AFTER ALS

30.12.2018
Another night and still awake. In spite of taking all the usual medication, it's 1.36 in the morning. Gossip Girl has become an addiction and it's all I watch. At least it's a break from Luther who is at the opposite end of the pole. Light-hearted playing and darkness.  I have taken a sleeping tablet and that should knock me out.
Yesterday the sadness came back and as always it's preceded by euphoria. A genuine feeling of happiness buoyed by laughter. I never know when the tears will start again. Just a thought, a piece of music, or a movie can switch on my internal tap of water. I should fall asleep soon.
Tomorrow is another day.

About 2 years ago my son and I went up to century city shopping center to get meds or something. My husband was at work like he usually was.  My brother was at home with all the animals, asleep in his room like he usually was.  We took our time and wandered around for a while.  At about 7.30pm we decided to go home. We chatted while driving and it was nice as we didn't get to spend too much time with each other. My work his work and so on.  We saw smoke when we were near home and wound up our windows as usual.  The airbase was continually being set alight by homeless people wandering around.
As we came down the road we could see thick smoke and I said to my son that someone's house had caught fire. We drove along quiet but content, however as we turned the corner to the house contentment changed to horror as we saw that it was our house burning. TBC

19.02.2019 - Tomorrow would have been my 26th wedding anniversary and today I dread tomorrow. It took me about 20 years to start remembering our anniversary. It became a game we played while he was here...who could remember and guilt the other. We were odd like that. During the day whoever remembered had to judge the right time, before the other one remembered, and send a text or phone and say "Happy Anniversary" and then the other would say "Shit I thought about it during the week or the day before and then forgot"
Like the one year when everyone forgot my birthday.
I walked to the front door and shouted "Well happy fucking birthday to me!!" and left for work. I laughed all the way. 

I miss him more than I ever thought I would. We get used to a person, take it for granted that they will always be with you. Grief, so much written and yet nothing really helps or prepares you. 'I've grown accustomed to his face, familiar with his ways' 
I never really considered death or loss, it was never an issue.  It was some time when we were old, old? No particular age really. I just didn't think about it other than in relation to my parents and aunts and uncles. That was normal. You get old, you get sick, you die. Yes, we started attending more funerals but not of our generation. Those things happened to other people. What made it worse today was maybe the Whats App messages. Reading them made him seem alive. Wanting to go back to that time. I want to go back to that time when he was sick and we were together. 

The best of times and the worst of times. I would give a lot to just have those last few minutes again. I relive them but they are not complete because you should have said this or that but you were aware and not aware, do I even remember the exact time he stopped breathing. We should have said more that morning, I wish I had said I love you, I don't want you to go but we were wrapped up in our own misery, our own pain. I had fallen asleep on the sofa next to him. I remember jumping up as my son wheeled him back from the toilet. All I saw was the pain on his face. The pain that he was still alive. I put him in his chair and I knew I would not be able to clean or brush teeth. It would be a day where I would just manage him. Try and keep him asleep. He had given up the day before for the first time since he was diagnosed, he refused food. I didn't argue with him as we had discussed this. I knew what he wanted so there had to be acceptance. His quality of life was what was important. Not mine. I didn't have the disease, I wasn't suffering physically. Mentally yes but I was not the one who was dying. Only his wishes counted and I knew I wouldn't be able to keep him here, as much as I wanted to. I would happily have looked after his body and fed him and talked to him. But it's not what he wanted, he didn't want to be dependent on me. He didn't want to be fed or as he said "His ass wiped" If he couldn't communicate or do anything he said, what was the use.

Its been 4 months now and he is never out of my thoughts. He is the first thing I think about when I wake up and the last thing I think about when I go to sleep. Maybe I must take his photo off my phone. I get a shock every time I see it, its as if he is just at work. For a second I feel like he is going to come home. He looks so alive and I can smell and hear and feel him. He is all I think about and I don't know how to stop. Well, in theory, I do know but I suppose I am not ready. I don't leave the house much. Some days I feel anxious and some days I feel content. Some days I cry and some days I sleep. I suppose if I worked it would be better but the thought of it makes me feel ill. The basic premise is that my brain cannot take any more feelings, information, thinking, pressure. It doesn't leave room for anyone else or anything other than him. Having to do something makes me feel nauseous. I don't want to have to talk, or go out or be with people. 

My brain has shut down. Some days I want something more but as soon as I try and do anything the feeling goes away and is replaced with loathing of the task. People want me to come out for lunch or dinner but I don't want to go anywhere. I just want to be left alone. Obviously, I know it's not healthy and everyone has an opinion. Until mine changes, there is nothing that will help. Why should I? Am I not allowed to miss him, am I not allowed to be tired, be away from everyone, be alone with my own thoughts. Why do they call it a period of mourning if I am not allowed to mourn? He would say it's fine. He would give me permission. He would say do whatever you feel.

My daughter always asks what I have done when she comes home and she is impatient with me. I don't really care and I just ignore her. I cook if I feel like it. Today I took the meat out but now the thought of preparing and cooking and doing the same thing leaves me with a knot in my stomach. I know I won't do it now. I will just do something easy or nothing at all.
They are no longer young and yes I am their mother but I am not their partner or their carer. They are adults. The guilt must stop.

WHATS APP
04/27 ME : Do one for the boys
04/27 ME : And throw olives on mine as well
05/03 Tony: 💋💋💋💋💋💋💋💋🌞🌞
05/03 Tony: ❤❤❤❤❤❤🐬🐬🐬
05/03 ME : 💋💋💋💋😘😘😘
05/06 ME: Don’t think I missed the secure part.
05/06 ME: It’s taken a while but I finally understand the meaning of love.
05/06 Tony : ❤❤❤❤
05/06 ME: Lemons
05/06 Tony: 🍋🍋🍋

24.02.19
My eldest brother's birthday today. I sent him a message of course. The last couple of days have been rough. I wish that I could forget about him but every time I see his photo I am struck by his sheer vitality and the thought that he can't be dead. I often used to think about whether it was better knowing he was going to die or better if he had died unexpectedly...in a car crash or something. Was it better if he went without saying goodbye? When I think about it like now then I get tears in my eyes. I now know what my best friend meant when she said she feels alone. It's not something anyone who hasn't lost something knows. No one can help you, your kids have a different pain. They think they know but they don't really. I hurt all the time. All the time. Some days I think its better but it isn't really. I shouldn't but I do. I am the strong one. The one who always takes control. The one in charge. the person that his life revolved around. I was the loud one, the black and white & nothing in between. I knew where I was going, we both did. We had work and the kids and the house and the animals and us somewhere in the middle or down at the end. What happened to us? When did we become less important? Life is what happened to us and we were not looking.

The main problem is that I fell in love with him again before he died. He made me love him. He needed me for the first time in his life and that made me love him even more. When his muscles started dying I would smile at him and walk away down the passage. I would cry and I would grab a towel and stuff it over my face so he didn't hear me. My son picked me up one day and dragged me into the office because I was outside his door. Just as in life I wanted a happy and peaceful home my husband wanted a happy and peaceful death. No one was allowed to cry around him. So I did it alone or when he was sleeping and I watched him. But yes I fell in love with him again and it hurts so very much. It is frightening how much I need him to put his arms around me and hold me and make everything ok. I don't need a man, I want him, the man I fell in love with. The man I married. The person I thought I knew for 27 years. Subconsciously we both knew it would be till death us do part. It was my second marriage so a third was out of the question. Losing 2 husbands is bad enough but a third as I often told him,  would be sheer negligence. I also often told him that I would never divorce him....as that would make him far too happy.  Sometimes I would think about what we would do when we were older and stuck together. Would we irritate each other, would he talk too much. But it was great, we two, just a pity it had to end.

03.07.2019
It would have been your 58th birthday today but of course, you are not here. Deborah said we were going out to eat and we would order a bottle of wine and toast your memory. So we went to a wine farm. You would have loved it. The food was superb and the wine was divine. You probably would have tried to organise a hunt there. The view was amazing and it was quiet. The wine was excellent a fitting bottle to drink to you. We drank it all and you know I don't drink. We passed the day chatting, sharing stories and remembering. All I seem to do is remember when I want to forget. The memories are what kill me. At least I got through the day and just wished you were there mentioning gooseberries and several notes and I would say "This eye of newt is particularly pleasing" 

10.10.2019
A year today since you died. I wish I could say that it's all sunshine and roses....but it's not. 
I fight with the kids all the time and we all just live in our own bubbles. The joy has left our home and I don't know how to get it back. Nothing is right even Kuma is miserable. I took down the black ribbons that marked your death and now all that is left is for me to sprinkle your ashes. It will be done on the 16th, the day of your cremation. They will be where you want them to be. I have done everything so far the way you wanted. I told you I would be with you and I would do whatever was necessary. I kept you out of hospital like I promised.  This process will continue its traditional path according to me. Deborah came over and brought all the tools. Cake, chicken that terrine you like and nice crusty loaves. We sat and told stories and laughed at Michel. She is so funny and can keep everything together. She misses you terribly...like everyone. Alex just carries on, I don't know what he feels anymore. I don't know if I ever did. Everyone is so angry.  I just keep wondering when you will leave my body. I dreamt about you last night....first time ever. I suppose I am saying goodbye. I can't live like this anymore. I hope that I will find a way to fix things. Michel also dreamt about you. You were both at a hunt and she was on Cecil. You were standing at the end of a path and there were hunters on either side. Cecil walked past everyone to where you were and sniffed your face. He snickered and he said goodbye. Maybe all of our sub-conscience minds are telling us to say goodbye. We cannot live in this kind of pain forever. It is killing us. Another day has gone and I thought I was feeling better but I feel shit again. I spoke to your mother and Michel took her an orchid. It seems as though she has lost the plot a bit but we will get her on track again. I took your picture out of my room, off my phone and computer. I can't stare at your face every day, it makes things worse. Why you couldn't have died in a car accident I really don't know. It would have been so much easier mentally. I read the diary again and the funny thing is that I mostly remember the laughter. The diary is sad. Michel said that this year she wants Christmas eve. She feels that it will be better. Last year she felt as if she was failing you but I just couldn't do it. Maybe this year I will feel better and we will have the usual suspects over. It's a pity you didn't get to meet Collin. I think you would have liked him a lot. He is quiet but strong, he has a great sense of humor. Fits in with ours. I really like him. He is good for Michel, I told him. He and Marthinus get on very well, he kills himself laughing at him.