“Rebirth-day Road Trip: Celebrating the Life We Have Chosen”

On November 8, 2015, Patrick will reach the TBI 2-year-mark of his brush with death. Whether we celebrate, ignore, embrace or deny it, the day will still come upon us, like an unstoppable train. But when you live with the life-altering effects of traumatic brain injury, can any response to a yearly reminder be the right one?

The answer of course, is no. The choice of how to engage TBI anniversaries is a highly personal one, and varies for each of us. For some, the day is an excruciating reminder of what has been lost; a life once cherished to which we can never return. This is obviously understandable to caregivers providing love and support to those minimally conscious or vegetative, but is not in any way exclusive to them. Many spouses, family and friends grieve the person they lost in TBI, and for some, life is a daily agony. As for survivors who live with brain injury, many choose to ignore their anniversaries as well, while others choose to celebrate their second chance of life. There is no wrong or right here. However you acknowledge or don’t acknowledge the day, the truth remains that TBI changes everything forever.

Last year, when Patrick’s one year anniversary was approaching, I wasn’t sure how to handle it. I personally felt my PTSD kicking into high gear as the day drew near. It was like a lurking monster hiding in the shadow of my silhouette. I started to have flashbacks, and nightmares in which my pre-TBI-Patrick was featured prominently. During my waking hours, my fear of him getting reinjured seemed to intensify whenever he was out of my sight for even a moment. Evil_shadow_by_TomatoBoy

In those early days, Patrick and I had just moved in together, and life was a whirlwind of intense adjustments. But on the last day before we moved in, I was lucky enough to have a moment to sit with my feelings and reflect. As I did this, flashes of our story came to me even stronger than before:

The hotel room, phone in hand, hearing the words “brain dead.” A empty airport gate with a man vacuuming aggressively, until he saw my tears, turned it off and backed away. The sight of Patrick for the first time. Seizures and lurching. Then, eyes open but no light in them. The first time he squeezed my hand. The sound of his laugh again. Hoyer Lift transfers. Changing and bathing him in the darkness at 2 a.m. Learning to sit up. His trache coming out. His peg tube feedings. It’s subsequent removal. The fist time he moved his paralyzed left side. Learning to stand. Writing “Thank you, Andrea.” Learning to speak. Saying “I love you.” Learning to stand. The first voicemail he left me. The first time he hugged me standing up. Tying his shoe. The first time he ordered a pizza without my help.

I knew right there and then, that I was going to choose to make November 8th a day of profound celebration for the rest of our lives. I dubbed it Patricks’ “Rebirth-day,” and decided that from there on out, every year we would do something together we had both never done before. We would have professional photos taken to commemorate the day, and create an old fashioned photo album to mark the passing years of breath, life, love, pain, struggle and recovery.

Last year the theme I chose was “Fear/Hope/Gratitude.” We went to a park together, just the two of us at sunset and celebrated Patrick’s second chance at life. We wrote down the things we wanted to change about ourselves, read them aloud, and then lit them on fire, to symbolize letting go of Fear. We wrote on colorful balloons the things we hoped for in the future, and released them to the sky to symbolize Hope. And then we spoke about the things we were grateful for, lit a lantern for each blessing, and set them on a lake, to symbolize the calming quality of Gratitude. Afterwards, we went to dinner and even got a cake with a candle on it. A few weeks later, the photographer sent us the photos, which were stunning and btw, so worth the money. (I’ll have to share that album with you guys another time, but here is one of them.) 

This year, Patrick’s 2-year anniversary is falling on a day that we are already having a local fundraiser for his continued recovery. Although that indeed is very special, it just seemed like we needed to do something as a couple, to acknowledge and celebrate all we had accomplished this year.

So we decided to celebrate a few weeks early, by getting the heck out of dodge.

The theme this year for Patrick’s TBI anniversary is “A Passion for Recovery.”  The theme for me is two-fold; the first exemplifies the determination, devotion and hard-work we have put into recovery every day this year. But the word passion in its archaic form also meant to suffer, and we would be remiss to ignore the suffering that is interwoven with recovery. Nothing about this year has been easy, and there have been many tears cried, crippling exhuastion, and days that one or both of us has wanted to give up.

I could think of no better way to celebrate this theme, than to see beautiful Autumn ablaze in nature. So, Patrick and I are embarking on a two-week Fall Foliage road trip through New England! It occurred to me that he trees, rich with chlorophyl, may look to us like they are dying, and yet, if you look at them another way, you can see that they are not dying, but transforming. It is that transformation that brings about such a passionate and vibrant variation of color for the eye to behold. I got to thinking, isn’t that similar to what a TBI warrior is also like? We see them when they are first hurt, in their most fragile state, and fear the worst; that they are dying. But for many, it is not a death, but a transformation. And that transformation brings about a colorful and wonderful new person with new insight. If all of us, on both sides of the spectrum, had never gone through what looked like a death, we wouldn’t effect the world the way we do now. And so it has been this year, for me and Patrick.

Cannot wait to see this beauty.

Cannot wait to see this beauty.

I was an avid traveler before Patrick’s TBI. This is our first real trip in two years, and I’m excited/nervous/scared about it. I am used to having every detail planned out when I go on a trip, but TBI does not allow this! All we have are our accommodations booked and a skeleton map of when/where we are traveling. And you know what? I kind of like that. I am all “decision-ed” out. This is trip is only possible because of the generosity of a few amazing people who reached out and offered to help make it a reality. We are eternally grateful to them and for their support, and I am somewhat relieved to know that for once, we don’t have to micromanage life, and can just go with the flow.

I just want to get in the car and drive away, with my love as my co-pilot and our cat on his lap. I just want to leave behind the doctors appointments, the therapy sessions, the verbiage and vocab , prognosis’s and estimations. I just want to be a girl, on a trip with her man, off on an adventure. I want to smell the crisp, chilly air, with the smell of log-smoke in it. I want to drink hot apple cider, and eat pancakes with Vermont maple syrup. I want to go to a bon-fire and have a picnic beneath a waterfall. I just want to be. And while I know that TBI will come with us, and there will be unforeseen challenges of traveling with it that we are not prepared for, I know we will handle it.

The summer was hell. We were so consumed by TBI that we totally missed it. But Autumn? We are not going to miss this beautiful time of year. Autumn is our time, to remember that we are not a number or a statistic, but two human beings, made from the stuff of stars. We, like the trees are not dying but transforming. We are alive, and we are going to celebrate it.