The hospital after my Stroke was…interesting.
The intensive care include so many people and so many stories. So much pain and grief but also so much joy and overcoming different obstacles. Laying in my hospital bed getting rolled into the Stroke intensive care unit, well at first it felt like I was rolled into the waiting room of death. And not the serene, magical, angelic gateway to heaven kind of waiting room.
More like being presented with a waiting room filled with screams from paralyzed people where the negative tension and agony was so thick I could not only cut through it with a knife, it felt like someone was spoon feeding it to me until I couldn’t take it anymore.
Of course, at that point I was in chock. I had experienced the same dizziness attacks while in the hospital as well and nearly collapsed in the shower the first evening. Being 32 and having a Stroke, no matter the reason, was scary as hell. So my interpretation of what happened at the intensive care may have been slightly tainted by my intensive fear of dying.
As the days went on, I started to shift my perspective of things. Not only did the waiting room of death transform into a place of hope and human strength, I also noticed how different people handled their respective trauma. Some couldn’t care less, or didn’t want to care, or perhaps just wasn’t able to change their behavior in spite of the current circumstances. Like that woman who told me she just had her second Stroke but still tried to sneak outside to smoke while she was hooked up to her IV with heart monitor pads stuck to her chest. Then it was that guy who slowly paced back and forth in the corridor, also with an IV and heart monitor pads attached to his body. This was the starting point of taking better care of himself; less stress, more exercise, lower blood pressure and lower weight was his goal. It didn’t matter that he was at the hospital Stroke unit, he was well enough to walk so he did. Instead of waiting until he was released from the hospital he begun his new life then and there.
If not now, then when?
Since I was so young, and there were no apparent reason for my Stroke, the testing they had me to go through was intense. Finally I lost track of the different types of MRI’s and what they were looking for at that specific procedure. They all blurred into one messy week of testing, except two.
The Transesophageal Echocardiogram, which was for checking the heart without the ribs and lungs “getting in the way” and included going down the throat with some sort of camera or ultra sound “thing” while I was still awake. The second was the Angiogram which in my case meant laying on an operating table, naked on the lower half of my body, while they cut me open in the groin to insert a long, narrow tube with was a combination of a catheter and a camera to check my main artery and the blood vessels in my brain. Oh yeah, did I mention I had to be awake for that too? Also, the thought of bleeding to death due to them cutting me in the groin to check my artery, well it didn’t really make me relaxed.
But the thing is, even though I still remember the people I met and the those two very uncomfortable procedures, that wasn’t the most profound experiences or moments for me. Instead, that moment came in my hospital room while dressed in the classic hospital gown, with one of those finger clip on’s that checked my pulse, heart monitor cables sticking out of my shirt, arms blue from my small veins bursting from all the thick needles they needed to use for various testings and procedures.
I was sitting in my bed, doing a crossword puzzle. I tried to activate my brain and stay alert as much as I could. Not that the doctors had recommend it, it just felt like the right think to do. I also had another experience at the top of my mind. An experience that feels kind of funny now but that wasn’t so funny at the time. When you get a Stroke, some kind of speech and cognitive function physio therapist come and visit you. They want to check if you’re suffering from aphasia which means inability (or impaired ability) to understand or produce speech, as a result of brain damage. One of the things she asked me to do, except asking me to walk in the corridor while she gently pushed me to see if I would fall or if I could regain balance myself (yes that is how they do it), was to say as many words as I could beginning with the letter F.
I was paralyzed. I couldn’t come up with one single word. I searched my brain. F..F….what the hell starts with an F. I looked around me, desperate to find something that began with an F. But nothing, my mind was blank and I wanted to cry. All I could think of was one single word that I really didn’t want to say. It seemed so obscene under the circumstances. But when the time was up, I had to say it. F*tta. That is a Swedish word for a certain female body part, and perhaps not the nicest one for that part of your body, more like something you use when cursing. And I mean I am not shy, or easily embarrassed when it come to naked bodies or talking about sex or anything of the sorts. But it just felt wrong that the only word I could come up with was that and I felt embarrassed spitting out that word in front of the physio/speech therapist.
So anyway, back to my most profound moment during my Stroke experience. I was trying to solve an easy crossword puzzle when I felt an avalanche of rage bubbling up inside of me. It was so unfair! What a bullshit thing to go through at the age of 32, and I hadn’t even done anything to cause it! No drugs, no extremely poor diet, not having too high blood pressure or too high cholesterol. Not even too much stress! And the doctors couldn’t (at that point) even figure out why I got it. What the F! I was so sad and angry and I just wanted to throw something, preferably a fragile glass object into a stone wall. Since I didn’t have any such object or possibilities at the hospital I guess my mind and body did what it could to get all that negative energy out. The pen I held in my hand started moving back and forth over paper with harsh angry lines, cutting through the paper, faster and faster. After a few seconds the page of the magazine that my crossword puzzle had been on was mushed together with the rest of the pages, my pen cutting through each page like a knife through butter, only much messier. The tip of my pen broke, and then the whole pen. I threw it on the floor. I picked up the magazine and started shredding it to pieces, all my sadness, frustration and anger directed at that one magazine.
I knew I was sad and angry, only I didn’t know who or what to direct all that anger towards. The universe? God? My own body and brain? I knew who I was angry at, but I didn’t want to think about it. Although my mind constantly reminded me, it wouldn’t shut up. I was angry at myself. Because in that moment I could no longer suppress what I had known for a longer time; that I was extremely unhappy with my life.
Before it was easier. I rationalized keeping up the same lifestyle and telling myself that my happiness was just around the corner. As soon as I got that bigger apartment down town in that fancy neighborhood, or as soon as I got a promotion or a larger salary. But I knew deep within, it wasn’t true. I was just too scared to leave what I had worked so hard to build. But when I got my Stroke, when I suddenly couldn’t walk properly, there was nothing to hold back the truth. My truth.
I think that I, unconsciously, tried to keep it at arms length the first days at the hospital. But the more I saw, the more I went through, the harder it got. And finally, it broke through my armor and there was nothing to do but accept the fact. I hated most parts of the life I had fought so long and hard to build. And without knowing exactly how, what or when I decided that it all had to change and it had to change starting now.
Because if not now, then when?
You shouldn’t feel sad for me you should be jealous.
A lot of people, before knowing me and hearing my story more in depth, express a sadness over my life journey. “I feel so sorry for you, that most have been horrible” or a variation of it is probably what is most common. I think it’s because we’ve been taught to say that when faced with situations or people who’ve gone through something. Especially if it’s something we haven’t experienced ourselves.
But don’t. Don’t feel sorry for me.If anything you should be jealous. I am happier and more thankful now than I was before. I take better care of my health and I am more respectful of my boundaries than I was before my Stroke. I don’t take life for granted, something that most people actually do, and something I did too. I don’t compare myself to others as often and I am brave enough to follow my dreams and heart. I don’t need to be loved by everyone, I just need to be loved by myself and the people I care about. I don’t need to live a life that others understand, because it is not their life to live. Only I need to understand my life choices because it is just that, my life.
Don’t for a second believe the lie that having money, a career or being healthy automatically means you’re happier, because it doesn’t. So many people have so much, but are still so unhappy. And then there are people who live with chronic illnesses, who have less of everything, who are still happy and enjoy life to the fullest!
Before my Stroke my focus was to create a life that I was told by others was a ” good life”, or that I had perceived was valuable by the standards of Society. And it’s no one fault, it’s just what it is, or was.
I don’t blame anyone for the choices I made then, it was and is my journey. I am just glad it turned out this way. It was what I needed to get my shit together and follow what felt and feels right for me. It was a good experience, a much needed experience at the time and I am thankful thatit happened to me. My Stroke made my life better because it made me make better choices. It made me find a purpose and it was what eventually made me quit my job, start my own business and move into the countryside. It made me focus my love and energy on sharing what I love most; the slow countryside life, the importance of those “small emotions” and everyday details, my love for photography and Swedish traditions and how to share that through digital communication and social media. Today every day is a good day, because I am alive.
Of course, not everything changed over night. But what changed was my mindset, what I valued and the choices I started making. I’ll share more in the third part of my Stroke Journey; #3 “What I did to turn my life around”.