It was exactly one year ago today. I had been ill all night long and unable to eat or drink much of anything well into the morning. I felt so unwell that I decided to call the boy and ask if he could return home early from work and bring some soup. As he was preparing the soup, I made a horrible mistake. I decided to take a nice warm shower - you know, the kind that always feel so good when your body is sick. If I had been thinking clearly, I'm sure some part of my brain would have understood this to be a bad idea. Unfortunately, the DO NOT DO THIS light was not illuminated. After a few minutes, I began to feel really unwell. I turned off the shower and leaned against the wall. The next thing I remember is staring up from the bath tub into the very concerned looking face of the boy who kept repeating my name over and over. Finally, I managed to ask: "Why am I lying down?" I had fainted and fallen backwards from a standing position, but I really could not feel any physical injury other than some mild discomfort in my neck. The boy called for help, and he tried to get me up. As soon as I sat up and tried to stand, I fainted again - this time in his arms, thankfully. He helped me into some clothes because I was no longer allowed to try standing up until the paramedics were present. The ambulance arrived and EKG's were done, I was taken to the hospital and more EKG's occurred. The doctor assumed it was my heart, at first, I guess. Some x-rays, but nothing of my head, as it didn't appear anything was wrong after the neurological exam. I felt very peculiar, but after receiving what I think was probably way too much IV fluid, I went home.
The truth is, it was at least a week or two before I remembered the events as they occurred. The boy tells me that I was unconscious for only a minute or so the first time, less the second, my eyes rolled back in my head.
The next day, I went to french class as usual. I still felt very peculiar and I noticed I was having trouble remembering things. I stayed the whole morning, but I knew something was amiss. I missed the bus to go home. I couldn't figure out how to tell time and coordinate it with the schedule. It just didn't make sense in my head. Every sound and movement around me was overwhelming. I went to the grocery store and I could not buy anything. There were so many products and people and lights and noise. I forgot why I had even gone there. I left, and I managed to get on a bus and go home.
I would walk into a room and forget why I went there which would lead to me feeling overwhelmed and anxious. I know, perhaps you are thinking - that happens to me sometimes. Of course it does, on occasion, but it happened to me continually. Something was wrong. The next day, the boy and I headed off to the emergency department where I waited for nearly 12 hours. The headaches had started by this time. Intense and debilitating. It felt like there was something crushing my skull, I did not have good range of motion in my neck, and there were sharp constant pains like little knives in various locations. Painkillers did nothing.
The first ER doctor said it was a mild concussion. He ordered a CT which showed no serious issues and he explained it would probably be better within a couple of weeks.
He was wrong.
I had no appetite and when I did eat it felt as though the food went into a void. I could not feel my stomach aside from a constant state of nausea that worsened with any activity. I could not tell if I was hot or cold. I had to take a leave from school. I could not listen to music, read, use the computer. I could not do anything without feeling like I had the worst flu ever with a migraine on top. I stayed in the apartment, in bed, in the dark.
The second doctor, a week later, suggested it might take longer. Up to four weeks. He gave me a referral to a traumatic brain injury clinic. He told me I had to rest my brain - I had to stop using it. Have you ever tried to do that? It is not nearly as easy as you might think. This is when I learned about post-concussion syndrome. If the term is not familiar to you, it is likely you have heard of the phenomenon in the world of sports. It's the exact same issue. I had not even hit my head, really, I had simply fallen so hard and fast that my brain slammed into my skull. This is what occurs when football players slam into each other, as the helmet doesn't really help with this type of injury.
A planned trip to Mexico was cancelled. It would be the first of many things I would give up over the course of the year. The boy stayed as well, as I was not even capable of going to the grocery store or taking the bus. It was too much. Everything was too much. I had high hopes for my appointment with the brain trauma specialist. These hopes were quickly dashed. He could not offer much more than anyone else had. It might take another month or two. He reviewed the CT scans and confirmed a mild concussion. He listened to my concerns, but he said that I had to be patient, that these things take time to heal. He suggested I should be able to return to my normal activities and that I should try as soon as possible.
I tried. Everything was difficult. French class became a huge challenge as my brain struggled to remember and to try and learn. I dropped to half days and still had to miss class on a regular basis. I was stubborn. I kept trying to push myself. That's the thing about an invisible injury. If I had injured a leg or an arm, I would not have been physically able to use it. I was very depressed and distressed and worried constantly. I had mood swings and I was probably not even remotely pleasant to be around. I felt sorry for the boy. I felt guilty and broken.
It was not until after Christmas, most of which I spent alone in my room to escape the festivities, that reality really sank in. This was not going away any time soon. I had a follow up with the specialist who just added more possible time to the recovery window. I understood - he had no idea when it would be better, but he suggested I should make a full recovery.. eventually.
I began using what little time I could spend on the computer researching the condition. What I found was not encouraging. Medicine gave me nothing - research studies suggesting we need more information about this type of injury. I used my nursing resources to look for care plans and came up with little of use. I felt completely hopeless, but I kept on going to french class and stumbling my way through the days. Resting as much as possible, avoiding anything that might aggravate my symptoms, all I wanted was to keep going to my classes so that I was at least working towards something.
There were some very dark times. I could go on about everything that I have missed out on and how difficult it has all been, but I'd rather not go on and who is even reading at this point, anyways? I am mostly writing this because I never have. Partly because staring into the screen long enough to do so has only recently been something I am capable of doing without getting a migraine. Partly because today is the one year anniversary of the incident. And most importantly, I want to tell people that this happens. It could happen to you. And you will never, ever understand what it is like for someone going through it unless it does - you simply can't even imagine what it is like to have a sick brain. However, you can try to be compassionate.
The problem is - I looked okay. I could talk, I could walk - people did not understand. I don't blame them. I did not understand - not until it happened to me. It felt like everything was taken away from me - exercise, writing, music, books, travelling - everything I loved the most and everything that made me who I am.. it was gone, or at the very least, on a lengthy hold.
In march of this year, I underwent a minor surgical procedure to remove some questionable cells in my lady parts. I had the procedure under general anesthetic, which was absolutely awful for my brain. The doctor did not understand when I tried to explain and I felt like I had no choice. I still can't take any kind of medication with a sedative effect because it ruins my brain for weeks. I won't go into too much detail, but the doctor's words after the biopsy were: "Everything bad we thought it could be, it is." Adenocarcinoma in situ. Due to the glandular involvement and what I will attribute to a lack of advances in modern medicine, they can not tell if it is really and truly gone, though they think they got it all. As a result, at 32 years old, I need a hysterectomy. I can have a child first if I want to, though there is of course a risk that there is cancer dwelling in my body undetected.
My brain still has not healed. Things are much, much better, but I still can not function properly or do all of the things that I used to. I am not even capable of working at this point although I feel I may possibly be able to find something part time soon. But it won't be in nursing, I'm just not there yet. And now I need to have a child very soon or never.
This has been a shitty year. I am not writing this for sympathy. I suppose I am just writing it because, hello, everyone, this is how my life has been, in case you were wondering. Perhaps to bring some attention to a really awful medical condition that, in my opinion, needs a lot more attention (brain injuries and post-concussive syndrome). And because I was lucky. I have always gone for regular pap tests. Had that not been the case, it is sure that it would have not been caught early and I would not have even the possibility of keeping my uterus long enough to have a baby. While it's true that my results were quite rare, less than 1% of women get this kind of glandular involvement, cervical cancer is detectable and treatable. So if you haven't been recently, just go. I had no symptoms. Most people don't. Most cervical cancer is caused by HPV which may or may not have any symptoms and which is INCREDIBLY easily spread. Even if you are in a committed relationship - first of all, people are liars. Secondly, some strains take a while to cause issues. So just go and get that pap test you've been putting off for whatever reason.
And be careful with that brain of yours. You only get one and the stupid thing is impossibly fragile.
(PS: I swear I'll link this up a little later. My brain is tired - look at all that text!)