Vulnerability, Warts and Whiskers

Vulnerability isn’t a topic I thought I’d be exploring on this trip; though it’s an issue on every trip I’ve ever taken. Anytime we step out of our comfort zones we push against our personal boundaries; whether they be physical, intellectual, or emotional.

The physical vulnerability I anticipated. Living with epilepsy and brain injury I knew they would offer their unique challenges. Sharing the roads, often shoulder-less, with semis, logging trucks, people texting and driving, and holiday traffic, can be jarring and wear on your nerves. Most drivers give me space, every so often someone will crowd me to make a point. Tourist traffic on Vancouver Island and the Olympic Peninsula was so prolific that the sound of cars steadily passing became numbing and energy sapping. One of the perks of towing your canine companions in a trailer is it is much more visible than a bicycle, and you can decorate it with reflective decals, flags, and flashers. It’s also three times as wide as the bicycle and motorists will give me a wider birth, most of the time.

img_6713
Crossing the Astoria-Megler bridge connecting Washington and Oregon.

Intellectual vulnerability: challenging your preconceived conceptions, expectations, route planning, and the soundness of your intellect. I thought I planned well; this trip has been bouncing around in my head for years. Despite being familiar with the route, I couldn’t control the weather or prevent several heat waves from hitting B.C. and the Olympic Peninsula. I was happily anticipating the cool misty weather of the northwest. It laid waste my expectations on how many miles I could cover. The heat zapped me, and I ended up taking quite a few extra rest days and covering fewer miles. Then, there’s Houston, my effervescent and unpredictable brain. He’s most mischievous when I’m tired or in a stimulating environment, which includes: bright or fluorescent lights, noise, and people. When Houston is tired, he’s a trickster. More on Houston and his shenanigans later.

Emotional vulnerability has ended up being by far the most challenging and unsettling. I know I have health limitations, and I work hard at compensating and managing them, really hard. It often feels like a full-time job. Sharing or admitting I’m struggling isn’t easy for me, and I often wait until it’s too late, I’m drained, confused, completely inside my head, and shut down emotionally. I become a befuddled old grandpa, chasing kids off my lawn. Intellectually I understand it’s better to fess up before it goes too far, but, even if I’m willing to let my guard down I often don’t realize it even if I’m not consciously trying to push through something. I’m not a lot of fun do be around when I’m in my catatonic state. When I get like that while on the road, I pull over, break out napping paraphernalia, and the girls and I will take a siesta. When I arrive in camp: pitch the tent, walk the girls, feed the girls, feed me, walk the girls, and crawl into the tent. I’m in bed sometimes by 7:30 pm, up at 5:30 or 6:30 am.

When I’m not touring I usually plan carefully: monitoring and managing my energy levels before I’m out and about in public. I’ve lived alone most of my adult life; I’m used to just being me, warts and whiskers when I’m home. At the end of the day, I have enough energy to do the basics and crawl into the tent.

Receiving help and support isn’t something I’m comfortable with either. I receive it awkwardly. I take it as a sign of weakness; people might find me needy, annoying, and pitiful. I also didn’t want to be a burden. I’ve lost a lot to the brain injury; my fierce independence and shredded dignity are all I feel I have left.

img_6831
Cape Lookout State Park was magical. I stayed on for four days to recharge my mental and physical batteries.

This trip so far, 625 miles, has had so many layers to it. Intense joy, so overwhelming I feel like I’ll burst, to such intense emotional turmoil that it opens the floodgates. I’ve cried out of joy and sorrow more on this trip than I have in years. I’m not a crier, though I might have to reconsider that belief. I find cycling hypnotic and meditative, soothing and restorative emotionally and physically. I wonder if that’s what’s causing my hardened shell to crack?

Card Punched?

My last bike tour ended with a seizure; this tour is beginning with one. I normally have tonic-clonic seizures–I will gaze unresponsively, temporarily forget who I am, where I am, and what I’m doing. Or, I’ll be talking to someone, and my brain hears gobbly-gook, or I’ll speak gibberish.

IMG_5863
I think I was 12 the last time my knees looked like this. 🙂

Occasionally, usually with gaps of 1-2 years, I’ll have a grand mal seizure. This is what most people think is epilepsy. Full or partial body convulsing. Fortunately, I know when I’m about to have a grand mal; I feel odd and yellow-y. It gives me a few seconds to stop and prepare. This time, I was talking to someone who I didn’t feel comfortable seizing in front of, the tremors started, and I tried to make a run for a more private location. Clearly, I wasn’t thinking, you can’t seize and run. LOL. I only managed a few strides before my legs gave out. I vaguely recall landing on my knees and elbow and trying to crawl. Gratefully it was quick, and I didn’t lose consciousness.

It is an intensely personal and intimate experience. I feel very vulnerable; my body and mind are not under my control. Afterward my body feels like I ran a marathon and my mind is foggy and confused. I sob, overwhelmed with confusion and completely disorientated emotionally and physically. It takes about 30 minutes for the fog to lift, and hours to start thinking clearly. It can take days to recover energetically.

Last seizure I ended up with a concussion and two sprained wrists, that’s the reason I had to abandon the tour. If it wasn’t for the injury, I could have taken a few days off and resumed. This time gratefully, the only injuries were deep abrasions on my ankles, knees, elbows, and muscle soreness. I look like a four old who took a tumble off her scooter. Interestingly, my leg muscles feel as if I had run hills. It’s bizarre, and oddly fascinating how my body feels post seizure.

I’m hoping that my seizure pattern stays the course, and I won’t be due for another one for at least another year. Ridiculous as this might seem, the fear of having a seizure that was hovering in my thoughts, has lightened. It’s not logical, but I choose to believe I’ve had my seizure card punched, and I’m done for the year. I’ll still be careful, watch my energy levels, and take the necessary precautions, but part of me feels a bit liberated. Got that out of the way.

It brought to light how much I do worry and think about it, and how self-conscious I am. I had a grand-mal in front of someone once who didn’t respect my privacy and wasn’t trustworthy. It was a bad one, and I was out of it for a while. Fortunately I was in a doctor’s office. The last thing I remember is this person shouting, her mouth gaping open like a bass going for a fly, as the waves started to take over and I went unconscious. The Uruguayan healthcare professionals assumed she was a family member, didn’t realize she was a coworker and disclosed private information to her. She, in turn, acted as the town crier to my coworkers and employer. She recounted the event in colorful detail as if it was a source of entertainment at social gatherings.

It was a violation and left a lasting impression. It’s bad enough to have to manage your life as an epileptic, but, adding the stress of someone witnessing you in a vulnerable, intimate moment and abusing it, adds another complicated emotional layer. Before that experience, people had always been kind, and it never occurred to me that could be an issue.

Fortunately, it’s not in my nature to cower. Though it’s a shadow roaming around in the back of my head, the part of me that is feisty and determined is more powerful. The emotions are jumbled, but the determination to live life fully usually prevails.

I wasn’t going to break out the gray or purple ribbons for this tour: gray for brain tumor and purple for epilepsy, but I am now. My last trip it helped to educate people about brain tumors and epilepsy as well as connect with people who were experiencing it personally. I don’t proselytize– if someone asks about the ribbon, I’ll share my story. Interestingly, the people who ask about the ribbons almost always had someone in their life who were recently diagnosed with one or the other, and it felt good to help ease their fears and offer them support. It’s hard to understand how it impacts your life until you’re in the thick of it. It helps me see that although I’ll never be who I was BT (before tumor/brain injury), I can see the progress I’ve made.

IMG_6610
Gray ribbon for brain tumors.

I’m excited and ready for the trip to begin. I’ll take time to make up some ribbons. Janet’s Roadtrek has returned from the shop and is ready to go. Everything, despite the obstacles, is coming together. Today we’ll pack and prep for tomorrow’s departure. Woohoo.

Shouting Declarative Command Family

I stayed at Ma Tar Awa campground on the Viejas reservation where I encountered the Shouting Declarative Command family. I was marveling at the quiet, being one of just a few campers, sitting in the shade of a sycamore tree, ahh. Then an SUV clambered in, parking 50 yards or so away, and out came tumbling Mom, teen son, pre-teen son, and young daughter.

Birdsong was replaced by their unusual staccato speech patterns. No one in the campground had to wonder what they were thinking, saying or doing. It was all out there for us to enjoy. I think I could count on one hand how many full sentences they spoke. They communicated almost purely in declarations or commands.

My favorite exchange was when mom was in the bathroom across from the campsite. The teen son shouted from the campsite picnic table:

“MOM! You hung up on me!”

Mom bellowed from the toilet “I couldn’t hear you!”

Son “You HUNG up on ME!”

Within seconds, pre-teen son started banging on the bathroom door: “MOM!”

Mom shouted a flurry of something or other back.

Preteen wailed “I JUST WANT A HUG!”

One minute it was harmonious chaos, the next an eruption of angry words, shortly followed by someone shouting “I LOVE YOU!” Then giggling and back to harmonious chaos.

From what I could tell none of them had a private inner thought bubble, it was all expressed. “I’m playing! I’m playing” “I’m eating!” “I’m going to the bathroom!” “Watch me!”

It was such a scene it was amusing and not irritating; I felt like Jane Goodall stumbling onto the set of Saturday Night Live.

You never know what you’re going to get at a campground. It keeps it interesting and fine-tunes your ability to find humor and ways to maintain your sanity and peace of mind.

The days journey in photos:

IMG_5002
Chuck, he races now in the Master’s division.

I met Chuck while I was setting up the sisters outside of Starbucks in Alpine, California.  We struck up a conversation and Chuck graciously offered to go over the rest of the route in California and Arizona.  We poured over the maps, and he shared with me his assessment of the different routes available.

IMG_5004

The morning ride, leaving Ma Tar Awa campground.  The mist from the coast made for a dramatic ride.

IMG_5008

Looking back towards the campground in Viejas.

IMG_5023

The morning started with a push up to Old Highway 80.

Campland on the Bay, San Diego: Tough Day with Perks

Today was a tough day. I had a total brain blank 10 miles into the day and went in the wrong direction after missing a turn, causing me to do a big climb twice. I was near tears because I couldn’t “see” the map. Even Google audio prompts didn’t make sense. I started to panic and then just shut down. A man in a BMW pulled up to me while I was in the bike lane parked against the curb, and ripped into me. His timing couldn’t have been worse. I went 3+ miles off course in steep terrain, with no leg juice left, on what was supposed to be a 38-mile day.

A little background would help here; I had a craniotomy to remove a brain tumor 12 years ago and, as a result, have brain damage, my “executive skill set” took a hit. One of the challenges I have now is I can’t read maps. I look at a map, but I can’t absorb and process it correctly. It’s like trying to read kanji. To decipher a map I have to patiently break it down into digestible pieces. If I’m tired, multitasking, or already confused about something, I can’t even do that.

Yesterday it was very hot, hilly, with aggressive drivers and traffic. L.A. was a breeze in comparison. My brain was completely overloaded, and the twists and turns that the ACA map takes through La Jolla was challenging.

I just tried to let it be, adjusted by shortening the day. Luckily I found a place in striking distance that was affordable, albeit an expensive resort campground. Four pools, jacuzzi, laundry, hot “free” showers, electricity, and water. I felt so fragile when I pulled up, the counter guy was super sweet and helpful, and that helped change the air around me.

The brain blank was scary, emotional, and a little concerning. But, this is just how Houston is. (My brain’s nickname is Houston, as in “Houston we have a problem”.)

As a former backcountry ranger who regularly relied on maps, it can be an emotionally tough blow at times because I used to do it with such ease. In the past when I looked at a topo map I saw a three-dimensional world come to life.

I need to remember on this trip to sit quietly and go slowly in tiny steps and try to break down the map. Today there were a lot of weird turns and detours through La Jolla, which, by the way, is NOT on my potential desirable places to live list. It’s a hell realm. Yuck.

Fortunately, the trip doesn’t have a lot of tricky navigation or obviously I couldn’t do it. Today was just a reminder that 1. Houston will be Houston; respect that and adjust accordingly. 2. I’m not in stellar shape; accept that and be patient as it improves. The bottom line is I need to be patient, more compassionate and have more realistic expectations.

It wasn’t all bad, pedaled through some beautiful coastal areas and someone pointed out the famous San Diego dog beach. Enjoyed watching the furry sisters racing around and frolicking in the water. Bodhi and Dory individually made some new buddies.

And I got to soak in the jacuzzi (yahoo!) with a woman and man with green hair who had enough tats and piercings to make a metal detector explode.

There’s always a silver lining

Debating about whether or not to go to the border, so close. But, part of me is afraid I’ll just want to cross and start pedaling. The urge to go south is REALLY strong. But today was a wake up call that I need to be more realistic and go slowly, stay within my safety zone, sort of ish.

IMG_4757
Off leash dog beach near San Elijo
IMG_4768
Bodhi joining in on a game of fetch.
IMG_4785
Bodhi in classic Jack Russell form
IMG_4822
The expression on this dog’s face–
IMG_4879
Feeling fast
IMG_4927
Dory’s signature post swim sand bath. Our tent will be a sandbox by morning.
IMG_4989
The rig
IMG_4993
Approaching La Jolla. Little did I know.
IMG_5001
Scored a bag of Orijen dog food. This is an awesome pet food company.  High quality, locally sourced, organic, and grass-fed when possible.  It’s a Canadian company, check them out.  
IMG_6440
Morning at Campland on the Bay. At night I store the panniers in the dog trailer and Bodhi likes to wait for breakfast perched on top of her future breakfast.
IMG_6452
My office. A very kind maintenance man lent me an extension cord to move the office to the picnic.
IMG_4784
The sisters ripping it up.

McGrath Campground, Oxnard, CA

McGrath was a trippy campground. It was officially closed but sort of open to hiker/cyclists, if you knew they had that caveat and if you happened to stumble on someone near the gate. I arrived to find the gate locked and impassable. In frustration, I called the campground and got a VM and left a frustrated VM. Then, like magic, the host appeared and let me in as he was leaving.

The campground was empty save two campground host couples. One couple was packing up; it was their last day.

It was ghost townish and looked abandoned and way past the expiration date. Eerie to see a campground so naked and empty. That said it was super fun too, no leash law for the girls. They had free reign and were beside themselves with joy with their new found freedom. They set to exploring instantly, never straying too far from camp. They visited the hosts and their dogs first and fanned out from there.

After I had put up the tent, we walked to the beach. A longer hotter walk than I anticipated with evil little star shaped seeds that bit into flesh and paw. The surf was crazy rough, rough enough to throw fist size rocks at one’s ankles. Yes, fist size and larger. It seemed a sadistic surf, luring one in and then blasting sensitive ankles with large stones. I tried to tough it out, but the waves and their stones were relentless. I splashed myself down from head to toe to at least cool down and get a feel of the ocean.
Even Bodhi, who loves the water, wanted nothing to do with it. They ran through the tail edge of the surf to freshen up, but there was no swimming.

We made a disappointed retreat to the campground.

Beautiful little mini wetland alongside the campground. There was ducks shoulder to shoulder, an aquatic duck version of Jones Beach. There was barely any space on the surface. When they spied the girls they took off with a lot of squawking and quacking, forming a thick cloud of duck chaos. There seemed to be a variety of ducks in the mix.

A little reluctant to admit this—but I set the picnic table on fire trying out the MSR Whisperlite International stove for the first time. I would roll my eyes at any camper who was foolish enough to take equipment on a trip without testing it beforehand. And there I was, so unfamiliar with the stove I lit up the picnic table.

It wasn’t engulfed in flames, but there was a healthy patch of flame about the surface area of an adult hand. My brain is challenged by things like diagrams and instructions. Clearly it wasn’t very present for the initial lighting of the stove. I came to realize I had the stove upside down, so when I primed it, I was, in reality, priming the picnic table. Oops. Is this how picnic tables end up with those burn hollows?

When the table lit up, I tossed the entire stove onto the sand. I blew furiously at the table while frantically fanning with my hands. Flames out, back to the stove, still burning on the sand. Picked it up, it flared up, and I instantly had a vision of myself without eyebrows and eyelashes. (This happened once while lighting a stove in NYC.) Mercifully it went out.

People with brain damage should probably stick to stoves they are familiar with, lesson learned.

Painstakingly went through the directions, googled a video on YouTube. Success. It makes a big difference having the stove right side up. Who knew?

Beautiful cool night serenaded by strange piercing birdsong throughout the night. Despite off-tune birds, I slept well.

The morning was beautiful; the lighting was moody from the mist that was still lingering from last night.

 

IMG_4440
Setting up camp at McGrath Campground, Oxnard

 

IMG_4436
Love these funky coastal trees.
IMG_4434
Ghost campground
IMG_4421
Little wetland area alongside the campground.
IMG_4420
Starting to play around again with B&W.
IMG_4416
Anyone know if this fall color or year round? Not familiar with local flora.
IMG_4411
Girls were in heaven, off leash with dunes, water and an empty campground to explore.
IMG_4407
Mist came rolling in like a white wall around 4pm.

 

IMG_4444
Bodhi’s quest for the highest and softest perch has been realized