Six months after sustaining a traumatic brain injury, I distinctly remember the moment my doctor said “You might never be normal.” Both Josh and I started crying, as we clung to each other and to the hope that she was wrong. Nearly four years later, now that I have finally returned to work and have been getting more and more comfortable on the bike, I’ve had moments where it felt this TBI was a thing of the past. It was simply a “blip” in the course our lives, and I’ve started to wonder if I have finally reached “normal’.

It was at the end of May when I started back to work part-time. Three days a week I work a 6 hour shift. After a couple of weeks I told Josh that I thought things were going really well and maybe I should pick up another day, or try 7 or 8 hours.  After 4 years of recovery, isolation, and loneliness, I am loving being back at work, surrounded by people, stimulating conversations, joking and laughter, and yes the paycheck is nice too. So why not add another day? That evening I came home from work, completely spent and feeling rough. Frustrated that only hours earlier I had mentioned working more hours and now I was in bed, Josh kindly lectured me about patience. Working 18 hours was the plan, and he told me I needed to stick to that plan for a few months, not two weeks. He reminded me, for maybe the millionth time, that I need to be patient with myself, which clearly is not a strong skill of mine. As Josh likes to tease, my only “patience” are the “patients” at the clinic. I promised him that I would be content with my 18 hours through the summer, and reassess in the fall.

Even on the bike I had been building  more confidence. I’ve been able to increase my speeds downhill, and handle rough washboard dirt roads, puddles, and mud.  I was feeling positive about our upcoming 200 mile bike-packing trip – the Ramble Ride, which starts next week. Unfortunately, that confidence was shattered  last week as I found myself sitting on the side of the road, as symptomatic as ever.  Often I know exactly what set me off, what I overdid, or what nasty storm triggered my symptoms, but sometimes it is difficult to pin point. This day was the latter.

We had been out on a long ride with friends, and I had felt a bit “off” all day. I was irritable and anxious that morning, with a little bit of a headache. That irritability and anxiety increased through the morning, and then I became desperately hungry, despite the fact that I had been eating throughout the ride. For me, I notice on bad brain days I can get massive sugar cravings. An injured brain can have altered metabolism, and those sugar cravings were incredibly intense and constant for the first year. They have been much less frequent since then, but on my bad days it comes back with a vengeance. Whether these cravings are truly metabolic, hormonal, or emotional, I can’t say for sure, but all I know is that they have diminished in frequency over the years. Anyway, we stopped at the tiny store in the town of Ward , but it was closed for the day, and I thought I was going to cry because I needed a cinnamon roll.  I use the word “needed”, because my brain was so focused on getting to that store so I could get a cinnamon roll that I truly was fighting back tears over the fact that I couldn’t get one. I was in full toddler mode, not able to verbalize my needs, but very upset that those needs weren’t being met, and ready to throw myself on the ground crying and screaming. I stood outside, ate the 2nd half of my sandwich, a package of Honey Stinger Chews, and a Chocolate Waffle, but  I NEEDED A CINNAMON ROLL, and things really spiraled from there.

We started the long descent down Left Hand Canyon and within a few miles the nausea and vertigo started. I stopped under the pretense of taking off my jacket, which I did, and then I stood there for a few minutes alone with my head on my handlebars trying to pull it together. Clipping back into my pedals, I slowly continued down, riding the brakes heavily. A few minutes later I saw Josh pedaling back up to check on me. He turned and pulled in behind me as I continued descending. After another mile I was pretty sure I was about to vomit. Pulling over to the side of the road, I sat down in the gravel, head between my knees, as the world spun around me. Josh held me as I rocked back and forth clutching my head. When I get highly symptomatic I often hold my head tightly finding some comfort in the pressure. In this instance, I was wearing a helmet, so I was trying to squeeze my head, but the helmet was in the way. My brain function was poor enough that I couldn’t connect the logic of simply removing the helmet, and this led to me being frustrated I couldn’t hold my head the way I wanted to, and fighting back more tears. I felt awful, and I was incredibly frustrated that I had managed this very same descent (in the rain and snow) two weeks prior without an issue.

Thankfully, our friend rode back up to check on us and Josh asked him to ride into town and bring the car back up. I have no idea how long we sat there, but after a bit I was able to stand up and we rode a couple slow wobbly miles down to the park. Josh asked me to pull over a couple times to stop, but I didn’t hear him, and he was apparently terrified I was going to crash. We made it to the park where we waited for the car, then loaded the bikes and headed home. After a quick shower I laid down for a little nap, and woke up 4 hours later to eat dinner and go back to bed. It was the worst I’ve been in quite some time and those setbacks can be incredibly frustrating.

The Ramble Ride starts on July 18th.  It is 75, 75 and 50 miles over three days with a lot of vertical gain. Honestly, I have no idea if I will even make it through Day 1. Lucky for me, I’ve also been having knee/quadriceps issues, and have been working through that with my physical therapist. I’m hopeful that the knee will cooperate, but that is discomfort I can push through. The brain is a different story. Between my recent “nap” on the side of the road, and a having to walk out of a restaurant two days later, because I couldn’t handle the noise, it is clear that my brain injury has not magically disappeared.

Knowing me better than I know myself sometimes, Josh suggested I give my brain a break and skip my last big training ride to join friends for a long run instead. Thinking that maybe a full day on the trails would help my brain and sort out my knee/quad issues, I took his advice and spent a gorgeous day exploring 29 miles of the Lost Creek Wilderness with friends. Both my brain and my knee felt much better afterwards. Perhaps it was therapeutic blood-letting courtesy of the starving mosquitoes?

With only one week to go before the Ramble, I haven’t yet managed even ONE 75 mile ride. I also haven’t done two long rides back to back, much less three. My brain hasn’t cooperated with my training plans, but I will give it my best. If I am left on the side of the road clutching my helmet, there is a support vehicle that can pick me up. For Josh, and myself, I am making a promise  that if I cannot ride safely, I won’t ride. And yes Josh, I give you permission to tell me to stop, but you have to say it loud enough for me to hear. Regardless of whether or not I can finish this ride, I have made enormous progress this year and I am proud of how much I have accomplished. Will I be frustrated if I can’t finish the ride? Yes, of course, but it will have less to do with the ride itself than the general frustration of living with brain injury and never knowing when it will be a good day or a bad day, and when, if ever, I will make it down the road to “normal”.

Only 8 days until my TBI to 200!