Communication: A Birthday Gift??

   I like to say my stroke closed the communication gap in my relationship with Kasper, which it did, but definitely not as much as I like to pretend it did.

    Kasper and I have been together somewhere around 10 years.  We fight a lot; but we know each other so well that we avoid certain topics, shuffle around words to keep conversations from growing tense, and hide our true emotions, thoughts and feelings because we know the other will not be receptive or will respond in a way we know will make us feel worse.  It’s an unhealthy relationship but somehow it’s strong.  I think maybe we are both so stubborn it’s all that’s holding us together; it just seems strong.

     I love my husband and I know he loves me but there is a lack of understanding on his part and a lack of cooperation on mine. I’m so wary of being a burden to him that I am heavier on his neck than is necessary.  I push hard to be independent but I hide from him what it takes.  I have a lot to “complain” about but to me it’s not complaining, it’s expressing what I’m experiencing.  He does everything but roll his eyes when I say my head feels foggy or my vision wobbly.  He lets me lay down when I need to, doesn’t complain when my energy is depleted for no reason and he has to cook and clean as well as make sure the kids are bathed because at those times I feel so unwell I can’t hide it or work through it.  But what about when it’s less obvious?

Or what about when I hide it because he made big plans and I just want to help them go smoothly?

     Kasper planned out a small overnight vacation last month and I had concerns that made my anxiety rise more than just a little.  The trip itself went pretty well.  I was able to keep my anxiety mostly in check.  I had mild, extremely mild, discomfort in my head but I kept pushing onward and kept myself fully hydrated despite my apprehension to use public restrooms (ew).  I just wanted to help make this trip special with Kasper for the boys and I was ready to do whatever it took as long as I could do it without hurting myself too greatly in the end.


    We planned to go to a local water park the day after we came home.  We wanted to go last summer but our budget gave us a big fat no.  We felt so bad for our kids because we kept promising and then summer was almost over which meant putting our resources into school shopping.  JJ was too young to care but Skas definitely noticed.  We decided this year Kasper would put aside refund money just for this water park and when math proved Houston to be too expensive, the water park definitely looked affordable.  But there was one little problem…me.

    I did not voice a single concern of mine that Kasper did not already point out as his own for our overnight trip.  I held it all inside.  I fought my anxiety 100% alone.  I fought my fear, my nausea, my low self-esteem, my lacking confidence and the fact my 33 birthday was approaching way too quickly, all on my own.  I think I did alright with that bottle bubbling and jiggling inside of me.  I didn’t go near the pool and kept my neck stiff to avoid looking up but I didn’t miss out on too much because of this.  So I don’t know the color of the motel’s roof and I never felt the water’s temperature, at least I got to see my kids have fun with their dad in the pool and took some fun pictures of them.  The worst part of waiting poolside?  I took a selfie but it was too bright for me to realize that I didn’t actually click the capture button.

drop foot
Didn’t get a poolside selfie but did catch a pic of my foot drop and AFO tan 

    I did better than expected on our trip considering all the stops, the many toilets I hovered precariously over, the various places I found myself alone, surrounded by strangers…

    The morning after we came home was my birthday.  It’s hard to explain turning 33.  From the age of about 24-27 you become aware of your dwindling youth.  From 28-32, you keep telling yourself you’re still young enough for that shirt, or to enjoy a pop song without looking like you’re trying too hard to not be old.  And then 33 is a week away and you realize, from here on forward, I’m officially an adult and this super bright, fun-ly mix-matched bikini might not be appropriate even without the stretch marks and disability.  And then it’s your birthday and that bikini is on your bed, laid out, and you’re trying to ignore the new silver chin hair you discovered only minutes before.

     As I sat on my bed in my pink bikini bottoms with my white top and it’s “fun” green polka dots twisted in my hand, I had the deepest anxiety attack I’ve ever felt.  I mostly experience these flighty little attacks. It starts in my chest; I feel tingly and hyper aware like every sense my body contains is on alert.  I can refocus my energy after a few minutes of panic to calm down and am usually left with a pounding heart and an underwhelming feeling of….almost like loss and dread mixed with fading adrenaline.  But this time it wasn’t like that.  My head overflowed with negativity, like voices swarming me with every bad thought I’ve ever had about myself; I just sat down and cried.  Many minutes passed before I released my first sob.  I wasn’t holding it back, there just wasn’t any room for noise before that.

   Every concern I kept bottled over the few weeks before our trip was now unavoidable despite having already returned from said trip and  I now had added concerns about the water park that ranged from which shorts do I wear to fearing the ground would be too slippery for me to ever trust my fickle balance.  What if the pools all had steps (which isn’t likely at a water park)?  What if I was stuck, in shorts, in the heat, moving from chair to chair, pool to pool, as I watched my family wait in long lines for slides? What if my left side froze continuously? What if I ran into someone I know???


     Needless to say, I ruined our one chance to go to the water park this summer.  I flipped and Kasper was completely clueless as to why.  We fought, he threatened to take the kids away (again), and I finally blurted out a shitload of things I’ve been keeping back.  Things like:

You spend so much time telling me how low I make you feel for not focusing all my mental energy on you yet you fail to notice my silence as I push through with my head down


You have no idea what it takes for me to get up and function every morning.  I cannot talk to you about the things I really feel inside because you tell me I’m overreacting, I’m paranoid, that it shouldn’t be a big deal, and you treat me like it’s the same ol’ same ol’ Kt bullshit.  But to me it’s real, it’s very real

…and so on and so forth.

     Because that’s how it really is.  He thinks my anxiety is just a fear of people noticing me.  Sure, that’s an issue.  My entire left body is a burden to me and people can see it so they stare out of wonder; and I’ve never liked people noticing or looking at me.  But there’s nothing I can do about that so on the level that allows me to function, I am learning to accept the unavoidable.

    I am very sad and I feel very ugly inside and out.  I feel useless, burdensome, condemned, cursed, and just all around…unnecessary.  It takes a lot of work to push these emotions aside or down (usually way, way down) every single day.  I cannot pretend that suicide is not a constant thought.  I’d never follow it through but the thought is there; it’s not a very tempting thought but it exists nonetheless.  I put Kasper before me despite the bitterness I feel inside.  He’s trying to go to school and I’m doing my best to be supportive but I don’t know how to help him.  The areas he’s having trouble navigating are the very same areas I had trouble with and was he there for me then, pre-stroke, as I cried because I just couldn’t figure it all out?  No; he wasn’t.  As I pore over the internet trying to find a way to help him, I shove this bitterness into a hole hoping to bury it forever.  It’s not relevant today what happened so many yesterdays ago even when my day turns into a rupturing abscess that once housed my emotions.  I have not felt that I have his support in the ways I actually need it in a very long time and I finally revealed the post-stroke level of this lacking support.

      As always, Kasper considered the things I told him.  And as always, he reminded me that every coin has two sides and I wasn’t flipping mine to see how deep in the shadows I have been keeping him.  How can he support me when I hide so much from him?  But how can I talk to him if he makes me feel so much shame and discomfort about the things I cannot control?  We don’t have these answers.  We’ll never get them on our own.  I’m not sure he’ll ever understand.  I think this would be an issue for us even without the stroke having added a thicker side to it.  Not supporting or helping me with my decision to go to school in the way he wants me to support him was only the last way he didn’t support me before the stroke.  There are other examples.

   I feel like, or maybe I hope, this last explosion of pent-up sentiments and mental anguish opened a new line of communication between us.  Maybe if I tell him when I truly feel apprehensive, anxious or downright depressed, he’ll have a fuller understanding of just how much this affects my everyday life.  I worry he’ll stop taking it seriously, if he ever takes it seriously, or may possibly take it too seriously.  And now my anxiety is making me double talk with doubt…

   So, how did you spend your 33 birthday, Kt?

      It was actually quite nice.  We went to the beach and  fully broke the Great White Barrier that was my skin.  The walk through the zoo only started the process, laying out on the Gulf  coast, hoping the seagulls kept their squirts away from me, gave the Texas sun plenty of time, room, and angles to finish wearing away that reflective seal.  With only the sounds of the waves and my family enjoying them hitting my ears, I forgot about my breakdown and that I’m definitely never going to be “beach body ready” no matter what bathing suit I’m wearing. This year, I’m much better at walking in the sand without assistance, too.

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