I was brushing my teeth, and then noise left ear just started. The noise like a drill inside my head. Cut a long short, the ambulance going to hospital - I was not unconscious, I was everything perfectly work, but I was sick etc. I can talk, I can think, I can stand up, whatever.
The hospital say you have to lie down just in case, and then we have scan for the brain, and they said I had subarachnoid haemorrhage, and we have to go to different hospital, Royal Free. Ambulance transfer, and then lovely ward.
I was anxious, but only anxious about waiting, I hate waiting. I didnít know how long last, I had no idea how long this haemorrhage is better. I had no idea!
The doctor and my husband talk, he said to me you have to do this first, then this, and after that and after that, and I said: ĎLook, how long take the whole thing?í And he said: ĎWell, at least three or four weeks after the operation.í And I thought: ĎOh! Thatís not bad, all right, when the operation?í
They have to explain my husband and I: they have to wait until blood pressure end, this bleeding completely stop, or something like that. So then I have to wait another scan, angiography, so I think I have that next day.
And after that the whole period hospital before operation was . . . . really nice, because lots of friends they come see me hospital, and I thought: ĎOh, I have lots of friendsí and I was happy. I donít know why, because people sometimes think this terrible business hospital, and children Ė I have two children.
But about two or three day later, suddenly I canít speak at all! Now, but I didnít mind, because again, maybe different pills, maybe I was just happy, but I did a bit frustration about the operation, because I want the operation now.
Obviously the doctor explain, I and my husband what has to happen,
how chances I survive or whatever, but I didnít study enough because . .
. I think I want, Iím a survivor. So I thought: ĎYeah, well, we
wonít talk about that you know for me.í Just, you know Iíll survive.
I have to quickly the operation.
I can remember the morning start operation. I remember woke up completely different ward, I donít know where I am and I canít speak, and my body it completely wire and tube and oxygen mask.
I didnít understand, because before, just before, I thought I was dead because I was flying, I was up above like flying. I saw the room and the walls not clear, no ceiling, but the walls like jagged, like there explosion or something and the walls crumbled down.
But I saw the bed there, then I didnít know before but I thought: ĎItís me down there!í And I was all right, really. And then something happened, I floated down and the bed my destination. Before I was up there and now Iím inside my body.
And then I was thinking: ĎWhat happened? Is the ward there?í I didnít know at first if something goes wrong. Of course I canít speak and people said sort of: ĎOh, hello thereí, not like before unconscious then they say: ĎOh, youíre alive! Youíre conscious!í, nothing like that.
That day my sister comes to see me, I try to explain what happened the day before, what day it is, I look my diaries everywhere, and then my sister she knows I want something, but what she didnít know, so search my bag until I say: ĎYes!í or not yes but: ĎMmm.í I look in diaries and I say, pointing the day, and I say something about: ĎNow? Now?í and my sister told me that this operation is four days ago. And I survive.
I canít speak, I canít move my body too much, but I think Iím exactly the same before, before operation, because I canít speak. I canít move because the nurses tell me to lie down, not upright.
This passed days, this special ward, and then think ten days and they say I can go upstairs now, no need of this monitor and all the other things. So I went upstairs to ward, and again, happy period; itís fine my hospital visit, because I know I canít speak but I try to express myself without words, and I did it not too bad.
Then obviously physiotherapy start and language therapy
start and thatís fine because I like this hospital, but they say to me
youíre well now, maybe you go to near hospital, the first hospital I
went to that day. So
I went to one week to that hospital and I didnít like it at all. So I
had to leave quickly.
When I go home, one or two weeks itís like getting to know my home back. Thatís all right. I gave to all the appointments fixed for me therapy, different therapy. And all good experience for language therapy and physiotherapy, but not good this hospital because I have bad experience for the consultant surgeon.
I think he hates women and he hates patient really, but women patient worse. He thinks aphasia something about intelligent. So whatever I find to bring up he always refer my husband, and I hate that so next time see consultant again I bring my female friend Ė she is a doctor anyway.
And exactly same happen, he said to me: ĎCan
I phone your husband about this?í I said: ĎNo, Iím here.í But he
said: ĎMaybe too difficult for you, you donít understandí and I was
so, so Ė I want to hit him. Well, I didnít, I canít the words
describe my words, I canít express myself, so I hate that. And my friend
says exactly the same afterwards, but she said to me ĎI canít the
consultant what I think of him because heís the same hospital.í
Unfortunately this the last of the happy period. Soon three or four months finish because actually I was depressed now. Depressed completely different thing, and I have to lucky my speech therapist knows touch with Connect, and thank God I was lucky to have counsellor for me: Harry.
So at least
the therapy helped me to try to live normal life, and thatís the best
thing about Connect.
When physiotherapy finished, they say I have to exercise every day my hands, because my hands is worse affected. But unfortunately after that exercise soon hurt, because I suppose my nerves this hands now alive, and it hurt to do the therapy. So I canít do it, and no painkillers work for this pain.
I have to completely different appointment now, to go to pain clinic
and I with this pain clinic two years. They try everything, try blocking
the nerve, blocking the drug, we try different drugs, they try lots of
things, but thereís no effective at all. Some of them worse actually. I
tried homeopathy, I tried acupuncture, so Iím going to more things try,
and least a dozen I havenít tried so I work on that all the time.
Preparing for the future
Before I was discharged hospital, I know now thereís lots the authority donít talk about. Some body, some local official, one person to one person they supposed to speak what happen later when you go home, what happen in your work, what happen your pain, what happen you relationship for family.
They canít say what happen exactly, but different things happen, that one or that one or that one, they talk about that. They only talk about speech language and physiotherapy, and have you got people to help you at home? Help you, they mean physical thing.
They didnít talk about what happened with this haemorrhage, what happen if youíre depressed or not depressed. The whole business is different stage, and they donít talk about that at all. You find yourself different periods what happen.
For example. Practical thing. They never talk about how to put benefit about living allowance, I didnít know enough about that at all, at least half a year, and thatís because I have friends who have this allowance so she told me about that and we write form, she helped me the form, because big form.
I have to myself how to tube and bus pass, I have to search everywhere how to do that exactly, and itís difficult thing. Obviously long time ago this authority they think this family is a man, heíll look after her, thatís it. Obviously they think, well they donít need social worker.
But actually you can
social worker, because show you how to apply benefit, how to probably
different things, like youíre anxious, youíre worried, youíre
frustrated . . . if you have not counsellor you donít know that! How it
feel that. I was lucky, I had a counsellor. But lots of people need social
worker, at least one month or two months and then fine.
Looking at photographs
I think people like me, is just natural to look at past. The past is best served with photograph. Before I canít imagine future at all, so I look at a photograph and search and sort of pick up the past photograph like Ė not best people, but what I want.
So all the photograph I have I search everywhere, and some of the people I find there I put in little pile. And then later I look at this pile all the time to get my sense of people this photograph, some are dead, some not, and just remember, my thought is a bit like a book I was reading.
My brain itís past. And at
least Iím my depression control about that. I did it if I was really
depressed I had to do it then. And obviously one or two people I talk, I
show them the photograph and I speak about these people, because people
donít know my past that well at all. It gives me a chance to talk
properly, not the family but other people. So I can talk about the past
using the photograph and my speech is better all the time.
So at home I was most depressed first. But this therapy Connect itís really helped me a lot. Not just be there, not just to talk other people affected like you, this communication.
What it is, it changed me how to look at past things like photographs, like drawing, like poetry, like looking at photograph for my members family, my close friends. Obviously, what happened, if Iím depressed it means I canít imagine future, so I looked past. Now I know now itís actually worked, but before I didnít know, itís just something I have to do because otherwise maybe I go too much depressed.
So I look at the past, look at the times happy, but what happen is Connect help me to do that. I mean obviously practical things yes, but unconscious is just we talk about other people, the atmosphere of Connect is - for me itís like half therapy, half helping others.
This process of the therapy, of going to Connect, every week,
twice a week, slowly things surface. But slowly. If I go to Connect I have
to more focus for my - not just problems, for my point of view. And you
have to focus for the group Iím going to, discussion or whatever. And
focus for my own counselling.
For me Connect is communication. Communication other people, communication workers, communication outside, communication inside, itís all communication. You have to connect with other people.
And I did all of them except my family first, because I suppose itís easier. And I do everything I do well. I like to talking so my therapy worked me. So I was trying to connect the outside world, and thatís easy really for me, but the other one, family itís like a glass wall. But this happened and then inside I can connect the family as well.
So for me Connect charity is good
name. I think all them have communication, aphasia, ĎConnectí is the
word can mean something like that. Connect helped me to organise my brain
a bit more logical. And of course if you think about past this word
ĎConnectí: you have to connect past, and then maybe you actually more
focus for future. Before, I took one day at a time, and that's not living
for me. But now, the present makes sense because I have a future.