Kasper saw one of my “episodes” the other night. He’s seen me have full on panic attacks before. The kind where you actually feel the color slip coldly away from your skin as your entire body begins to shake and tingle; the room turns into a hollow chamber and your ankles turn to licorice.
He’s seen it happen out of nowhere and he’s seen it happen over the silliest things. I can’t predict or stop it even though I try hard to control my entire body through the process. There’s only so much you can do in those few seconds before that panic really grips you and you pass out or cry. One time it was like my entire body cried. I broke out in a miserably cold sweat atop hot skin and I did what I call the Julianne Moore cry.
The woman cries in damn near every movie she’s in. She’s so good at it. A brilliant actress. Anyway, it was a rough 5 or so minutes that felt like an hour of everything inside my body being brought to a boil then stirred to cool as quickly as possible. By the time the ambulance got to our house I was exhausted . We had no idea what was happening. Was it another stroke? A seizure? Kasper called 9-11 to be safe. It was just a really intense panic attack. All because I dropped a bowl and a piece of glass nicked my ankle. I don’t know what I thought was going to happen. There’s a vein down around there, maybe I thought I would bleed out? I just remember my husband laying me on the kitchen floor and trying to keep me from passing out. And then the paramedics were wrapping my foot and I felt stupid for having this reaction to a broken bowl.
I remember the first time I came home from rehab after my stroke. It had been about 4 or 5 weeks since it happened. I made it up two flights of stairs with Kasper supporting me, my mom one step behind us and my in-laws behind her. Everyone cheered me on and it helped get me to the top where I discovered my challenge did not end there. I now had to walk to the door. That walkway was slanted as it was pretty old. I felt too off-balance and combined with the vertigo I was experiencing being on the second floor, I could barely find the courage to turn towards the door. I froze up there.
After a few minutes of crying and people crowding me through the door, I had yet another break down. It’s amazing the way your mind works. How magnificently sensitive it truly is despite its immeasurable strength is remarkable and seemingly impossible to understand unless you go through something that changes the chemistry of it all. Four years later I’m still trying to figure it all out. I was so exhausted getting up the stairs that I sat down to rub my growing belly and catch my breath. I chose to sit in a rotating rocking chair. The movement made my motion sickness return. My head was freshly messed up and I had only had the stroke and two procedures (embos) at this point. The craniotomy had yet to occur. As far as I knew, my brain was still trying to absorb the bit of blood still left from the hemorrhage. I was very overwhelmed while I sat in that chair in my apartment that no longer felt like my home. Everything felt foreign, everything smelled wrong. Nothing felt like me.
I’m not sure what brought me to the hall. Maybe I had to pee or I was curious about The Spot and wanted to see it the same way car wrecks have us rubbernecking even though we’re pretty sure we don’t actually want to see a bloody, charred or mangled body. Reaching that spot in the hall where I lay dying while my precious 3 year-old son wiped snot-like ooze from my nose broke me. I couldn’t stand up. I couldn’t breathe. I couldn’t communicate with anyone in the house watching me. There was nothing in that hall to remind me of the stroke. The tissues had all been picked up, the tears of my fear on that fateful day had been long dried and yet there I stood, leaning on my old woman quad cane, staring at the floor as if I could see myself lying there helpless and struggling to find one solid thought I could understand. I remember checking the door frame where my left hand had made its last attempt to follow a command. I was looking for chipped wood or paint to see how hard I had hit my head when I finally pulled myself into a sitting position only for my left side to give out entirely and send me slamming into the wall without an ounce of resistance. You might think
Well at least you were sitting down
But it didn’t stop my head from hitting the doorway full force and having a huge bump for two weeks. It was devastating to see that area. And it was between my bedroom doorway and the hallway that led to the bathroom. I was pregnant. I just survived a stroke. I was severely disabled on the left side of my body. I still used a cane indoors and a wheelchair outdoors. There was no way I could avoid that spot between consistent nap spurts and bathroom trips. I did my best not to step in that spot my body had [likely] seized and tried to give out in as if it were a puddle of stroke poison.
I don’t know what PTSD is. I mean, I do but I also don’t. I always thought it was something veterans suffered; like Vietnam flashbacks only with a newer, modern name to match the new, modern war. I know the basics and I know what it means when someone suffers from it but I don’t really know too much more than that. Because of this lack of education, I won’t offend anyone and say I live with it. I cannot say without a doubt that I experience the same issues as someone living with PTSD. I think it’s far more complicated than that. If I look up symptoms of PTSD I find a lot I can connect with, especially when talking about emotions and mental changes, negative thinking and avoiding relationships new and old. The problem is that I feel like I’m trying to steal a title that doesn’t belong to me. I’m not a veteran, I don’t have things that remind me of my stroke and I’m not enraged or saddened by anything or anyone that brings up stroke. I don’t mind discussing my stroke; in fact, I prefer people ask than question behind my back even though I really don’t want to talk to them, period.
According to this study, 1 in 4 stroke survivors experience PTSD symptoms within the first year after a stroke or TIA, 1 in 9 survivors struggle with chronic PTSD after the first year. Do you have to be suicidal to be diagnosed with PTSD? I don’t know but I’m starting to think only the extreme cases are what gets reported and that’s why you see mostly veterans raising awareness for PTSD. You don’t hear or read about stroke survivors too often though they are doing more studies to see if concussions acquired on football fields can lead to PTSD-like symptoms which can lead to suicide. And as anyone who pays attention to current events knows, suicide rates among football players are rising even though they often “blame” this on depression related to concussion or retirement and not PTSD. What does this study mean? I don’t know but to me it means that PTSD doesn’t only affect those with what I’ll call “living trauma” (people who live through something traumatic like war or sexual abuse), but anyone who has survived brain trauma on any level, big or small. This must mean that PTSD can be as severe as leading to complete mental instability and suicide or learning how to live with a panic/anxiety disorder.
Here’s where I get really confused but first let me say that I refuse to go see my doctor about this. I’m afraid I’ll get laughed at as if I’m one of those self-diagnose people when really I just want answers or confirmation. I don’t want to treated like someone looking to claim more disability (I already get all I’m allowed), I don’t want more pills and I’m pre-embarrassed at the idea of overreacting…I’m also tired of the word disorder following me around in multiples like they do…
So I don’t really know the difference between a panic disorder and an anxiety disorder. When I read the symptoms of each I wonder if there’s some sort of Dx in the middle where people like me hang out. I prefer to call these attacks “episodes” because I wonder if maybe they are some sort of seizure even though the symptoms align more with panic and anxiety. So, back to the beginning of this post. In the middle of the night I experience these rushes of white light in my sleep. They wake me up and I feel disoriented, scared, excited and panicked. I have developed a checklist for my body to single out any possible reasons for this sudden jolt out of my sleep. I check the movement of my left body to see if it’s more limited or the same. I lift my arm to see how heavy it is and then I touch it to see how it feels, how intense are the tingles because I usually feel like my left body had fallen asleep and is waking up.
It’s really frightening to experience this. The first few times it happened (like 3 years after my stroke) I woke up Kasper because I was scared. I cried and he held me until he fell asleep and his snoring would let me go back to sleep. Then they started happening every night and I stopped waking him up because it’s not fair to him. Now I live with these episodes alone. I even stopped telling Kasper when they happen even though they aren’t every night anymore. I wake up, check my left body and if I’m shaking badly, I’ll try to stand up to test the strength of my left body. Sometimes I wake up and I can’t see because my vision is completely white. I’m pretty sure none of this normal on any level.
The other night we were watching TV, I have no idea what it was but it was really boring; actually, I think it was Under the Dome. I usually love that show, I must have been really tired. At some point I fell asleep. I fall asleep on the couch all the time but when I wake up due to an episode I’m usually alone and can blame my panic and confusion on the fact that I thought it was later or earlier than it should have been and didn’t know why I was alone. But then the other night he saw it happen from beginning to end. I was curled up peacefully beside him on the couch like a little kitten or some such cute crap and then suddenly I bolted upright, inhaling deeply and speaking very loudly. I just kept saying to him
It’s happening, it’s happening, it’s happening, look
And I kept trying to get him to see my right hand twitching while telling him I was losing what little feeling I have in my left body. I could feel the color draining from my flesh and being replaced with a cold chill. My vision blurred and turned white, making everything appear as if it was slowing down in cloudy, milky water while everything inside my body felt like it’s rushing forward. It was awful and all Kasper could do was sit and watch this happen to me. I don’t know what this is. I don’t want to say but I wonder if this is some sort of panic/anxiety disorder or is this PTSD? I wouldn’t wonder too much about PTSD if every single time this happened I didn’t practice F.A.S.T. I am afraid of another stroke even though I’m supposedly no longer at greater risk than any other 32 year-old woman. I’m also terribly frightened of having seizures. I have no idea what any of this means.