Documentation

“Hey Charlie, hold up!”

I pause on my way back to the waiting room and look over. There is my neurologist down the hallway, waving me down. I loiter and watch as she juggles several files in her hands, putting down this, picking up that.

“I’m ready for you” she says as she walks towards me. It isn’t until hours later that I appreciate the deliberate care necessary to call me Charlie, when the last time we met I was still Kim. That thoughtfulness is indicative of the care I receive at this hospital.

As she passes me at a brisk pace, I follow and quickly catch up with her. As we walk along there is time to chat, to say hello, for small talk, but I’m tired from my drive. I prod my brain, but nothing comes to me. I say nothing. She says nothing. Soon enough, we arrive at the appropriate exam room and sit in our respective places.

After we’re both settled, she asks me “So, how have you been doing?”

I knew she’d ask that. How else would she start our meeting? I planned ahead and made notes about what I would say, loosely. With a briefly-lived sense of triumph, I whip out my mini notebook and look at what I have written down.

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Meeting prep and notes

Damn. I didn’t organize my notes; I didn’t put them in the order of a normal conversation. I just listed thoughts as they came to me. Not very helpful now. What goes first? What will answer her question? I look down my list and try to get my tired brain to jump on command, to find the right response. My mind only manages a heavily sedated shuffle, so I decide to start with politeness.

“Good, I’ve been good.” That’s a safe, polite response. “Some things have gotten better since that last time I saw you.” True, without being overly effusive.

Now what? Ah, here we go. “My PCP increased my thyroid dose last year, and since then I’ve had more energy. It’s really made a difference in the quality of my life, things are much more pleasant. I mean, it hasn’t fixed everything or made me ready to work or anything, but the little things. It’s helpful.”

I quickly balance that with the greater truth. The truth I try not to notice very often because it would drive me crazy, but the truth every doctor and decision-maker in my life needs to know. “I am still very limited. I have fatigue every day, every single day, that interferes with my ability to function. All my other symptoms are still around, too.”

I fear saying anything too positive from habit. Overly positive things, words denying or ignoring my limitations, are dangerous. This medical professional only sees me for 30 minutes or an hour once or twice a year. I present well – I know I do. The caffeine helps. Since I don’t looked screwed up, I have to use my words to paint a picture of my life and my daily challenges. My default, my tendency is to gloss over problems and focus on the positives. I know that. So I make a deliberate effort to tell the whole truth, both good and bad.

Our conversation flows naturally and easily. I’ve been seeing her for several years now. We chat back and forth, and I refer to my notes often to make sure I say what I have to say, and ask what I have decided to ask.

“I’m investing my extra energy into making friends, to developing friendships.” This is something that is very important to me. Making and growing my friendships now will create the stable and secure foundation I need to be healthy.

“Since upping my thyroid, I have started being able to read more complex writing. I joined a writer’s group, and most of the time I’m able to read through writer’s work and participate during the meeting… most of the time. Sometimes it’s too much, but usually I can do it.” I still struggle with reviewing 40 pages of other peoples’ writing twice a month. It’s gotten easier with repetition, but it is still hard and takes hours of my time and energy.

Overall, my neurologist seems pleased that I’ve had marked improvement. I definitely am pleased. She offers some advice on supplements. I request her analysis of several alternative therapies I haven’t tried yet. I ask her to make sure to put detailed notes in her office visit report, specifying my limitations. She kindly adds several diagnoses to my chart. Another good meeting.

As I climb into my car for my return trip, I assess my energy. Low. I’m exhausted. I woke at 3:30 am this morning and couldn’t get back to sleep. I already drove 2 hours to get here and I have 2 more hours of driving to get home. Out comes the caffeine I expected to need for the return journey. After some rest, some food, some time for the caffeine to hit, I’m on my way.

In another ten months or so, I’ll make the trip again. Not because anything particularly earth-shattering is happening at these meetings. No, I’m not going to be cured here. Rather, it’s all about documentation. Documentation, documentation, documentation. In order to continue to have the space and time and money I need to heal, I have to document and prove my disability on command. So I do.

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Dental Accommodations

I recline in the dental chair, full of anxiety. I have done my best to prepare for this event – an early appointment, 30 mg of caffeine in my system, and plenty of rest beforehand. Regardless of the preparations, though, I am still nervous. I never know how it will go, post mTBI, never know how my body and mind will handle the stress of dental work.

Today, I’m not having anything particularly big done. I’m having a small cavity filled, and a cracked tooth prepared for a crown. Both could have waited weeks, months, if I wanted them to. But – insurance. It’s the end of the December, I have plenty of insurance left, and next year I have some expensive work that is necessary. So, the more I can get done now, the better.

That all seemed well and good last week, when I decided to keep my appointment. Now, though, I actually have to do it. My experience so far, this appointment, has been impressive. A warm stone to hold in my hands, and a warm neck wrap to help me relax. A dental assistant that actually sees me and cares about my comfort. As I squint at the bright overhead lights, she offers to turn off the lights until the dentist shows up – offers, without me having to ask. So helpful.

The dentist walks in, greets me by name, and gets to work – focused, not rude. First, of course, is the numbing shot. I clench my fists as I always do, and try to keep my jaw relaxed. He says, “Do you want a hand massage while I give you the shot?”

What? I know this is a holistic, touchy-feely sort of place, but I have never heard of such a thing. But, what the hell! “Sure!”

The assistant moves down and gently takes one of my hands. She nicely rubs it for a moment, then squeezes on the headache pressure point in the webbing between my thumb and forefinger once the dentist actually pokes me. I notice the sensations in my hand, but more than half of my attention is taken up by the poke poke poking happening in my jaw. Having the dual sensations is distracting, though. “Huh, that does really help”.

“That’s why we do it.” He says with a smile. I smile back.

He leaves and I wait to get numb. And wait.

“Is your lip tingling yet?”

I hate questions like this, ones where I have to be aware of a physical sensation, judge what is going on, and then communicate it in words. For some reason, since my injury, that is particularly hard for me. I don’t know why, but it is. The sensation changes? My focus changes? I don’t know.

Now, I focus with all my might on my lip. Some tingling. I touch my lip, it tingles just a bit, but I feel the sensation of my finger. “Nope. Not yet.”

“I’ll come back in five minutes.”

More waiting. Another round of questioning. Actually, now, my lip isn’t even tingling. Another round of numbing agent is injected. Another round of waiting. Still, nothing.

“Let me get my association, Dr. M, to do it. She’s right handed, and sometimes that makes it easier to get this corner of the mouth numb.”

Shortly, she arrives. A different numbing agent. Another searching injection. Ugh. And then it is done.

“How’s your lip?” I’m asked a few minutes later.

It’s tingling. I touch it, and I have a hint of a sensation on the surface of my lip. But mostly it’s numb. What do I say? So hard to make a decision. Is it numb enough? I guess so. “It’s numb.”

The procedure begins, but first I settle my sanity-saving accommodation in place. I hate the sound of dental drills. That high pitch squealing is horrible. Everything else, I have found some way to cope with, but dental drills – no. In the handful of years since my initial injury, I have had several occasions to block out the sound of dental drills. At first, I used double protection – earplugs in my ears, then muffs over that. It works pretty good.

Last night, though, I remember what I use to do about dental drilling. Music. Loud, fun music to drown out the screech of the drill. I don’t much listen to music, since my injury, so I didn’t have any tunes on my phone. After a bit of searching, I found a solution – my old ipod! I’m glad I kept it. The workout tunes I put on there a decade ago will be just right for this experience. Even better, I can change songs and control the start/stop without actually looking at the display.

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My trusty old ipod, still kicking after all these years.

I put in earbuds connected with my ipod, then put my earmuffs on over them. As soon as the dentist starts the drill, I turn on my music. Loud. Louder than I would ever listen to anything. But almost, almost, I can’t hear the drill. Perfect.

The rest of the procedure goes well. I start and stop the ipod with ease to answer small questions or hear directions without having to change my setup. As soon as he picks up the drill, the music is blasting again. Normally such sound would be unacceptable, but in this situation, and with the caffeine flooding my system, it’s okay.

Eventually, it’s all over. My mouth is numb, then sore. When I get home, I cry in Mary’s arms because – although I made it through just fine – it is simply way too much for me. I’m exhausted.

And now, my final accommodation. Rest. Lots of rest. I have nothing scheduled for the next two days, and I can just rest and heal. Another scary difficult task made possible with rest and accommodations. At this rate, nothing can stand in my way. Blessed be.

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Rest Days

The sun glares strongly this afternoon, filling the entire house with brightness. Each of my three cats have positioned themselves around the living room so their faces are in full sun, yet they aren’t close to each other. I sit down on the couch and make a phone call, my weekly call to my mom to catch up. I, like the cats, position myself in the bright sun’s rays while I talk – or mostly listen – for the next half hour.

After the phone call, I sit for a while longer, staring at nothing. The weight of fatigue I woke up with this morning hasn’t abated; perhaps it is even heavier now. Without any internal debate, I let myself fall sideways and stretch out fully on the couch to enjoy the sun. A new decorative pillow comfortably supports my head, and my granny square blanket easily pulls off the back of the couch to cover me. I sigh and make myself comfortable.

Today is a rest day. An unplanned rest day, but a rest day none-the-less. In this iteration of my life, they sometimes just appear, are sometimes just required without warning. Five years post mTBI, I know the signs and no longer fight what my mind and body needs.

In the past, it would have been different. I would have become angry with myself, for needing the rest. I would have tried to push through. I would have felt agony about having to change or cancel my plans. I would have felt like a failure and worthless, self-loathing permeating my being at my own perceived inadequacy.

I’m glad that part of my life is over, the struggling part, the denial part. Much better, for me and everyone else, to allow and rejoice in my ability to take care of myself and to craft the life I need.

It isn’t 10 seconds after I lay down on the couch that a cat visits me. It is my old deaf cat, Eleanor. She comes and sits directly in front of my face, requesting attention and blocking my sun. She seems content to be there, both close to me and in my sunlight, but I chivy her away. I want the sun. She comes right back and sits again. As I patiently wait for her to lay down, the sun highlights every detail of her. I see each individual piece of fur shining with its own beauty, her 18 years a lie next to her determination to get her own way. Eventually, she settles, an old familiar companion, and I get my sun back.

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My girl cat and me.

I doze with no worries. And I wake to the sun no longer in my face. In fact, it’s getting ready to set – 3:45 pm. The quality of light has changed, the blues deepening and some pinks starting to be hinted at in the sky. Winter Solstice is approaching fast.

Although the nap took care of some of my foggy fatigued feelings, it didn’t help my head. I have a headache. I have had a headache since I woke. No, maybe it was since yesterday. I’m not sure. I feel like I’ve been guzzling water for days, trying to get the headache to ease. It’s irritating, but not bad enough to deal with the digestive slowdown or additional dehydration caused by using ibuprofen. Can’t fix it, so I ignore it.

I still feel no need to push, no need to move on to the next thing, no need to think. So, I don’t. For me, the key to knowing a rest day is needed isn’t only the fatigue, it is the lack of motivation. I lack the desire to do anything, to do one single thing. I don’t care about my tasks. I don’t care about my plans. All I want, need, desire, is to rest. And so I do.

Why is today a rest day? I really don’t know. I just know the need arises, regularly. Yesterday was a great day. I went to my writing group, fueled by green tea. During the lunch afterwards, I keep myself caffeinated with a soda and have a really productive talk with three other writers over a BLT. Home to rest and HBOT, then out in the evening to check out a new game night at the local library. A busy day, but not one that necessary – any more – requires recovery time. But, when I woke in this morning and felt how deeply tired I was, I knew my plans needed to change.

Luckily, I’m much less attached to any particular path of action these days, whether something happens now, later, or not at all. If not today, maybe this week. If not this week, then maybe this month. If not this month… well, maybe it doesn’t need my attention at all, or maybe it can wait until next year when I might have more energy.

My tasks, lined up like soldiers, will just have to wait.

Two mTBIs and post concussion syndrome has taught me to listen to my body. Or, rather, that I ignore the needs of my body and my mind at my own peril. Much better to rest now when I have time than to push through and crash harder and very inconveniently later. It’s better to let my body and mind lead me where they need me to go. Or, as in this case, lead me to not go or do anything. Lead me to a day on the couch, sitting here napping with my cats, waiting for the energy to pick my life up again. Yes, I choose self-care and rest. It saves me quite a bit of time and aggravation in the end.

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Lunch Time

“Okay, let’s talk about your lunches.” Mary says as she leans against the counter with pen and notebook in hand.

Immediately, I tense. I don’t like this idea. Deep in my gut, an irrational, reactive urge starts to swell. With those few words, I feel overwhelmed, questioned, challenged. I want to yell, get crazy, push back hard. My fear tightens the muscles of my back – fear of failure, fear of proving yet again how incompetent I am.

I take a breath. Not this time. I am aware of my feelings, but they don’t control me right now. I don’t have to be reactive. This is a reasonable topic for discussion, and Mary has chosen a good time to talk. It’s not evening. I’m not exhausted. I am me, instead of my post concussion syndrome.

“Sure” I say guardedly. It helps that she has been prompting me about this change for weeks. Weeks. Maybe months? I’m not sure.

“So instead of me choosing your lunch for you every day, you’re going to make a list of lunch options for each week.”

I make grumbly sounds, but I stop what I am doing and think about what I want for lunch. I can’t think and do something at the same time, not since my first mTBI.

After some silence and some staring, she prompts me. She is handling me so well. “What do you normally eat for lunch?”

“A tuna melt” I say. After some thought, “That ramen and a hard boiled egg”. She jots these choices down for me as I speak. More thinking. “I have turkey left over from Thanksgiving, enough for two servings. I could have a turkey sandwich, and I could have turkey dinner, once each.”

This isn’t as scary as I thought it would be. I’ve been having leftovers and certain lunches for months, years. It’s nothing new. What’s new is me choosing, me taking responsibility for figuring it out.

“Okay, you need one more” she says.

One more. Hmmm… “Rice! Something with rice!” I say with relish. Ever since a three-week intestinal bug in October, white rice has become my favorite favorite food. It was one of only a few things I could eat without problems for quite a while, along with bananas and applesauce. Now all three are in my top five favorite foods in existence.

I frown. “But I need a protein.” I think for a bit. Then I turn around and open the fridge, perusing its contents. Darn, we don’t have any easy already-prepared-meats available.

“You could add some beans. They’re a good protein.” Mary suggests.

“Ugh. No. I’m not having beans and rice.” I think back to an orange juice flavored beans and rice combo I made for dinner last year. It was tasty, so I made it many, many more times. Too many times. No beans and rice for me this week. Anyway, adding beans would kill that deliciously pure jasmine rice taste I am looking forward to. “I could have a hot dog. I have some in the freezer.”

I already know what Mary’s going to say, and she doesn’t surprise me. “No. Those aren’t good for you.” If she wasn’t watching me, I’d probably just have a hotdog regardless of her judgement. But, since she’s involved right now, I need an official proper protein for my last lunch.

Silence descends on the kitchen as I strive to figure out an easy protein. I’m already having hard boiled eggs, so those are out. I stare off into space as I think, try to solve this problem. Mary gives me time to think, space to struggle to solve this problem. Finally, something comes to me. “I always have more tuna than I need when I make my tuna melt. How about instead of cramming it all on the bread, I set some aside and have it with the rice. That’s a good protein.”

We agree, and the list is complete. Mary kindly puts little check boxes next to each meal. I’m to check each one off as I eat it, so I only eat each option once this week. A good idea, as I might forget what I’ve eaten, otherwise. Plus, somehow, interacting with the paper grounds me, makes the choices more real and decided, more concrete.

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This week’s meals – our dinners, my lunches, Mary’s lunches.

Another small step towards my independence. It hasn’t come easily, for either of us. Mary has been prompting me and preparing me for this moment for months, maybe years? Each time she has suggested it, I have resisted. Vigorously. Not because I feel like Mary should do that work for me. Rather, I have resisted because it feels so overwhelming, so upsetting, so heavy and unmanageable to do this task of thinking and deciding, of problem solving. There has been yelling, hurt feeling, wounded looks, woe-my-world-is-ending thoughts and plenty of crying. But this time, success. She has eased me into it. And this time, she caught me when I wasn’t already exhausted – an important key to success with brain injured people.

As this week has progressed, she’s been checking in with me regularly. “What did you have for lunch today?” she asks as she walks over and looks at my list, making sure I’ve checked off the item I ate. It’s helpful, and it reminds me to use my list regularly.

I know how this thing will play out. I have some experience with Mary’s management style… and this is one area where Mary, truly, does manage me. She’ll help me with my lunch list a few more times. She’ll keep checking on me, that I’m eating and that I’m using the list. Once she’s decided I can do it myself, it will become my responsibility. Permanently. Probably, she’ll put it on my weekly to-do calendar.

She’ll check on me periodically, but I’ll be left to my own devices. There will be frustration, and flailing, and difficulty, but eventually I will succeed. If I’m overwhelmed and foggy from a particularly rough week, she might help me a time or two. But then I’ll be expected to take it over for myself, again. Eventually, it will become routine and normal and easy for me. And, because of the mTBIs, soon enough I won’t really remember anything different. For all that it is a painful process, I like the outcome. Me, re-becoming a competent, independent adult.

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Flying and Me

Reality is the latch in front of me. Who knew a latch could be so fascinating? I look at its shape, its simplicity, and feel content. It can swing left, or right, or stay exactly in the middle. It can rest at any of a hundred points along its 180 degree range of motion. So many possibilities.

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My soothing latch

My brain is utterly content watching this unmoving latch. That’s how I know I am already tired. Overstimulated. Looking at the latch is restful, a simple place for my mind to dwell and recover. This is my first plane ride in more than five years, and my first flight after two mTBIs. The noise, the people, the unfamiliarity are already exhausting me, and I have so far yet to go.

My world has changed so much since my first concussion. Instead of a tolerably unpleasant, casually tiring trip across the country, I am now in the middle of an epic journey. I am the star in a great and brave adventure where I travel – on my own – across the country. Where I have spent weeks planning every accommodation I might need, and where I will spend weeks recovering from said epic adventure.

Flying across the U.S. is no small task. Going from a small airport and arriving at another small airport across the country means a minimum of two connections and three flights. I have a good schedule, but 13 hours on airplanes or in airports is still, well, 12 1/2 hours more energy than I can casually spare.

One thing keeps me safe – I have planned for this. Since I am prepared, it is all going to be okay. I follow my plan – it is a good plan, but sometimes rather embarrassing. For example, giant ear muffs (rated for rifle firing) over a set of earplugs brings the noise of the aircraft down to a dull hum.

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The need for excellent ear protection cannot be overstated.

I look weird, but it is effective. My wide-brimmed hat I can finally remove because the overhead lights have been turned off. Ibuprofen and caffeine rush through my system, helping me deal with the discomfort and over-stimulation of my journey. My rolling “personal item” sized bag fits easily beneath my seat, saving me from the potential headache I might get from carrying it. I am prepared.

My first flight passes with me mostly looking at that lucky latch. A success.

Once we land, I use the wheelchair service for the first time. Awkward… so awkward. I don’t intend to make little old ladies wait while I am wheeled only a few gates away, but I do. I hadn’t anticipated this issue, have no mental resources to spare, so I say nothing. I avoid eye contact, climb into the wheelchair, and we are off. As I’m wheeled through the terminal, I close my eyes to decrease the visual stimulation of people, movement, businesses. I keep my ear plugs in to decrease noise. I feel awkward, but I get what I need – guidance to my next gate without having to think or make decisions.

Once I am at my next gate, I whip out my next accommodation – food. Security confiscated some very aggressive applesauce, but I have bbq chicken and rice to eat.  And I do eat. I’m not hungry, but I need to make sure I don’t ever get to the point of hunger during this trip. I am alone, and when my glucose level drops my ability to cope with stress, problem solve, and process the world around me is significantly impaired. So, I eat, even though I am not hungry.

Another flight, another airport. I’m surprised that I am as functional as I am. I’m foggy and have a headache, but I’m still able to think. My energy isn’t high, but it hasn’t bottomed out.

I decide to do something different. As I exit the plane, I walk past the line of wheelchairs. I ignore them. Actually, more, I pretend they have nothing to do with me. I stride slowly up the gangway and don’t look back. I can find my own way.

As I enter the airport proper, I am immediately overwhelmed by people, noise, visual stimulation. As I walk along, there are businesses everywhere, and people, and so much sunlight. In another life, I would have found it quite pretty and interesting. In this reality, it is simply another thing to bear.

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Denver Terminal

I stop in the walkway and look at the signs. This way is gates 50+, that way are gates 50-. Which way to do I need to go? I look both ways, seeing no clues. I could text Mary and ask her my gate number, but I want to do this myself. I know I can do this myself.

First, I need to find one of the departures boards. They always have the gate information. Simple, right? But as I look around, I don’t see any. Where are they? I head toward the business area, figuring I’ll quickly find a departure board there. I walk past store after store and see nothing that fits the bill. Where is it?

Oh, a terminal map. Maybe that will tell me where a departures board is. Maps use to be one of my best friends. Post mTBI, they are an exercise in confusion – too much information, too difficult to sort through. I try; I give it several goes. I glance at the map to see if anything jumps out. Nothing. Then, I read carefully through the legend and figure out the symbols. No help there. Next, I slowly and painfully read through the list of businesses. Nope. Finally, I try to “scan” – to open my mind to any type of information I didn’t already examine closely. Nada. Sigh.

Where the hell are the departure boards? I walk on. Looking. Looking. Another moving sidewalk, and more looking. I am sure I am not the only one who wants to find out their gate. Surely they are around here somewhere.

A stroke of luck – an information desk, staffed. In a previous life, I would have only asked for help in the direst of circumstances. Now, I consider asking for help one of my better coping mechanisms, one of the most reliable ways to find out what I need to know.

“Can I help you?” He says.

“Excuse me” I say. My ‘excuse me’ was planned before he spotted me and spoke, so it comes out of my mouth after his words even though no longer appropriate. A small social bump, but ignorable.

I continue, “I’m looking for the screens, the information.” Frustration. What would other people call the thing I’m looking for?

“The information structure with flights, with the gates.” I say with vague rectangular-shaped gestures. My mind still flails, trying to find the right words, but his expression changes and he knows what I mean.

Before he speaks, though, I spot it. “There it is!” I exclaim, pointing, and walk away. Damn, another social gaffe. To smooth that out, I holler “thank you” over my shoulder and wave vaguely. Some of the smoothness of my interactions are gone, true, but they are adequate. A real success in my world now, adequacy.

The rest of the day goes smoothly. In fact, my entire trip goes smoothly. No catastrophes, and nothing I can’t handle with my accommodations and preparation. It’s a day with a lot of firsts – first plane travel after mTBI, first week long trip by myself, first Airbnb solo, first Uber, first wheelchair assist, first having someone else haul my bag off the baggage carousel for me.

But the most important thing is this – I succeed. By arriving at my destination, I succeed. By staying functional enough to navigate the experience alone, I succeed. By being cautious and follow my accommodation strategies, I succeed. Thank you, Universe, for helping me succeed.

Blessed be.

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TBI Rockstars – Advice for Caregivers (VIDEO)

Well, my friends, I am traveling right now. When I set out on the trip to visit my family, I had the naive hope that I would still be able to write a blog post for today. Wrong! There simply isn’t enough of me to successfully travel alone, have a fulfilling visit and write a new blog post all at the same time. So, new plan.

Today, I am sharing a TBI Rockstar video. Yay! This time, Brie and I offer advice to caregivers. Navigating a brain injury is hard – confusing, painful, frustrating. Imagine trying to understand what a partner, a loved one, a friend is going through without ever having experienced brain injury symptoms yourself. Given that many of us don’t look any different on the outside after an mTBI or other brain injury, it can be hard for a caregiver to really understand how fundamentally our skills and abilities have changed.

Part of that is we, ourselves, don’t understand how our abilities have changed. It took me several years post mTBI to start to perceive how my abilities had diminished. Since I didn’t really know what was wrong and why things weren’t working how they use to, it was impossible for me to articulate to Mary what had changed and what I needed. Add that to my desperate need for nothing to be wrong, and it makes sense why Mary and I had a lot of bumps along the way.

I hope this video helps makes your path a bit smoother than mine was. Give it a watch – and share this video with your caregiver. It is a good starting place to having a conversation with your people about what has changed. Blessed be.

direct link is “https://www.youtube.com/watch?v=ihzq7y51Eq0”

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Explaining Myself

I have to get this done.

“Come on Charlie, you can do this.” I say. I find talking to myself, out loud, helps me focus. It seems to catch my brain’s attention in a way that just thinking to myself doesn’t anymore.

“Just write it out. Get it done.”

But what do I want to say? What should I say? What needs to be shared, and what needs to be held back?

About a month ago, I bought a plane ticket to visit my mom (discussed here Tripping). It will be the first time we see each other in almost four years. More importantly, it will be the first time she will see me since my second mTBI – the one that pushed me off the cliff of almost-functioning into a deep canyon of barely functional that I’ve spent years trying to climb out of.

So, some preparation is necessary. A letter, to set realistic expectations about what I can or can’t do. Something to discuss my limitations and giving her a chance to get on board with what I’ll need when I visit. Even though we’ve talked about my fatigue, my over-stimulation, and the continuing limitations of my life on the phone… that’s different than dealing with it in person.

Gone are the days where I can just go with the flow, avoiding conflict, pleasing other people. Now, I have to be in control. Now, I have to plan and strategize and decide every move I make. That change in behavior, along with my changes in ability, are going to seem very abrupt for people who have known me for decades. So, I want to give them a chance to adjust to a different me, and ask them to help me make my trip successful.

That’s an important point. Asking for help. It is difficult to be so vulnerable, but I do need the help of the people I’m visiting – in this case my family. Asking for help in my letter gives them an opportunity to be my teammates, for us to work together to make the visit a success. I’ve never done that before, and it feels awkward and scary. But necessary. If I have learned anything from this injury, it is that I cannot do it alone.

I manage to write one draft. A little bit of time, then I write a second draft that is completely different. Another few days, help from my friends, and the third draft seems to do the trick. It hits all my points, crosses all my Ts, does what I need it to do.

My counselor gave me the key to my success – keep it simple. Focus on a few main points, the most important things they need to know, and let the rest fall by the wayside. People can only take in so much information at a time.

Being the scientist that I am, it makes the most sense to me to present the information using a cause and effect model. Here is my symptom/limitation (immutable fact), and these are the best ways for us to manage it (strategy).

For example, my #1 is:

I need a lot of down time to rest my brain.

My corresponding solution?

Throughout the day, I’ll need to take breaks and rest either in a darkened room, or by returning to my rental apartment. This rest allows my brain to reset, and helps me be as functional as possible when we spend time together.

Brilliant, right? First the thing that is always true – I need to rest my brain – and then what that’s going to mean for our visit.

Here’s my other ones:

Second, too much stimulation makes me confused and foggy.

I’ll need your help decreasing the stimulation in my environment. While I’m visiting, I’ll need us to keep the television and radio off. Multiple people talking at once also makes it hard for me to follow the conversation. Loud noises tire my brain, so I need to avoid them. Electronics like the computer or cell phones can quickly overstimulate my brain, so I need to limit my exposure.

Third, public places are often overwhelming

I will need to limit my time in public places. I can do a few things out of the house when I visit, but I’ll need to plan those excursions carefully. Places like stores, restaurants, or large crowds can exhaust me quickly. After being in such a loud or busy environment, I will need to rest alone in my apartment. Daytime activities are easier than nighttime activities.

Fourth, I do best with routine and a schedule

Making decisions in the moment is hard for me, so it works best when I plan ahead. Here is a tentative plan for my visit: I will come over to your house in the late morning and visit for a few hours. Once I start to tire, I’ll return to my rental to rest. Then, I will come over again in the late afternoon or early evening for several more hours, then return home. We can adapt these plans to fit your regular schedule, and for any special event or activity. I want to make sure you both still do the daily activities you love, like swimming.

Those are my four main points. My letter starts with a request for help and an expression of excitement for the visit, and ends with a thank you for being willing to help and I’m excited to visit. Below is a copy of the whole thing – feel free to use it for your own personal situation. If you share it with a group or post it online, please be sure to give me and my blog credit.

My next blog post will actually happen while I’m out in Oregon. Wish me luck, my friends!

ScanofLtrtoMomOct2018_withCopyright

Not the actual letter I sent Mom, but the content is the same. Letters to my parents always are in 14 point font or larger, and generously spaced to make them easier to read.

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