I think one of the hardest emotional struggle out of everything I have gone through was and is still the survivors guilt and shame.
Regaining me was going to be hard but I didn't know how hard it was going to be.
It was so hard watching my loved ones spending so much time coming and visiting me, sitting with me for hours on end while I could do nothing to entertain or for that matter, I could not even stay awake long enough to have a conversation. Don't get me wrong, I was and am truly one of the most fortunate people for having so many family and friends who cared so much and visited when they could. The guilt and shame came from me being the reason that they had to spend all of their time in the hospital. Now, I know what you are probably thinking...It wasn't my fault. But at that time, to me it was.
The drugs they had me on for pain, were necessary but they made me very sleepy and I would try so hard to stay awake for them, but would feel so guilty when I fell asleep.
Emotionally I had a long road ahead of me, at first it was hard just to get through a short conversation. It was as if my mind and my mouth no longer communicated enough and the feeling of inadequacy was always in the back of my mind.
The questions that I would ask myself haunted me, "Will I ever be myself again, will I be able to live a happy life?" and " Would it have been better if I had just died?". It was emotional pain that i had never experienced before, I no longer felt like I was good enough for my partner, would I ruin his life and future because I was not able to do the things I used to? Its not fair to my family to always have to drive me and worry if I was ok.
I would wake up in the middle of the night unable to breath wondering if I was dying only to gasp for air at what seemed like seconds before death. It would happen nightly for years, I was ready to go and so I started planning my own funeral. i ended up filling out a living will and buying the cd for them to play at my funeral. I had a whole chart and a list of what I wanted to go to who and advice for my family and friends. I even wrote a poem.
When I finally regained my ability to walk and talk again, it wasn't at all like it used to be. My mind and memory has taken quite the tumble...I lost most of my short term memory and lost quite a bit of my long term memory as well. This of coarse was due to the medicines from inducing me into the coma so I wouldn't move while my organs were out of my body be washed a couple of times.
I remember forgetting where I was quite a bit, it was scary. I didn't know what was real and what was fake.
Getting back to the reason for this page, i need to explain...as a person who has been in the hospital for long periods of time and emergency rooms too often to count, I can honestly tell you that I felt awful and full of guilt when people were there.
My words would slur and I could see a picture in my mind but not be able to find the word that went with the picture. When I would talk to people, it took me a long time to get my words out and even longer to remember the words. The medicine they used to induce the coma had a terrible effect on my long term and short term memory.
When I would get a phone call from my family... I wouldn't remember I had talked to them earlier that morning and then I would tell them I haven't talked to them for so long and how much I missed them. Then they would tell me I had just talked to them hours before and my heart would fall into my stomach because I seriously couldn't remember. I would try so hard but my memory was blank, this happened often. I would lose time and by lunch was not able to remember what I ate for breakfast. Loss of memory was an emotional trauma in itself.
During conversations, I could literally see peoples faces turn to pity and sadness when I struggled to remember words or sometimes how to pronounce them. Seeing their faces made me anxious and I would stumble even more. I used to be able to speak so clearly and fluently, never struggling to find words.
The memory loss also effected my ability to comprehend what people were saying. I would forget the person was talking about in the middle of their story and would end up embarrassed. Sometimes when I would try to talk, it was as if a big stop sign was put up in my brain. I would forget what I was saying and go completely blank, this too was so embarrassing. (Still to this day I struggle with memory loss, comprehension, going blank, speaking problems, and the list goes on)
I began to think how much of a burden I was on my family and friends. Wondering if people were getting sick of me complaining about pain, nausea, memory loss, my ostomy bag, etc. Or getting tired of bringing me to the emergency room many times a month, giving me rides to multiple weekly doctor appointments and other places, and all of the other things I needed help with. Such guilt for monopolizing their time.
I also heard stories of the things that I said and did while heavily medicated. I am able to laugh at some of the things I said NOW, but then I felt shame. It was as if I had been drunk and blacked out and didn't remember saying and doing things. I did remember remember some of the things I said...at the time ( maybe I will get up enough courage to add it ) and sunk inside myself when I thought about it.
It was a personal shame, even though this was not my fault, I blamed myself and began to wonder if I should not have fought to come back. If it would have been easier on everyone. I was now ashamed, a private, personal shame that I couldn't share with anyone.
I felt guilt and shame for being so needy, as many in similar situations do. I now know that this is a normal response to the loss of organs and my entire life as I had known it. At the time, my depression, guilt, and shame kept me in a quiet jail cell of loneliness. It wasn't until I started sharing my feelings that the healing began and it is still not gone, just a distant memory.