Butch and Risotto

Class is done, and my first comic strip is done! I am glad to have finally made a real start, four plus years since my original idea. Having a structured class helped turn my ideas into reality, with noted help from my teacher Rachel Lindsay (rachellivesherenow.com).

Meet Butch and Risotto – a potato and tomato duo dealing with life after brain injury, together. This comic strip is another way for me to share with the greater world what it is like to struggle and recover from a brain injury. My intent is to focus on incidents in daily life that are frustrating, confusing, and even funny sometimes. This is just life, after all, with some extra challenges and lessons.

One thing I learned in my graphic novel class is creating finished comics is a lot of work. A lot! Hours and hours! I assume it gets faster and easier with time, but it is still a time-intensive activity. So. That means you won’t be seeing one of these every week… or every month. I’m hoping to complete one every two or three months. It’s a nice break from the computer screen. We’ll see how it goes, but no promises. Part of it will depend on the world’s response – so please share it, if you like it. Get the word out that it exists.

Without further ado, here is my first completed Butch and Risotto comic. Enjoy!

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Fixing the Flooding

I relax as I saunter across the driveway. It’s the first time in weeks – months? – that I don’t have watch for ice at every step. Spring isn’t quite here, but she is closer… moving ever closer. The hottest day of the year (so far) was earlier this week – more than 50 degrees F – and most of the snow and a lot of the ice has melted.

As I turn the corner onto the main road, I can’t help but notice the drainage ditch filled to the rim with water. Huh. I thought that’d take care of itself. I walk farther along the road and take a good look at my yard. Damn.

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An unexpected situation at The Queendom

As usual during a snow melt, our yard has flooded. Unlike every other time over the last five years, the flooding is fierce. Our entire garden sits under six inches of water. At the corner, it must be at least two feet deep and it overtops the stone wall of our perennial bed. That’s never happened before. Even my beehives now sport their own moats, surrounded on every side by water.

It was like this yesterday, but I thought it would resolve itself. Or, at least, that the water would go down. It hasn’t. Not an inch. I sigh and continue on my way. As I walk, a solution springs forth in my mind unexpectedly, a series of actions I can take to solve the problem. I stop abruptly and review my thoughts. Yes, I can fix this problem.

That’s new. The solution jumping to the forefront of my mind. And this belief – hope? – within me that I have the resources to actually follow through, to fix something that is wrong…how invigorating. It feels new and good and satisfying.

Hoses, we have hoses. Why don’t I run a hose from the lowest wet point, across the driveway, and into the wetland next door? I could drain the yard. Siphon off excess water so what is left can absorb into the shallow soil more quickly. If I act this morning, maybe I can drain enough water that the garlic won’t be hurt by the hard freeze forecast for tomorrow night. I stride along, enjoying the sun and the plants all around me, but focused. Focused and driven.

As I approach home, I check the wetland part of the field next door. Almost completely empty, as I thought. Adding my yard’s water won’t hurt it. The field isn’t mine, it’s my neighbor’s, so I need to ask permission before I implement my plan.

I mentally pause, expecting a roadblock, a stop sign to form in my mind. Contacting someone else, that’s where 80% of my plans flounder, end. I just can’t bring myself to do it. Luckily, my neighbor is on social media. I don’t have to talk, only text. I go inside, text him, and soon have permission to continue.

Excellent. It’s morning. I’m feeling pretty good. I can do this. I know how to do this. In fact, I have the equipment to do this.

First, I grab the hoses. It quickly becomes clear that one is too short. The other is slow to relinquish it’s previous shape. After some internal cursing and some lasso motions in the air to get it unwound, I get it situated. Just barely, it spans from the edge of the drainage ditch over the hump of the driveway and into the wetlands next door. Great.

Now, to get the water flowing. I have a drill pump, a neat bit of gadgetry. I brought it all the way from Sacramento over a dozen years ago and held on to it through four different moves, knowing that at some point I’d need it. Now is it’s shining moment.

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Nifty idea, anyway.

High school chemistry taught me that water sticks to itself. Geology class taught me that water is always trying to find a way from high elevation to low elevation. Put those together and it means that if one end of a hose is higher than the other and a unbroken stream of water is running through it, the water will – of it’s own volition – flow continually, without additional prompting. That’s why a drill pump is so great. It gets the water flowing, then you can leave it alone.

That is, ideally. If the damn piece of equipment does it’s job. I struggle to get the flow started, using the drill pump first at one end of the hose, then the other. Dragging my drill and electric cord and drill pump around fruitlessly makes me feel the eyes upon me. No one is staring. Rather, I feel the eyes of all the nameless people watching me struggle, zipping by in cars no more than 10 feet away. I feel a niggling of self consciousness, embarrassment when my plan over and over again does not work. Another sign of healing, that I have the energy to be aware others might watch and judge. Before, I wouldn’t have had the bandwidth. After an hour, I give up on the drill pump. It’s a POS. Into the trash it goes.

Now what?

I guess I have to do it the old fashion way. Manually. I plunge my hands into the ice cold water in the drainage ditch and force the end of the hose as deep into the flood water as possible. Once the air bubbles stop, I lift it up three feet. Then down again. Bubbles. Lift. Over and over again. My hands quickly start aching. As I continue, I feel the cold settle into my bones and my hands become stiff claws, unwilling to move.

Once I judge enough water has entered the hose, I pry my hands off the hose and secure it deep underwater with a brick. I walk to the other end of the hose near the wetland and kneel down on the wet ground. I pick up the end of the hose, put it to my mouth, and suck for all I am worth. Again, and again.

Water fills my mouth, and I immediately put the hose down low to encourage the flow. I spit out the water and see what my handiwork had created. A trickle. Just a damn trickle of water.

Too much air in the line. I put the hose to my mouth and draw in again. And again. As bits of water come at me, I spit them out and continue on.

There. Success. A steady flow of water comes through the hose into the wetland. Proof that my theory is sound. How much? Probably a few gallons a minute. Water fills at least three quarters of the hose diameter, and it has enough force to push out an inch or two as it exits the hose.

Excellent. My plan works. I feel success fill me. Pride. It took me almost two hours, but that water is damn well flowing. Finally. I go inside, glowing.  There was no way in hell I would have had the energy for that last year. Plus the idea! Where did that come from? I begin to remember. I am handy. That’s right, I fix things. That is who I use to be. That is who I can be again.

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Stella thinks the new pond is a great idea… especially if we stock it with fish.

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Am I Still Impaired?

“You might want to consider no longer using the term impaired to refer to yourself” says my new friend. “I know several other people with brain injuries, and you come across as very functional.”

Immediately, a surge of absolute rejection fills me. My brain dismisses her statement and throws it in the trash without a moment’s hesitation. I lean forward to explain her obvious mistake, and pause. I clench my jaw tightly to keep my denial from coming out of my mouth and think for a moment. Why the strong reaction? Why the immediate rejection? I am rarely so absolutist, rarely so unwilling to entertain another point of view.

I take a deep breath, and consider. My brain classified her statement with a hundred other conversations I’ve had that contained similar words. You know the ones, with people telling me how great I look, that I look fine. Perhaps they are trying to be supportive, but the underlying implication is that I must be healed, that certainly I can’t be disabled because I can carry on a short, routine conversation with an acquaintance and I am appropriately dressed. What I hear is a complete denial of the very real problems I face every day.

But, as I take a moment to consider what is actually going on now, I realize that I don’t feel insulted or threatened. I don’t feel like I’m not being seen. She is simply offering her honest opinion. New friend, new perspective. I don’t want to stay in a mental rut of seeing myself as injured or less-than, if that is no longer true. So. I force my mind to consider her words without defensiveness.

I’m foggy today. I know that. Getting the wheels turning to consider this new information is like slogging through knee-high mud. I can almost feel my brain creaking as I force the information through. And wait. Any insight? Any response? Nope. A little bit longer, and I give up. I’m too tired today to really figure this out, to judge this feedback. I’ll have to consider it another time, another day, when my brain is working more easily.

Several moments have passed – perhaps 30 seconds – and my friend has given me time to think through her statement in my own slow way. I appreciate that. Does she realize I’m using a lot of caffeine right now to be functional? And that meeting with her for two hours is all I’m going to be able to do today? Probably not, but I don’t want to talk about that. Instead, I share my most recent frustration.

“What about this: I started taking a new class in the evening. The next day, I couldn’t do anything – I just didn’t have the energy. I couldn’t carry on a conversation, I couldn’t drive, I couldn’t think.” Am I coming across as justifying? I hope not.

“The thing was, the winter beekeeping meeting was happening the next day. I’d put it on my calendar months ago. It’s an all-day thing, with training and informational sessions – really useful stuff. I knew I would have to choose between morning or afternoon, but I expected to be able to go to part of it. But nope, I couldn’t. All because I took a few hour class the night before. So stupid. What about that? What do I call that?” My chest burns with the unfairness of it all.

The topic isn’t resolved, but our conversation moves on to other things. I think about the issue the next day, and the next. For over a month I consider whether it is time to rebuild my vision of myself. Perhaps I am no longer impaired enough to be considered impaired? That’s a thought.

Life is much better than it has been. I am much more functional. I am still not able to work, or do more than about two things a day… but life is good. This year is much better than last year. And last year was much better than the year before.

But the class and then missing the bee meeting… what do I call that? If that didn’t happen because I was impaired, why did it happen? Hmmm… perhaps limited might be a better word. Impaired means something is wrong. Limited means not being able to do everything I want.

Everyone is limited in some way. Of the three hard limits in life – time, energy, and money – everyone has one or more limiting factor. For most people, it’s money or time. For me, it’s energy. Does that really make me different from anyone else?

Other people have dwindling energy. As people age, their energy decreases and they are able to do fewer and fewer things. Does that mean something is wrong? No, not really. It is just part of aging. But what about me? I’m only in my 40s. The organizations who pay for my daily living expenses certainly consider me impaired because of my continuing mental and physical fatigue. I’m not able to work because of it. So am I impaired in that way? Yes.

What about my memory? Right after my first mTBI, it was crazy bad. To keep track of anything, I had to immediately write it down on a post-it note and place it somewhere I would see it every day. It was 10 months before I could remember what someone said long enough to consider their statement. I didn’t consistently know what year it was until 2018. But with the increase in energy from my thyroid supplement, my memory has improved. It is still improving.

Medically, I am now considered average (25th-74th percentile). Whoo hoo! A big fucking range, and I expect I am on the low end…but doctors say my memory is good enough. As far as they’re concerned, that part of me is healed. My experience is quite different. There is a huge gap between my 95th percentile pre-injury ability and my say ~ generously ~ 50th percentile current reality.

When do I own that it is me, now, who is average? It hurts my pride to own my less-than abilities now, to take them in and call them my own. Much easier for my ego, my pride, if I call them other, call those abilities impaired. But what I’m working with now, memory-wise, is what a big chunk of people have always worked with. So. When I talk about my memory, maybe it is time to leave the idea of being impaired behind. I have less ability than I once did, yes, but I still fall within the average range. Average is, incidentally, good enough.

It’s been over five years. I am what I am. Limited, stymied at times by my own lack of functioning, frustrated by my current cognitive limitations. But, perhaps, no longer impaired. At least not in every way.

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Only fluff left of the bunny who use to live under our kitchen porch. I hope the fox or bobcat who caught him had an excellent meal. Thankfully, I am much less impaired than this guy.

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Rest is an Action Word (VIDEO – TBI Rockstars)

TBI Rockstars strike again! This time we’re talking about rest being an action word. I touched on this in my Five Things I’ve Learned from PCS post, but it bears expanding upon.

Rest is an action word. Really. I make choices every day to support my healing. I need to make choices every day in order to continue to heal. That’s how it works. I am the master of my fate. I must choose what I do and – sometimes more importantly – what I do not do.

I didn’t learn to rest gracefully. Nope. Not at all. In fact, I fought my body and brain limitations every step of the way, insisting that nothing had changed and that I could still meet all of my commitments and responsibilities in the same way I did before my first concussion. But that wasn’t true. And, eventually, I had to admit it. Unfortunately, because of that denial, I am much worse off cognitively and energy-wise now versus if I’d acknowledged my limitations from the beginning and worked within what I could actually do. Plus, it has increased my healing timeline exponentially.

Don’t make the mistakes I did. Save yourself a lot of time and aggravation, and adapt to your new circumstances. They aren’t fair, they aren’t fun, but they are what is true right now. Denying it, fighting it isn’t going to make things different. My friends, I give you permission to rest and to create a life that matches what you need and what you can do now.

Check out the newest TBI Rockstar video below. Blessed be.

 

For those who don’t see the video, the direct link is here:

https://www.youtube.com/watch?v=xai_kRwFoe0&pbjreload=10

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Learning Comics

“Nope. That doesn’t look right.” I say out loud to myself. I grab the eraser and begin again. How does a table look from the side? What parts are actually visible? I concentrate and imagine a folding table. Okay. A line here, two lines parallel. And the top of the table looks much narrower than it actually is, when seen from the side.

I sketch, erase, and sketch again. Eventually, I get it. It looks right, or right-ish, certainly as right as I can get it now.

I put down my pencil, mentally tired. A new part of my brain is getting a workout, and I can feel it. I’m not a particularly visual-oriented person, so it’s a stretch to try to recreate reality on a piece of paper.

Or, not reality. A facsimile of reality, a caricature of reality. I’m not drawing reality. I’m drawing comics. It is definitely fun! And it is my relaxation, my calming activity before bed right now.

It was back in 2015 when I first thought about comics and me.  I realized how concise, how clear a visual might be in conveying my experience. Can a 1000- or 1200-word blog post be summed up in a few frames of comics? Sometimes. Sometimes not. But I know computer use is hard for many people after mTBI, so maybe I could reach a broader audience with something quicker and easier to digest. Wouldn’t it be great to make my words, my message more accessible to people?

Like many great ideas, I have been slow to implement. There just isn’t a lot of extra energy lying around these past handful of years. And, I have had this one problem. A big one. I can’t draw. Whoops!

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Of course, everyone can put pencil to paper. The finesse, though, isn’t anywhere near where I want it. A house, an airplane, and a bagel, for those curious.

 

The task of learning to draw felt overwhelming, impossible. And, in some ways it is. Years and years of practice are needed to draw well. But since my initial idea, I have seen the wide variety of drawing skills displayed in comics and realized – there is room for me. I don’t have to draw well, I just have to draw well enough to be understood.

In my slow crawl towards comic making, I did buy a book – a very helpful book – How to Draw in 30 Days back in 2016. This was a great choice for me. The writer provides step by step instructions on specific images so even if you don’t have any particular talent, if you follow his instructions you end up with stuff that looks pretty good.

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Case in point.

I didn’t finish the book – I’m not even close, still, in 2019. And 30 days? Hah. I knew I wasn’t going to do anything in 30 days. Speed is not an option in my life, particularly when learning is involved. But the parts I have completed taught me important stuff that has slowly, slowly sunk into my skull.

During a fit of winter inspiration, I decided taking a class about comics is my next logical step. So. I signed up for a graphic novel class with a local art organization and started it two Mondays ago.

There are some roadblocks to me being successful. It is at night (sad face). It is in a building that does not have walls that go all the way to the ceiling, so you can hear just about every word of the class next door (even bigger sad face). The HVAC system rattles and moans like a monster all evening (sad face). The class runs 2 ½ hours (worried face). I want this, though, and the class isn’t offered during the day. So I took a big hit of caffeine, rested during the day, and made it there.

I learned things. First, that I am likely the worst drawer in the class. I expected that, though. More importantly, I learned how fun it is to explore comics in a group setting, with a great teacher, and to be exposed to all sorts of new ideas and interests. That, for me, is 100% worth it.

It was during class that I felt – yes, felt – a new part of my brain engage. This whole other part of my mental capacity that I didn’t even know existed crawled out of a closet in the dark recesses of my mind, brushed off the cobwebs, and became completely engaged in learning. A strange sensation.

And now I’ve been drawing. Last week I drew three comics. This week, I hope to draw three more. I’m making progress. Any skill requires practice. The more I draw, the better I will become at drawing.

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I’m rather proud of last week’s drawing of my hyperbaric chamber.

One big downside. I expected to be tired after class. Of course, right? It was at night and is a new environment. What I didn’t expect was to be deeply core exhausted the next day. And only semi-functional the day after. And for about three more days after that I could tell my sparkle had been seriously dampened. That new part of me I used during my class was completely worn out. No stamina yet.

But I recovered. Luck is with me, and my class was canceled this past Monday, so I’ll have a full two week break before attempting it again. This time, I’m clearing my calendar the day after. But the reality is – most likely – it won’t be as bad. The first time doing something new is almost always difficult. The next time can be the worst, or a little easier. By the third time, almost always, it becomes more manageable. Over time and repetition, any situation becomes less draining.

That is the beauty of an adaptive brain. This class is a little outside my capacity, even with caffeine and rest and everything else. So, I will plan accordingly, put in place the accommodations I can, and keep at it. With time, it won’t be so hard for me to attend. It will become, if not easy, then doable. My ability to cope will improve. It is inevitable. It is inevitable.

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Five Things I’ve Learned From Post Concussion Syndrome (PCS)

Friday marked my five year mTBI anniversary. It’s been five years since I hit my head playing roller derby and got a concussion (details here). Symptoms from that concussion and another mTBI haven’t disappeared. Yet. Every day from January 25, 2014 until today I’ve had to deal with physical and mental fatigue, impaired memory, and a whole lot more.

I don’t want to talk about my symptoms or injuries today. I want to talk about what I’ve learned. Perhaps it will help you. Perhaps you have things you’d like to add. Feel free to post in the comments section below. For those newly injured, check out 10 Things I Wish My Doctor Had Told Me About Mild Traumatic Brain Injury (mTBI).

Now ~ drum roll please ~ my list!

Five Things I’ve Learned From Post Concussion Syndrome (PCS)

1. The Brain Rules

I’m not talking about my mind, about my thoughts, ideas or feelings. No, I’m talking about my physical brain, that organ that makes almost all other functions possible. It wasn’t until after my first concussion that I began to appreciate how important the brain is in every aspect of my life.

That great head for numbers I use to have? Well, I still have that affinity, but I no longer have the memory to hold 132 and 259 in my head long enough to add them together. Or how about my physical strength and fitness I was so proud of during roller derby? Pretty worthless when lifting a gallon of milk gives me a headache that lasts for days and plunges my thinking into a deep fog. Or how about my innate efficiency that allowed me to work faster than anyone else I knew? Turns out that skill was based on having lots of brain power available to use. Now there isn’t extra available, so speed and efficiency aren’t even a possibility.

The brain is important. My brain and how it is functioning each day is important to what I can or cannot accomplish. Hell, it determines what I can or can’t think. So. I must make healing, protecting and supporting my brain my #1 priority.

2. Rest Is An Action Word

You think it’s easy to rest? It isn’t. Slowing down when all you want to do is live a normal life? Extremely unpleasant. I promise you.

Resting is about making active choices to support my healing. It’s not just about laying on the couch and watching the birds, although that is an important part of it. Resting requires redefining the limits of my life to reflect my current reality.

I tell you, I fought changing my expectations of myself for years. I didn’t (and don’t) want to be impaired! Maybe if I denied it long enough, it would go away. Well – spoiler alert – it didn’t. And so finally, I had to deal with it. I shrunk my life until what was expected of me, what I expected of myself, fit with the energy I had available. That allowed me to finally stabilize my symptoms. And slowly – oh so slowly – it has allowed me to regain function and increase my energy.

Every day, I actively make choices of what I will or won’t do with my extremely limited energy. Most of the time, by focusing my energy on what is most important to me, I feel satisfied by my day. I may not have control how much energy I wake up with, but I can choose what I do with it.

3. Most Things Can Wait

Turns out, most things in the world can wait. There is actually very little that can’t wait a few hours, a few days, or maybe even a few months or years. Really. Since my energy is so limited, in order to have enough energy to make the most important things happen, other things have to wait. Or, perhaps, don’t need to be done at all.

It’s an enlightening shift of perspective. I put things I want to remember to do on my calendar. If I don’t do it one week, it moves to the next week’s calendar. After something has been on my “to do” list for weeks or months I realize – I’m just not going to do this. Either it’s not important enough, or it will take away energy from what is vital to me, or it is just too hard. So I drop it off the list, forget about it, and move on. So many things clamor for my attention, my energy. If something isn’t yelling loud enough or my heart and mind don’t want it enough, I let it go. Turns out, the world doesn’t end.

4. Adequate is Enough

Pre-injury, I had high standards. High standards for my behaviors, my work, for how I showed up in the world. Post-injury, that just isn’t possible. Life is a lot more haphazard, my functional level varies widely, and I don’t have enough energy to do… well… much of anything.

So, I stopped trying for the A+. Instead, I go for adequate, for the participation award. I don’t want to waste energy trying for something that is unreachable now, or that is only reachable at the sacrifice of all my energy for the day. It’s a better investment to set the bar low enough that I can always jump over.

Post mTBI, going out at night, driving somewhere, and showing up at a mixer, a housewarming party, a dinner is challenging in and of itself. I can’t know how well I’ll function once I get there. Will I be able to follow a conversation in a room full of voices? Can I think of a question to ask a friend to start a conversation? Will I be able to access my past fast enough to carry on a conversation about this place or that place I’ve lived? Maybe, maybe not. So I decide beforehand that being there, standing there with interesting people, listening, with a glass in my hand – that is success. Someday, I will probably be able to do better. Now, adequate is good enough.

5. Life Can Be Satisfying

Not to get too hallmark greeting card on you, but this is true. For a long time, I wondered – how can my life have meaning when it is so small, so limited? My big accomplishments today were making dinner and filling the bird feeders – how does that matter to anyone? Why do I keep going? I’ve talked to other people living with brain injury, who struggle with the same sense of limitation, and learned a few things.

Human beings are adaptable. We can adapt to any circumstance, any situation, any level of impairment. When all the purposes of our old lives are taken away, we have to find a new purpose, a new way to contribute. I had to figure out one thing I could do that mattered. For some, that might be volunteering a few hours a month with hospice or teaching kids a sport. For me, it is writing. Writing is one thing I can do that matters. I don’t know what my future holds, how much I will heal or not heal. What I do know is that as long as I can contribute to the world in some small way, I feel satisfied.

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A walk in the woods at the local park helps the winter go by faster. Thankfully, spring always follows winter.

Five years, and that’s what I’ve learned… the highlights at least. I still need to remind myself of these lessons, once in a while. Take this blog post, for example. Hitting my own deadlines is a point of pride for me. I planned to finish this post three days ago – a day early – but Mary is recovering from a concussion and needed my care. Two days ago – my proper deadline – I wrote some but had a root canal in the afternoon. Yesterday – my actual anniversary – I was exhausted and worked diligently, but my brain wasn’t able to bring things into focus. Several angry exchanges and my storming out of the house led Mary to remind me, gently, it really could wait another day. Now, with more time, caffeine, and a bit more energy, I’ve been able to finish. It hurts my pride to miss my deadline, but it turns out… hey, most things really can wait.

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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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