepting that I am capable of having my heart expand as such.

Becoming a parent has been everything and nothing like what I expected. I expected the day to day to be exactly like the way it is – the constant nursing, the dirty diapers, the lack of sleep. But while I knew instinctually that I would love my child, I couldn’t have braced for the depth and degree.

I learn something new about Ellie literally every day. It’s amazing to watch her grow and experience the world – at times, I definitely feel like I’m fumbling my way through this, but a few days ago, she cracked her first really big smile at Paul, and I thought there is nothing I would rather see.

I wouldn’t describe myself as overtly sentimental on the surface – but, I will take that memory and store it inside my ever expanding heart.

 

 

It’s Just a House

Paul and I began 2012 like most other years – excited about the prospect of a fresh start and a new year to experience together. That spring, I was promoted at work, and we began to seriously talk about starting a family. I loved the little townhouse my family had purchased a few years before, but it was time (so I felt) to move up and along to a real house.

Paul and I got on a kick looking for restored bungalows, somehow ending up doing the majority of our searching in Durham. Paul wanted to be somewhere walkable to restaurants and other fun things to do, and I wanted a home for the future family I envisioned. We stumbled upon the listing for our house – I was instantly smitten. Built in 1916, it had been beautifully restored. Yet, we actually bypassed it after the first showing. We were still “new” to downtown Durham, having been UNC students.

The house was in an area of Durham still in transition, and we were temporarily blinded by the dilapidated church across the street (now an art gallery) and the uncertainty of what we were getting into. We looked at other places in the next month or two after our initial showing and just didn’t see anything that seemed suited for us. Something about the house stuck with us, so we went back and gave it another chance. It wasn’t perfect by any means, but it was perfect for us. We decided to put in an offer and make our home there.

We closed on the house the morning of September 28th, 2012. Less than two hours later, my mom called me. My dad had suffered a major stroke – a stroke that would take his life just over two weeks later.

Instead of unpacking and making our new house a home, I spent time planning my dad’s funeral. The next few months were a blur, and to be honest, I don’t remember much about that time apart from barely functioning. Yet, somehow the fog lifted a bit the next spring. I remember specifically that Memorial Day weekend – Paul and I took our two dogs to Umstead Park for a long hike. I crouched on a rock in the middle of the creek and watch my dog enjoy the rushing water. I looked at the sunlight filter through the trees and thought for the first time that life could be okay again.

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The next week, the accident occurred and I sustained my TBI, aphasia and apraxia. Once again, our “normal” life took a backseat. Instead of cherishing our first summer in the new house, we spent time driving back and forth to doctor and therapy appointments. I spent much of my time sleeping on the couch, trying to recover from the shock and haze of my injury.

All I wanted during that time was for things to be stable – to have something solid that I could hold on to. Life was not at all what I had envisioned the morning we closed on our house. But as it goes, life went on.

I attended an aphasia caregiver panel recently at UNC, and the more I hear other people’s stories, the luckier I feel about my own recovery. I wasn’t lucky to go through the process, but things could have turned out much worse. Here I am on the other side, and I’m able to utilize my experience in order to live a richer life.

I actually started writing this post a couple of months ago, when we confirmed the move date from our bungalow to a modern condo in Chapel Hill. It was a huge decision for us and not one that we made lightly. But with Paul in school and my acceptance to the Speech and Hearing doctoral program at UNC, moving back to Chapel Hill just made sense. And, with Baby Shafer set to make her debut this May, we wanted to down size and find a place walkable to school, daycare and all the places we love in Chapel Hill.

I’m glad that I sat on this post for a while, because if I’d finished it back in February, it would have been a pretty maudlin read. I was convinced that I would be devastated to leave the house that I had placed so many hopes and expectations on – I had placed the dreams I had for that house on an unreachable pedestal, just by virtue of how life turned out to be while we were there. That’s okay, but it wasn’t realistic to expect life to cooperate just because I wanted it to.

There is a pivotal scene toward the end of the movie Up where Carl lets go of the house he shared with Ellie. He understands at that point of the movie that it’s just a house and that letting go of the actual house doesn’t mean he has to let go of the memories he made there.

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I have learned to let go of a lot of things the past few years, and then more I have to let go, the more I understand that I keep what matters most close to me – what matters is not necessarily where I am but who I am with and what I choose to do with my time.

To spend time with Paul and our animals, to embark on this new journey together with a family and school, it’s more important than any expectation I could place on what, in the end, is just a house.

Two Lines

There is this hill on my typical running route that always gets me, no matter how many times I scale it. Some days I can tackle it with a little more enthusiasm, and other days leave me huffing and puffing with a stream of expletives running through my head. A lot of the time, I just put my head down and focus on keeping one foot in front of the other.

I guess the irony is not lost on me – that is how I have mostly approached the last (almost) three years. After my dad died, it was literally all I could do mentally to function, and a lot of the time, it was more about getting through the next five minutes without having a breakdown. Eventually, the minutes became hours, then days. Not that I didn’t think about him all the time, but I was better able to look at the big picture–the good times, the memories–than just keeping my head down and focusing on my emotional survival.

My recovery from a Traumatic Brain Injury has been much the same way. I wasn’t scared to look up toward the top of the hill–to set goals for my recovery–but I often had to focus on the smaller chunks of recovery. And many times, I had to re-set and adjust my goals along the way. I had to be flexible, which hasn’t always been my forte.

Recently, we took what may be our last trip down to the beach for the foreseeable future, as we finally sold my family’s condo there – the last vestige of our presence there. It was bittersweet saying goodbye, and for a long time, I didn’t want to believe that that chapter was finally closing. I worried that by leaving the beach behind, I would be losing a piece of my dad. I gradually came to understand, though, that it was never the beach itself that mattered – we could have gone anywhere. It was the memories we made together as a family. And while I can’t take the ocean with me, I will always hold the memories we made there in my heart.

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And I said goodbye, for now, to the beach.

I had no idea, though, that less than a month later, Paul and I would be writing another new chapter in our lives.

I am going to be honest.

A baby is something that I have always wanted, but not until the last couple of years did my desire to have one really materialize. Once we finally started trying, everything else happened. I lost my dad. We helped my mom move up here. We dealt with the properties, the radio station, and ourselves. And then I got hurt. In the mean time, several good friends were blessed with children, and I was so very happy for them, truly.

But it was hard. I guess it sounds selfish, and I don’t intend for that – because I truly, truly was happy for my friends. It was just hard to want something so badly and not have it happen month after month. It wasn’t really something that I shared with many people. I know other women have gone (and are going) through the same emotions. It took me a long time to realize that it was completely okay to want something to go right.

Still, this past Wednesday morning, I wasn’t expecting this:

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I probably shouldn’t repeat the exact words running through my head at the time. I was just in total disbelief. I still am.

Wednesday’s blood test confirmed it, and today’s blood test showed everything is on track so far.

As you can probably guess, it’s very early on. So why am I sharing? A lot of women wait until their second trimester. I just couldn’t. I understand that there is always a chance of something happening, but I have determined that I can’t live the next two months full of anxiety and “what ifs.” I have to live the life that I have today, and today I am thrilled and excited.

Through this blog, I have shared the ups and downs of my recovery from grief and TBI, and here I am. I am so excited to share this now.

I don’t have a due date yet – that will come in a few weeks with the ultrasound. But it’s looking like May. Again, the irony isn’t lost on me – my dad was born on May 8. While I am devastated that he won’t be physically here to meet his grandchild, I always carry him in my heart and can’t wait to tell our child all about him. I am grateful that I have my mom, Paul’s parents, and kind and understanding friends.

I am ready for this new chapter and can’t wait to share it.

Two Years from 23,000 Feet

Tomorrow marks two years since my accident.

In my mind, it’s last Saturday afternoon, and I’m on the first of three flights, flying from Monterey, California, to Los Angeles. Miraculously, I have the row to myself (I use the term “row” loosely, since the plane was so small – a trip to the bathroom resulted in contortions). I also have a window seat, which I treasure. Some people are terrified of heights and so they keep the window shades pulled down tight. While I try not to think about the fact that we are hurtling through the air in what is essentially a tin can, I get a sense of comfort from looking at the earth below. It makes me feel very present.

The scenery from Monterey to LA was dotted with mountains and cloaked in fog. We flew down the coast, but it was impossible at times to discern the fog from the ocean. It was as though the fog just rolled right into the beach and beyond. The man behind me has been talking non-stop since we boarded. He seems to be unaware that speech is something to be preserved and conserved like water in the drought-stricken state we are passing over.

When I look at the earth below, I note its cracks and deep veins, as if the earth was literally being sucked dry despite being so close to the coast. Visualization has been a powerful tool in recovering my speech over the past two years, more from the perspective of “seeing” a new way of thinking about how to say a unique or complex word. Glancing at the rolling earth below, I think this must be the literal visualization of “arid.” I could almost see the word floating up through the air currents. I wondered if I could reach down and touch the earth below, would it blow away?

I think about the last five days, which I spent at my first Clinical Aphasiology Conference in Monterey.

I am avoiding finishing the last few pages of my book–like the last bite of a tasty dessert, I’m just not ready for the end–and so I take some time to let the past few days settle and absorb. I had been mentally preparing for this conference (and this trip) for months, and it was hard to admit that it was over, and I was coming home.

It was even harder to absorb where I am now compared to where I was two years ago.

I learned so much at the conference, which is a fairly intimate gathering of some of the top researchers in aphasia. I also had the pleasure of meeting some really lovely people. I am not certain I could adequately convey the impact that attending this conference had on me, both professionally and personally. Seeing data from my recovery presented to a group of clinical researchers and standing up to share a bit of my experience was invaluable to me. More than that, I hope that it is a inkling of work to be done and can help to further the field in some way. Because more than anything, what good does all the research in the world do if we can’t apply it and see it make a difference in someone’s life? What are we doing, then? I hope that my own recovery–understanding that we are all unique–gives even one person hope that there is something beyond those fragile first few months.

Ironically, my favorite memory from the conference was the evening that a group of us drove over to Carmel-By-The-Sea. It was chilly for late May, but there was something undeniably magic about the town. We walked on the beach and back up through town, stopping at the Cypress for dinner and drinks. Just having an intimate conversation with a group of lovely ladies, most of whom I had just met at the conference, was fantastic. To be able to sit and converse and relate on a personal level, isn’t that really what it’s all about? Two years ago, I had no promises that I would ever be able to do so again.

Some people who sustain a TBI suffer immeasurable changes in personality. While I am beyond grateful to say that that has not been the case with me, I would be untruthful if I said I hadn’t changed at all. But, for me, it’s been more of a slow evolution in the things that sustain me – the things that I value and treasure. Gradually, I have come to the realization, as I wrote in my last post, that I need to be more present. More appreciative of the mundane moments that make up life, because really – the moments that sweep you away  (whether in tragedy or joy) are few and far between compared to the everyday. Maybe it’s not that I have changed all that dramatically. I am still the same person, but to put it succinctly, maybe it’s just that I let myself feel more.

So I come full circle, back to the guy in the seat behind me, talking incessantly.

Maybe any other time I would be annoyed. However, reflecting on the then and now – I let myself be.

Some people are uncomfortable with silence. They will do anything to fill it. After having to think so hard about speaking after my accident, I became a lot more comfortable with silence. I accepted that sometimes it’s not what you say, but how you say it. Whether you say it in words or not.

Here’s to two years.

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Enabling: It’s Disabling

A few weeks ago, some girlfriends and I ventured on a beach getaway. That Saturday, while cooling off from a few hours in the sun, we somehow ended up watching several episodes of a show called My 600 Pound Life. It seemed only natural to munch on the Krispy Kreme doughnuts we had procured the night before. Before we knew it, we had been sucked in to a downward spiral of television watching. Much like watching a car crash, we couldn’t seem to turn away. Or change the channel. 

A common theme prevailed: either the subject of the show was ready to make a change, or she wasn’t. Sure, most people say they want to change (something – it doesn’t have to be a weight thing), but we all know that it’s easy to say or wish or think about change. It’s much harder to actually do it – to make the change happen. 

Frequently, those on the show who weren’t truly ready to change–to adopt a new lifestyle–were surrounded by people who enabled them to stay mired in their habits. To stay stuck in their comfort zone. Many times, the enablers were family members, and they didn’t know any other way. Or they couldn’t stand to see their loved one struggling. So, of course, it makes sense to bring McDonalds to someone who is grossly overweight and bedridden. 

This is an extreme example, sure. But in my experience, it’s not all that far fetched to say the same type of enabling occurs in other ways. And again, it all stems from the family member or friend not just wanting to help but to avoid the inevitable–the frustration, the heartache, the difficulty–of change.

The first post I wrote when I started this blog was called “Let Me Finish!”. At the time, I spoke in very halting sentences and often took a very long time to finish my thoughts. People would frequently want to help me out by finishing my sentences. But what they didn’t realize was that they weren’t helping me at all. They meant well, of course. But they were actually hindering my recovery, because the only way I was going to become faster and more fluent was just doing it myself–no matter how long it took. 

Additionally, when I first began using my phone and computer again, I frequently misspelled words or else completely left them out. My aphasia made it very difficult for me to string words together in a way that made sense, even though in my head, I knew exactly what I wanted to say. I have heard this example many times throughout my recovery, but having aphasia is akin to have all your words–your “files”–overturned and jumbled around in your brain. 

Now, mind you, I have always been an avid reader and writer at heart. I typically was also quite compulsive about correct spelling and grammar. Obviously, suddenly not being able to make sense with written or typed words drove me crazy. I immediately began to ask Paul to review and correct all my texts and posts. He indulged me at first but soon wised up after our first meeting at TAP. He then agreed to read my work but refused to correct anything that was wrong.

Not surprisingly, this development was hard to take. I would stare for what felt like hours at whatever I had written, trying to figure out if it was sensical and correct. And yet, it was exactly what I needed. By using Paul as my editor and lifeline, I was never going to learn how to recognize what needed to be corrected. By refusing to enable me, Paul actually helped me quickly recover my propensity for writing and honed my eye in order to carefully QC my own work, something I still have to do today.

Another way in which Paul stopped enabling me was refusing to order food for me in public. It seems very basic, but that was so key in my recovery. I live in downtown Durham, which means I am within biking distance to some of the tastiest food the state (dare I say, the entire South) has to offer. Not being comfortable speaking in public, even if it was only to order my egg and cheese bagel from Monuts, was disheartening. 

To be honest, when you have a language impairment, talking in public is really intimidating. Now, of course, I have made so much progress that I don’t hesitate. But at the time, it was scary as hell. I really just preferred to hide in the corner and have Paul speak for me. But, obviously this didn’t correlate well to my goal of getting better. In order to get better and more comfortable speaking in public, I sort of had to…speak in public. Plus, Paul started to refuse to speak for me. So that was that.

I suspect sometimes that people with similar impairments seek the easy way out, at least initially like I did, because (surprise) change is hard–more than that, change is painful.

You can’t go from 0 to 60 the first time out. Sometimes, all you can do is to take a walk down to the mailbox and go back inside. Then the next day, maybe you take a few more steps. But the point is, you still have to take those first few steps. No one else can do it for you. You can’t write a book without first writing a basic sentence. 

But, one thing I have learned for sure over the past year is that it is never too late to make a change. No matter what that change is. Improvement is always possible, though it may not come as quickly as we’d like.

Change starts with learning how to advocate for yourself and how to recognize the best avenue to improvement, even if it’s difficult. Change starts with taking that walk or re-learning how to order that bagel sandwich. Or by sending a simple text. Change starts by taking ownership of your goals and recognizing your weaknesses. 

Now I’m off to order my own beer, thanks.