Trauma of any kind is not something that only affects the patient; it affects very many people, families, friends, caregivers.
At the moment of the incident, all the focus is set on the victim where it should be. That focus should wider and should consider all who is involved. A state of shock can sometimes be very noticeable but sometimes it can lie so deep beneath the surface.
As normal as we might seem and as normal as we might live our life we still live in a state of stress. Not a stress that is always visible. However, the stress that can surface at any second, and you have to be prepared to handle it. Deal with it as cool as possible and still go on with your day as if nothing has happened.
Privacy, own space …. That is not real to me. The only moment I am alone in a day is that ten to fifteen minutes that Henning takes Happy (our dog) out for a walk at night. Privacy is when I am alone at home with Henning, my mom or one of the assistants. And a privacy to do the things normal humans do in private hmmm I cannot move at all, so think about it.
The only thing I can do by myself is to work on the computer. Still I need someone to bring me to the computer, turn it on, place the reflecting dot (my mouse) on my forehead and putting the neck support on.
I need somebody to do everything else for me. I do not need help, because needing help implies that I could do it but just not well enough, and the fact is that I can do nothing at all. I can only hum to get someone’s attention so I can let them know that I need or want to do something.
My life is nothing but asking constantly help from people. That if anything builds your character. You easily lose all your self- worth. It was pretty horrible feeling to go from an independent woman back to an infant! Helpless, hopeless, humiliated. Always, ALWAYS needing help was a big cause of feeling humiliated in the beginning. It felt hopeless since there was no chance for a change. Helpless, so very helpless so that nothing else to do but to get used to the new situation and better the situation the much I was able to. Years later came acceptance.
There’s nothing more frustrating than to have an assistant that does not know you when you’re so helpless.
Someone who doesn´t understand what it means in to be locked–In someone that does not comprehend that you can feel everything and that you can think for yourself. That you know exactly what you want and the way you want it (you can imagine how much stress this can put on both sides). It takes about a year of working together to reach that level that they truly understand all angles of the situation and know how to handle with it.
It makes it also difficult to find new assistants. Because most girls that are interested in the job are young women that are only interested in the job for a short period. Like for a year or even less. That means that just when we get to know each other well enough they would be leaving and that I will have to start all again.
My assistants are like a lifesaver to me, without them my life would not be all that it can be. Having a good assistant, mom and a husband like I’m blessed to have, who genuinely consider my thoughts and needs, make a world of difference!
The easiest thing in the world to do must be lying in bed. Everyone can do that, everyone! It might not be so easy for someone who is paralyzed. Especially when you cannot move at all. Imagine you are lying there not in that exact angle you want, this causes all sort of stress and frustrations that a healthy person who can move cannot even imagine. It is like an itch you cannot scratch, only much desperate and hopeless situation. Talking about itches.
Imagine this; it itches, and you need somebody to scratch it for you. You cannot even speak to tell them what and where, and then they still have to reach that exact right spot. Phew, crazy and stressful, yet life goes on.
For people who are totally helpless like I little things take on huge proportions at the moment they happen (meaning things like an itch or mosquito biting you for example). But from the other side things that would be considered big things by a healthy person becomes meaningless (like holding on to grudges and regretting the past). Misfortunes put things in perspective.
Every morning after my assistant finishes, washing my body and putting on the clothes she lifts me up from the bed to the chair. She fixes my legs and arms so that I am sitting in a comfortable position in my chair. I take a look at myself in the mirror and a quick peek outside the window. I feel lucky and blessed. I smile and thank God for my wonderful life.