Revolving Doors

[Image: a gorgeous wood and brass revolving door at the Savoy hotel. Source]

Tuesday I sat in my neurologist's waiting room. It was full to overflowing as she was running overtime. It's not uncommon. All it takes is one late patient or unexpected emergency for the program to blow out. I can count on less than one hand the number of times in the past nearly eight years I've been seeing her, where she's hurried me out her door. But the cumulative effect of this tendency to take her time, on top of those other factors, also stretches that list out further and further.

Fellow patients came and went. Heading off for a belated lunch or restorative coffee. I commiserated with the petite elderly woman across from me about the delay. We commiserated again when she came back from her impromptu lunch to find me still sitting there. Surprisingly most people were happy to go with the flow. Momentary frustration replaced by resignation. Getting in on time to see any doctor is rare. There's an urban legend that some guy living in Preston once managed to have an on time appointment at some medical clinic somewhere. No one really believes the myth, but we all have a little kernel in hope that maybe, just maybe, it was true, and in turn that it could also happen to us.

When my name is called she talks about how much she loves my new hair and clothes. We've always bonded over a love of fashion. I wheel down to her room, my driving skills hampered by exhaustion and building hypotension.

"How are you going?"

How to sum up the shitfight that has been my life since I last saw her? It's never easy. Physically and cognitively things have gone down hill, though it is the later that concerns me. Where to begin? I start listing the physical issues. Even I know how disorganised my communications are, fatigue having amplified my cognitive fog. Part of it is also my worry. The worry that I've voiced on occasion before hastily stuffing it back down, binding it's limbs, shoving it into a box, welding the box shut, before tying bricks to the outside and tossing it over the side of a ship somewhere over the Mariana Trench (I am nothing if not thorough in my denial).

While my physical issues are problematic, apart from the odd exacerbation, I can deal with them. I've come to accept that they are simply part of life and while they can be difficult to deal with at times, after ten years I'm made my peace with them (I fully reserve the right to bitch and moan about them in the future. I'm not fool enough to believe that acceptance is reached, and all is fine and dandy in the world from that point on. Life doesn't work that way.) But my cognitive issues aren't improving. Things are better than they were the first half of the year but they are still no where near where they should be and the term brainfog underplays what I've been experiencing.

When I start describing the heartache of finding writing and reading difficult she instantly recognises the importance of the issue. Over the years of our relationship we've frequently discussed my writing. She's been excited when I've presented at a festival or had a piece published and always added that I am a blogger or writer to my letters. She understands that not only is this important to me, it is indicative of a significant problem. My language skills have always been my strength. And their deterioration a sign she can't ignore.

Back in June I wrote of my worry that I was forgetting important things. Turns out I was. Emails came in querying where I was and why I hadn't completed certain tasks. The embarrassment combined with a realisation that my fears were founded. I was not just forgetting the little things I was forgetting the big thing. The things that were important to me. I have since sent off many a mea culpa email, apologising, and where appropriate, trying to explain what had been happening. But it is the ones that related to my writing that have hit me hardest. That I could forget things so dear to my heart is worrying. The fear that I still have a collection of important events or issues that have escaped my mind is ever present. It would seem I was going through the motions but nothing was sticking. Even when I have interacted, somewhere between event and storage, the information simply evaporated.

Memory, language, attention, speed of processing,...I list off my concerns. My understanding that one may underpin another, or be working together to create the impairment.

"It may be useful to have a Neurorpsychological assessment."

Ugh.

A kick to the guts.

Not that I haven't thought about having an assessment. I have. On multiple occasions. Especially following my SPECT results, and more so the last six months. But telling a former a Neurospychologist that they may need a neuropsychological assessment is confronting. Mr Grumpy knew about my hesitation. I've discussed my fears with him on more than one occasion. He pipes up to fill in the blanks where my mind dissipates, as I face the realisation that it's not just me who thinks I need to be assessed. That the expert in the room agrees. I start to recite the problematic issues involved in assessing someone who was previously the assessor. The community is small. And I don't want to be assessed by someone I know. I know the process and the assessments used.

"I still know all the tests. I can still recite the memory stories and draw the RAVLT!"

Why that phrase stuck in my head I don't know. Maybe because a small part of me registered the mistake.

It wasn't until I was sitting on my loo 24 hours later, that I realised that you can't draw a RAVLT, a list of words. You can, however, draw a Rey Figure, which is what I had in my head, and I can still draw.

Word substitution. Crap. Just a small example, but when these tests have been your bread and butter and you've conducted them more times than you can count it is confronting. Somewhere between mind and mouth or mind and keyboard, things get lost. Going back the other way is not much easier these days. Attention, divided attention, memory it's all screwy. And the concentration and effort that is required to try and present a good front is frequently exhausting.

***

(The Walking Dead Season 5 spoiler alert two paragraphs ahead.)

There was research that came out around 2011 that suggested that doorways were essentially memory scrubbers. A kind of purging of unnecessary information as we move from place to place. It's thought to be responsible for that common feeling when you walk into a room and then stand there having already forgotten what you were supposed to be doing. I feel that every day. Though I often feel like I am stuck in a revolving doorway rather than simply passing from one room to another.

There's a pivotal scene in The Walking Dead where three characters get stuck in a revolving doorway. One fights his way out through the doorway condemning another, Noah, to be eaten alive by the zombie horde, while the third, Glen, is stuck watching in horror as this occurs on the other side of one of the glass partitions. Noah is my memories being eaten, while I'm Glen, stuck on the other side of the partition, impotent and condemned to watch my memories being ripped apart. (First guy gets his comeuppance later in the season, not sure what my real life equivalent would be. See, that's what cognitive issues give you, an unfinished metaphor, or parable, or....well my brain can sort of feel what it is but I can't quite get there.)

She mentioned a name. A Neuropsychologist she assured me was very competent. It wasn't a name I recognised, not that I can trust my memory at this point. And I acquiesced. In truth if I hadn't blurted out an impulsive "Okay!" right then and there I likely would have left the appointment with no referral sent off. I would come back in six months having progressed no further except for a few more blood tests for more rare disorders. I feel sick but resigned to the fact I will soon be siting across from someone asking me the same questions I asked the patients I saw back when I was working. I wonder if he'll find the trick to making me feel relaxed? I wonder if I'll be able to stop myself from judging him every step of the way? Poor guy. I feel sorry for him already.

I sat there while she dictated her letter. I must have looked deflated as she assured me that she's not giving up. That she knew other doctors did. That other patients are left in limbo with no support and trying to navigate their diagnostic journey alone. She assured me she had patients where it took ten or twenty years to diagnose, but she kept with it. She assured me that every time something new and weird comes up at a conference that she instantly thinks of me, and starts trying to work out if it will fit. She assured me that we know more about autonomic disorders now than five years ago. That this knowledge will only increase with time. She assured me.

***

We left the appointment and headed to see our son. It's one of the bonuses of the six hour round trip to the city. A neurology appointment can hardly be classed as fun. But after the fact when you're hanging out in a dodgy, smelly, laneway taking photos, it's easy to push aside what was discussed an hour or two earlier. You scull down a long black and feel it infuse your being and let the rain fall, softly dampening your clothes and hair.

And you realise that sometimes those doorways are much appreciated.

[Image: A woman with green hair (me) sits in her red electric wheelchair in a graffiti covered laneway. She is wearing a floral dress, green stockings and black high heels with a vibrant red scarf and is looking down.]

Michelle

I've been listening to a lot of Etta James so Next Door to the Blues popped into my head when I started thinking about door themed songs. I saw Vika Bull in At Last the Etta James Story
earlier this year. Gosh she was amazing. If you're in Australia and it comes to your area go along. I've been a huge Etta James fan for years and equally have followed Vika (and Linda) Bull since the early 90s and it did not disappoint.

Windows

[Image: A woman, me, sits before a mirror with her merle Great Dane, and constant companion, Freyja. She's wearing grey and blue pjs and the picture is muted and dark. Her pale and tired reflection looks back, The mirror, like most of the house has Great Dane slobber all over.]


I can hear the television from the other room. The rhythm of the speech declares it sport in some form, though the content of the comments is lost in a melange of muffled sound. The world continues on oblivious to my presence on this side of the white MDF door. That this cheap and poorly fitted paper thin block could cut me off, rubs. Not that I can remedy the situation.

I lie supine, bound with invisible straps. Words fail as mind and mouth refuse to communicate. What simple ideas and words coalesce in my brain, unable to reach their destination. I am reduced to the most basic of function.

I don’t know where I am now. I try and pull myself together but the exhaustion foils my attempts. There are points where the unrelenting nature of illness catches up. Knocks you down and cages.

I’m coming out the otherside but the pull of the cage is strong. I worry that I’ll lose my footing and slip back. My windows of semi-functioning are small. Some days so small that simply trying to work out how to access the series I want to watch while lying on the couch is beyond me. Some days I get there. The programs indexed but I can’t recall what it was I wanted to watch. I end up overwhelmed by choice, too much data for my mind to process. So I close it down and watch the midday trash TV on whatever channel happens to be on.

The last three months are vague. Someone snuck into my brain and ran their thumb pad over the ink before it dried. A large smeared mess left in its place. I can’t recall what I’ve forgotten but I know I’ve forgotten things. Important things and small things. That knowledge I have, but the specifics. What was it I was supposed to do? Who was I supposed to call or email? Did I make promises to do things. Most certainly. I do that all the time. But what was it I promised to do? And for who? My brain is a mess. My cognition slowed and frequently disorganised. Trying to carry through a thought to completion beyond me more days than not. I feel like I should apologize, but to who? About what? I’m not sure but the feeling is there, pressing hard as I lie in bed at night. Reminding me that I’m messing up. But how do you remedy a situation that you no longer recall?

I have ideas. But they are gone as soon as they start to become clear. I can see them for a split second. And then…nothing. Just a vague impression that lets me know I did indeed have a thought, a plan, a something. Just enough to tantalize and frustrate. I was sharp once. I know that. But my confidence has taken a battering of late. The chunks of time, of events, of conversations that are missing add to my anxiety. I am an unsure about things that would never bother me before. Simple things and big. Am I saying the right thing? Doing the right thing? I feel stalled by a brain that has gone on strike.

So I have avoided my lap top. My emails continue to pile. I still find it hard to read and hard to respond. I’ve lost track between one paragraph and the next. But a paragraph is better than it was. It’s getting better but it’s excruciatingly slow. Nails on a chalkboard seemingly drawn out for an eternity.

It’s getting better.
It’s getting better.
It’s getting better.
If I say it enough it’ll become truth.

I’m trying to be kind to myself. I’m trying to embrace the tiny windows. To live larger by living smaller. Simple, short and sharp. Focus on the joy part and embrace every second of it.

I sit with my chickens and play with my dog. I get dressed and I take silly photos. I’ve started back on Facebook, but I’m limiting my time. I bug my husband to go to the local lake and roll around through the park lands. I have the odd coffee out and just try and breathe.

I’ve started back with small exercises. I made pizza and sweet scrolls. I potted a plant. I rolled to the cow paddocks on an icy day and watched the pelicans and water foul swim on the dam. I stood at a council meeting and spoke my mind. A small glimpse of the old me. Exhausting and exhilarating. I wrote this blog post over weeks. A snippet here and a snippet there. But I wrote it.

Life is smaller, but the parts are more healing. I am resigned to patience. I will wait. My brain will come back. I will step back into my life.

I’m on extended sick leave.

For now. But not forever.

Michelle

[Image: A woman sits cuddling a large orange chicken on a cold and dull Winter's day. She's pretending to give the chicken a kiss. The chicken, Sharona, is plotting the woman's death.]

*Thanks to Stefani, from Kind of broken: Lifestyles of the Young, Sick and Fabulous, whose own efforts prompted me to try and get this post into something resembling coherence. We're both going to get there. Of that I am sure.



Not sure why this didn't come up on the post. But hey. Matters little in the big scheme of things. But I've been listening to a lot of The Jezebels in my down time. I love this song, but there's something about the film clip in particular that I really love and feels invigorating.

The Dumbening

I feel like the dumb is strong of late. My brain simply isn't up to scratch. I'm not sure if it's the exhaustion, the lack of blood flow to my brain, medication effects or any of the other multitude of potential causes. I'm trying to avoid the 'it-could-indicate-a-worsening-of-things' line of thought, so we'll skip that one. But whatever the cause I feel like I'm walking around with a head full of cotton balls rather than a squidgy ball of grey matter.

I can pump out a blog post. Though the first draft looks like Freyja has jumped all over the keyboard. I can put up a FB status. I can even sort-of-kinda put up a photo on Instagram. But make me respond to something, a question, someone else's blog post, FB status etc, and it's crickets.

To try and fine the words to respond to an email in even a slightly coherent manner is getting harder. I read and re-read a paragraph in a message and still am left going, "Huh?" I go to respond and I'm having to go back and re-read the message again for the 80th time to make sure I understood. Then it's the hard part of putting the words together to make a response that doesn't sound like it has been created by Google Translate.

I'm finding it tough to deal with. Blogging is simply purging what is already in my mind. But responding takes understanding and active thinking. If something requires analytic thinking and response I might as well just put on my hat and head for home. It is exhausting and more often than not beyond me.

I want to respond to comments or statuses but instead sit staring at the monitor unable to put together a response.

So I find myself hibernating more.

I try to read a book and am exhausted and have forgotten half the text by the time I get to the end of the page. I know by the end of this post I will have forgotten how it started.

I hate, what I now call, The Dumbening.

I went to a writers workshop a couple of weeks ago. The idea was to talk about translating life to memoir with a focus on illness and disability. We were also asked to prepare a piece to bring in, read aloud and then have the groups critique it. And then The Dumbening hit and it went a little like this:

“Would anyone like to share?”

I sat there looking at my page of 12 Times New Roman and chickened out.

“Would anyone like to give feedback?”

Yes. But. Ugh. Words. Thoughts. What? Maybe I'll just slump back down into my chair and let everyone's words wash over me.

All through the reading I had thoughts. I'm sure they made sense back then. But already they are gone. Should I open my mouth and speak? Will it come out right? What was I thinking? Oh god, I'm just going to sound stupid. I have no idea. Just hide. Fade into the background. What am I doing here?

Concentrate. Concentrate. There you almost had it. There was almost a thought.

And that is how it goes now.

The Dumbening has hit and I am floundering. 

It's hard to communicate and participate in life when I can't respond to simple questions. It's makes me feel less. And I am very aware of how dull I sound. Conversation is worse. But now even written communication is getting hard. I have started to avoid things, and I hate that. My confidence has taken a beating. As has my sense of self. And some days it makes me want to crawl into a corner and howl.

I wish I knew the answer. I wish I could turn it around. But so far it's just another "you'll have to learn to live with it" moment. 

If my brain was functioning better I'd come up with a great description of my mental angst. But for now I can only give you a pithy,

IT SUCKS

Michelle

"Down by the seashore,
the waves are bigger then normal.
I asked you if I could flicker out,
you say "don't think so".
I just want you too believe.
Even though I know its impossible for me."

Speak words hard: Conversations with Dysautonomia.

(source)

Talk. Talk. Talk. My working life revolved around talking. I talked with patients. I talked with patients' families. I talked with other staff. I talked in team meetings. On the phone to GPs. On the phone to various rehabilitation and care agencies. I presented Grand Rounds and gave regular inservices. I said my piece in working groups and at length of stay meetings. I spoke with lawyers and tribunal members. Over the years I won awards for my case study and conference presentations. Even back in my school days, I was always picked to read aloud in class and was HD all the way for oral reports. Frankly, if there was an event for talking at the Olympics, I'd have pretty much been going for Gold.

But now.

For someone who was so highly verbal before I became ill, I am pretty much mute.

Talking is exhausting. Physically and mentally.

And I avoid it like the plague.

Back in my working days I understood this, at least in the way it related to my patients. When patients came in who'd suffered a severe brain injury we would minimise visitors, sometimes down to one person each day, for only a couple of minutes at a time. Everything would be done in short, sharp bursts. It was recognised that excessive stimulation, even from well intentioned loved ones, was too much. Requiring a patient to respond to simple questions such as "do you want a drink?", or "are you in pain?" could be too much and set them back for days.

Sometimes, even months after an injury, I would help patients and their families, structure interactions to minimise how much they'd be required to talk. Even my sessions would be restricted to 5 or 10 minutes depending on the patient's limits. And you could see as a session went on, the patient would begin to fade (and not just thanks to my scintillating conversational skills). Their shoulders would start to slump. Their eyes would get heavy, they'd begin to glaze over. Even their facial muscles would start to droop.

I often wonder if that is how I now look?

The level of exhaustion from simply conversing can be overwhelming. It can drain you to the very core. To the point where you don't even have the energy or wherewithal to say, "STOP".

I realise now, even the best, and most well intentioned clinicians, cannot fully understand this and other illness related issues, unless they too have experienced them. Fatigue, is just a word. A descriptor used in rehabilitation and medical settings. Intellectually you can understand it. You can write it down in a file or in a report and other clinicians understand what you are talking about. You can identify triggers and design a protocol to help a patient manage. You can even conduct an education session for ward staff on the topic. But you can never fully understand what it feels like to live with it, day-in and day-out. That's not a criticism. It's just a simple fact. And something that I now appreciate having been on both sides of the desk.

The physical exhaustion associated with speaking is ironically hard to articulate, and often even harder for others to understand. That what they still take for granted, is just so difficult for us now.

Long conversations. Conversations with more than one person. Conversations in loud or busy places. Conversations standing up. Conversations whilst I am trying to do something else. Or, the dreaded phone call. All can leave me exhausted.

Physically, I now find my facial muscles tire easily. They become sore and uncoordinated, even on a good day. I end up slurring my words, or having to stop and physically force my muscles to coordinate. I have trouble maintaining my gaze and have to repeatedly look away, which I know must come across as rude, or at least a tad weird. And afterwards, my face hurts from the strain of making the movements.

And mentally. Good or bad day, the only difference is how long I can last. Actively listening and communicating is difficult at the best of times. My attention span is short and the amount of time I can concentrate and the amount of information I can process, is substantially reduced, thanks to that pesky cerebral perfusion issue. Trying to make sense of what a person is actually saying or asking, and then forming a coherent answer in response, is up there with String Theory some days. I have difficulties finding the words I want, or I say wrong words. Or if I am truly exhausted it can be complete nonsense or a seemingly complete hodgepodge of words, that is known as word salad. Trying to simultaneously integrate body language and facial expression, and it is almost as if the whole that is normal communication, is broken down into its disparate parts and I am continually trying to sew it all back together, only to have the initial thread start to come loose again.

Believe you me. You haven't felt like an absolute top parent until you've yelled repeatedly at your son for bringing you a spoon, when you keep asking him to bring you a fork, only to suddenly realise you've been saying spoon all along.

Then there is the fun of trying to tune out competing information in the form of other people or background noise, eg a TV, yelling kids, or other people talking, which can be not only challenging, but once again exhausting.

And if you add in fatigue, medication effects, anxiety (because you get stressed knowing that you will have to talk and may stuff it up), if you are more ill than normal, or dealing with the flu etc talking becomes yet another Herculean task in the day.

And the phone. Don't get me started on the phone. I am not sure what it is, but it is one of the hardest forms of communication for me. Maybe it's the lack of social cues, the lack of anchoring and context (ie it's just words in isolation), the fact that it strips bare the one area where I am most self-conscious. I'm not sure. But I am sure I hate it and avoid it at all costs.

And my inability to communicate.

My inability to do the simplest of tasks.

A task which was once my forte.

Frustrates me no end.

And,

I feel embarrassed.

Give me writing any day. No one sees my first drafts, my uncoordinated sausage fingers, or the initial lack of joining words and punctuation. I can revise and edit to my hearts content. Or until I get too exhausted, have minimised my grammatical and spelling abominations to a manageable level and am pretty much meh about it all. But talk? I'd rather have a rectal exam by that meth-addled lemur on a unicycle.

Speak words hard. Mowf truffles bad.

Cheers
Michelle :)

I couldn't go past a little Bee Jees, for today's musical interlude.

I Don't Know About This, But I'd Like To: Day III NHBPM

(source)

Well after staring hopelessly at the potential topics for today Mr Grumpy piped up with his usually witty suggestion. I knew I shouldn't have lamented my braindeadedness (Yes that's a word. Okay so it's a very new word. That I only just made up about 10 seconds ago because of said braindededness, but a word all the same, or at least for the purpose of the post).  Note: Mr Grumpy just pointed out I should at least be consistent with the spelling of my new word. But I say bite me fat boy. I'm living on the word-creation edge. (Okay I may be a bit tired and stroppy, and on the verge of insanity at this point. A combination of 3 Posts in 3 days and an uncooperative body (leg coordination is over-rated, right?) is a recipe for much in the way of pouting and exhaustion).

Mr Grumpy: "Well, you don't have to write a 1,000 word post every time"

Me: "But that's the way I roll, baby"

So his choice,

“I don’t know about this, but I’d like to.”

Why? Because I don't know how to write a short but still interesting and read-worthy blog post, but I (or so he tells me) would like to learn how.

Pithy really isn't my style. I don't really see the world in black and white. And tend to be one of those annoying people who gets stuck on tangents hence the prominent use of the phrase "but I digress" throughout this blog.

I blame the brain fog. I know I had a brain that was capable of short succinct writing at one point. I've tried to read my thesis and old reports and the patient information sheets I wrote up for work and they were smooth, short and to the point. But now? Now I have a bad case of the verbal diarrhoea.

Maybe if I had time, like a week or six, I could cut back on what I write. Edit it within an inch of it's life until I have the perfectly formed 600 words of witty, educational and entertaining prose. But the pea-souper that currently resides in the space formally occupied by my brain, is not that accommodating.

I am distracted by bright shiny objects on a regular basis. My thinking is more of the tortoise, than the hare variety. My memory more akin to Guy Pearce's in Memento. That damn pesky need for blood to flow to the blob of grey matter slopping around in my skull, causes all sorts of problems. And don't get me started on those unpredictable adrenaline surges that leave you feeling like you must move or you'll go insane from the internal twitchiness, even though you are beyond exhausted, and fracture your thought processes beyond repair.

What's a girl to do. Personally, I'm thinking eat way too much chocolate and tap away at the keyboard until my fingers are naught but bloody stumps. Surely somewhere between the first 500 words and the last 500, some form of coherent thought will emerge. Plus, those of us with the old hypoxic brain seem to develop an amazing skill: the ability to read each others words and find the sum of all the disparate parts, and understand exactly what each of us are saying.

Okay I'm going to stop now before Mr Grumpy looks over and makes some more sarcastic comments like,

"You're still typing?"

Yes dear I'm still typing, you are soooo observant!

Okay so after that great mix of randomness I will now head off and stick my feet up a wall and wait for my limited blood supply to glug back down to my brain. But at least I managed three days of blog posts in a row. I'll put that one in the win column for today.

Have I learnt to write a shorter post? Probably not. Maybe I can start a new meditation mantra. Good bye "So Hum". Hello "Short Post".

Damn, now all I can think of is Short Round, from Indiana Jones and The Temple of Doom. There really is no hope.

(photo)

Cheers
Michelle :)

PS Now Mr Grumpy says "Just what your readers want. A for-the-sake-of-it post with no entertainment value whatsoever". Bwahahahahahaha he's such a funny man.

PPS As I go to put the laptop aside to eat dinner, "Have you pressed save yet? You don't want to lose that literary masterpiece. It's definitely Pulitzer Prize worthy". The man is on fire tonight.

Earlier Instalments of NHBPM
Day I: Why do I write about my health.
Day II: Find a quote and use it as inspiration.