“What 2,257 Miles On The Road With My TBI Warrior Taught Me”

Patrick and I have been home now from our “brain-cation” for two weeks, which have zoomed past us in a blur. However, the memory of our road trip through New England, is still as vivid to me as the flaming sunset of foliage, that met us along every road.

When I booked our trip, I really had no idea how it would go. How would we get around? What would Patrick’s stamina be like? Was I over-reaching with our packed trip of sight-seeing? And most of all, was this type and length of travel even possible with a TBI? We bravely set out on the road together, having not a single one of these questioned answers.

Gorgeous Fall in New England

Gorgeous Autumn in New England

Most of you followed us on our journey through Facebook, and saw our pictures of the amazing trip we took. But what you didn’t see, was of course, Mr. TBI; the third wheel on the trip. And in the beginning, I’ll be honest, I tried to ditch him.

This was illustrated best on the first day of our trip. I had been excited about beginning in Boston, where I had visited Patrick in college several times as a girl. What I was not prepared for, was that it would be nearly impossible for us to navigate a busy city with his mobilities issues.

Boston.

Boston.

Patrick insisted on taking the T (subway), as he always had in the past into Boston. I thought a cab was safer and faster, but at the same time, I try very hard to weigh the risk of an activity vs. the squashing of initiative when he wants to try something new. He was SO sure he could do it, and I didn’t have the heart to say no.

So we set out, step-by-baby-step, to the T, inside the elevator and onto a platform. WHOOOSH.. a flurry of hurried humans began rushing past us as we exited. Somehow we made it to the platform, and onto a train, just as it was pulling away. And naturally, Patrick nearly fell over as it zoomed off, before I could find him a seat. My fear of him being crushed in the doors of the subway intensified, as I wondered if we could make it out in the little time appropriated at a stop. We got out, but then walked in the wrong direction to an elevator that took us to a transfer train, instead of the street. So we had to walk alllllllll the way back, and past our starting point to make it out. It was extremely hot, noisy, and packed with unhappy people. Even I felt “flooded”, and almost had a panic attack. Once we got out, we crossed a busy road to Boston Commons, and Patrick quickly fell asleep on a park bench, on my lap. It took us an hour and 45 minutes to navigate the subway, and that was it; energy banks were empty for the day.

Me and my baby, passed out on a park bench.

Me and my baby, passed out on a park bench.

As I sat there, I will admit, that I threw a big, ol’ pity party for myself. There we were in this beautiful city, that suddenly felt completely out of our reach. And here were all these people, enjoying this gorgeous day in the park, free to do whatever they wanted. I was in awe of their effortless, graceful movements.  The reality was, that Patrick’s TBI was screaming like a siren…“You have to slow down,” and I was resisting. I had built up in my mind a whole series of expectations for this trip. But as I looked down at Patrick’s exhausted face, and stroked his new head of hair, I realized I had a choice to make: I could move at the pace afforded to us, or I could be miserable for two weeks.

So, in that moment, I decided to let go of my expectations and to allow our trip be whatever it needed to be. If that meant moving slowly, then I would find the beauty of moving slowly. If it meant doing less, then I would need to learn to be more present in what we were experiencing together. And that is precisely what happened. It was beautiful.

Love

Me and Him

The rest of our trip was spent in the countryside, and for that I was eternally grateful. The rural hills and epic mountains, were a healing balm for both of us. We took our time, driving through Vermont, the White Mountains of New Hampshire, over to Acadia National Park, down to Portland, to Salem Massachusetts and then finally home. Driving became almost a form of meditation to me.

So beautiful...

The roads were so beautiful…

While I was adjusting to a slower pace, Patrick was going through an opposite adjustment. The trip awakened his beautiful spirit, and he became super-charged with motivation to do more than ever before. He wanted to walk everywhere. He insisted on making phone calls to the front desk of our hotels for whatever we needed. On our Moose hunt, he insisted on stepping into a very tall van, (in the dark mind you), using just a tiny step ladder.. and he did it! Later on, he asked me to let him do the laundry, by taking the clothes on his walker tray to the basement of the B&B. Each time he pushed, I was reluctant to let him try, but soon I realized that it was time for me to step back and let him do it. By the end of our trip, we had gone from me very nervously allowing him to walk without me short distances, to him being fully independent with the walker.

Freedom.

Freedom.

And so, it seemed the lessons we were meant to learn came together, and from it this beautiful experience was born. At the end of our trip, Patrick walked through the WildLife Park of Maine in 3 hours, and I walked very slowly alongside him. Unable to hurry along, I caught myself staring up at the trees, noticing the different shades of red and orange, and hearing the acorns beneath my feet. He was pushing forward, while I was learning to be still. 

Patrick Finally Sees His Moose!

Patrick Finally Sees His Moose!

The trip had many other benefits as well. Patrick’s anxiety and depression decreased significantly, while his confidence and independence increased. There was a cognitive boost in clarity and attention. I even saw a facial expression return that I had not seen in two years, and like always, it was a flood of joy to my heart to remember it ever existed. Best of all, we really connected as a couple again. We tasted hot apple cider and doughnuts in Stowe, got Ben and Jerry’s Ice Cream from the factory, and sampled Cabot Cheese. We drove the Kancamagnus Highway in NH. We took the oldest cog railway to the top of Mount Washington. We saw the Portland Lighthouse. We held each other at a homestead in Monkton Vermont in the wilderness, and listened to the rain in the dark. Each day we did just one thing, and it took us most of the day to do it, but moving at that pace helped me really stay present with Patrick.

Apple Cider Doughnuts and Hot Cider :)

Apple Cider Doughnuts and Hot Cider 🙂

 

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The Cog Railway….it was scary!

The success of our trip was due largely in part to our ability to allow TBI to travel with us, instead of trying to pack it up in the trunk or leave it on the highway. I was still a caregiver, and for each magical moment, there came a handful, if not a bucketload of unforeseen challenges. As for Patrick, his recovery did not get shelved for two weeks, but rather his immersion into new experiences inspired him to push harder, and allowed him to make gains he never had before.

The trip eventually caught up to me, as I had indeed been overly-ambitious. I got sick around day 9, and spent a few days in bed. Patrick was immensely considerate, making me tea, bringing me tissues, and letting me watch marathon episodes of Bear Grylls in Man Vs. Wild. So on top of all that I’ve already mentioned, I also learned that in the future, a less intensely packed schedule would probably serve us much better.

Sicky girl.

Sicky girl.

In the end, I drove 2,257 miles with my Patrick in just 14 days. I went quite the distance, but it was Patrick who went even further. By the time we came home, Patrick had shattered his previous records of stamina (20 minutes on his feet), as he was able to walk the cobblestone streets of Salem, Massachusetts with his walker for about 3 hours (with short periods of rest), traversing 1.6 miles in that amount of time. This unbelievable gain allowed us to essentially ditch the wheelchair completely, and two weeks later we still haven’t used it once in our home.

A picture of what is possible, when you believe and work hard.

Look what is possible, when you work hard, and don’t give up.

 

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