Freshly Poked: A Sequel

Okay, it’s more of a continuation
The previous post is here.

     I had the biopsy on my left breast today.  I had so much anxiety going into this that I tried my best not to even talk about it.  I did no research on what to expect because it increased my anxiety to think of what it might “feel” like to someone like myself.  If I saw pictures of the needles, the thing they use to do the biopsy, or any other sharp objects going in or near my tit…I might have sweated my glands into uselessness by now.

I’m always the “special case”

     Before the biopsy, they go over the procedure with you, give you an opportunity to ask questions and check to make sure the lump is still visible.  After the tech found the lump, she brought in the doctor and, as it turns out, there’s two lumps.  I thought I felt two the other night when I was feeling for changes.  I feel like this is evidence it’s debris like they originally suggested but who am I to say?

     I took this time to ask about the clip since it was all too much to process the first time.  It’s just a sliver of titanium no bigger than a grain of rice that is basically used to mark the location of the lump for future mammos.  If the lump is benign, “they” will know this thing was examined and deemed non-threatening. If it needs to be removed, the clip comes out with the lump.  Why couldn’t they just say that before?

     They explain the lidocaine.  It’s a pinch followed by a slight burn, then a “deeper” burn before it’s numb.  I’m their first patient with hemiplegia.  No one knows how much I will or won’t feel, or if it’s going to be more intense than average.  At least they prep me on their ignorance.  I’m actually getting used to that with doctors and co.  Every procedure, shot, test, shock, touch…everything done to my left body is an experiment for everyone in the room to study while I’m a rat hoping it goes well.

     She explains the biopsy and I’m hopeful it’s no big deal like she says it usually is for most people until she tells me the “except” part.  Of course, I’m an exception.  Whatever I go through, I’m the exception.  Even before the stroke.  Even the stroke itself! No only do I have two lumps close to the nipple, one is directly underneath it.  It’s one of the more difficult areas to biopsy according to them.  That’s more unknowns to factor in.

Not a cyst

     As she starts telling me what to expect, I ask about the possibility it’s a cyst.  Now, no one told me thus far that it wasn’t a cyst so I’ve been hopeful it was despite the doubting logic in the back of my mind.  How do you biopsy a cyst?  Wouldn’t that make it pop?  Wouldn’t it be risky?  Have I ever heard of anyone getting a cyst biopsied before?  Wouldn’t it have grown by now?  Or shrunk?  Would a cyst break into two hard pieces or down into two soft pieces?   These are things I would have Googled if I wasn’t such a chickenshit.  I’m not sure what I was more afraid of: answers I didn’t want, or inducing more anxiety and paranoia.

     Either way, they don’t biopsy cysts, or she doesn’t.  These are definitely something but we don’t know what.  She thinks it’s debris that hardened.  I told her I had a lump in 2007 and was told it was debris since the lump was gone by the time my appointment for the sono came up.  She said it’s possible these lumps are debris from the previous lump that has hardened.  She then said the previous debris was likely cells What does that even mean?  I could only nod like I understood.  Why are there cells turning into debris in my boob?  What kind of cells?  What do you mean?!

     So anyway, your ducts can harden, cells can harden, debris forms…I don’t know.  Apparently shit can just linger about in your tit like annoying friends you can’t drop enough hints to.  We’re being blunt now, jamming these fuckers with something that sounds like a staple gun as it takes enough chunks out of them to study beneath a microscope.  If they bite back, bearing teeth with venom tips, we physically remove the bastards.  If they’re like, “hey man, all is cool, you’ll barely notice we’re even here,” we just leave them be.

     They went over post-care; which was a long list for a reasonably quick procedure.  I don’t remember half the shit they said except no ibuprofen and to wear a sports bra overnight.  It was pretty simple, pretty cut and dry.  They do a mammo right afterward then send you home with an icepack shaped like padding for a bra, and a piece of paper detailing post-care.

     I’m fairly confident it’s debris or whatever they want to call it.  Maybe I’m being too hopeful.  The thing that concerns me most is the sensation of a hot wire being pulled through my nipple.  What is that about?  I really felt like this was a sign it was a cyst or something.  What does it mean now?  If there’s no reason to remove it, will I always experience this hot wire sensation?  I will have to wait for the results before I can ask and receive an answer with more probability than hypothetical.  Luckily, the results should be in by Friday.  I’ll do my best not to freak out before then.

It’s the best I can do from here

 

That Time I Went to the Gym

And then chipped a tooth to keep from crying all the way home

     Out of boredom, after nearly 6 years of gathering courage, I finally went to the gym to give machines a try.  It was a whim.  It was bold.  It was spontaneous.  It was courageous.  It was a damn mistake.  Everything I feared would happen, actually did.  I even got kicked out.  Yeah, I got kicked out.  I was wearing jeans, I get it, it’s against the rules….but it took me 6 years to get there and all I did was find out how completely unprepared I was, and that my anxiety is more a predictive service than it is a restrainer.  It knew what was going to happen.  It knew I wouldn’t be able to use the machines without the assistance of a professional (as in, not my husband).  It knew I would have difficulty walking.  It knew I would feel utterly, hopelessly lost in a fucking gym.  It knew I would apologize for every breath I took in that damn place.  It knew that the longer I was there, the harder it would be to keep trying.  It knew that the harder I tried, the clearer my boundaries would get.  It knew that I’d be so wound up by the time I’d leave that my left body would be near completely useless.

And Yet I Went

     And I’m not entirely sure why.  I knew Kasper would chaperone me even if I told him not to.  I knew he would feel obligated to follow and assist me.  I knew this would make me feel terrible and guilty.  I knew it would make me wish I didn’t agree to go; like I was some groupie girlfriend who can’t ever leave her dude’s side and must always have him hold her hand through everything.  I knew he’d push me to try machines I already knew I couldn’t use but would try anyway because it’s what he wanted– and I knew I’d be the one walking away each time feeling worse for walking face first into yet another wall of limitation.

     I knew my left body wouldn’t cooperate.  I knew I’d feel jealous of everyone around me.  I knew I’d look at the machines I couldn’t touch and feel my left body growing heavier with the weight of its burden.  I knew I’d look at the others and see a reflection of myself that could never could exist.  I knew Kasper wouldn’t understand how I felt inside and how much I just wanted to spin in a confusing circle and scream “I don’t know what’s going on!!”  I knew he wouldn’t understand how much of myself I had to swallow just to stay inside that God-awful place.  I knew he would have a negative view of me by the time we left.

Anxiety Warned Me

     It warned me for almost 6 years.  Every time I seriously considered going to the gym, everything mentioned above would flit through my brain like a gnat trying to land, knowing it can’t.  It’s overwhelming and no matter how much I’ve wanted to go, I just couldn’t bring myself to do anything more than sweat profusely and say:

Maybe next time

So…Maybe Next Time

     What I hope is that it won’t take me another 6 years to enter a gym without a prescription required, first.  I wouldn’t mind physical therapy so much if my city had a decent facility with decent therapists.  They don’t have to be the “best of the best,” “cream of the crop” type crap, but, can I get an actual therapist?  For once?  I don’t know how others do it.  One day I’ll figure it.  Today obviously wasn’t that day.  It’s unfortunate but at least I can say I tried….right?

Maybe…If I Try?

The problem

     I’ve been thinking a lot about our shitty financial situation and how little I’ve been able to contribute.  I feel so much blame for things being the way they are.  It wasn’t just my stroke that put us here, but also my shitty life planning skills.  I love Kasper, but I’m too honest and realistic to deny the fact I hooked up with a “loser.”  He’s never had any goals, truly put in work for anything, or showed initiative, gumption, or care for anything that required any kind of labor– including the labor of effort.  He does what I view as pretending to try, both of us knowing it’s always for show.  When I was working, I assumed I would be the responsible one: the one always thinking about how many hours she can squeeze out of her job, sacrificing personal items so the house can have what it needs, and sacrificing time with her family so they can have everything they need and want.  I always assumed I’d be the one planning, earning, and spending.  I was okay with this because, like my mom, putting in the hard work at an “easy job” was so much better than failing at trying to be successful.  So, I accepted Kasper and his way of avoiding life because it kind of aligned with my own ideology.

     In all honesty, I probably could get a job.  The question is whether or not I’d be able to keep it; or, how long would I be put up with before I’m finally fired?  Doing things with one hand isn’t really as difficult as one might think once you get accustomed to it and learn how to work with it.  It’s this other arm.  It gets in my way; like, a lot.  The other day, I was sitting at the house PC browsing for Christmas gift prices; I’m not sure how it happened, but my left hand got stuck to the underside of the chair.  My fingers had curled up around something under the desk chair!  I got so anxious about being stuck that it tightened my grip and turned my elbow so I basically locked myself in…

     I have more than a “limp.”  Limping is no big deal, I’ve worked with people with limps before.  It’s not just the limp, however; it’s the speed, the hip pain, the knee locks, the supination of the foot, the teetering while standing still, and the overall frustration of remembering how to walk: back straight, chin out, don’t hitch the hip, don’t let your knee lock, keep your arm in, eyes forward but also monitor your space for careless folk. You see, my “limp” is a full mind and body battle with every step.

     I’m unreliable and undependable because of chronic migraines, chronic fatigue, chronic pain, spasticity and joint stiffness/aches.  I’m easily confused by numbers, columns, time, letters that don’t make words, basic written instructions, directions (e.g, I never know which side of the building the street is on).  I’m emotionally unstable; there is literally no telling how I will react to anything.  I may cry, I may yell, I may laugh– I’m sorry you crashed into a brick wall. I promise my uncontrollable laughter is not because I find your car loss funny; it’s just my mind being impossible…again.  It could seriously go either way with me.

I’m going to learn to drive

     I have anxiety, the kind that’s more negative thinking and heart palpitations than it is hyperventilating and shaking.  I’ve had it all my life; it makes it difficult to go out in public, and having this acquired set of disabilities has helped me feed the anxiety I learned to silently starve throughout my late teens and most of my twenties.  I eventually had to get a job (I was 19) and the anxiety just kind of melted away on its own after a while.  I was still damn awkward but I was out there meeting people, smiling at strangers, and soon, walking into stores with my chin out and head high, striding confidently to get what I needed, pay, and leave.  I keep thinking I can do this again– that a job will help me be who I want to be, with disabilities and all.  But it doesn’t work like that.  Everything is a process.

     I have to regain independence.  I never learned how to drive.  I was scared, for one; and two, Stilla got all the driving lessons from the parents.  Mom took me to a graveyard once but I got her escort stuck on a tree root crossing the graveyards narrow dirt road. She tried again 2 years later.  I almost drove into a ditch because she forgot to tell me the power steering went out until I tried to turn a corner and the truck kept going forward.  There were a couple friends that tried but one had a “hoopty” and was difficult for me to manage. The other had a truck.  We were in a parking lot, during the one time I tried snorting meth.  I almost drove into a light pole but managed to do some sort of master reverse maneuvering thing which was pretty awesome…

Picture it brown and imagine it squeak and squeal with every bump it hits

     Learning to drive won’t magically give me a job, “cure” my anxiety, or do anything else I’d rather not work hard to accomplish, but it might provide me with a renewed sense of independence.  I can no longer walk where I want to go and taking the city bus, despite it being an affordable option, is something that really ruffles the feathers of my anxiety.  There’s a lot to consider that sound like excuses but in my head are perfectly sane reasons to avoid the bus altogether.  I would really love to go to a store and actually look at what I want to look at rather than always considering how much time of Kasper’s I’m stealing from him. I feel this will help us both a lot.

It’s time to be for real

     I want to trust Kasper to get a better job, to accept more hours, to do what needs to be done without laying the guilt on me, but I don’t think he’s capable.  There’s a reason I “wore the pants” before the stroke.  There’s a reason he’s still at the same shitty job with the same shitty hours while I’m biting my nails down to nothing.  I can’t use my thumb right now because I bit the nail so short it exposed too much thumb skin…ew.  I feel if I learn to drive, Kasper will be forced to run out of excuses.  I can take myself to my own appointments.  I can worry about the kids’ school schedules while he worries about getting a better work schedule.  I can do the grocery shopping while he’s at work (I’ll find a way to get groceries in the house on my own).  I feel like he’s using me as an excuse to not grow up while telling me how he’s ready to grow up.  Dude is almost 40….

     So, if I get my license, which I’m told I can totally drive with one hand without a special needs vehicle, then I’ll relieve some of Kasper’s burden while gaining independence.  I’m hoping this independence will help me learn to function with my anxiety once again and help me get a job.  Maybe functioning outside of my house and contributing to it will help with my depression.  Maybe weakening my depression will strengthen our household…

Maybe I’m putting too much stock into maybe’s…

Apparently, I Hide It Well

Disability…prevalent?

    I’ve had physical disabilities for over 5.5 years now.  I think it’s obvious: I hobble and limp, swing my arm like a chimp, am lopsided…the list goes on.  Sometimes my nerves and anxiety get me so physically wound up that my left arm sticks out like it’s waiting for a proper lady to come slip her arm through it.  Sometimes my leg stiffens and it’s like walking on a stick with a shoe at its bottom.  I get stuck in doorways, freeze in crosswalks, and anything more than a quarter of an inch high is considered a step to me– one I have to mentally map how to approach and conquer.  I think my disability is quite evident to people who meet me standing up, see me walking, or have spent enough time with me to notice that I don’t move my left arm or hand without my right hand’s assistance.

The random “really?”

     I spent the first year of my post-stroke life mainly in a wheelchair.  I used a quad cane at home or to go places I knew I wouldn’t have to walk long distances.  With the chair, people knew I was physically limited.  I think the first time someone was surprised to learn of my disability since leaving my chair was a couple years ago, the maintenance man in my complex. I’d been in this apartment a couple years at this point, was familiar with this maintenance man, and thought he was familiar with me.  Maybe he finally noticed something on this day but he was really dumbfounded when my response to whatever he said to me was that I’m “partially paralyzed” on the left side.   He couldn’t believe I had a stroke or that I had such physical disabilities as a result.  I couldn’t grasp his disbelief for days…. How had he not noticed?

Kids don’t see disabilities?

     I don’t like other people’s kids.  I never have.  Even as a kid I preferred older kids and people; not because they made me feel older but because they seemed to respect my silence more.  There was no obligation to communicate in a way that entertained them.  Older people don’t mind kids that are quiet, I learned, and it gave me an opportunity to observe without interference or ridicule.  The kids in my neighborhood that my kids play with are not at all like I was growing up.  These kids are annoying and inquisitive in a very loud way.  I can’t stand it.

     Not liking other people’s kids doesn’t keep me from socializing with the ugly turds, however; especially not when I’m outside with my kids and they come to play with them, too.  I may not move around much when people are around me but  I still move.  One thing I do often with my youngest is draw with chalk on our stoop.  He loves when I draw things for him, and so do the neighborhood kids.  Usually, halfway through drawing something, I have to chuck the chalk aside and vacate the area before I’m known as the “bitch mom” because these kids really get on my nerves with their questions.  So, I know these kids have seen me struggle to get up from the ground, seen me step on and off our one inch high “step” with caution, and seen me use Skas’s shoulder as a cane as I crossed the bumpy yard for one reason or another.  Despite all of this, no child has ever acknowledged my useless left side.

When parenting brings you courage

     I have a lot of anxiety about a lot of things when it comes to parenting– one of those things being other parents.  I believe in children learning to cope and deal with their problems but every now and then, as a parent, you have to step in and protect your kids.  That happened to me today.  I’m not a very confrontational person but I am aggressive, especially in tone.  I worry that I may say the wrong thing and parent’s may not want their kids associating with me, leaving my kid feeling left out because of me.  I also worry that my stepping in might teach my kids how to avoid dealing with their own problems. But today, not even my anxiety was strong enough to stop me from stepping in.

     Skas came in from playing with his friends and after some prying I found out he had 3 large bumps on his head because this kid hit him with a broken piece of a toy gun.  Long story short, he came in so his “friend” wouldn’t see him cry.  I told him it was good he walked away because A.) this “friend” doesn’t know he hurt him; and B.) he walked away instead of making it worse by fighting unnecessarily.  I’m unsure if this was good advice but I felt like it was the best thing to say so he didn’t feel weak for not hitting back.

      I then decided I had to speak to the parent.  Some shite hit my kid in the head hard enough to leave 3 large bumps.  I couldn’t let it slide.  And, I had to show him I have his back and that yes, I will put on my brace and walk my miserable ass across our parking lot, and rat this kid out for being a douche.  While I’m waiting for this kids dad to put on a shirt, his annoying little sister comes out and notices my cane.  She asks what’s wrong and I just stare at her like there’s something wrong with her.  I explain my left side is paralyzed and ask if she’s ever noticed before.  She hasn’t.

     I tell the dad how I normally wouldn’t intervene in my kids’ yard drama but felt like this was something worth discussing with him and explain how his son hit mine hard enough in the head to leave 3 large bumps.

As a parent, I would trust you to understand why I felt you should know how your son chose violence to handle a situation.

When parenting brings awareness

     And that was it.  What took me 10 minutes to contemplate how to approach and what to say, was over with in a matter of, what felt like, seconds.  I stumbled and stuttered, I sweated and twisted my fingers nervously, but I stood up for my kid.  For years I’ve worried about moments like this.  How far will I let my anxiety and disability hold me back?  What exactly am I willing to risk for the sake of hiding?  Apparently, I’m not willing to risk the trust of my son.  I’m not willing to risk his health or safety while outside either.  And, apparently, I’ll instinctual-y confront other parents about their kids actions, something I worried more about since my stroke.  It amazes me how little I considered my anxiety in that moment.  It amazes me how little my left body hindered my steps to that apartment.  Like, I did some actual parenting…and I totally owned and survived it.

     On my way back to our apartment, cane in use and kids in tow, I thought about the little girl’s shock to see my disability.  I thought about the maintenance guy, and the people and looks in between.  How accustomed have I become to my left body, how much have I learned involuntarily to compensate for my physical losses?  Why do people seem stunned to learn I can’t just jog down a flight of stairs? Do I not look or move as crookedly as I feel I do?  I’m keenly aware of my disability; am I so concerned with how it appears that I’ve somehow managed to learn to reduce its prominence?

Catering to a Non-Disabilty

No one wants their kid to grow up to be this guy

     JJ is about to get his third AFO within the next year.  His right side has improved a lot since his non-diagnosis of cerebral palsy.  He’s still left side dominant but he includes his right hand more often than not now.  I can’t go as far as to say he’s ambidextrous despite the fact he writes with both hands from time to time, because everything significant that he does is led with the left hand.    He’s learned to jump, I think last year (at 4 y.o) and he can now wear sandals without his brace, which was a huge relief.  Personally, I hate not being able to wear sandals or flip flops anymore so I’ve put it into my head that he’d never know life unless he can wear sandals.  He continues to throw tantrums over things I don’t understand; it’s like he does something thinking he’ll get in trouble for it but when he doesn’t get in trouble because it wasn’t actually  punishable, he gets upset.

        He started Kindergarten this year.  We had our worries, like every parent whose child starts kindergarten.  There’s so much you realize you don’t know about your kid when this day approaches and you really start questioning your parenting abilities.

 

• Is he really potty trained?
• Does he know how to listen to people that aren’t yelling at him?
• Does he even know how to play with other kids?
• Does he know how to sit down without a tablet or T.V in front of him?
• Does he know how to talk?

     You’re likely to know these answers, we did, but you question them anyway.  You worry that your kid will be confused, throw his teacher the attitude he gives you, or somehow forget how to aim for the toilet.  We also had a few extra concerns like his impulsive behavior, his brace, and his need for systematic routine but for the most part, we pretty much knew what to expect.

     What we didn’t consider was his non-disability.  I’ve been unsure what to call this, how to describe his situation, and how to bring awareness to the right people in his life.  It’s not very complicated yet somehow it is.  He has, but doesn’t have, cerebral palsy.  He has, but doesn’t have, a disability.  He has, but doesn’t have, special needs.  It’s like he got so close to my stroke that he was almost, but not quite, directly affected by it. There’s residual effects of an event that he didn’t even have.  There’s no solid evidence that he survived a stroke in utero or a pediatric stroke, but there’s no evidence that he didn’t have one either.  His scans are relatively clean except for the PVL (<— I just found this site.  I don’t know how old it is but I’ve never seen it, I don’t think, and it has information I was never told nor learned from other sites. Now I’m kind of confused about it).  But, they did the scans too long after any such event would have happened; it’s impossible to tell if one did occur.

     We do everything we can to make sure JJ feels “normal” which isn’t difficult for a few reasons.  Number one reason: you don’t treat someone who isn’t disabled as if they are disabled.  Secondly, I also wear a brace so it’s easier for him to not recognize this as uncommon leg and footwear. Lastly, assistive devices don’t mean you’re disabled and they certainly don’t make you disabled.  We told Skas to be thoughtful of his brother’s affected side when playing with him but we don’t teach him to treat him special.  If JJ loses to him in any way, we tell JJ to try harder, we don’t blame his leg, his balance, or the extra tone throughout his right side.

     I guess we all simply adjusted in a welcoming manner.  Because of this, it can sometimes be a bit of a surprise when some brings up his “disability.”  The most recent inquiry was by the school the day we enrolled him.  The principal remembered him from last year when Skas was late one day and Kasper explained it was because JJ was having difficulty with something related to his brace.  I didn’t know how to answer the What exactly is his condition question.

What is his condition?

   I have no idea!  I tried explaining PVL first but her expression told me to stop.  I then told her it’s like a combo of CP, ADHD, and autism.  Her expression went blank on a level near complete conscious desertion.  So I said: he’s impulsive, easily distracted, temperamental and has right sided weakness.  It was too many negatives according to her facial response. I blurted (in my, “oh God here’s the anxiety proving I just f*cked up,” voice), “He wears a brace, is left handed and gets cranky easily.  Other than that he’s a super smart kid.”  And he is remarkably smart.  For instance, he’s been teaching himself how to read since last year and he’s really good at it.  His school’s play a huge role in that, of course, but it’s the way he picks up on it and how he distributes that information to expand his knowledge.  I can’t explain it any other way than that.  This does make it more frustrating, however, when his homework is to trace letters and he tries coloring in the letter lines instead of tracing them.  Like; you understand so much, kid, why are you being so thick skulled on this?

     At the end of the first week, it was suggested we consider getting him excused from gym and other physical activities due to his “physical hindrances.”  Whoa, whoa-ho-ho……

        Apparently, if your kid has “trouble keeping up with other kids” and your kid also wears a leg brace, that means you shouldn’t let him participate in P.E, with other kids, being physically active, and not looking at his affected leg as a disadvantage.  They want us to put our child on the sidelines, separate from his class, as an outsider.  They say it’s best for him because he falls a lot and he’s not as quick because of it.  I’m sorry but unless he’s getting more than bruises on his legs, he will not be sitting out on anything  because of his leg or brace.  I refuse, I  refuse, to sideline my kid because he’s not “quick enough” or “falls a lot.”  And why are they confused about the purpose of his brace?  They talk like the brace itself is the problem.  They don’t understand that it helps him keep up as much as he can, even if it’s not parallel to the rest of his class.

     There has to be a word besides disability to describe what this is.  He is not disabled, he can participate.  Only through participation will he, and his classmates, learn just how non-different he is.  I feel like making him sit out P.E would be equal to going to his class and telling his peers to treat my son like he’s “special” and on a different playground from them when he’s not.  He can climb a jungle gym, climb the stairs to a slide, and run and jump.  Maybe he won’t be successful at jump rope, but if he’s warming a bench while other kids are learning, and falling, and getting back up to try again, he will learn everything I don’t want him to learn and nothing he should.

     I realize his P.E class isn’t therapy but learning limitations is a part of life even without disability.  If he does learn he is too limited to do something with the other kids, then he needs to come to terms with that instead of hiding from it behind a doctors note.  He needs to learn to do what he can, learning to be as physical as possible regardless of limitations and his gym teacher needs to accommodate that rather than the limitation itself.

     If JJ was truly being hurt by working to participate with his class in gym or at recess then yes,  I would absolutely get him excused from them.  I feel, however, that looking at his brace after a couple falls and saying “you should excuse him from participating” is more damaging than failing to overcome a limitation.  What does this teach a child?  I am not known to be a fighter, I’ve quit and avoided many challenges throughout my life and that’s not brought me much positive results.  I have to teach my kids to do better than that; that success isn’t dependent on whether you win, but how hard you fought for the prize.  The acceptance of failure is the path to success; telling my kid to avoid challenges that will likely bring awareness to his physical restrictions is like tattooing a huge “Don’t even bother trying” motto to the inside of his skull so he never forgets not to try.

     I’d rather encourage my kid to run as if he’s not the only kid in class wearing a brace than pointing out to everyone it’s presence by using it as an excuse for him to sit out P.E.  I just don’t understand why a school would suggest I allow them to treat him as if he’s disabled when he’s not.  Maybe he does have a disability, but he’s not disabled; and I wish his school, and others, could learn this.

The important thing now is to ensure my child is not being treated differently

     I have to be the voice he needs to provide him with the ability to remain strong throughout these challenges which apparently include teachers trying to avoid facing his disability by discouraging interaction with it.

5 Years of Shields Down

     Earlier this week we celebrated JJ’s 5th birthday.  As I was typing out the annual “I’m so proud to be your mom and it all started here” Facebook birthday post, I realized how not-so-difficult my pregnancy was.  It was rough, absolutely, and he was at risk during most of the pregnancy but was he in any real danger?  Not really.  Did I lose any hope for that pregnancy? No.

    Despite the stroke, brain surgery / procedures, and relearning how to walk and dress, I really enjoyed my pregnancy; even though I was an emotional wreck, grieving, scared out of my mind and just overall unsure about everything. I didn’t know how strong I was or what I was capable of as a mother or person.  My character is actually pretty weak.  I’m a slacker and I’ve always lacked foresight. It’s really quite astounding that I’m here and functioning, given what was expected of me and how many of those expectations I’ve actually met.

     I met a woman once, a nurse who worked in triage.  I was there for a blinding migraine.  She asked about my affected side and brace.  Usually, when I quickly toss out that I had a stroke, the conversation goes one of two ways: they fall quiet and contemplate how to proceed, or they start asking questions right away.  I don’t expect anyone to tell me they had one too.  I also don’t expect to feel patronized by a nurse who walked out of her hospital room after a short period of time post-stroke.  We all recover at our own rates and the reason/s can be complicated when broken down into its many groups but it all boils down to one point:

No two injuries are the same.

     

     I believe I’ve said it before but just in case, I’ll say it again.  Recovering from stroke is a lot like being pregnant.  Going through the initial recovery process while pregnant magnifies the experience of both.  When a woman is pregnant, her brain is altered because of hormonal changes.  A stroke changes the chemical makeup of your brain (any brain injury does).  The emotional rollercoaster for each is unavoidable even if you’re fortunate enough to get put in a short line on the kiddie ride.

     For some, pregnancy/stroke recovery is a horrifying and dizzying experience; you just want off this ride but you’re stuck screaming for mom in terror the entire time.  

     And it doesn’t really matter who’s on the ride with you because you’re all experiencing it differently even if it seems similar on the outside.  Everyone has their own seat.  Everyone has a different view, a different vibration of the rails, and a different personality; each providing for a different attitude on this crazy ride.

     What does 5 years mean?

     So, 5 years ago I honestly thought I was handling my stroke recovery pretty well. I thought I had my “grieving period” while in inpat rehab.  I cried for days.  When my counsellor told me I was experiencing grief I felt like the center piece of my small puzzle was found. It made sense.  I felt so much loss but was surprisingly unaware of the emotion this loss is attached to.

   I did everything doctors told me to from therapy at home every night to not taking up cigarettes again.  I had two or three emotional breakdowns but I was moving towards independence every day.  I took showers alone, dressed myself most days , and eventually gained enough stable balance to lower myself onto a toilet.

     I had JJ mostly naturally.  By mostly naturally I mean: I had a lot of drugs before letting a baby wiggle himself through the birth canal.  I was not allowed to push because my brain injury was too fresh.  As a result I had what’s called a passive fetal descent, or delayed pushing.  I guess it’s a new thing that’s still being researched.  If you look it up, you’ll find a lot of “active vs. delayed” studies, brief highlights, and scholarly articles but not much on the actual process.  At least, not that I could ever find.

     My doctors battled over this decision and I was stuck in the middle.  My ob/gyn and my maternal fetal specialist couldn’t agree on how to handle my delivery.  I had no neurologist to provide insight so I resorted to good old-fashioned gut instinct.  I have no problems with c-sections when they’re necessary, it’s definitely not something to judge a mother for (I don’t understand the drama around this conversation at all), but I find them terrifying and am forever grateful that I have been fortunate enough to never experience one.  My gut said no to c-section and try this passive delivery thing.

So I did.

     And it was amazing.  There was a lot of drama in that room for a lot of reasons.  I don’t know how Kasper has forgiven me for what happened, I’m not sure he’s honest when he says he has either.  I’m still upset with MIL for being ignorantly selfish, yet again (which I’m sure is selfish of me to say), and I’ll forever harbor a bit of spite for everything that mom and Stilla pushed me to do.  When a woman is in the delivery room, she is not supposed to be the last person considered and neither is the father of the soon-to-be-born baby and yet that’s exactly what happened.

     Without my husband at my side, I gave birth in the most spectacular way.  I was full of fear and excitement, anger and joy.  I was a curious spectator at my own sons birth.  Words cannot express everything I felt as I sat with my legs up and apart, my eyes glued to the mirror in front of me with my eyes on my son’s crowning head as a nurse waited anxiously and nervously for him to make his way calmly into her hands.  I laughed uncontrollably at my nurse who kept screaming for the doctor to come.  The other nurses laughed at my laughter.  The harder I laughed, the further JJ moved out of me.  We made remarks on the queerness of it all just as el Jefe rounded the corner.  We all laughed at him (he was so stupidly late) and JJ plopped into his hands with laughter all around him, the loudest coming from me.

    I soon discovered that I was terribly limited as a mother.  This realization that I will never be the mommy I suddenly wanted to be struck me so intensely that…it’s a good thing I was still in shock from having a stroke in the first place.  I always had the expected concerns:  Will I be able to dress him, bathe him, change his diapers? What will feedings be like? But they never had weight to them before.

     I was only able to breastfeed two times and the nurse took him during the second feeding because I started to cry.   It was terrible.  I did not have a good nursing staff.  I felt belittled and constantly pushed around.  I had no one to teach me how to do this with not only one hand but with my other arm not cooperating.  The nurse kept putting her hands in my way.  I wasn’t bothered by her getting up on my boob but with the fact she wouldn’t let me try to get comfortable first.  It made me really apprehensive and tense which made everyone’s job, including JJ’s, unnecessarily difficult.

     I kept him in my room the first night until 3 or 4 a.m. with supervision.  I couldn’t let him go.  The night nurse sat with me as I held my little guy not realizing all of the struggles about to face me. It amazes me now how ignorant I was to all of it.

     Shock is an amazing thing.  It’s like a force field that repels every unwanted anything.  You see it coming towards you, you see people react to the way you deflect it without flinching as if you’re some magician and yet none of it registers until long afterwards.  I didn’t get why nurses “commended” me for being “strong” because I didn’t have a true understanding of the situation I was in.  My disability evaluations were odd to me at the time, especially the mental evaluation.  I attempted to shrug off the questions of anxiety and depression with quick explanations of the pregnancy.  I told them directly that I can’t tell what is stroke related and what isn’t.

I just know I have to do what doctors tell me because it’s best for my baby.

     And that’s how I made it through my pregnancy but it was merely shock that allowed me to survive it all, I think.   I didn’t have the option to give into fear more than I already had…until I had the baby.

And that’s what 5 years means

     I tried my best to be involved, to not let the stroke and resulting disabilities get at me but the harder I tried the worse everything got for me.  Having JJ meant I was now alone.  My support was gone, my shield was gone, my well of strength hadn’t just run dry but someone sealed over it.  I needed a new source.  It’s 5 years later and I still haven’t found a source as powerful as my pregnancy.  Everything I pinned on the pregnancy was just another aspect of the stroke I was protecting myself from.  I loved my pregnancy but everything around it was so absolutely miserable that I created a thick veil to shield us from it all. It didn’t register to anyone that the “strength” everyone saw was nothing but a mindless motion forward.

     Five years mean 5 years of a lifted veil, a worn down shield and exposed excuses.  It’s 5 years of living with the choice to accept what I cannot be and work hard every day to be everything I can be.  I fail a lot in many ways but I’m still here

And I made it to my baby’s fifth birthday, a day I  once feared he would spend without me.

To read a slightly more detailed post on my passive delivery experience, click here

Can’t Handle the G

     My stroke led to me being “partially” paralyzed on the left side of my body– to keep it simple.  So, I have little feeling on that side; most touch is a dull thud or a weird, almost burning, sensation if I feel anything at all.  So…

It’s had an effect on my sex life

     I’m a totally normal person.  Or, I was….I thought I was?  Now that I’m in my thirties, been with the same guy for 10 years, two kids have slid through my vagina, and have adult-ed for some time now, I’m learning that maybe I wasn’t so normal…or was I?

     It’s hard to tell because every woman is different; when you read articles, listen to people on talk shows or whatever, it’s hard to know where on the scale of normalcy your little slider is.  I was molested and raped from ages 11-14 by my stepdad, Krank Ficken.  It was nonviolent but it was awful and it left a dark cloud around me.  Sex was not something I felt was for me.  I’ve always enjoyed it, I’ve had many partners, but there was always a part of me locked off from it.  It’s difficult to explain when it’s something I’m still trying to figure out and get over.

     I always thought the so-called “G-spot” was a complete lie.  I never felt anything down there, in there, or around there that made me melt into my curled toes the instant it was tickled.  I thought I was abnormal simply because this “myth” existed and older women swore it’s a thing that is true.  But is it?

     

     Don’t get me wrong, I’ve had plenty of orgasms.   I had my stroke during an orgasm.  I think I know my body pretty well but well enough to find my G-spot?  Don’t think I haven’t gone hunting, I have, and so have others.  It was deemed elusive or just a fake concept designed by “them” to make me feel so terrible about myself that I had to sleep with every guy nice to me to prove I had a true sexual appetite.   It’s bullshit, the way we are made to feel shameful.  Like not finding your g-spot is a negative because all porn stars seem to have one very easy to locate.  But somewhere between 70-80% of women never truly experience vaginal orgasm so let’s be honest and real, there’s only 20-30% of women able to orgasm vaginally?

Is this a big deal?

     This is all personal opinion and personal account so IMHO, it’s not a big deal.  I honestly don’t think guys believe they could find the G-spot without Indiana Jones’ fedora and whip so I don’t think they are disappointed when they stick it in and you don’t instantly orgasm.  But that’s alright because sex isn’t just about your partner anyway.  We want them satisfied but sex is also to satisfy yourself.  I lived in a world where g-spots are myth and legend. I took matters into my own hands when sex by choice felt tragically disappointing.  I wanted to orgasm, I knew how to make myself orgasm but none of my partners apparently knew how to help.  Roughly 30% of women never reach orgasm during sex even with clitoral stimulation.  I take this to mean that the average woman orgasms during sex by double clicking their own mouse.

     I never had a guy stop me to prove their masculinity by pounding me until I melted into a puddle of satisfied woman.  In fact, every partner I’ve ever had seemed to genuinely enjoy having me pleasure myself during sex with them.  It probably takes the pressure off for all I know.

I think I found my G-spot

     An unfortunate fact is that no one actually knows if the G-spot is a place, an item (like a collection of nerves), or if it exists at all.  What if it’s a state of mind?  What if it’s psychosomatic?  What if only some women have it?  What if it’s a collection of all or some of these theories?  Will we ever know?  I have no idea but love me tender because there’s a spot inside of me that when touched I completely lose my mind.

     I haven’t looked up what the average woman experiences when they “find” their g-spots.  I’m afraid I’ll end up stuck in a loop of endless squirting videos somehow. I’m not sure if what I feel is actually my g-spot or just a really agonizingly, pleasurable area.  Whatever it is, it wasn’t there pre-stroke.  I have a couple theories as to why:

• Age: they say women have stronger orgasms later in life but am I that far in life already??
• I had a couple mental breaks after the stroke:  Apparently I buried more than a few memories of Krank Ficken and found them after the stroke.  Kasper let me dump it all on him along with heavy tears and deep sobs.  Maybe that helped me “unlock” an important part of myself
• The stroke itself: I lost sensations, I gained sensations, and some sensations are so twisted up they feel good in a painful way

    I just can’t handle it

    In 10 years we’ve had very memorable, pleasurable experiences but now, 5.5 years post-stroke, there’s a new place inside me towards the front, kind of up behind my clitoris that I literally cannot handle when disturbed.  I don’t think I can orgasm vaginally because the intensity is so…intense that I feel like I’m going to wiggle right out of my body and end up on the verge of a panic attack.  Is this the g-spot? And would I have found it without my stroke and resulting disabilities?  That’s a really terrible thought.  But if it’s true what does it mean? What does it mean for other women? And, what does it prove?

     This location is described in many articles as the place where all the action happens when it comes to the so-called g-spot.  If this is it, why can’t I handle it like other women? Sometimes he just brushes against it and I’m breathless and it’s like my head is on a plane different from the rest of my body yet there’s still a cozy place in the center where my brain and body are fighting against the racing beat of my heart.  It’s all very overwhelming and I seriously wish I could harness this power that is possibly my g-spot so I could ride that bastard into a blazing sunset of pleasure and gratification.

The Vacation Happened

Anxiety aside, it wasn’t that bad

   All things considered, it was a pretty good trip.  We decided to go cheap and stay a night in Brownsville and visit the zoo; then, do something local when we came home. Houston is farther, more expensive, and JJ is too young to really enjoy Houston so hopefully it’s an option next year.

The Motel and Pool

   We only stayed overnight so the boys could experience a night in a motel and a pool.  I had a lot of anxiety about this because of my disability.  Accommodations can always be made but I prefer not to feel like a burden with numerous special requests.  I worried about everything from the floor covering of the room to the tub design and even adjusted my hair washing schedule (I have a sensitive scalp) to limit standing risks in the shower.  The first thing I noticed was the slippery floor of the room followed by the weirdly tiny soaps.  I worked and stayed in many forms of overnight locations and have never seen soap this small.  It looked they decided to make motel soaps in the shape of already used soap bars.  This was supposed to work for 4 people?  And why only 3 towels? Good thing we came prepared.

   Three stories that I could not look at.  Our room was on the first floor near the stairs which was good because I could barely lift my eyes enough to see the second floor, never mind looking up to the third! I felt frozen from my lower back to the base of my skull; like, if I tried to raise my chin so my eyes could see above me, I’d break every bone after falling over or, my knees would buckle and I’d crumble into a whimpering puddle of tears and broken dreams.  It’s impossible to move with this unbalanced fear so I kept my eyes down when outside.

   I didn’t go in the pool or the spa.  The first night I didn’t mind because there was a family of about 10 in the pool.  My left body locked up just thinking about going near the water in front of them.  What if I was too afraid and cried?  What if I made it in but was too afraid to climb out? I just couldn’t do it in front of them.  My anxiety got me and I let it but it gave Kasper the time he needed to get JJ used to being in a pool for the first time.

   The next morning I took a super quick shower with my travel sized body wash that smelt pretty gross for a Dove product and my mini shower puff.  Kasper helped me in and out of the tub pretty easily and I was able to stand the whole time without calling for assistance.  Afterwards, we hit the pool for the boys to get real splash time and I started to feel a bit of my anxiety develop into an unfortunate realization.  I always say that I’m amazed at how easily I forget the extent of my stroke’s destruction, this day further proved to me that “winging it” isn’t as easy as it sounds.

   Skas begged me to dip a toe in the water just to feel how cold it was.  It had already been a while and I was sweating profusely.  I figured if I could get close to the pool, maybe Kasper could help me sit on the edge and participate in their pool time this way.  I was fine away from the pool.  Aside from my noticeable limp and slightly stiff arm, I was fine walking around; but, the second I broke the 5 foot clearance of the pool, my sweat became thick with fear and I felt as though I grew an alarming two feet taller in seconds.  I had little balance as my vision entered a blurred tunnel and the sun reflecting off the water attempted to blind me.  My foot turned onto its outer edge, my big toe tried to curl under itself and I couldn’t move.  Skas stared up at me with disappointment as I told him I couldn’t do it.

   I somehow made my way to the pillar supporting the cover over the spa and did my best to catch my breath.  I realized, as I shoved down tears and held my chin out, that I am far from recovered.  There are so many areas in which I am still limited both physically and mentally.  It’s emotionally straining but I managed to find my lounge chair without leaking a single drop of my burden onto my cheek.

The Zoo

   

   I love the heat but this was borderline torture and I almost broke, telling the Sun anything and everything it wanted to know.  It was brutal.  But it was nice.  I’m not a huge supporter of zoos.  There’s a lot I don’t understand and don’t know about all that is involved with zoos but I do feel shame when I pay to view wild animals captured and caged just for my entertainment.  That said, it was a nice family trip to the zoo, showing my kids animals they’re not likely to see besides in another zoo, and teaching and learning together.  My boys were startlingly well-behaved (for being kids out-of-town, in public, at a zoo) and listened maybe 75-80% of the time (seriously impressive for them).

   Kasper wanted me to take my cane but I think he forgets how much of a burden that thing cane be.  It gives me shoulder pain when not on smooth surfaces for long periods of time, it’s cumbersome as it occupies my one working hand, and often falls when I lean or prop it for any reason.  Not to mention it actually slows me down now.  I can keep pace holding Kasper’s hand or arm, or by using a railing if one’s available; which, in this case, there was.

   The two biggest problems were the heat and the slopes. There were a few steep areas on the zoo’s pathway but even though it slowed me down with mild anxiety, it actually felt good on my ankle going up and down those slopes.  2/3 of the way through, the boys started looking terrible.  Sweat soaked their hair and their faces were red despite the constant stops for water at every opportunity.  Near the end of the tour it started to turn white around their mouths and eyes.  I was worried but luckily that last stretch had no exhibits we were interested in so we hurried out, exiting through the gift shop where I got a new elephant for the collection I haven’t added to in over a decade.

On the Road and the Results

   I had a few worries about going on my first “long” road trip with my disability.  It’s roughly 5 or 6 hours both ways but in between I would be using up a good portion of my energy as well as my hip’s strength.  Sitting for two hours is a strain on my hip in itself, how will I handle the long drive and all of the hip use?  I had no idea but was up to that challenge.  I think what happened was actually by accident.  A few months ago, before I knew Kasper had a set date for this trip, I had started working out again due to shame and misery among other things.  Every day for an hour I focus on stretching my arm, hip, and knee; and, I do strength training for my hip and leg.  I think that really helped minimize the stress this trip could have caused for/on my hip and helped me build endurance for great walking distance.

      I think working out helped with my ability to hover over the many frightfully nasty public restrooms I had to use, too.  I had on my “road trip appetite” to limit bathroom use but you still need fluids… It was difficult but I learned it was best to gather all of my toilet paper before assuming hover pose in order to maintain decent balance throughout. It was an exciting discovery.

   About a year ago I began practicing standing in the shower but only when I wash my hair.  It was meant to get used to standing in the tub, such a small space, without getting vertigo.  It really helped with this trip even though I didn’t wash my hair and my shower lasted all of ten minutes at most. I was relieved to learn I won’t need to lug shower chairs around with me.

   Our first family trip as 4 wasn’t anything grand but I learned a lot about my abilities with my disability because of it.  I went out of my way to bury my anxiety, shove aside my worries, and put on a mask that hid the fear that bubbled just beneath my skin.  I want my family to be somewhat normal, to have memories, to have something to laugh over many years down the road.  No one saw me near tears as I hobbled away from the pool and I did not regret telling the man at the zoo’s gate that I didn’t need the wheelchair he repeatedly tried to get me in.  I did not become crippled by pain and I didn’t bombard anyone with numerous requests.  I remained mostly independent, in control, and motivated to enjoy this time with my family.

In my next post, I describe the toll the burying, shoving, pushing and hiding my true mental and emotional state took.

An Unempathetically Stigmatized Disabled Person

    My disabilities are pretty visible. My stroke took away the use of my left side.  I lean, I have a slanted shoulder, I have an elbow that kind of juts out a bit, a knee that locks no matter how hard I try to keep a slight bend, and a very obvious limp, among other things.  So, you can probably understand my confusion and anger when people give me this feeling like they suspect I am either lying or way exaggerating the many ways my stroke affected me.

Migraines

   I have chronic acute migraines.  I have warning signs that let me know when to take medicine so that I can function even if it’s not at full capacity.  Sometimes my meds don’t work and I lay in bed for most of the day.  I do not need complete darkness or silence though both help greatly.  I don’t always throw up but I’ve been known to squish a few chunks down the shower drain with my toe after thinking a shower could help the nausea and sweats.  Sometimes my meds work to a point where I can check my Facebook if I feel up to it.  I might even play some Candy Crush, dammit.  Not every migraine is the same for everyone.  Some people are completely debilitated by their migraines; just because the meds I take don’t work for you (or your aunt) doesn’t mean my migraines can’t possibly be that bad.  So yeah, sometimes I am able to post on Facebook; but only because my meds helped keep the migraine from radiating throughout the rest of my head, creating other symptoms, like: nausea, auditory hallucinations, sweats and chills, and more. It also helps that you can post to Facebook from bed.

I’m not that one person you know

   Strokes  and disabilities can happen to anyone at any age.  They are caused by so many things, and sometimes seemingly nothing, that it’s difficult to bring around true awareness.  People need awareness simplified and when someone tries, there’s a lot of necessary information that gets left out.  Because of this, people don’t understand the diversity of stroke/disability in itself.  We think of our grandma’s, drug addicts, and people already at increased risk (obesity, heart condition, or some other medical condition) that can lead to stroke/disability.  People don’t think about the rest of us because the rest of us are hard to look at and understand.

   I’ve been compared to people’s grandma’s, people like Sharon Stone, and other random people I don’t know who have situations different from mine.  I am not your grandma.  I’m sorry; but, I don’t care she survived 10 strokes and still worked into her eighties.  I really don’t care beyond congratulating her survival. Not all strokes are physically or mentally devastating.  Some survivors just walk away as if nothing happened.  Some are an unfortunate mix.  I feel I am more 80/20 like a cheap tube of “beef.” Some people get locked in syndrome; some have weakness post stroke while others have severe weakness.  This means that just because your father-in-law has weakness and can still hold a baby with both arms doesn’t mean my severe weakness and spasticity could ever allow it.  Gabby Giffords riding a bike doesn’t mean I’ll be able to hop on a Huffy and take off merrily downhill.

Juan Jose Mendez

   So while I might be similar to some person you know that went through  something like I did or am going through, I am not that person nor do we have the same situation.  I wish people would stop comparing me to their old mother’s even older best friend because her stroke wasn’t in the same area as mine, didn’t have the same cause and obviously didn’t have the same effect.  I also am not like the lady with no arms that fed her baby with her elbow nubs.  I cannot tell you how deep that simple little comment cut while tears were still wet on my cheeks from struggling to learn to feed my newborn with one arm.  You learn but not without frustration.

I see your eyes

Chances are, this is all in my head.  I’m a skeptic and a cynic when it comes to listening to people talk.  My first reaction is almost always:

Omg, for real? You’re full of shit.

 

   There’s a split second where I believe everything you say and then I instantly doubt you.  I think this is what makes me feel people doubt me so much; like a projection of my own supposed response.

   I live in the south and I’m somewhat politically aware and reasonably up-to-date on current events.  I have this unfortunate habit of scrolling through comments of articles I’ve finished reading and let me tell you, that is a huge mistake.  And yet, I can’t stop myself from clicking that cursed “read comments” link at the bottom.

I’m pretty sure this is why I feel there’s a stigma tattooed on my back in the shape of a bullseye whenever people look at me a certain way or I hear it in the way they respond to the symptoms of issues that bother me in front of them or if it comes up in conversation.  I hear my in-laws, die hard conservatives, talk about people on the very same programs I’m on as if they are useless individuals.  I read these comments on threads throughout the internet and they are so much worse than my in laws.

   I wonder how disabled a person has to be in order for people to stop judging them.  My biggest disability is easy to see because it causes a limp.  But what about when I’m not moving?  What about on my “clear” days?  What about good weather days? There are other factors that add to my disabilities and there are elements that alter the effect of these factors.  These are the pieces, the gears of my disabilities, that people don’t see.

   I worry that some people see me and their first thought is why I’m not working.  Even with my physical disabilities it can be difficult to tell I am “as disabled” as I really am.  A property maintenance man that is familiar with my household noticed my limp after a couple years of in and outs of my apartment.  He thought I injured my foot until I explained it’s permanent because I’m “partially paralyzed on the left side.”  This is the easiest way to explain my condition; people understand what partially means a lot more than hemiplegia or hemiparesis.  A few days later he saw Kasper hold my hand as I stepped cautiously down off the curb then helped me into the car.  The f*cker nodded and while this might mean something else, to me, it meant he finally “approved” my disability because he never noticed until shortly before.

   The thing is, I go through great measures to appear as though my disabilities are not as much a hindrance as they really are.  It’s a constant behavior of mine; a habit, a reflex.  It’s tiring but I don’t like to be babied, I don’t like people touching my chair while I’m in it and I really, really hate it when people use their baby voice to talk to me just because I have difficulty moving and they know it’s the result of a brain injury. I prefer to sit while holding my affected hand  with my right foot pinning my affected leg close to the seat for two reasons: if I get nervous or experience a spasm I can use my non affected side to keep them in check; and, it’s easier to hide my hip pain while sitting.  This means I try to sit as soon as possible after greeting or being greeted.  This means with every room I enter I immediately examine the layout and decide if it’s possible to sit out of the way or better to find a place to lean unnoticed yet comfortably.  I do my best to avoid walking in a room of sitting people (vertigo; and, anxiety).

  I feel like this saves me the grief of having others face my disabilities thus saving me from having to endure that look of misguided sympathy.  I feel this also has the drawback of causing people to misunderstand the extent of my disabilities altogether.  You might see me struggling to climb a curb with Kasper holding my hand then find me cooking a full dinner later that same day.  What you don’t see is the 20 minute nap after the fifteen minute hip massage that followed the 45 minutes of stretching and exercising my leg in between.  I might appear to follow a conversation but what you don’t see is my heart racing in my chest as I dance along the border of a panic attack because I’m scared I’ll get lost in your words and look stupid.  I might sound like I know what I’m talking about but what you don’t know is that I spent far too much time reading up on the one topic I knew we had in common in preparation to converse with you because I have difficulty retaining nonessential information for more than a day or two.

   Disabilities are as unique as fingerprints.  Empathy doesn’t require understanding anything more than knowing you don’t want to be where that person is in their life.  You don’t have to have “been there,” you don’t need to know someone that’s “been there” and you definitely don’t need to make any sort of false comparison’s in a sad attempt to either comfort or motivate a person.

   Yes, I’m disabled.  Yes some of my disabilities are obvious and some not; and yes, there are invisible factors to my visible disabilities that can have negative or positive impacts on me.  The fact I feel constantly compelled to validate all of this is the most sickening part because of my need to reaffirm within myself that their judgment is wrong and uncalled for.

How is it that I feel guilty for things out of my control?

 

The Awakened Nipple

    I’ve tried to come up with a “classy” way to talk about sex with a disability and I don’t think I can do it.  I don’t want to discuss sex now but I did experience something last night that I thought was worth posting about; mainly because I think my disability is fascinating.

   There are a lot of medical terms I could throw at you to describe what I go through every day but I’m trying my best to simplify.  To keep it brief, brain damage caused by stroke often leads to conditions that can have a variety of effects on the way the brain reads and translates physical sensations. A couple unavoidable terms are: Paresthesia and central pain syndrome (CPS). CPS is a condition where you feel pain throughout your body.  It is nerve damage usually caused by brain or spinal injury.  It can be disabling for some people as the pain can be constant and intense.

  Then there’s paresthesia and hemiparesthesia.  Paresthesia is when neurons incorrectly read stimuli to your skin, possibly resulting in pain and discomfort.  Most people have experienced this.  Just think of your leg falling asleep.  When a body part falls asleep, it’s different every time, right? Sometimes you don’t realize it’s asleep until you stand and feel like someone replaced your leg with a stick; you don’t feel anything except that your weight is on something unstable. Sometimes you feel it right away because there are tingles that feel like static.

    The difference between CPS and paresthesia is one can occur without provocation.  What I’ve learned is that, like each time your leg falls asleep the sensation is different, the same can apply to your affected side. Four years with this has also taught me that it can come in degrees from mild to severe and that it can be splotchy.  I don’t have CPS because I only feel pain that I can usually explain (like joint pain related to pressure change).    My left body is, however, without correct feeling and often misreads sensations from external stimuli.

  What does this have to do with sex?  It has a lot and a little to do with sex.  I’m not one for pain during sex.  I don’t mind a spanking or some hair pulling when it fits but I’m not into hot wax or whips.  When I first found out I was paralyzed on the left side I had no feeling or movement whatsoever.  Within a week or two I started to feel again and it was near unbearably painful any time my skin made contact with anything.  I often described it as feeling like Indian burn (not very PC, sorry) with hands wrapped in high-grade sandpaper at the lightest touch.

   I learned quickly that I don’t feel anything at room temperature, I have a slow register to heat and anything the slightest bit cooler than room temperature is my enemy. A lot of this has gotten better which is common; they call it chronic and not permanent for a reason.  But there was a long adjustment period.  Kasper was afraid to hurt me by touching me so sex was awkward; he was also worried I’d stroke out again.  To this day, anytime he rubs my back he only rubs my right side.  I told him to rub it all or don’t bother but what I haven’t told him is that the “pain” his touch causes is pleasurable.  It kind of feels like his fingertips have a thousand tiny sharp points on them.  I get shivers thinking of it now.  When he does touch my left back it sends a ripple of tingles radiating throughout all of my left backside.  How could I not enjoy that?  I think it registers as painful because it’s like jolting your nerve endings awake from a deep slumber; they go back to sleep the moment the touch has passed.

  Sometimes my left boob hurts for no reason.  It feels heavier than my right boob.  Sometimes my left nipple feels like someone is holding an ice-cube to it while I’m sitting there watching TV or trying to cook dinner.  It doesn’t feel very good.  Sometimes I have to hold my boob to lighten the load; sometimes I have to massage my nipple which can be really awkward in public (pregnant women/mothers, you know what I mean, eh?).  I have no idea if these things are normal for hemiparetic people or non-pregnant women or both but they are incredibly irritating.  It’s only my left boob so I assume it’s related to my disability, explaining why it’s suddenly intensely painful.

  Like I said, I’m not into painful sex but I don’t stop a party from going where the passion brings it unless I’m turned off.  I don’t know about other women, but I’ve never found anyone playing with my nipples enjoyable.  I don’t hate it, I just get nothing out of it.  I think Kasper picked up on this at some point during our ten years together because he fondles my boobs for his enjoyment and I don’t mind.  But last night, as I sat on the couch, he reached over and grabbed my left boob knowing I wouldn’t feel it then started tweaking my nipple just for fun, knowing I wouldn’t feel it and…I felt it.  Like I said, I’ve never found anything exciting about anyone messing with my boob buttons before and then BAM all of a sudden I was like

I can feel all the touching!

 After I convinced him to help me experiment (it wasn’t difficult), I learned I can only feel him touch my nipple.  Not my under boob, not my side boob, not even the part closest to midline where I start feeling my right body.  Naturally, we had sex.  It was only logical to take this experiment to the next level.  And I discovered that pinching my nipple during sex is absolutely amazing.  But only the left one, the right one is a boring old lady wishing you’d keep the noise down.

I am once again reminded that the body and the power that controls it are absolutely mind boggling and amazing.