When hope is not enough

Action and reaction, cause and effect, dendritic output and neuronal necrosis – what, and to what effect? My body doesn’t obey, though it wants to. It has to want to. I need it to want to. 

It doesn’t obey but that doesn’t matter anyway. Because I wasn’t born with it and didn’t inherit it, so I’m on the outside. I don’t fit with others who have my condition; they’ve thought for long enough that an acquired version of their disease – my condition – can’t progress. But it can; and so it does. I’m too rare a case for them to know how to interact, integrate, without that moment when they nervously correct themselves for saying something that I shouldn’t  be able to understand, and they worry they may have offended me. But I do understand. I wasn’t born with it but I understand some small part of it. At least give me that. Please? 

An outsider to the outsiders, told that I can’t understand because mine is too different in origin. Even though it’s getting more difficult to ignore the vertigo, sleeplessness, restlessness in the legs I can’t rely on. 

Trying to express this to my family, my friends – ‘you’re doing far better since the surgery’. Yes; I know. But is what I’m experiencing happening to me because of my cerebellum, or brainstem? With overlapping symptoms, who can say?

What can keep my mind quiet when it gets to be too much? What about right now?

I learn about the brain because mine doesn’t remember how to obey me. And isn’t that something?

I spend thoughts on willing people to take me seriously despite my impediments. Despite dysarthria and ‘word soup’ sloshing in my head. They don’t, so I continue to study and wish that my body could obey my brain again. They hear me speak and see me move, and I’m suddenly dismissable. Ignorable. 

I’m sorry, but some of you wouldn’t have a job without people like me and my condition. Fucking acknowledge me. At least give me that. 

These disorders have rendered me vulnerable. Needy. I hate being me. But I like to be me. Please let me be me.

I study without purpose. I keep physically active, because I love it as much as I need it in order to combat the effects of my condition. I paint because I don’t know what words can describe the emotions. Selective, topic-specific aphasia that I can’t control. Can’t describe. 

Maybe it’s in my imaginings. Maybe it’s the new hysteria. But it’s not. I don’t know how to describe or express it, is all.

I hope. But what next, when hope isn’t enough?

To Mars and back

2017 didn’t make it past its first day before someone with Ataxia went away.

She touched so many lives during her 25 years here.

This morning, Noelle and Allie – a couple of my favorite people whom I met through Ataxia & Fitness – were absolutely… I don’t know. I don’t speak for them, but “heartbroken” and “stunned” are a couple of words I would choose to describe it.

You see, Mariah’s (aka “Mars”) FA (Friedreich’s Ataxia) went hand-in-hand with hypertrophic cardiomyopathy (HCM), a condition known to cause sudden cardiac arrest. And that’s what happened.

I barely knew Mars. So why did her death urge me to write about her, you ask?

Because she impacted me deeply, without leaving her bed.

She started the Facebook group “HandiQueers“, a safe-place for those of us who, as the groups’ name implies, are handicapped/disabled and also identify as LGBTQ. She gave us a safe haven. Giving that type of safety – that’s priceless.

But her death scared me, too.

It scared me because it forced me to think of Noelle, John and Laura. Last year John’s ICD (Implantable Cardioverter Defibrillator) went off, landing him in hospital for a bit. Laura’s heart stopped beating for nearly 10 seconds, which is what spurred her ICD implantation. It prompted me to remember the most recent time my heart stopped beating.

Mars’ passing made our small group feel. We care about each other; about Noelle and Ally’s (they’d been friends of Mars’ for years) heartache; our heart issues and general well-being. We’re there for each other during health scares, day-to-day life, mundane things that make us laugh; our concerns, hopes, stories, whatever.

It also made me angry. Because fuck Ataxia. Fuck strokes.

So 2017 hasn’t gone as hoped so far. Does it ever? But now I’m stopping and thinking of people – people who allow me into their daily lives, people I share thoughts with, people I’ve let go of and people I haven’t met yet.

I’m grateful.

People are precious. Thank you, Mars.


Mariah “Mars” 3/3/1990 – 1/1/2017

Well, that was sort of an earthquake…

It was a little before 11 in the morning and I’d already up hours. I flopped down onto the couch after my final set of squats. Pulling out my phone, I scrolled through my Facebook feed for a few minutes after finishing my morning workout. Time to catch a breather before eating my second meal of the day. Not lunch, mind you. Simply my second meal. I generally have four to five meals a day. 

Scrolling through my Facebook feed, I saw  that Adam’s parents had finished part of their vacation. I commented on Mimzy’s post. Liked it. Maybe both. I don’t remember. Anyway, shortly after whatever I did on Facebook, I noticed that my vision seemed slightly off. I don’t mean that it seemed worse; I mean that I could see a bit more than usual. My visual field cuts (homonymous hemianopia; vision loss in the same side of both eyes) interfere with 48% of my vision. Basically, if you take a pair of glasses and put black tape over the right half of both lenses, that’s what I see. Anyway, at that particular moment, I could see… more. I’m not sure how to explain it, but that’s what it was. More.

I [now] assume that was my aura/warning that the seizure was coming.

I furrowed my eyebrows slightly and sat up straight. My vision didn’t normalize after a few moments, so I set my phone to my side on the couch. Alarm was rising, and I couldn’t understand why.

“Adam!” I didn’t know why I was calling for him; I just knew that something was happening and I wasn’t sure what to do.

He was still asleep in the other room. I sat up straighter and wondered if I should get up to wake him. I looked down at my feet, scrunched my brow, then shook my head.

Adam!” It was near a scream this time.
I heard the bedroom door open and Adam asking, panic in his voice, if I was okay. Then everything was black.

Apparently, this is when I began seizing.

I don’t remember the next several minutes. The next thing I knew, men dressed in blue were kneeling around me. The living room coffee table had been pushed to the side and Adam was standing near the entrance of the living room with a worried look on his face.

I think the men in blue were saying things to me, but I don’t remember.

I don’t remember them moving me onto the gurney, rolling me down the hallways of the mid-rise, loading me into the ambulance, or the drive to the hospital. In fact, I still somewhat thought that the paramedics were two of Adam’s friends who had come over for a get together or something. I don’t know. I was having seizures, okay?

I don’t remember a lot of what happened next. I know that I had a CT scan at some point and did a lot of waiting in the emergency room. I don’t have MRI scans because of my DBS implant. At least, I don’t have them without a lot of preparation beforehand. So, no MRI scan for this.

I was really tired. I wondered where Adam’s friends (the paramedics) had gone. Eventually, I calmed myself down enough to begin talking with Adam.

Over a period of several hours, I began to understand what had happened. I made plans in my head. 

Message Steve. You can’t ride for a while because of this. That means no training camp in October. You’ll need to send the trike axle back. But that’s okay, at least the timing is alright. It’s heading into winter now, so you’ll be doing most of your riding indoors anyway. You need to let rehab know that you won’t be there this week. You need to cancel your massage for tomorrow. You’ll need to let Cathy know that you won’t be doing the 35-miler this weekend. You won’t be doing the events for the next several weekends. No events, no training camp in California next month. You probably won’t be able to keep up with your training for several weeks. This is going to suck. You’ll be fine. I don’t know what’s wrong, but I’ve gotten through worse.

As I’m writing this, I’m beginning to realize that I really don’t remember much at all of what happened. I don’t remember who the last people I talked to were. I’m fairly certain that the last message I sent was in a Facebook group chat between me some good friends. I think. Maybe? John, Christy and Guy. I told them what happened… didn’t I?


A new prescription. 

At least ten hours after arriving, I was released.

Walking was difficult. More difficult than usual. The right side of my body felt like it was on fire. I would eventually understand that the sensation was actually the return of some of the feeling that I had lost during the stroke.

The stroke was nearly three years ago.

Three. Years.

Almost 3 years without an incident of some sort. But no. Now I’m on Keppra, an anti-seizure medication. 1000 milligrams, twice today.

I just want to ride. Not that I can. I have to send my axle back to my coach. Because I can’t ride for three months. Doctor’s orders. How am I going to train if I can’t ride?

Yeah, I know. A stationary trainer. Calisthenics. Free weights. Balance. Things that I already do. But I really just want to ride.

Me and Jeff after his surgery.

Jeff had his DBS surgery yesterday. I went to see him in recovery and was amazed at how well his tremors had responded. I mean, I knew that very little tremor would be left. But still. To see it. To actually see it.

I have no idea what the point of this post was anymore. I’ll update later.

Seizures suck.

A very quick recap of yesterday: I began having seizures just before 11am CT yesterday. I don’t remember much and was pretty confused for a while. Anyway, I’m home now and am getting scheduled for tests this week. Jeffrey’s DBS surgery is early tomorrow morning; I’m hoping that I can still go to that. 

The worst part: no more cycling until I’m completely cleared. So, January at the earliest. I’m out of the running for talent ID camp next month. The combination of my cycling speeds with potential seizures has been deemed a no-no.

I’m putting that^ in this post so Steven (coach) can see it. I’m not in my best state of cognitive function at the moment, so hopefully this message gets to the intended people. 

Anyway, I’ll update on this topic later. Ciao!

Vertigo cont. plus an AFO!

“May I have your date of birth and is the member ID number on the back of your insurance card?”

I wanted to cry. My prescription was going to be filled and, soon, the world would stop spinning and I’d be able to close my eyes without feeling this feeling.

Vertigo sucks.

I read my birth date and member ID number to the young woman on the other end of the phone call.

“I’m sorry, could you repeat that?”

Fricking disarthrya.

I begin again, using the tips that I had learned in ST: speak slowly, over enunciate, and focus on not running out of breath. It worked, of course. Sigh.

Calm down, I thought to myself. My speech gets worse when I’m excited. And I was getting my prescription refilled, so I was pretty excited.

She was eventually able to understand me enough to process my request. My prescription of Sertraline would be available for pickup as soon as I contacted the pharmacy.

Relief, elation, relief, elation.

That was maybe twenty minutes ago. It’s been around a week since I was last able to take my prescription. A combination of phone and memory difficulties had prevented me from obtaining my prescription for the past week. The vertigo has progressively worsened over the last week; I managed to glean a few hours of sleep last night, but it wasn’t enough. I sleep a solid 8 to 9 hours now that I’ve had a stroke. Pulling 3 to 4 hours just doesn’t cut it.

Why can’t I sleep? Imagine getting on a roller coaster and not getting off of it. Eat, sleep, walk, dress, bathe – do everything that you normally do while you’re on that roller coaster. But don’t fall off. That’s the level that the vertigo has reached.

For the first time in over a year, I pulled a cane out of the hall closet and relied on it to stabilize me. You know, it’s not a great feeling, taking a step backward. Even if it’s only for a few days that I need to use it, it’s a step backward. I know that it’s necessary, but it’s still a step backward.

It was interesting at first, the vertigo. I spent several hours each day for the first few days researching connections between vertigo and the lasting effects of the infarctions in my brain. But it’s not interesting anymore.

I do wonder if the Sertraline (generic form of Zoloft) has been treating depression in addition to vertigo. I mean, that the primary you use of Sertraline, but I wonder about that for me specifically. I was prescribed Sertraline for tremor and vertigo, but I’ve noticed a few things very symptomatic of depression since I’ve been off of it.

I’m thinking that if wean off of the Sertraline for a time, I would likely be on the severely depressed/suicidal side of things. To be fair, it’s a little difficult to really determine whether the depression is due to the current status of my vertigo, or due to an actual chemical imbalance in my brain resulting in depression, as a result of the stroke.

I’m a nerd, right? Who else would study their own symptoms of depression? A neuropsychologist or a neuroscientist. Which is what I’m studying. Go figure.

Anyway. Moving on!

Today was pretty interesting. I had PT and OT this morning, and my orthotist brought my AFO to my PT session. It fit and felt great. So why don’t I have it, you ask? Because I broke it. Seriously.

afo-flexibleThe tone and foot drop in my right leg and foot actually broke the AFO. Well, it broke the straps on the AFO. My foot was so determined to point downward that the strap that held the AFO to my foot and lower leg simply snapped. It is a rigid AFO, meant to strengthen and support my ankle and whatnot during stride dorsiflexion.

I was originally looking to get the Allard BlueROCKER that my coach, Steven, uses (the featured image of this post is of him on his trike and wearing his AFO), however the strength of my foot drop and tone overpowered it, and the strap holding it to my foot simply broke. So I’ll need a rigid AFO until I have enough strength to move to using something with a flexible ankle piece, like the BlueROCKER has.

2894_bluerocker_2-0So my orthotist took it with him so that he could replace the strap with a heavier one that will actually hold against my level of tone. It should be ready on Wednesday, so I’m excited. Take that, unexpected depression!

I’m strangely cheery given the chemical circumstances going on in my brain, aren’t I?

Okay, well, the room is spinning again. Still. Later.


Is this really worth it? Yeah. It is. 

*sorry (#sorrynotsorry) for the language.

Friend: ​Is [your sense of touch] even half of what you want?
Me: No. I’ve got a long way to go before I reach that point. I can’t train whenever I want, can’t drive, can’t cook, can’t write, I’m half blind, can’t feel touch, can’t speak like I used to, forget how to read, forget how to speak, randomly forget half my life, can’t always recognize people I’ve known for years, can’t ride my bike, can’t play music or make art and I freaking went to school for music and art, can’t go anywhere without telling someone where I’m going in case I forget where I am or what I was doing, can’t hold a job because I’d likely forget to go to work, etc.
Me: But I’m studying neuroanatomy anyway, practicing art and music, learning how to write, learning math and languages I’ve forgotten… It’s just going to take a while to be able to do those things again, but it’ll be so freaking worth it. Getting to learn how to do things that you used to love to do – not everyone gets to learn to do those things twice. So, we’re the lucky ones.

Friend: I’m not afraid of cars. I’m not going to sit still over a car. Isolation is my biggest fear
Me: I hate the isolation. I live in one of the biggest cities in the country but end up going for days, weeks without seeing a ‘friend’. Isolation fucking sucks ass. Sometimes I wish I’d get hit [by one of those cars] but then remember I’ve died before and it fucking sucked, so I stay alive for people like Adam and Andrea and Heather and Christy and John and Guy and you. It’s worth it.

Real friends – people are worth it. ‘People are precious, and sometimes we forget that. …they need friends, they need love. …love everybody, even the little and dumb and fat and ugly and weird, and, well, if we all lived like that, then maybe terrible things like we’ve just seen wouldn’t happen… and I guess that’s it.’

What will things be like for you in a year?

Well, I don’t know. I’ve been asked a few times since having DBS surgery and I don’t know is the simplest answer that I could come up with. I definitely hope that I’ll be where the gentleman in the below video is, but there’s no way for me or anyone else to predict that. The brain heals the way it heals, and no brain heals exactly like any other brain. Even if two brains have the exact same injury (not possible, by the way), they’ll heal differently.

My hopes are that I’ll be walking more normally – my truncal strength and stability, gait pattern, and affected leg strength – in a year; that I’ll be on my way to running; that my speech will be clearer; that my memory will have improved; my ataxic balance, coordination and speech will be more stable; my affected hand function will be more normalized; that my aphasia won’t irritate the crap out of me anymore, and I hope that I’ll be able to write my name without it taking upwards of two minutes.

Let me explain. I can do all of those things. I I can walk, run, talk, remember, balance, speak and understand what’s being spoken to me (for the most part), write… just not well, or at least, not as well or as easily as I would like. But there’s always room for improvement.

I hope that you, whoever you are, don’t take anything for granted, though I know that you do. It’s an inevitability; it’s likely that I’ll be taking my vision for granted again within a short amount of time.

Taking things for granted happens. It’s a part of being conscious. But that doesn’t remove any of the value of whatever it is being taken for granted.

Common normality is what the majority of people can do with relative ease – those things are what some of us regret having taken for granted. You don’t know that you took something for granted until you realize it’s gone. And, like my vision, I didn’t realize that I’d taken it for granted until I had an inkling of an understanding of what I no longer have.

But it’s perfectly okay to miss out on things. In fact, simply because an ability has been removed does not mean that the person it was removed from will miss it or wish that they could have that ability again. Humans are amazingly adaptable. We’re incredible.

I’m going to go look at more stuff now.