Quiet

I have come to find that one of the biggest feelings you can feel is that of a hollow, empty, reckless emotion that evades any possible reason or cause. It whips you around at times, completely unexpectedly, striking you from the edges like a car nicking your side and sending you reeling into some utter tragedy.

It is not something controllable, and the dangerous carelessness of it all becomes a comfort; a sort of safe haven in knowing that something serious could so very easily happen. And yet, sometimes the thought of a tragic event is what is actually desired, needed. The beautiful slowness and shock of it all, the smallest details in that collision with another car; the shards of glass shooting outward in a rain of angry water, and the horrific silence that comes during the roaring deafness that covers the senses, rending the mind into a state of sensory overload far different from normal.

It is a violently peaceful feeling.

It is the recklessness of that emptiness that I find comforting. The complex, detailed, intricate beauty of the terrible emotion. The knowledge that I still love, and that should something happen to someone I love, I would be jolted right back into reality, away from that hanging spot between two oblivions. That spot between heaven and hell, and not caring which one I make it to, or if I make it at all.

I find that once this emotion completely emerses me, I become near invincible — or, at least, that’s how it feels. I ignore the things that I know will rip away that invincibility. Things like intimate conversations with the most important person in my life; something that I have also found drives rifts between us until I become able to unwrap my mind of the cloud that caresses its edges, and return to shore. I ignore the touch of another person, the concern and expressed hurt in their eyes when I turn them away.
Well, I try to ignore it. Sometimes it drives me further into the collosal emptiness, and other times it is the rope I need to safely pull me away from it.

I know that I cannot ignore their wishes or discomforts. I will not allow myself to knowingly be the cause. These are the only things that I cannot overcome with this feeling. Maybe the love is strong enough that it overpowers the thrill of the lack of emotion, or that I am simply too weak to succumb to such acts of such extreme selfishness. The one thing I hate most about myself is my selfishness. It is a difficult war to wage.

Back to the topic. You begin to focus on detail. The colors of the horizon or the patterns of the leaves on a tree. The amount of times she laughs, or the way the corner of his lip curves in a half smile, the way the wind rushes past and how many times its breath has touched you. It is as though you refuse to communicate so you wishdraw instead; become a different person entirely. Empowered and weakened, protecting yourself both from the harms that could come to you in this vulnerability, this nakedness, and from the gentle care that you may continuously receive from the hearts of your closest friends.

I both hate and love this feeling. What’s broken in my brain?

It holds contradictions. Weakness and strength, the desire to be held and the sting of my skin when something brushes it, or the intensity of detail and the want for a view of everything.
It is one of the deepest, heart-wrenching, painful feelings ever experienced. However, sometimes it is the pain that makes it so appealing. The return to something familiar, the letting go and drowning in it; the protective strength in feeling alone. It is knowing that you are alive because you feel such a pain that you cannot share it with another person — would not wish it on someone else. Knowing that you are strong, because you are strong enough to bear it
alone.

When the feeling fades, the world slips off your shoulders. It sinks further than you did when you were drowning, past the line of the horizon, between harbor and maelstrom; yet always within reach should you need to tuck yourself away again.

Post-stroke depression is a bitch. Smile anyway.

Milestone 

Today I brushed my teeth with my stroke-affected, hemiparetic hand. 

3 years later and it’s still the little things that make me happy. 

Bluntly :)

Is your boyfriend in a wheelchair too?

Can you have sex? You know, can you feel down there?

Do you have a license for that thing?

I always get, “Has it got a horn?”
> Do you play wheelchair basketball?

> I feel like that’s everyone’s standard if they see someone in a wheelchair. “Oh, you must play sport!”

> Are you going for the Paralympics?

> I used to play wheelchair rugby on the weekends and it’s no big deal. But people are like, “Oh, are you going for Tokyo?”

> My brother, he plays for England, wheelchair football. And it’s really actually patronizing to  him because people come up to me and say, “Oh Kel, have you thought about joining the team?”
“So, what happened to you?”

> Where do I start with that question?

> I’m like, I haven’t DONE anything. I was born.

> I’ve told people I got attacked by a shark.

> … I was in a car and it did seven flips and it exploded and I lost a leg.

> One that I say to people is that yeah, I got hit by a wheelchair.
“Can I have a go?”

> I hate it. I hate it so much. It’s like, where am I going to go while you have a go?

> They expect me to stand there for 5 minutes while they wheel around in my wheelchair?

> My wheelchair probably cost the same as, probably double, more than some people’s first car. Sooo, yeah. I’m not letting you near it.
“You’re so brave!”

> Yeah, when you get like drunk people in a club, “You’re so inspirational, you’re so brave!”

> It’s always, “High five!” Or, “You’re so brave… It’s good to see people like you out.”

> Complete strangers come up to me, tap me on the head, without permission, and say, “Oh, you’re so brave.”

> Just because you’re a convenient height they start leaning their hands on you or on your wheelchair.

> Or the pat, the pat on the head.
“Do you work?”

> Yeah, I have that all the time.

> I’ve noticed that I always get asked, “Do you work?” rather than, “What do you do?”

> Like when I went to apply for a mortgage at the bank, the woman sorta said to my husband, “What do you do for a job?” And Jaz said whatever and she wrote it down. And then she said [to me], “And you’ll be entitled to some sort of benefit, I presume?” And I said, “Well actually, no. I own my own business.”

> They always ask, “So what kind of benefits are you on? Do you get a free car? How much is it? How much do you get paid?”
“You can walk? It’s a miracle!”

> Not all people in chairs are unable to walk. Let’s just make that clear.

> People think that you can’t feel anything, or stand up.

> I might have an itchy leg, so I’ll get out of my chair and itch my leg, stuff like that, and they’ll think that I can walk. I stood up, I haven’t run a marathon, you know, I’m not Usain Bolt.
“Sorry we can’t do wheelchairs.”

> Have you had that when they say, “Oh, we’ll carry it up.” And I’m like, I don’t think you quite understand the weight of an electric wheelchair.

> Also when you go to gigs you’re in like, a wheelchair chicken cage. They put all the wheelchair users together like we all know each other.

> Wheelchair corner.

> When you go into a pub and you know already they’ll have used the disabled toilet as a storeroom. And they’ll go, “Well, we don’t get many of you people in here so we just use it as a cupboard.”

> I go up to pretty much all of them and they’ll just be like, “Sorry love, don’t do wheelchairs.” I’m like, “Well, that’s what your ramps’ for, so can I just get in?” And they’re like, “No, sorry love.” And they would rather drive off then take my perfectly good money.
“Can you have sex?”

> Yeah, that’s probably the most asked question.

> [sarcastically] No, people in wheelchairs are not allowed to do that. They’re not allowed. And they do not know the law.

> They kind of assume that your relationship is really juvenile. And really like, “Awww, bless you, you’ve got a boyfriend!” 

> I can’t feel my legs, but that’s fine. But then people like – they ask you questions like, “Can you feel everything around there?” And I’m like, “Why do you need to know?!”

> “He’s looking after you. Awww, he’s sooo good!”

> “And he’s having sex with you? Awww!”
“Do you only date people in wheelchairs?”

> When I say that I’ve got a boyfriend, they’re like, “Oh, is he in a wheelchair too?” Or they’ll just go, “Well, what’s wrong with him?”

> I’ve had this so many times. And particularly on my wedding day, when I was marrying my husband who is able-bodied. My brother, who’s in the wheelchair, was at the wedding – obviously, because he’s my brother –  and somebody came up to me and my brother and said, “Congratulations!”

> When it’s just a profile, you’re like, do I put up a picture of me in a wheelchair? Or do I not, because I know that some people are instantly going to say “no” because of that?

> I had a friend who went on a date, who hadn’t put it on her profile, and the guy just left, because he said she’d lied to him.
“That’s awful, I’m so sorry!”

> No, our lives are not awful, and you don’t need to apologize, because you didn’t do this.

> The fact that I’m disabled, that’s the best part of me actually. It doesn’t define me, but it’s just made me into a stronger person I think.

> I think they assume that we hate our lives, we hate our wheelchairs, you know… [they say] “It’s so difficult.” And I’m like, no, my wheelchair has completely changed my life.

Personally, I find it’s what sets me out, just in life. It’s my unique selling point. 

> They’re like, “Oh, I’m so sorry.” And I’m like, what do you want me to reply to that? I’m not pitying myself, I’m having a life.

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Remembering Grace, again 

8 years, 1 day, 8 hours ago (February 13, 2009, 01:something AM)

I’m days from my 20th birthday and I have something that needs to be said before I lose the nerve to say it again. The way he forced me, then acted like he gave a damn when he found out about my baby – MY baby – no. Fuck that. 

So I stupidly rush to my car in the pouring rain, anger rushing hot through my veins. Adam, urging me to stay. I shouldn’t drive when it’s stormy. He’s always careful, always watching out for me, always calculating and weighing possible and probable outcomes, always right. 

I don’t make it even halfway down Northpark Drive before her car hits mine. I remember driving in the left lane of the road and seeing her slow at the median crossing, then realizing that she wasn’t going to wait for me to pass. Her blue car colliding with my door, crunching it against me, shoving me into the ironically stoic stop sign that must have somehow offended her.

I’m stunned. I sit, hands still on the steering wheel pressing against my belly and suddenly hate myself. I prepare myself for the worst while simultaneously, desperately trying not to consider the possibility. Probability.

I don’t know how long I sit there before turning my head to see the young woman walking around her car, inspecting it. A truck pulls up, two college aged guys, talking to her. She seems fine but off-balance. 

I’ve found my phone and speed dial Adam. He’s on his way.  I drop my phone again as one of the young men rush to my door. I’m still stunned; it seems like years have passed, not minutes. He struggles with my door, wrestling it open after yelling through the glass to confirm nothing was poking into me. 

Something – tail lights – blinded me momentarily. I watched in my review mirror, disbelief flooding me, as the second guy ran after her car as she simply drove away. Bitch. Drunk, prescription drug abusing bitch. Fuck you. 

Adam pulls up. I don’t remember what happens next. Something about the young men leaving because one had been drinking and didn’t want to get in trouble. Adam took over. An off-duty officer, then sirens and flashing lights, then an ambulance. But I wouldn’t be able to afford the bill that would inevitably follow, so I refused. Adam would drive me.

Next, the emergency room. A urine sample. An examination that confirmed what I already knew. A procedure, dilation and curretage. But wasn’t it too late for that? It’s been 4 months and several days since he broke me. 

“You’re medically stable now. We’re going to release you.”

That’s it? Well, okay, I guess.

Adam and his dad – I don’t know when he’d gotten there – in the waiting room. I don’t remember the rest. Was his dad there? I don’t remember. 

That’s what I do remember, though. I don’t always remember it. I’ve forgotten before, since the stroke. Heather, answering her phone and talking me through it after the first time I found the box that I’d apparently kept all record of Gracie in. Grace. Do you like it? Adam helped me pick it once we’d moved to the duplex in Montrose. 

But that doesn’t make sense. Weren’t we still living in Kingwood when Gracie died? Or was that the other wreck, the one that split my eyelid and tore at my brother’s leg? I’m confused. But I’m always confused now, so whatever. 

I wrote this because I know that I’ll forget again in a few days. I kept myself busy yesterday, Valentine’s Day, and the day before by doing silly things – gluing my fingers together and pestering my cousin, Chris, at work with questions about how to remove the glue before Adam got home to see the mess. I sent a picture of it to Adam anyway, in case I wouldn’t be able to clean it up before he arrived.

I texted with Andrea. Video chatted with John. He cheered me, without having to be told what was wrong. I talked with our friends in a Facebook group chat. Noelle had had a rough day and was still snowed in by the snow storm in Maine. Laura,waiting for a package. Alisa, sick. I wish I could be there for her. But, ataxia.

My birthday is this Sunday. Ugh.

I don’t plan anything for my birthday anymore. Other people usually plan something, if anything. Don’t get me wrong, I love it when something gets planned and pans out; the effort that goes into it, the thoughtfulness. I don’t have the energy to get around the sadness, so nothing would happen if other people didn’t plan it.

Several years ago, I threw together a last minute party with some girlfriends. Then I realized that I was forcing myself to smile throughout the night and decided not to plan another birthday party for myself. It was a good decision. I have more energy to be happy.

I woke up today not wanting to forget again. So, like I said, I’m writing it down here. Maybe I won’t forget as easily this time.

Brad

Brad Blaes 
5/14/1987 – 2/7/2017
Spinocerebellar Ataxia type 3

Lower 

I have days when things get bad. When too much sensory input collides with my still-healing and forever-damaged brain. I hate these – those – days. I don’t hate it during them, though; I don’t anything them because I don’t feel anything about anything on those days; it’s peaceful, quiet, to feel nothing other than momentary agitation when I’m required to convey some sort of response about some matter when I actually do interact on those days.

The following days, though, those suck. Vulnerability. Anger. Terror. Defensiveness. Self-preservation. Survive, just one more day. I don’t really like the days that follow.

Depression is fairly common following a brain injury, though it’s not always noticed by clinicians. I have it, though none of my clinicians have thought to take much notice of it. I’m generally a happy person, so why mess with that equilibrium, right?

Right.

Rant over. I’ll write a post with some stuff to back things up. Tomorrow.

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.

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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?

Tests.

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!