Finding the Sweet Spot of Functioning [TBI Rockstars VIDEO]

The TBI Rockstars strike again! Brie and I tackle the challenges of finding the sweet spot of functioning while recovering from an mTBI.

Everyone I know with an mTBI struggles to find this balance. Doing enough to stay sane, but not doing so much that you increase your impairment and crash your life plans. I have struggled finding this delicate balance for the past four years. Some days I win, some days I lose, and some days I’m not quite sure what happened. After overestimating my ability over and over again for years, I have finally found a relatively pleasant, relatively stable place to live. It is a good balance for me, of doing and not doing.

Is there some magical solution? No. There is no one answer for everyone. Brain injury is too individual, too non-linear for one thing to be the answer. Brie and I, however, do offer some excellent suggestions in this video. Suggestions grounded in years of struggling, years of trying to live our lives while also allowing space for our new limitations.

Check out our latest video here:

If, for some reason, the image of Brie and I doesn’t appear in your browser, follow this link to get to our video: https://www.youtube.com/watch?v=7k9aNFjiA54

Note for noise sensitive people: This video has background traffic noise. Brie and I enjoyed a brief sunny moment outside, but I’m near a major road. Don’t use earbuds to listen, as that just emphasizes the traffic sounds. Thanks for watching!

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The Little Things

I fear there is a simple solution, some tiny thing that I am overlooking. I fear that I am suffering needlessly, that there is an answer just a step away. I fear to spend years and years impaired, and then have someone point out one little thing I could have done differently to make it all better. What am I missing? Is it true that if I just did X, took Y, and acted Z, the magic bullet could be administered and I could just go on my merry way?

My hope nags me sometimes, in the background. It taps at the edges of my mind telling me to find it, find the answer. That this complex, difficult problem might actually have a solution.

Because all of us have heard stories of people finding “the answer” – sometimes directly from the person themselves. I did it, and now I’m better! This is it, this is the treatment to do! If you just do X, you won’t have those problems anymore!

And it’s hard not to get caught up in their belief and hope, especially when I want it so much to be true. Yet, with brain injury particularly, I have found that improvement has a price tag, and usually a hefty one. Should I throw my money at the “brain injury problem”? Or should I ignore what the person is saying because they are selling a product?

My desire to protect myself means that I err on the side of no, of not spending the money. A sea of possible treatments – none approved by the FDA or covered by insurance – float before my eyes. Brain mapping. Low Energy Neurofeedback (LENS). Brain balancing. Homeopathy. BEMER products. Precision chiropractic. Pulsed electromagnetic fields. Lasers. No longer eating certain things. Definitely eating certain things. This pill. That pill.  All the pills!

Since my brain injury, I have only added one prescription medication to my daily regime – thyroid replacement. Before my mTBIs, no issue. After the head bonk, I developed a deficiency. It was all worked out several years ago, my numbers brought within the norms, and I haven’t thought much about it since. This past February, I got my blood tested as part of my annual exam – cholesterol (hello 40s!), blood sugar, and thyroid. Results came back showing low thyroid levels, so my doctor increased my dose by 50%.

Will you look at that. Small thing… life changing… missed it. Huh.

Within a week or so of the new dose, I started experiencing subtle effects. Improvements. More energy, mostly. I have been able to socialize longer. Go more places. Do more things. Think more thoughts. I still hit a wall, get overwhelmed or confused, but it takes longer. And my recovery time has become shorter.

It is almost unnoticeable when life becomes easier. It’s subtle. Life simply flows along the same path as before, but just without the constant impediments of brain injury. Six months ago, as I walked through my day, I’d run into one roadblock after another – a brick wall, a dense thicket of brush, a cliff – all of which required attention, all of which required conquering, finding a way around it, or giving up. An extremely draining reality.

I no longer have to compensate every moment for my impairments. Or, maybe that’s not right. I still need to compensate, big picture, but the little daily continuous compensations are more muted. For example, every time I use the computer, I don’t need to immediately switch the white and black settings. I can handle just looking at a regular computer screen, at least for a short while. It no longer feels like a monster trying to melt my brain.

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My usual computer screen these last four years. If you find computer use draining, try switching the black and white on your computer – so much less stimulating. For PCs, look in the ease of access section under high contrast. I switch between normal and high contrast using shift-alt-print screen.

Just one less thing I need to constantly be on guard for. The evil florescent lights still bother me, and the aggressive casual noise around me… but again, their attacks are blunted, their intrusion more like a rude stranger than a serial killer.

This past week, another blood test. My numbers haven’t budged. Now I’m on a 100% dose increase from a few months ago.

A small change, a simple pill a day, and I am experiencing improvements in my life. There was no way, six months ago, I could have survived last week. Passover, then a two day trip with museum and socializing. Return home to spend a day intensely focused on writing, and actually succeeding in choosing a topic, writing, editing, posting and advertising a blog post all in one day. A few days later, socialize with a friend for 1 1/2 hours, then go out that evening to an (admittedly very mellow) comedy show and not have the driving to and from be “too much”. Who the fuck is this? Who the hell is it that can do all of these things?

Apparently, me, Charlie. Apparently I can.

All because of a small pill. How weird is that?

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My smallest daily pill. Seen here with my other supplements – fish oil, flax seed oil, multivitamin, thyroid replacement, and phosphatidyl choline

Thyroid regulation is a basic and not very expensive fix. One of the few basic and inexpensive fixes out there for mTBI recovery. If you don’t monitor your thyroid levels regularly, my mTBI friends, I suggest you start. I will not make that mistake again.

This little discovery has also motivated me to finally call about a sleep study. Since my first mTBI, sleep is no longer easy and reliable. I was once one of those (in retrospect very annoying) people who slept easily, deeply, and for however long I wanted. Not anymore. Now, any noise, any light or slight movement can wake me up at any time. I have used sleep hygiene techniques, melatonin, and herbal tea to bring myself back to a consistently good night’s sleep. However, my neurologist tells me that “sleep disordered breathing may be an issue after TBI that can contribute to cognitive problems”. Well, I’m going to check that shit out and fix it if it’s true. Wouldn’t it be wonderful/ironic/horrible if a lot of my cognitive deficiencies are just from a sleep issue?

I continue to welcome the Universe to make my life better.

So here I am putting along, just a bit more functional now, a bit less impaired. I have learned from my mistakes. I won’t let the little things, the easy fixes, sneak by me again. I might not be willing to spend thousands of dollars on an unproven treatment, but I will definitely take care of what is in my control. Checking my thyroid. Getting the sleep study.  My nature is to focus on the basics, the routines, the slow and long-term solutions. Does that mean I might miss some answer, some solution to my mTBI recovery problems? Yes. But it also means that I know – I know – I am giving everything I possibly can to this moment, this day, this life.

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Brattleboro

“I want to go in the store.” I say to Mary as we walk past.

“Do you need anything?” she asks.

“No, not really. I just want to see the inside.”

And I turn into the Brattleboro Co-op, and see what is there. In truth, I’m too tired to process any specifics. My mind places items in gross groupings. There is the produce section, and there is wine. Here are boxes and boxes of some food items, there is the deli and ready foods. That looks like the bulk section, and there is the checkout line.

A quick circuit. That’s all I wanted. I don’t have energy to “see” anything more in detail today. I am already tired. Headache. A bit fuzzy around the edges. Bolstered up with caffeine, just to make it through the day and this trip.

But I am having a fabulous time. New things to see. New things to do. I love it.

New experiences have become priceless to me, post mTBI. Opportunities use to be everywhere. I might not have taken action, but I could have whenever I wanted. Travel here, climb there, see that – it was available and within my ability, and it wouldn’t have costed me much more than casual amounts of time, money and energy to make it happen.

What a different world. That is not my reality anymore. To do something – anything – new, different, interesting, requires a piece of my soul. At least, that’s what it feels like. Planning. Choosing one thing over many others. Saving up my energy, and then spilling it out lavishly to make the thing I want to experience happen.

Sometimes I succeed. Sometimes I miscalculate and fail. Sometimes I manage to show up physically, but don’t have enough mental clarity left to really connect with the experience. I become worn down to my basic functions, breathing, standing upright, and maintaining a socially normative demeanor. That is all I can do. My higher understanding has stepped behind curtain X until more energy is available to pay her salary.

Today, I am in Brattleboro. Mary and I came down yesterday and attended a reception for an art show she has a piece in. Today, we visited the Brattleboro Museum. My quick trip into the Co-op afterwards was me grasping at my last opportunity for newness, before heading home.

I am so glad we went to the Museum. I didn’t actually have energy for it – the drive down yesterday and the art reception was more than enough for me. But it is unlikely I will be here again anytime soon, and I wanted to seize my opportunity and see as much as possible… within the limits of my current life. The perfect situation for extensive caffeine use, and so worth the expected several day recovery period.

What is the value of seeing new things? The use of having new thoughts? As a scientist, I have spent most of my life appreciating art from afar. I knew it was important, of value, but creativity wasn’t an intimate part of my life. It wasn’t of value in my professional life, nor an efficient way to get things done. I didn’t particularly intend to separate my life from art, but it simply was not a priority in my previous iteration.

Since my brain injury, creativity is one way I found my sanity. It is not the only way – thankfully, there is gardening and growing things, there are animals and insects to enjoy. But writing, and the synthesis and the creation of a new understanding of my life, is now at my core. A new core for a new life. When I was no longer able to fill my life with “doing”, I turned to what was available to me – feeling, emotion, connection with others. I began to understand art, and know how truly powerful and meaningful it can be.

Now, that doesn’t mean I have to like all art, and I don’t. Mary is the one to taught me it was okay to like some art, think other art is stupid, and simply be unmoved by another pile of art. However I feel or respond to an artist’s work is okay. And if I don’t like one thing, just move on to the next set of art displayed because maybe that will have some meaning for me.

Brattleboro Museum had six artists on display. Or, actually, six artist’s work on display. And I ate it up. It is such a pleasure to see new things.

The creatures the first artist created were compelling, and I enjoyed noticing all the old items used in new ways.

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This piano player was part of a constructed group of musicians, with conductor. Through the use of a simple motor and rope, each musician “played” their instrument. It was beautiful. [Artist Steve Gerberich]

The next artist I wasn’t particularly moved by, but I expect I would have loved the full-scale structures her models represented.

The third artist’s work required more time and processing to see. Here is a close-up of part of one of her pieces.

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The woman’s face full of map contours and road lines fascinates me. [Artist Gowri Savoor]

A fourth artist I enjoyed more the concept of his work. He used only black and white watercolors to make his images. How neat is that?

The fifth artist created mesmerizing glass objects

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That moment when I realized the piece was full of old eyeglass lenses was priceless. [Artist Richard Klein]

My favorite image from the sixth artist was the first work in the display. These objects resonated with me; they were so very like objects I have collected during my daily walks since I was injured, put together beautifully.

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Tree bark, a bird’s wing, a dried bean pod, a moth… any of these items I might bring home. [Artist Susan Von Glahn Calabria]

The visit to the museum was wonderful. Art offered me the opportunity to see the world in new and interesting ways. Art allowed me to slip on someone’s view, someone’s experience of the world, and peer closely at each little detail of their life.

Art. Thank you Mary, for encouraging me to make art a part of my life. Where else, but a museum or at an art show, can you see frozen in time one person’s view, opinion, belief, image of our joint life experience? And right next to that, another person’s vision, and another. So many opportunities to step briefly from my narrow worldview, my narrow life, and fly.

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A Woman Named Charlie

Who is Charlie Sequoia?

Me! Surprise!

Hah. It surprised me, too.

About six months ago now, I had a life changing moment. A moment where my deeper self, or perhaps the universe, managed to pipe up and be heard through my own lips.

Mary and I were relaxing in her studio.  Chatting, snuggling, looking out her double doors at the sheep and horses next door.  Peaceful, it was a peaceful day. As I laid there, I realized something.  And, instead of keeping it inside and thinking about it for days or weeks before I shared it, I just let it come flowing out of my mouth unedited and unadulterated.

“I’ve never much cared for my name.  I mean, it isn’t bad as names go, but it doesn’t have any heart.  Kim.  Just one syllable, a nothing.  It ignites no feeling or sense of warmth for me.  I haven’t really had a problem with it; it has suited me well enough.  Thank the Gods it wasn’t Kimberly… that I probably would have had a serious issue with years ago.”

All this comes out easily, naturally.  It is simply an unfiltered truth.  As I think of my given name – Kim – I feel pretty neutral.  I could be saying another word, like “pot” or “soap”, just as easily.  It doesn’t fill me with pleasure, but then again it doesn’t fill me with pain.  I strike my name with my mind, and it doesn’t ring, doesn’t resonate for me.

“If you could choose your name, what would it be?” Mary asks from beside me.

Immediately, I say “Charlie.”

That’s a surprise to me.  I’ve never thought of having another first name.  Really.  I haven’t tried other ones on, as the trans men in my life have, looking for that perfect fit for the new them.  I haven’t wondered, I haven’t dreamed.  The most I’ve thought about names is that scientific study that was done showing people with common names – Mike, Mary, Steve, etc – were considered more likable than people with unique or less common names.  That’s as much consideration as I’d given the name topic, myself.

Until that moment.  “Yes, Charlie.  It has heart.  Doesn’t it feel warm?” I say.  And as I speak, I feel it.  Someone – a woman – named Charlie feels warm and loving and solid.  The name feels like being wrapped in a hug, full of quiet strength.

And sexy. Yes, a woman named Charlie sounds sexy. That mixture of masculinity and femaleness is one of my favorite things.

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My name tag at the VT Pride Center potluck this week. That’s me!

And so an idea was born. And, amazingly, I didn’t forget it. I mislaid it for a week or two at a time, but the new name always managed to resurface. I tried to judge how much I liked it. I wondered whether my interest was a random (brain-injury-encouraged) flight of fancy or a harbinger of a new chapter in my life. I thought of the mountain of paperwork and explanations awaiting me if I chose to take action.

It was hard to get myself to move forward. The only person pushing this thing was me. It’s sole existence in the universe as a possibility was from me, initiated by me, for me. As months passed, I realized that I was waiting for someone’s permission. Someone who knew better? Someone who had a clear vision? Someone to say – yes Kim/Charlie, this is the right thing to do. I left space for other direction to come into my world, but none did. It eventually dawned on me that no one else was going to tell me what to do. No one was going to tell me it was the right thing, the necessary thing. That was up to me to decide.

And so I did decide. I decided to move forward with the legal name change in December. So much in my life I can’t control, but my name… that is mine. Once I made my decision, I found one big hurtle in my path. Explaining it to my mom.

That quickly brought this rolling rock to a stop. And there I rested, un-moving, trying to figure out how to explain. It is only through Mary’s prodding in early January that I am still not perseverating today about telling my mom. Mary helped me. We sat down and talked through why I was changing my name. And that was when a deeper understanding emerged.

Of course, there was always going to be a deeper layer. I can’t seem to get myself to splash around in the shallow end of the pool for very long. My instinct is always to know the deeper reason, the feeling, the motivation. And, when asked, my subconscious was happy to tell the rest of me what was going on. And now I’ll tell you.

The four years and two months since my first mTBI have been hard. So hard. I have lost so much of myself.

I can say those words “lost so much of myself”, and that can’t begin to convey the intricate ways I have lost who I am… who I was. The beliefs I held about myself, my path, all I was able to do, my options, my future… that all changed.

A big chunk of it ended. If not at the moment of that first brain injury, then from the frantic two years afterwards where I cannibalized every scrap of energy in my soul for the sole purpose of trying to keep my job. Please Gods, just let me keep my job. But that didn’t happen. The second brain injury two years ago sealed that reality. I didn’t know I could become even less, lose even more basic parts of myself… but it turns out I could, and I did.

Now, after a year and a half of not working, I’m doing okay. Life feels stable. I know enough about my limitations to not overdo it very often. I save overdoing it for fun things, social things, that I can do a few times a month. Is it satisfying? Yes, if I don’t think about it too hard. Is it enough? Well, it has to be enough, so I guess it is.

I am different. I have changed. I have lost so many parts of myself. I have developed new parts of myself, and new skills. I am a different person. That’s damn hard to accept, because I liked who I was before my injury. But, it is the truth.

Changing my name makes it easier for me to embrace who I am now, four years post mTBI. It helps me remember that I am a whole person, just not the person I once was. I am a whole person, with years of life stretching ahead of me. I am a whole person, and the future offers so many opportunities and choices for me to enjoy.

I have the gift of a new life. I get to take a different path, experience completely different things, and to actually BE a truly different person for the second half of my life. That’s pretty rad, if you take a minute and thing about it. Is it on my terms? No. But within the limitations of what is possible, there is me – Charlie – and I get to live. That is a giant gift from the Universe.

Changing my name gets me “all here”, to fully invest in my new life. This is me, now, and I’m going to own every part of it. I am no longer living in the past, wanting to be someone I no longer am.

No, that’s not right. The past doesn’t disappear. Our past selves just integrate into our larger whole. She is here, she is in me. Kim Wittorff. Just like my derby self is in me. Dykotomous Free. And now, like the newest part of myself is in me. Charlie Sequoia.

Blessed be.

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The Finish Line

Sitting in my mechanic’s waiting room, I breath a sigh of relief.  It’s done.  Cars cars cars is finally done.  No more test driving, no more searching online, no more decisions.  Done.

Thank goodness.

Today, I’m waiting while my mechanic does the annual state inspection for my new-to-me car.  He’s also going to fix a brake issue I knew about before I bought the car.  I’m hoping it costs less than $250, because that’s how much I got off the price of the car to cover the repair. Once my mechanic is finished and I’ve paid, I won’t be back until October when it will be time to get snow tires put on for the winter.

Done. A task accomplished, a goal complete. And I did it all myself.

I feel pretty much like a rock star right now. So accomplished. This is such a big big BIG success for me, I want to take a moment and savor it. It is so easy for me to just think of how it “use to be”, when such an accomplishment was normal, average, and let it pass on by… but I’m not going to do that this time.  This is a big deal.  This is worth taking a moment and acknowledging my success. I did something difficult, I did something noteworthy, I did something above and beyond my normal everyday life.  Yay me!

This car buying thing – it was a hell of a lot of work. I invested many hours, days, weeks of my life that I’ll never get back. It came to a successful ending, because of me. I decided a new-to-me car was needed and that I needed to get rid of my current car. I researched cars online. I went and test drove cars. I got quotes. I negotiated my trade-in value. I went to the bank and got pre-approved for a loan. I found my car. I insisted – over the head guy’s objections – that I would take it to the local Honda dealer to get checked out. I negotiated a higher trade-in value when the car came back with a problem. I dealt with the asshole head salesman who said there was no problem, I was being unreasonable, and took several opportunities to say personally insulting things to me. When financing had to happen with actual checks instead of electronic transfers (??), I drove to Burlington and then to Plattsburgh, carrying the needed check so I could be done. And in the end, I got my damn car.

Yeah. I did that. A serious win for me.

Mary helped me stay on track during one important moment in the car buying process.  It was towards the end of the day, and I was fatigued and starting to get confused.  The salesman had an endless supply of words and my determination was eroding into confusion. A call to her helped me stay on track. No, I did not want to lease a Jeep Renegade. I knew that, but hearing her tell me that helped me stay the course and get an excellent vehicle at an excellent price.

And it’s pretty. When I bought it, I thought it was gray because I didn’t actually have the energy to “see” the car color. But it’s brown, which I like even better.

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It also has tinted windows – another thing I didn’t notice at first.

A 2012 Honda CR-V with all wheel drive, electronic stability control, side curtain air bags, good reliability, low miles and all at the right price with a great trade-in deal.  Yes, exactly what I asked the universe for.  Thank you Universe.

As car buying has slowly stopped taking all of my energy over the last few days, and as I’ve come out of my obsessive focus… I’ve noticed that things have changed while my mind was elsewhere. I am so far from myself, now. Distanced. I see all of the parts of my life I trimmed away, set aside, or let fall (splat) to the floor to allow myself to successfully focus on this one thing. And it is disconcerting.

Over the last four years, since my mTBI, I have struggled to recreate my identity and sense of purpose. I have cultivated interests and goals and connections. I have slowly – so painfully slowly – gained momentum in my life, direction and energy and motivation. And when I set all of that down to focus, it shattered again. No, shattered sounds violent. More, my life components have faded into un-enlivened puddles on the floor.

I’m not where I left myself a month ago. I feel fragmented. I feel detached from everything around me. My goals, my interests, my connections now feel like someone else’s, or like something I use to feel, a life I use to live. In this moment, I feel nothing for any of those things now. I mean, I know I was really invested in and cared about changing my name when I started searching for a car a month ago. Now… it could be someone else who files that name change paperwork.

Pre-injury, I could hyper-focus on something for a while and then set it down and pick up my life where I left off. Or perhaps more accurately, pre-injury I hyper-focused over and over again throughout the day. I’d leave awareness of myself and the rest of my life, focus intently on a certain thing, then come back from that and just continue on. While I was “gone”, while I was focused outside of myself, my integrity of self and the life energy of who I was didn’t fade, didn’t disappear, didn’t leave. I effortlessly keep the integrity of my life and sense of self together, then.

Now, I come back from focusing on something else and find myself thoroughly distanced and disconnected from my life. I expect this is just a function of limited energy.  There wasn’t enough energy to both maintain my integrity of self, and to focus strongly on something else. Bullox.

Like most things having to do with this brain injury, there is likely no fast or easy fix. The re-donning of my robes of self, of desire and motivation, of dreams and goals and choices is not a seamless, easy thing for me anymore. There is simply not enough of my spirit, my self energy, to hold who I am together when all of my energy is focused outward.

I suppose it makes sense.  I know even when I have all of my energy focused on me and my immediate life, it is a crap shoot what parts of me I’ll remember.  Which thoughts or ideas I will recall, what feelings, what plans. It seems random which bits of my self show up at any particular moment.

So now, unexpectedly, I’ll need to schedule some time, plan time, for my self – my normally ragged, fragmented self – to coalesce again into a whole. Or what passes as whole right now.

That sounds a bit bitter.  I’m not particularly upset by it, just another accommodation in a day full of accommodations.  A new one, so I need to adjust my expectations to reflect that and give myself time to adjust from one task (car buying) to another (living my life).

Regardless, I succeeded.  I set a goal for myself and I brought it into being.  I am the master of my fate, I am the captain of my soul. Please take a moment to revel in my success with me. I – me, myself and I – bought a car.

That is something I am proud of.

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Cars Cars Cars

I shift the seat forward a little bit, making sure I can reach the pedals. I adjust the rearview mirror and side mirrors, and try to find a comfortable angle for the seat back.  After a few minutes of shifting and frustration, even getting out of the car to adjust the headrest, I give it up.  But I came here to test drive this car, and damn I am going to test drive this car, uncomfortable seat or not.

So I do.  I take the 2015 Nissan Rogue for a spin.  It’s decently priced, with low miles and the features I’ve decided I need. Since it’s a dealership instead of a used car place, the saleswoman joins me on my test drive.  It’s a bit awkward having someone with me while I try to assess a vehicle, although thankfully she doesn’t talk much or try for a hard sell.  She directs me along a path that I’ve driven before, the same path I was directed along by another dealer, in another car, earlier this week.

The Rogue is unremarkable.  It’s fine.  That’s about as warm as I can get.  Road noise is louder than in the Ford Fusion I drove earlier this week. The ride is relatively smooth, smoother than the Pontiac Vibe I drove three weeks ago.  Visibility is decent, gadgets are fine, the saleswoman is competent. I’ve never considered a Nissan before, but Consumer Reports – an independent organization that assesses vehicles and other consumer goods – has given the Nissan Rogue a good review and reliability rating for the 2010-2015 models, so I thought I’d try it out.

The uncomfortable seat, though, doesn’t get more comfortable.  And it’s hard for me to seriously consider a vehicle that isn’t even comfortable to sit in.  After the test drive, I thank the saleswoman and take my leave.  Another car to cross of my list, just like I crossed off the Toyota RAV4 last week.

Cars cars everywhere, and not one I’m sure I want.

When I started my car-buying journey back on February 3rd, it quickly became clear how much information was out there and how many decisions I needed to make. Price, make and model, features, age, miles, reliability – on and on and on.

Honestly, in my normal life, I don’t think about cars.  Not even a little bit.  If it gets me from point A to point B and doesn’t need a lot of repairs – it’s a good car, or good enough. What else is there to say?

But it turns out, there is a lot more to say. I have come to realize my priorities have changed, and changed significantly.  My belief that bad things will pass me by, that bad, life-changing things can’t and won’t happen to me… well, that youthful innocence is gone, now.  After four years healing from a concussion that never went away, and a second hit on the head making it impossible for me to continue to work, I now know weird little injuries, strange happen-chance accidents, can be life-changing.  And that has made me re-prioritize my car-buying choices.

Safety.  That is my number one concern.  I mean, I and everyone else who drives a car acknowledges safety is important, but now it is different.  Now, it is really really important I not get into another car accident.  Or, if I do get into one, that I am as protected as possible.  Another concussion, another hit on the head, could be catastrophic – plain and simple. I envision losing cognitive ability permanently, adult daycare, home health aids and other stuff I never want to have happen.

That is terrifying.  Really terrifying.

So, safety.  What is safe, and how much does safe cost?  Which of the safety features out there actually matter? What is just expensive fluff? I turned to Consumer Reports (CR) to help me choose what I need in a new-to-me car.  And it provided some answers.

Electronic Stability Control (ESC) has been proven to prevent accidents and rollovers.  It came onto the scene in 2007 and became required in vehicles in 2012.  For Subaru Foresters, it only became standard in 2009.  It was offered for the 2007 Subaru Forester (my current car), but only at a higher trim level. Some vehicles have had it standard starting in 2007 – like the Honda CR-V – and some waiting until it was required in 2012.  CR conveniently provides a list of all recommended vehicles and when they adopted that technology.  So, my new car needs to be at least 2007 and may need to be even newer depending on the precise make and model of the vehicle.

Another safety feature to look for is side curtain airbags.  My 2007 Forester has a side airbag – like a pillow – carefully located so my head will bounce off it in case of a side impact.  I found a picture at iihs.org

SubaruForesterSideAirbag_From_iihs_org_2018

My 2007 Subaru Forester’s airbags. Good thing my head will hit that little pillow during an accident. Poor Jimmy in back is SOL.

Here is a picture of a side curtain airbag, which Mary’s 2011 Honda Fit has for both front and back passengers.

HondaFit_SideAirbag_2011

Ahh, no flying glass inside the cabin here. Thank goodness. A safer option.

CR agrees, side curtain airbags are the way to go.

There is a lot of new safety technology out there – automatic emergency braking, forward collision warning, blind-spot monitoring. And, it seems like it’s really great.  My reality is, though, that I am on a fixed income… a limited income… and cars that new, with that many options, are simply outside of my price range.  I’m not going to worry about what I can’t change, so I’ll set those newer safety features aside to consider during the purchase of my next used vehicle.

So, I’m looking for a 2007 or newer vehicle with ESC and side curtain airbags.

Next, I consider whether to go with an all wheel drive (AWD) or front wheel drive (FWD) vehicle. I know what I want – I want an AWD vehicle.  But do I actually need it?  Times have changed.  I no longer live at the end of a long dirt road up a hill.  Now, I park every night perhaps 15 feet from a main road that is maintained, plowed, and salted on a regular basis. My injury has limited my movement and activity significantly.  I don’t go out much at night, I rarely drive on a dirt road, and if it’s truly bad weather, I just stay home.  That sort of lifestyle doesn’t need AWD to get by.  Rather, why not save thousands of dollars and simply go with FWD? In that spirit, I test drove a Toyota Corolla and it seemed fine.

Then I road around the Islands a bit with Mary in her Honda Fit – a FWD vehicle – and saw how her driving experience was different from my AWD driving experience. Every layer of snow blown onto the road, every ice patch, every uneven questionable traction situation required her attention.  She had to think, consider, judge what was needed to stay safe – slowing down, stopping, changing her route.  She had to use mental energy and flexible thinking to problem solve situations in real-time.

Seriously not my strong point, post mTBI.

I don’t want to invest that added level of consideration, judgment, decision-making into my driving experience. Rather, I need to make driving as easy as possible. There are still days I just don’t have the energy to drive safely – the concentration and awareness of my surroundings are simply beyond me. The last thing I need is to make driving more difficult, make it so I can only drive where I want 80% of the time, instead of 90-95% of the time. Easier is better. AWD it is. Next issue.

Like every car buyer in the world, I want a car that is reliable.  Again, I turned to CR and their car analysis.  They provided a convenient two page spread of all the most reliable vehicles, and what years they are reliable,and also specific cars to avoid that have had higher than usual problems.  I used that as a starting place, determined which recommended ones have AWD, and started looking.

And that is why I just test drove a Nissan Rogue, a car I didn’t even know existed until a few weeks ago. And a Subaru Legacy between 2010 and 2014.  And that Ford Fusion – another car I didn’t know existed – which had 2012, 2015 and 2016 as good years.

It has been satisfying, my friends, to turn fully into this task.  Realizing I can only focus on one thing at a time has given me the freedom to really focus on that one thing.  And it feels good to be making progress, one test drive at a time.

Hopefully, soon, this can be done.  I do want to get back to the rest of my life as soon as possible. Writing, friendships, household projects.  Thankfully, though, my life is such that I have the freedom to focus. And, since I have the freedom to focus, I have the ability to succeed.  I thank the universe for that blessing.

Wish me luck finding that perfect used car with ESC, side air bags, AWD, low miles, the right price and a newish year.  Hopefully it won’t be too long in coming.

Blessed be.

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Impaired

“Love, you are impaired.” Mary says calmly as we sit on the couch together.

I feel my body unconsciously twitch away, denying that truth.

“You are impaired.”

This time my eye twitches, but I feel something resonating deep in my chest like a strummed guitar string.  Good. Something buried is rising to the surface.

“You are impaired and disabled; that is why you cannot work.” she says, looking at me directly in the eye.

It’s working.  I feel the sadness start to rise in my chest; the tears soon follow.  She holds me as I cry, stroking my head and saying soothing things.

This is part of what we do for each other.  I’ve been cut off from myself for the past few weeks, escaping into tasks and things that sooth the mind. I’ve been passing the time, not living it. After so many years, I am familiar with my patterns.  I know – even if I don’t know – when something is bothering me, based on my avoidance behavior. Avoid dealing with it, avoid feeling, avoid connecting. In the short term it can work, but it also makes my connection to life and myself so tenuous, so flat and two dimensional.  I try not to lose months or years there anymore.  Now, it is only weeks.

It percolated up through my subconscious today that I might be deeply upset about my neuropsych testing at Dartmouth a few weeks ago.  I told Mary that calmly, because I couldn’t touch the actual feelings.  And she helped me bring it to the surface to feel and flow out of my life.  Immediately after crying and feeling those yucky feelings, I felt better, more connected.  Quite helpful.

And, I mean, the neuropsych testing went fine.  It went great.  It went so much more smoothly than it might have otherwise, because my friend Blaze offered to drive me to and from my appointment on her day off.  That made it just a long day – two hour drive each way, 6 hours of testing there.  That’s a lot, but so much more manageable than the three day affair it was turning into as I considered how I’d do it on my own.

On my own would have involved me driving myself the two hours there the afternoon before, staying the night and doing the testing the next day.  Then, resting another night so I could drive home safely on day three.  That’s a lot – not even considering the detail laden, energy intensive planning necessary for me to travel alone.  Every stop planned, every meal decided on and written down beforehand, every map printed and studied before driving.  So much work.  But, thankfully, avoided with the help of a friend.  Thanks Blaze!

The actual neuropsych testing… that was rough. It was tiring.  More, it was the failing, over and over again. It was having testing be a heavy, tedious thing that I wasn’t good at.  Tests that, truly, did not compliment my ability.

Of course, that’s the point.  I look forward to the results in another three weeks or so.  I’m curious where my cognitive deficits are now.

Yet, damn.  I’m use to acing standardized tests, without effort.  Hell, pretty much any test.  And this was a reminder that that just isn’t me anymore.

Testing, in the past, was my comfort zone.  I am use to interacting with the tester as an equal.  I suppose that sounds arrogant, but there is a certain way tester and testee interact when they both see each other as competent adults.  A certain tone, a certain energy.  And my testing started that way, because – heck – that’s how I expect things to be.  But it changed, as time went on.  As my shine wore thin.  As I made mistakes and stumbled and had to be corrected over and over on tests that I know – in a previous life – I would have completed with flying colors.

What upset me the most were the tests I’d done before.  Eleven months after my first brain injury in 2014, I had a neuropsych evaluation done locally.  I came back as “average”.  To them, that meant I was fine and that there was nothing they could do.  It didn’t matter that I was use to “exceptional”.  It didn’t matter that I went from the 98% percentile to the 50% percentile, cuz that was good enough.  No, that didn’t help me at all.

The testing I did two weeks ago included a few tests I remember doing back in 2014. This time, though, the experience was quite different.

One test involved picking up these small key-shaped rods and sliding them one-handed into slots facing a variety of directions.  I found a picture of it online:

pegboard.jpg

I remember doing the test in 2014, and having it be a breeze.  It was quick and easy and no problem.  Not so much, this time. It was rather disturbing to watch my right hand struggle to slide the key into the slot correctly. As I went down the line, my hand started shaking from the strain of making it happen.

Dude.  Quite upsetting to struggle so much with something that was so easy and thought-less before.

The second test I remember from 2014 was creating designs using white and red blocks. Each block had sides that were all white, all red, and some half and half.

WechsWISC

The Wechsler Block Design Test

She’d show me an image and I needed to duplicate it. Again, last time, I remember it being easy.  The last image, specifically, I remember. In 2014, I completed it much more quickly than the tester expected – less than 10 seconds. She wasn’t prepared for me to say “done” and had to scramble to stop the timer. I felt pretty proud of that, actually. This time…well, this time I did eventually finish it. But it definitely didn’t take 10 seconds. Maybe a minute or so? But to know that I once knew how to do this without effort… that made it twice as frustrating when I couldn’t solve it and had to begin over again and again.

So much lost, from my continuing to work.  So much lost, from my second mTBI.  So much lost, from what I once had.

The last thing from the testing that upset me was the math story problems.  Talk about bringing me back to fourth grade.  Again, something I use to kill at, pre-injury.  Once upon a time, math was my specialty.  Actually, anything with numbers. Numbers and I have always been friends. After my injury, it’s been much harder to figure numbers reliably in my head.  But, my basic comfort with numbers is there… and I guess, my expectation that I can solve math problems when asked.

Guess not.  No, that’s not fair.  I did okay.  Pretty good even.  I started flailing towards the end, knowing my mind wasn’t holding the numbers correctly in my head.  The last one she gave me stuck, because I knew I should know the answer.

Sandra rides her horse for 60 minutes every day.  Today, she rode her horse 15% less. How long did she ride her horse today?

I think what killed it was that it is a two-parter.  First, you have to figure out 15%. I got that, waveringly, in my head. Second, you need to subtract that amount from the 60 minutes (answer = 51 min for those who are curious).  I couldn’t remember what to do with the number once I had done the multiplication.  When I tried to remember the next step, I lost the first number and had to start over again.  Over and over again.

So frustrating.  I don’t give up easily, though, so I would have still been there trying to figure it out if she hadn’t insisted time was up.

Sigh.

On the plus side, I had been very concerned that I would test too well – too competent. I didn’t want to fight to still have time and space to heal. Hah.  In retrospect, clearly not a concern.  Just more data to support my current life, focused on healing and connecting.

But that doesn’t stop me from being upset – deeply upset – about my current truth.

I am impaired. I am impaired. I am impaired.

There is no shame in that. It just is.

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