Tuesday, January 21, 2014

Epilogue: My First Decade Living with a TBI

Today marks ten years since I sustained the brain injury that changed my life forever. Living with a brain injury means that I have more than my share of bad days, a few pretty good days, and a lot of fair days. It also means that sometimes I have days or weeks when my brain is foggy, the world is spinning, and my eyes don't work so well. I'm in one of those valleys right now. I had hoped to write some great retrospective today like I did last year, but it's just not happening. Instead, I will mark this milestone with an excerpt of something I wrote on a good day, several months ago, for the epilogue of my book, Generation Ex, for the e-book edition.

It’s been just over a decade since I excitedly—and nervously—signed the official contract to write Generation Ex. Ten years later, I’m sitting in a booth at Panera, munching on a Greek salad just like I have on so many productive days before, trying to resurrect my writing mojo. The words are harder to come by, not only because my attention at home is desired by my curious four-year-old who still loves to be attached like Velcro to his mommy, but especially because of what happened four months before the release of my book: I slipped on some ice and sustained a traumatic brain injury (TBI.)

At the time of my accident, in addition to breaking my brain, I sprained my arm. A stylish sling showed the world my clumsiness, and I hardly had to open a door for the two weeks I wore it. My injury was evident to all. But once my sprain was reduced to a scar, my helpful door openers disappeared. I didn’t understand how injured my brain was until I attempted to return to work a few weeks after my fall.

I lasted about fifteen minutes.

The brain is an amazing thing. Like an under-appreciated assistant, it keeps things running smoothly, so much so that we don’t even think of the things on the brain’s To Do list. The first thing I realized that a healthy brain does when I returned to work, was filter out sounds and sights so that one can focus on what is needed at the moment. An injured brain can’t do that. So when I returned to work, I was overwhelmed by the cacophony of sounds: multiple radios on multiple stations, multiple conversations with multiple voices. All the noises jumbled together at the level of a rock concert and I was amazed anyone could get anything done. The lights seemed brighter too, so I looked for my sunglasses. Any movement seemed lighting fast and I was disoriented. I plopped in my chair to take it all in. And I promptly fell to the floor. My sense of balance was out of whack as well. In my confusion I became aware of another sensation, nausea. I would be sick for the next ten months, rarely keeping anything down and losing forty pounds. I made it to the bathroom just in time. A co-worker drove me home after I washed up.

I sat in the silence of my home wondering what had just happened to my life.

In the months of therapy that followed, a phrase used often by my neuropsychologist was “your new normal.” My brain would eventual untangle its twisted neurons and I would heal, but I would never be the same. The challenge ahead was to grieve my losses, make peace with my new limitations, and adjust to my new normal.

My losses were significant. No longer able to multi-task, handle the pressure of deadlines, or even string words together in a coherent or timely manner, I lost my day job, and my burgeoning writing career. Despite my financial frugality, without an income, I lost my savings, retirement, and home. More than a couple friendships fell by the wayside. I lost the freedom to drive on busy or unknown roads, at night, in rain or snow, to go to concerts, or amusement parks, or do activities I loved like playing volleyball, where there is a risk of hitting my head or falling.

On a more basic level, I lost the ability to take my health for granted. Throbbing headaches, blurry vision, light and sound sensitivity, muddled thoughts, and extreme fatigue are my constant companions. My family and friends know that I can never offer a definitive RSVP. Each day is a new lottery. Will it be a rare good day when I can be productive and play catch up? Will it be yet another fair day when I choose my priorities and let my rock-steady hubby pick up my slack? Or will it be a bad day when snuggling my son all day in my quiet, dark bed is the best that I can do?

Perhaps the greatest loss is the loss of memory. I have about a three week window where I can recall events as active memories, like a video. After that, my mental memory is gone and I have to rely on photos. Photos are doubly important to me now. They are reminders the life I have made with my husband and son, but more than that, they are my memories. When I think back to our wedding six years ago, I can’t actively remember a thing. My only “memories” are the photos that I review often. I take dozens of photos each day: where I parked the car, an item in the store I want to research at home, and lots of pictures of everyday life with my family. I live in the moment and when the moment is gone, so is the memory. And I love my life today too much to want to forget a thing.

So, you may wonder, what has happened since my accident to get me to the life I love today?

As you can imagine, after losing my job and anticipating the loss of my home, I was in a very dark place. I was angry at God that just when I fulfilled my lifelong dream of publishing this book, He allowed my ability to write to be torn away. I was terrified as I considered how I would support myself in the long life I had ahead. I all but gave up hope that I would marry or have the family I wanted. I am grateful that I don’t remember those days, and am especially grateful for the friends who stayed close to me in those days when I couldn’t stand myself.

Being surrounded by reminders of the life I had lost, I decided I needed to move. It was scary to think about because I had no idea what kind of job I could get. (I didn’t yet realize that the answer to that question was none). My last boyfriend lived in Ohio and I had some friends there. It was comforting to me that they all met me post-injury and didn’t expect me to be who I no longer was. As I considered the move, I would spent a week there trying it out, and then come back home to Michigan for a few weeks to rest.

On my second trip to Ohio, a friend and I had made plans to drive to Cleveland—about an hour away—to go to a place with free ballroom dance lessons. We were both recently single and much of our conversation that night had to do with our frustration with guys. I half-joked that I joined Match.com so that I could get some dinners. (Terrible, I know. I was in a really bad place!) When we got back to her place, I showed her the site. I did a simple search of guys in Cleveland to show her how the site worked. Up popped a blond Dutch IT guy. I’m not sure if I even looked at his profile, but as I moved the mouse around the page, I accidentally clicked on the “wink” button. My friend assured me that she was not ready for online dating, so I logged off and we called it a night.

The next morning, I had an email from that Dutch guy. His name is Niels de Jong and he is now my husband. For all my talk about getting your stuff together before marrying, I had to break my head and lose everything first.

Our courtship was short but steady. I had always prayed that Mr. Right would be open and upfront with his feelings. Niels knew right away that he wanted to marry me. As you would expect, it took me a little longer, but because of his stable, consistent love, it didn’t take me long to go from “This guy is so fascinating” to “This guy is The One.” Like any good techie guy, Niels Googled me shortly after our first email, and learned about my book. He promptly bought a copy and started reading. He likes to joke that I came with an owner’s manual! The wrong guy might have used my book as a way to take advantage of me, especially in the position I was in at that point. But Niels was the right guy and my book was able to articulate the fears and concerns that I no longer could. Niels understood my hurts and insecurities and gently led me to love. It was obvious to my friends, whose opinions I leaned on especially hard post-injury, that Niels was a guy worth keeping. What finally convinced me to give our relationship a go was when a single friend confided that if I didn’t want Niels, she sure did!

Three months after we met, I was in China with my good friends, and Niels was in the Netherlands with his family. A tsunami wiped out the submarine communication cable between China and the States, but I was able to communicate with Niels in Europe. He contacted my parents to (introduce himself) and tell them I was safe. Since the cable was broken the entire three weeks I was abroad, this very trust-adverse girl very reluctantly gave Niels access to my bank account so he could pay my bills. During those weeks in China, talking about Niels with my friends Dan and Sara--who had been my family in Michigan until they moved abroad--I slowly realized that this was the love I had always wanted.

When I got back to Ohio, Niels and I stayed up late one night talking and our conversation shifted from “if we get married” to “when we get married.” Love was no longer a theory to me.

In March of 2007, Niels and I flew to the Netherlands so I could meet my future in-laws, the wonderful Jan and Kitty de Jong. While we were there, we met up with my family--who conveniently had a long layover in Amsterdam--and somewhere on the streets of Amsterdam, Niels asked my dad for his blessing, which was enthusiastically given. A few days later, on March 19, Niels proposed to me in a purple flower garden at the foot of the Eiffel Tower in Paris with a promise that there will be no returns and no exchanges!

Niels and I were married on July 29, 2007.  I was thirty-five and Niels was thirty-three. He joked that it took so long to marry because I had to wait for him to be imported. He has “worth the wait” inscribed inside his wedding ring. He certainly was! I regret not having more years with Niels, but I suspect my years with him will be better because it took so long for us to find each other and for me to be ready to love him and accept his love.

For all the fretting I did about the idea of marriage, the reality has been a fairly easy adjustment. I think this has a lot to do with choosing the right guy (and yes, we did work through the questions in chapter eight!), but I think my brain injury has helped, too, as odd as that may sound. Pre-injury, I had a type-A personality. Now it’s more like type-Z. I am grateful for things I did not even notice before when I was up to my eyeballs in To-Do lists. I am less independent and more interdependent. I'm certain that this has greatly helped my ability to be happily married because I see myself as part of a team first and foremost. I like to think I am a kinder, more accepting person now. My brain injury has made me realize my need for grace and be more willing to extend grace to others. I'm more willing to give people the benefit of the doubt because I know that the outside doesn't always show what's going on inside. Though my head is still injured, my heart is healthier than ever.

In our early days, I fretted about whether or not Niels’ parents thought I was good enough for their son. I couldn’t imagine that marrying a brain-injured, unemployable, overweight girl was any parent’s dream for their child. But I neglected to consider that ultimately, parents want their kids to find someone who will love them as much as they do, and in that, I am the perfect daughter-in-law.

Jan and Kitty have welcomed me with open arms, if not perfect English. But sometimes you don’t need language to convey love. Niels and I wanted to start our family right away and were delighted to find out we were pregnant less two months after we got married. Niels’ parents were coming to spend an American Christmas with us that first year and we were so excited to announce that their big gift was the upcoming arrival of their first grandchild. Unfortunately, I miscarried that baby in October. Days before their arrival in December, I woke up in a pool of blood. We rushed to the hospital where I learned that I had gotten pregnant again and miscarried again. I was devastated and not at all in the mood to host international guests, even wonderful ones like my in-laws. I had complications post-miscarriage and was in a lot of pain. I managed to get out of my PJs to accompany the family to the Christmas Eve service. Niels was running lights, so we all sat above the sanctuary in the tech booth. Post-pregnancy hormones and the emphasis on mother and child made me a weeping mess. Kitty scooted over to me, put her arm around my waist, laid her head on my shoulder and silently wept with me. This is the tender mother of my husband.

The following December, Jan and Kitty visited us again, this time to meet their grandson, Daniel.

For a lot of marriages, the addition of a baby is a difficult transition. In many ways, the marriage has to be redefined and new roles need to be negotiated. Niels and I only had six weeks of marriage before pregnancy became part of the equation. With my limitations, we both knew that Niels would need to help a lot at home, and he has. Adding a baby so soon also made it easier to determine our priorities. I can't do everything. That's a given. If my son is alive and I've made a meal for our family, it's a good day. Anything else is gravy.

In the three months between when we got engaged and when we got married, Niels and I attended a FamilyLife marriage conference. I was the one beaming as Niels sought out older men to offer marriage advice. One of the best tidbits he received was to recognize that most disagreements are the result of expectations. It isn’t that you shouldn’t have expectations for each other, but that if you find yourself getting short, you should reflect on why you are getting upset. The answer is often that you have expectations that aren’t fair (“Why couldn’t she read my mind and know that I wanted to…”). Once you are aware of the often unspoken expectation, you can respond to the tension in a better way. We have found this to be a great help in our marriage. 

So much of marriage is defined by our attitude towards it. In addition to expectations tripping us up, so can our evaluation of it at any given point. One way to understand that is to consider how people tend to have the idea that if you are disabled, you are only as good as your worst day. While I do have more than my fair share of bad days, and an even greater number of so-so days, I also have a few pretty good days each month. When I consider the quality of my life, I can look at the rough days, or the common days, or the great days, or I can see the peaks and valleys of the whole. It’s tempting, on a bad day, to think you have a bad marriage, when in reality, it’s just a bad day, or a difficult season, and that if you hang in there, it’ll get better. On the other hand, when things are going great, it’s understandable, but dangerous, to assume that marriage will always be so easy. Looking at the big picture of your life together is a good way to keep perspective.

One of my favorite marriage traditions is our anniversary gallery. When Niels and I bought our first home, one of the first things I did was buy several matching frames to display along our stairway. Each one was labeled with a milestone date, starting with our engagement and ending on our 40th anniversary. I would have bought one for our 50th anniversary, but since I was 35 when we got married... One of the fun things Niels and I did on our honeymoon was dream about what our life would look like on our first, fifth, tenth, fifteenth, twenty-fifth, and fortieth anniversaries. We wrote up our predictions, and placed them in the back of each frame. Each time we reach a milestone, we read our predictions and then write a bit about what life really looks like at that stage, then replace the label with a current family photo and return the predictions and the update to the back of the frame. We are in a newer house now and it became our home the day our anniversary frames went up. I love walking up the stairs each night and imagining our lives together through the future years. This is the long-term view.

Another last bit of advice from those anonymous marriage mentors that we have put into practice is that we have no secrets. Knowing how quickly life can change makes the value of this easy for us to see. We know each other’s passwords and accounts and have free access to them. I have an idea of who each of his Facebook friends are (even if I haven’t met them), and he knows the relationship I have to each person on my friend list. Early on, it made a fun game for us to reveal parts of our personal history with each other. Along the social media lines, one of the roles we see as most vital is to be each other’s greatest advocates. You’ll never see me say a negative word about Niels online. I may not always feel 100% lovey-dovey toward him, but my words influence how the world views him, and I chose to promote the good.

In the same way, I will never post anything negative online about our son. Because of the two babies we lost, my pregnancy with Daniel was monitored very closely. I think there were very few weeks when I wasn’t at the OB or hospital, and there were far too many weeks when I was confined to bed. This gave me a lot of time to think and pray about what it meant to become a parent. Due to my complications, our little family spent the first week of Daniel’s life in the hospital. The little hospital room was our little cocoon. Help was just outside the door and I had nothing to do but love my boys. I don’t think I’ve ever been so blissfully happy. 

Then we came home.

Like most new parents, we were pretty overwhelmed by this needy little guy. One of my friends told me that for the first three months, your only goal is to survive. Man, she wasn’t kidding! It was rough. But we got into a rhythm and I quickly fell in love my little mellow yellow. (He was a serene jaundiced baby).

When I was writing Generation Ex, the chapter I struggled most to write was chapter 5 (Finding Home for Ourselves). I wrote that “While home is a place to others, home is often a memory to us.” Being married, being a mom, makes home a place to me again. It is a physical place, sure, but it is truly an emotional place, too. 

When I am with my husband and son, I feel at home.

Living with a brain injury means that I don’t get out a lot. The world is a loud, bright, fast-paced place. I can only handle it in small doses. A year ago, Niels and I built our dream home. We built it with the rest of our lives in mind. As we thought out our floor plan we thought about what we needed with a young son, what we would need when D is older, when he’s a teen, when he leaves for college. We considered what we would need if/when either of us had mobility issues and could no longer master the stairs. We thought about who else would use our house: our parents who may stay for weeks or months at a time, D staying with us during or after college as he establishes himself, friends who visit or just need a place to stay on their way to somewhere else. We also wanted to practice hospitality, to open our home to visiting students, coaches, teachers, refugees. We knew we wanted our house to be the one that our friends—and D’s—wanted to come to so we designed it to be safe and quiet and with room do to all the things we like to do. When we moved in one year ago, there was such a comfort knowing that we could live here comfortably for the rest of our lives.

I have at times, felt a little guilty that maybe I am being a little too materialistic because I am so attached to our home. What I am realizing at this moment is that our house is the tangible evidence that I have finally found home for myself. It isn’t just the building, but the family, the memories we are making, the long-term prospective of our family being here over the years, the tangible “us-ness” of it. It is our dream house because for nearly forty years I have longed for and dreamt of home. I feel incredible blessed and lucky to call this space my home.

Ten years ago, I wrote Generation Ex in the wee hours of the night, scribbling down analogies and anecdotes in between a very full-time job, church and Bible studies, socializing with friends, first and last dates, and enjoying the ever-affectionate company of my adoring Shih Tzu, Bailey.

We lost Bailey, my heart-on-training-wheels in 2011, just shy of her tenth birthday. I will be forever grateful to my mom for giving her to me, knowing I needed that furball to teach me to love and be loved. After her passing, we learned that our son is severely allergic to dogs, so there are no more puppy paws in our home.

Today, I am enjoying life in the slow lane. A busy day means my son has to be driven to preschool, or I have a doctor’s appointment, or maybe we have company for dinner. But never all those things. I read books about trains, space shuttles, Curious George, and the Bible. At naptime, we all nap. My writing now comes in rare spurts, rare in frequency and rarely when it’s convenient. Our blog gives me an outlet for the little bits of creativity that manage to shine through. I have become domesticated. I love to cook and decorate our home. I may have an obsession with gallery walls.

One of my favorite word pictures from Generation Ex is “The act of de-mom-ifying or de-dad-ifying took away from us the very things we most yearned to cherish: the artifacts of our history. Ten years later, I now understand that putting photos on the walls of our family home is creating the artifacts of our son’s history.

Ten years and a day ago, I never would have guessed that a brain injury would be part of my future. Looking back today at a decade of living with brain injury and I'm grateful for this part of my personal history. It's not always easy, but it has brought me love and it has brought me home. For that, I am grateful. 

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  1. Beautifully written! Thank you for sharing.

  2. I live with a brain injury too. I have for 31 years; since I was 20 and in a head-on car collision. Since I had massive facial injuries and a broken neck, the drs were more concerned with that than my hard-bumped forehead. I found out about 2 years later that I didn't just jam my left hip joint, I actually had fractured it! But, MRIs weren't invented in '82 so nothing showed up on an x-ray until a couple of years later when the deterioration of the joint began. I had to wait 26 years before getting it replaced. Then I found out last year that I have the defective DePuy hip; you know the one you see in the TV advertisements for a lawsuit. Yep, I have to have it done again! But, I didn't get classified as a brain injury til 20 years AFTER the accident so I didn't have to live under that stigma as a young adult. Now, I just take it in stride. (I'm soooo making that crafting table!!!!)

    1. Hi Kimberly, I'm not sure how I missed this when you wrote it, but I'm glad I saw it now. Thank you for sharing your story. It's not a fun club in which we are members, but it feels a little less lonely when you meet others who can relate. (I hope you make the table and send me a picture!)

  3. I just bought your book, Ex Generation & love it. I totally understand about home & feel the same about home as well. Thank you for writing this blog post.


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