Bunny who?

Why? Who? What's this blog about? It's about MEEEE!

Being a Widow

My experience of dealing with grief as a widow

Astrocytoma

About Jane's brain tumour journey: Astrocytoma.co.uk
 

You no longer died this year

31 December 2011

Liefie,

In a few hours it will be 2012. The start of a year in which you were never even alive. That is a thought I can barely comprehend. A year where nothing will have any memories we made together.

From then on, when people ask, I will have to say "My wife died last year". That makes it sound like it was all so long ago. People will start to feel sorry for me but also start feeling that I must obviously be well on the way to 'moving on' because after all, it will be 'last year' instead of 'a few months ago'.

I don't care if it was a few hours, days, weeks, months or years ago that you died. Because part of me died with you. And like you never forget the day you were born, you also never forget the day you die.

xx
Keep Reading: "You no longer died this year"

I want to be loved...by you?

29 December 2011

Liefie,

Maybe this is not for public discussion but my ethos of this blog is: if you promise people to tell them what it is like to be a widow, then I believe I should tell them what it is like to be a widow, warts and all.

Lately I have been fretting over something. It is difficult to explain and in some ways, it tears me apart.

Right. I will just come out and say it. It has been exactly 7 months today since you died (Duh, of course I don't have to tell you this, you were there). I miss you so much. And I cry for you frequently. But I would really like to wake up with somebody again. Somebody to make me tea & croissants in bed. Somebody who sends me a text to check if I am having a good time. Someone I can call just to let them know I miss them.

I wish that person to be you. But since it can't be you, would someone else be nice? That is what I am struggling with. I know I miss YOU, but am I also missing love in general?

I am still so full of love that has no outlet right now. You were ripped away from our future at a time when we were closer together than we had ever been before. Like a car that comes to a sudden stop, the bodies inside keep moving forward until physics catches up and realises the car has stopped. I feel my love is still hurtling along. But is that just love for you that I am looking to project on someone else or is it also love 'in general' that I am ready to give to a new person?

No, I have not met anybody. It is not about having somebody specific that I would like to project my emotions on to. It is about determining what this feeling is exactly. Missing you or missing loving and being loved. Or both. Are they linked or are they separate? Can I miss loving and being loved by you at the same time as loving and being loved by someone else? Isn't that betrayal?

Lord knows I miss you. Every second of every day. Everything is measured in With Jane and Without Jane. Everything I see is judged by whether you would like it or not. Every joke I hear makes me think: Jane would/would not have liked that. But can I miss you this much and still think: I'd like someone to care for that is not Jane?

I guess the fact that I have just burst in to tears writing this gives me the answer. It is you that I miss. Your arms. Your smile. Your skin. Your hug. Your cuddle. Your wit. Your love for me. My love for you. And as far as I can see right now, it will always be you. You told me to go and find someone else and I am sure I will at some point. But how will I know that what I am missing is being loved and not just being loved by YOU? How will I know when I am ready to accept someone else for who they are, rather than projecting you upon them and setting them up to fail by comparison?

You used to smile your understanding smile when once again I was holding both ends of a conversation. When something looked like a discussion between two people but in reality I was not looking for advice but just someone to talk at whilst I worked things out in my head. Or out loud. With input from you actively discouraged.

See, at least that is something you can still do for me.

No idea what this entire stream of thoughts was for. But there you have it.

Love you.
Xxx

PS: I spent the evening being told all about Malvern Girls' College, playing Shithead, evading the motion sensors in the corridors and the back pages of DIVA Magazine. You'll know what that means.
X
Keep Reading: "I want to be loved...by you?"

Christmas without You: Doing OK

28 December 2011

Angel,

M and I went snowboarding again today. I'm afraid I have turned him against skiing. Sorry. I know you would not approve. I was wearing your jacket and your goggles. Your helmet does not fit me. Your head was too big! Your sister has asked if she can have your ski boots. Of course she can. I won't use them and I would rather they get used. She did not want your blades though. 

Anyway....yes...snow. It feels very strange to be in the snow without you swishing past at high speed at times. It is good for me to be here in New Mexico at Christmas but it also feels a bit weird because it is so separate from real life. I could almost pretend I am on a holiday and you just happened not to come along. I know, I know, we never went away without each other but still....it is the idea that you might still be there when I come back.

All in all I am having a good time. In fact, the only times I get upset is when I write these blogs. It is easy to keep busy with all kinds of things an new experiences ad impressions of a place I have never been to. But when I am writing you a letter, I am reminded again of the fact that you are not there and that you will never read these letters, no matter how many I write. 

I was going to write more but I can't as I am crying too much. 

I wish I could send you a text to say I am doing OK and that I miss you. And that you would text me back to say the bed is cold without me and that you are keeping my side warm. But I know you won't. I know you never will again. And it breaks my heart every day. 
Keep Reading: "Christmas without You: Doing OK"

Merry Christmas, Angel

25 December 2011


Keep Reading: "Merry Christmas, Angel"

Christmas without you: Snowsports

24 December 2011

Liefie,

You used to tell me how fantastic the snow in North America is. How it is much better than the snow in France and that you would take me some day to see for myself.

Today I went snowboarding on Sandia Peak, just outside Albuquerque. I took A & M with me, although A was slightly reluctant at first. We agreed that you would probably be disappointed that they were both going snowboarding instead of skiing. Tough.

I gave them some tips & hints for a bit and then they had a 2-hour lesson. During that time I ventured out on my own. There was hardly anybody out there between the trees on the un-groomed pistes. I missed you. You were right: it is beautiful in North America on the slopes and the snow is better than in France.

I sat down halfway down a nice run through the trees and thought of you. The wind blew snow off the trees. The falling snow looked like fairy dust in the bright sunlight. I was expecting to feel some deeply powerful emotional things, being there without you. But instead, I felt nothing. Just emptiness. I wanted to cry but no tears came. I don't think I was upset. It was just weird not having you to share it with.

The evening finished with a nice session in the hottub in the backgarden. You hated hottubs so I don't feel too bad about enjoying that.

So far this trip is good fun. However, I am starting to wonder if it was not such a good idea after all to run away from Christmas. I mean, I read from other widows having an excruciatingly difficult time at Christmas and I seem, once again, to be doing quite OK. Some general sadness but no big breakdown. Could that be because I have run away to the US instead of staying home and facing the music? Should I not be facing (any possible) pain and loss head on?

I don't know. I miss your company, I miss your jokes, I miss your smile, you touch, your kiss, your smell, your wit. Everything. And yet I appear to be functioning without you. And Yet I appear to be able to have fun without you. What does that mean?

I love you. Life without you is pretty monotonous. Yes I know I am doing loads of stuff, but emotionally speaking, it is all pretty meh... I wish you were not dead. I wish it was still last year. Or the year before that. Or the 6 years before that....

Jane in December 2010.
I love you

xx
Keep Reading: "Christmas without you: Snowsports"

Christmas without You: A walk through the snow

22 December 2011

Liefie,

Saw my first bit of proper National Park today. We drove to the Kasha-Katuwe Tent Rocks National Monument, about an hour out of the city. It was snowing heavily and at some point we weren't sure if it was safe to hiking once we got there. I am very glad we persevered though.
It was really lovely. Wrapped up warm, we hiked through the canyon for a couple of hours. You would have loved it. Although I know you were also prone to a bout of laziness so not sure if you would have enjoyed the long walk :-) I do recall a few times when we were on holiday when we drove somewhere for a walk, only for you to look around after leaving the car and saying: Seen it, now let's have tea somewhere, I don't fancy this long walk. I secretly loved your laziness because often I would think the same thing but did not want to say it :-)

Either way...the snow was lovely and cold. On the way back to the car, I walked ahead of A & M and had a bit of a cry. I missed you so much and I was so sad you were not able to share this with me. That I could not share my excitement with you. That I could not walk hand in hand with you whilst smiling and admiring nature.

A. caught up with me and silently took my hand. We walked hand in hand for a while. I guess we were both missing you.

In the evening, we went to a basketball game for the University of New Mexico. Quite the experience. The singing of the national anthem, people standing with their hands on their hearts. Certainly more fun than going to a university game in England!




M. is putting up tinsel and lights around the house, Paul McCartney is simply having a wonderful christmas time, there is snow on the ground, I am with your friend in New Mexico. I miss you terribly.

I love you.

xx
Keep Reading: "Christmas without You: A walk through the snow"

Christmas without You: I'm here.

21 December 2011

Liefie,

Aidan & Matt have a very nice spacious home with a pool and hottub in the garden. Both are covered with snow at the moment but I am sure I'll get to use the hottub before I leave.

Their three cats are really rather cute. You would love the snow. Today we are apparently going for a little drive around the area. I can see the mountains from my bedroom. It looks very exciting. Remember how you said you would take me skiing in North America some day? Well, I'm here now. And you are not.

I know you would never forgive me if I went to snowy America and not go out to play on the slopes. Aidan wants to learn to ski but I can not teach her. So I'm afraid I will have to turn her in to a snowboarder. Sorry. I know that is sacrilege in your eyes. Tough. You are not here to stop me. Hahaha! I am victorious. I am looking forward to the snowboarding because it will be a little easier to do it this way: as part of this trip, rather than having a full-on snow holiday on my own for the first time. Then I would just feel so alone all the time. Hopefully next time when I do go on my own, it won't feel so daunting.

Things I have learned about America already:

- It IS possible to have towels that are both soft AND absorbent
- Packaging really IS a lot bigger than in Britain
- Cars are not cars. They are trucks. And they are enormous.
- People really Do say: England, is that in France?

I know, so far that is not much to have discovered. But there will hopefully be more to write about soon.

I know I have said this before but I really really miss you. You would so have enjoyed the adventure. Aidan said that she would like to think that if you were still alive, we would still have come over for Christmas together.

Tonight I will be finally sending you the Chinese lantern we got for your birthday. There is no wind in this country and I brought it along. I know it is not your birthday anymore but I hope you don't mind.

xx
Keep Reading: "Christmas without You: I'm here."

Christmas without You: The Trip

20 December 2011

Liefie,

I am waiting around Gatwick Airport at this unholy hour of 4.50am, waiting for my flight to the USA to board. I just could not face Christmas with family this year. Not yours, not mine. Of course if you are 'out there' you already know all this so not sure why I am writing this down. I now understand why people are desperate to believe there is something after death. Some way to answer all the questions that have remained unanswered. All the questions that have popped in to my head since you died.
We both never believed there is anything after death. We put our faith in science. But that does not mean that I don't wish sometimes that you could hear me. Or better, that I could hear you.

Anyway... I must thank you for your good taste in friends. I guess going to Malvern means you have friends for life, even if you did not see them very often. Well, your friends are taking good care of me. I have been to see Vicki in Manchester, had dinner with Abi and on your birthday earlier this month, Vicki and Laura came to Northampton to raise a glass to you.

And now I am off to the USA to spend Christmas & NYE with Aidan & Matt. They invited me before I even knew I needed to go. And I need to go. Away from home. Away from here. But not away from you. I will be away from everything but because I am with someone who knew you, there is plenty of space and opportunity for me to think of you and to talk about you. I just did not think you would mind if I did all that thinking and talking whilst sitting in a hottub in New Mexico.

Bear and me in the bear cardigan
(not to be confused with your bear jumper)

I take you with me wherever I go. Not that I carry your ashes around with me. But the next best thing: Bear. Remember Bear. He has been with us since we met. When I first gave him to you when your nan died and I could not be with you. You held Bear when you were ill. You held him when you died. And now I hold him every night. Sticking with the bear-theme, I am wearing the cardigan I bought you in Scotland in January this year. The one that makes you look like a bear. Although you said it made you look like a giant brown poo.



I am shattered before I have even set foot on the plane. I hope Aidan does not mind me sleeping right away once I arrive.

I miss you. It is completely wrong to be making this trip without you. Since you can not be with me, I will just tell you all about it as the days pass. I love you.
Keep Reading: "Christmas without You: The Trip"

Christmas without Jane

19 December 2011

When Jane died in May this year, Christmas seemed a century away. I was looking at surviving hour by hour, day by day. Losing my 27 year-old wife to a brain tumour after 8 years together was enough to handle. I thought that by the time Christmas came around, I would be over the worst and more than able to deal with it.

Jane in the snow. Christmas 2010.
Wrong.

Grief is not about how long it has been since I last saw Jane. How long since I last held her hand, that morning in the hospice when she took her last breath. It is about going through this new life, having to do everything on my own again. Every day brings a new 'first'. First dinner party without Jane. First camping trip without Jane. First evening of coming home after work to an empty house.

First Christmas without Jane.

We loved Christmas. We knew last year it would be Jane's last and having a white Christmas was so perfect. The photos of Jane in the snow are incredibly dear to me now. I want to be with Jane this Christmas and if that is not possible, I want to be with someone who was close to her. Unfortunately I have very little contact with Jane's family so they are not an option. My folks live in The Netherlands. They want to give me comfort and warmth and share my pain. But they only knew Jane through me, from our 2 visits per year.

I have found a compromise. I am spending Christmas in the USA with Jane's best friend who moved out there a few months after the funeral. Away from everything that reminds me of Jane, this friend has new stories to tell, photos to share, tears to cry. Yes, I will have to face it next year, but for now, escaping into memories is the best I can do.

(This is the text I submitted for an article in DIVA Magazine about surviving Christmas this year. It was published in their January/February 2012 issue which you can order on the DIVA website.)
Keep Reading: "Christmas without Jane"

Grief or sick?

15 December 2011

I am a little over 6 months and I have noticed something rather odd lately. I have gone back to looking at info about brain tumours, reading about cancers, radiotherapy, chemotherapy, Astrocytomas, life expectancy etc. Like I used to do when Jane was still alive. I have also started listening to the music we played at Jane's funeral again, specifically BECAUSE it was played then. It does not make me any more sad, nor am I trying to make myself cry. I don't really know why I am doing this or what purpose it serves.

In some weird, sick way, I wonder if it has something to do with the fact that life was incredibly hectic in Jane's last 5 months and since then, emotionally at least, it seems to have just... well...stopped. Could it be that I am trying to regain some of the feeling of 'excitement'? Am I trying to recreate the state of heightened mental alertness or something, like adrenalin junkies do?

Not sure if this is related but as someone with ADHD (Attention Deficit Hyperactivity Disorder), I function quite well when I am in a state of permanent alert. Which of course I was with Jane. Always on my toes, always aware of the need to care for her, always making sure everything was fine. Bot mentally and physically, I am was constantly responsible for something.

I would have thought I would want to forget the period of Jane's illness as soon as possible, or at least deal with the emotions from that period and move on. Instead I find myself re-living parts of it. Not in an obsessive way or in a way that is upsetting or traumatic. But in what way exactly I don't know. I know it is not 'reliving' in the sense that people say they do after an accident or when they have nightmares about something that has happened to them.

I just think about it a lot. Does that mean I wish I could have those days back? Those days of illness, sadness, fear and pain? Those days of feeling almost one with the person I love most. The days when everything I did, I did for her, out of love for someone who needed me. Is that what I miss? It is all of it and more.

But I am confused by this. If I am not reliving this period in order to feel upset and work through my tears, why would I want to do it? Could it be as simple as 'it is an activity I used to do a lot and suddenly that activity has stopped and just like with anything that was a huge thing in your life, you have to wean yourself off it somehow?

It would make more sense to me if this need to re-visit was somehow driving me to get active in the fight against brain tumours or something. But that is not it. It never was back then for Jane and me and it isn't for me now.

Am I some sick person who thrives on other people's terminal illness because it is 'exciting'?

What the fuck is going on here?

Update: After a bit of thinking and discussing this with my Facebook friends, I have gained a little more insight in this, I think. I have realised I have not really described properly what I am feeling.

The time of Jane's illness was so hectic and I was always on the go. I love being like that. Now everything is calm and quiet and I feel flat and uninspired. Does that make sense? What I miss is not the time Jane was ill but the fact that I had a single purpose in life and felt in a mode of 'hyper focus'. It just happened to be caused by Jane's illness. I guess I thrive best on drama, whatever kind it is.

Although of course I did not want Jane to be ill, her last 10 months were also the most touching and loving time I have ever spent with anyone or ever could have hope to spend with anyone...such conflicting emotions.
Keep Reading: "Grief or sick?"

Grief interrupted

12 December 2011

The past 4 days I have been completely slammed with work. I mean: start at 7am and not get back home until after 10pm with no real break at any point. I have been too busy to think of anything.

I have realised how important it is to have time to myself.

Time to grieve.

I have not cried in 4 days. I have not felt sad in 4 days. I have not felt happy in 4 days. I have felt nothing in 4 days. Too busy working.

Only 4 days and already I hate this emptiness. I guess this is how people hide from their grief and pain. They bury themselves in work so that no other thoughts can enter their head.

Me, I prefer 'active grieving'. I miss grieving. Does that make sense? I know I need to feel the pain in order to learn how to live with it. Feeling nothing in the past 4 days has felt wrong. I want to feel something but I have simply not had the time or opportunity.

Luckily my rota is better for next week. A few evenings at home, alone. That will give me a chance to let my emotions catch up a bit. Not so much that I want to spend some time crying, but I have not had any chance to think about Jane for the past 4 days. And I miss that. The quiet contemplation, the happy memories and the sad ones.

What a weird feeling to feel absolutely nothing. I am very uncomfortable with that.
Keep Reading: "Grief interrupted"

Useless things

08 December 2011

Sometimes it does not take much to bring on the feeling of total loss and loneliness. How the simple sight of a ski helmet can remind me of "Never Again" and the pointlessness of everything.



France 2006

I am sorting through stuff to take with me on my Avoid Christmas trip to the USA. As it is snowing overthere, I had to open the box with all our ski and snowboard gear. Jane was an excellent skier. Now I am sitting here in my chair, wearing her ski jacket and her scarf and I am just crying and crying. I desperately want to feel in touch with some part of her but there just is nothing there....
Keep Reading: "Useless things"

Aunti Jane is a Star

04 December 2011

We used to visit Holland a couple of times a year. If that. My sister's two daughters however, knew exactly who we were. She had made a conscious effort to show them pictures of us so they would recognise us when we did come over. When Jane died, my sister explained to her that Aunti Jane was very ill and that people who are old or very ill die. And when they die, they become little stars. This tied in neatly with the cemetary that is near their house. My sister explained that when people become Stars, a cemetary is where we bury their pelt*

After Jane's funeral, I went to visit my family in Holland for a week. The eldest of my neices, F. ran to me as soon as she saw me and said: Aunti Marieke, Aunti Marieke, Aunti Jane is now a star.

She then went on to explain that Aunti Jane could be seen at night in the sky but that she was unsure which of the many stars was Aunti Jane. She looked at me and said: Now you are all alone. Are you sad?

Throughout the week, she kept mentioning Aunti Jane at times and asking me about being alone.

Last week, I was in Holland again, 6 months after Jane's death. My eldest niece once again asked me about Aunti Jane, that she is a star etc. As we were playing together, she looked at me and said: are you still all alone without Aunti Jane? I told her I was. We played on and she mumbled, whilst drawing a random picture: Now you have nobody.

A few days later, we were outside in the dark. In the sky was a single very bright star. Without prompting, she pointed at it and said: That is Aunti Jane there. The other stars are not very bright so they can't be Aunti Jane.

For a little girl of 4 (5?) I find that very impressive. Not only is she aware of death (in her own child-like way), she also realises death means Gone Forever. And that this creates emptiness and loneliness for those left behind.

It is very touching that she cares and remembers. The first few times she brought this up, especially on the first trip, my parents and my sister winced. They were worried the direct approach would upset me. In reality, I really like the disarming honesty of children. They are full of questions and just want to ask them. They are not yet hindered by social conventions about things like death. They don't worry about upsetting me when they ask their questions. Sometimes that is bad but most of the time, in my case, I quite like it. A direct question means I can just talk about Aunti Jane for a bit :)

I wish more people would just come up to me and ask: Are you feeling sad because you are all alone?

* The word my sister used for pelt was 'velletje'. This is a dimminutive Dutch word for skin or thin membrane. Velletje is most commonly used when referring to the pelt of a small animal. Using this term neatly avoided using the more confrontational word 'bodies'.
Keep Reading: "Aunti Jane is a Star"

Six months

30 November 2011















I don't know where you are, or even IF you are. Probably not. I am still here 6 months on. Sometimes barely living. Other times I think I am ok. But I will never again be as OK as I was with you. I miss you.
Keep Reading: "Six months"

Dignity in dying?

28 November 2011

In a couple of days it will be 6 months since Jane died. In those six months I have come to terms with many of the things that have happened before and after her death. Now that I work in the home care sector myself, I am acutely aware of some things people (including myself) did wrong when caring for Jane. I don't blame myself for any of it because I did the best I could. But some things make me very sad when thinking about how awfully exposed and vulnerable Jane must have felt. And she was not able to tell me. Not able to tell me that perhaps she wanted people to knock before they entered the bedroom etc. Just because I did not mind, did not mean she did not mind. But I never asked. And she could never tell.

Once, Jane had a male carer coming in and her face changed. I asked her if she felt uncomfortable with him washing her. She managed to indicate that she was and so I sorted it so that she would no longer have male carers. Maybe that is being picky or unfair to those carers that want to help but no man had ever seen Jane's private parts and a few weeks before her death did not strike me as a good time to change that habit.

In my recent training, a lot of time was spent on how to preserve the dignity of the patients by doing really simple things. For example, sometimes Jane would be on the commode in the bedroom and I would be making the bed. Since we were so close, it never occurred to me that it would be nice of me to leave Jane alone for a few moments, even if I just hovered outside the bedroom door. Instead of being around when she was doing her private business. The fact that Jane had lost some of her inhibitions due to the tumour did not mean I should not observe them. But I didn't. I just did not think about it. I did nothing to embarrass her or anything like that. But when you are together for so long, you get quite comfortable around each other and stuff we used to do kind of got pushed to the side for the sake of practicality. We never used to share the bathroom. So why did the fact that Jane could no longer go on her own mean that I had to stay in there with her?

I don't know, but I did.

I did not once consider that hoisting her in and out of the bed might be making her feel very undignified and upset. I was thinking in such a practical way that all I could see was how useful the hoist was in getting her in and out of bed, enabling Jane to be in the living room with me and her visitors. I did not think to consider that even if Jane would appreciate the practical use of the hoist, it might still be extremely upsetting for her to have to even need one in the first place. Why did this not occur to me?

I don't know, but it didn't.

When I think about this, it makes me cry. (I am crying as I type this). It just makes me so incredibly sad to think she must have felt like an object, rather than a person at times. People talking about her, (including me and the carers) over her head, at her bedside as if she wasn't there. Nothing delicate, nasty or gossipy as such, but just stuff like: what does Jane want for breakfast, does she need the toilet, etc. Just because we already knew Jane was unable to answer does not mean we should not have addressed her FIRST with those questions and then only come to a decision if she was unable to answer. That would at least have given Jane the feeling of having some say in what was happening to her.

Mind you, it wasn't always like that. Just that we all slipped up sometimes and we should all have spent a little more time on making sure Jane's dignity, both in choices and in personal care, was the highest priority.

Two examples stand out that are very upsetting for me when I think about it. So I can only imagine how upsetting it must have been for Jane. In both cases, in retrospect, I failed to put Jane's feelings and well-being first.

The first one is related to the use of the hoist to put Jane in a chair in the living room. I posted about the nightmare we had when we first tried to use it in this blog post: Difficult Weekend.. My current training emphasises over and over again that all staff must be trained to use equipment and if you are not trained, you must not use it, no matter how much the patient/family would like you to. The carers did not know how to use the sling Jane was given when they delivered the hoist. They should have said: sorry, we can't do it.

But they didn't. Because they knew how much I liked for Jane to be in the living room. And because they thought: How hard can this be?

This was a big mistake. They had no idea of what to do. We all faffed around the bed, rolling Jane around to get the sling around her body, lifting her, putting her back down again when we weren't sure. Finally we decided to try it and hoisted Jane off the bed. Immediately she began to slip out of the sling and it was obvious she was going to fall out of it, on to the floor. I panicked and thought I noticed Jane had wet herself as well. So we quickly put her back on the bed and decided to leave her in bed for the day since we clearly did not know how to use the hoist.

I cried. I apologised to Jane. But the tears in her eyes broke my heart. She must have felt like a piece of meat on a butcher's hook. Suffer the indignity of being a Guinea pig.

The next day, the carers tried again. This time it almost went right but when putting Jane back in to bed, she once again slipped out of the sling and we had to grab her by the arms and legs and throw her on the bed to avoid a fall. Once again I cried. Once again, Jane had tears in her eyes.

It turned out that the sling we used was only suitable for people with good upper body strength. Something which Jane obviously did not have. Secondly, the carers were not trained to use that sling, even if it had been the correct one. And thirdly, I was so keen to get Jane in the chair that I did not realise the benefits of being in the chair might not weigh up against the terrible indignity Jane suffered by being in the sling.

Someone should have said: we can not do this. I know that person wasn't me since I was not a professional carer then. I know the carers were at fault. But if I wasn't looking out for Jane, then who was going to? Why did I not stop them? Why was it so important for me to do this hoisting? The carers should have said: Sorry but you will have to wait until Monday when our supervisor can give us training or come to Jane and give her the correct sling.

Or what about the two district nurses who came in one night to put in a catheter? They took the duvet covers off, propped Jane's legs up and proceeded to spend half an hour prodding the catheter in to different holes, talking to each other about how difficult it was to see, shining a torch on Jane's private parts. I held Jane's hand as she winced in pain a couple of times. A tear rolled down her cheek. It never occurred to me to cover her up with the duvet as much as possible. After all, she had a t-shirt on. It never occurred to the nurses to talk to Jane about what they were doing to her. After all, she was unable to understand. So they talked to me, I talked to them and other than me soothing Jane, nobody made her feel part of what they were doing to her body.

I know better now. And that is what makes this so upsetting. I *know* I did what I could. I *know* the carers should have done a better job at times. But even so. Some of this seems so obvious to me now. Why did I not think about it back then. Just a small things I could have done to make things a little more dignified for Jane.

I cry when I think about this. I am determined to make sure the people I care for will never have to feel like their dignity is just an afterthought.
Keep Reading: "Dignity in dying?"

Weird ways of missing Jane: Excel spreadsheets

22 November 2011

Jane was a wizard with Microsoft Excel. If you were a friend of Jane, it is VERY likely that at some point you asked her for advise on a spreadhseet related matter.

Complicated formulas? Ask Jane.
Making a budget spreadhseet with automated formulas that automatically calculates stuff? Ask Jane.
A Gantt chart that automatically updates itself when you change a detail? Ask Jane.


She did not know this because she knew Excel in detail. She knew this because her mathematical brain realised that there must be a way to capture your requirement in a formula. She would think of that formula and then seek a way to implement that formula in to Excel.

Many times I would ring her from work with a quick question about a problem I was having. She would usually solve the problem for me whilst I was still on the phone. In exceptional circumstances, she would call me back a few minutes later with the answer.

This evening, I am trying to put together a cleaning rota for my shared house. There are 5 tasks and 5 rooms/occupants. Easy enough I hear you say.

However, there are 2 bathrooms. Bathroom 1 is only used by rooms 1 and 2. Bathroom 2 is only used by rooms 3, 4 and 5. So those cleaning tasks are fixed. Leaving the other 3 jobs to be allocated fairly. Obviously the problem is that bathroom 1 only has 2 people cleaning it and bathroom 3 is on a 3-person cycle.

Jane would know how to do this. She would first think of a formula that would fit this pattern. Then she would look at how to implement this formula in Excel. She would have scoffed at my method of doing it by hand.

Never thought a spreadsheet would break my heart.....
Keep Reading: "Weird ways of missing Jane: Excel spreadsheets"

The Widow Clique

21 November 2011

Warning: Long self-indulgent post. Written more to get stuff off my chest than to inform the world... If you can be bothered to read until the end, you are impressive.

Losing your partner is like nothing else. It is not like losing your child, parent or dear pet. And it is certainly nothing like divorce. It is unique. Not worse. Different.

Since I don't know any other widows, I went online to look for support and understanding from those who experienced the same kind of pain of losing your spouse at a young age. My first impression of the messageboard was that many people were just so....angry.


I have had a lot of emotions about Jane's death but anger is not really one of them. Nobody is to blame for her death. The doctors did the best they could. There is no God so nobody to blame. So who am I supposed to be angry at?

Much of the anger of the people on the messageboard seems to be directed at those people they refer to as a DGI: Don't Get It. Cruel remarks, ignorant invitations and evil utterances from people that are supposed to be friends.

Things such as: Now he is dead, it enables you to travel. Are you not a little glad he is gone?
Or: She's been gone for 3 months and you are still not ready to date again?
Or: I know exactly how you feel because my cat died last month and I am very sad about that.

People really say that? What kind of friends and family do these people have? No wonder they are angry. No wonder they flock to a messageboard to vent. However, there was also a lot of anger that I did not understand. Anger about totally innocent remarks that I just could not interpret they way they did. Quite apart from the fact that I don't like the idea of dividing the world in to Good People (Widows) and Bad People (DGIs who have to prove they are wiling to try and understand before they are allowed in to the Understands category, although they will never really be accepted there).

Like the woman who was angry at her friends for inviting her to a dinner party. How dare these people think she would enjoy spending the evening with a married couple, having to watch them be happy together and pretend all was fine when she had just lost her future. How insensitive of these friends. Very DGI.

Or the woman who felt incredibly annoyed when her neighbour invited her to the neighbourhood BBQ. How dare this woman think she would just be able to enjoy herself? Spend the afternoon with happy families around her, talking to people who really don't give a toss about how devastated she is feeling and most certainly don't want to hear about her grief. How insensitive! Typical DGI.

Pardon? I might be missing something but how did these people even make that leap? How can an invitation, probably extended by people who care and wish to give you a chance to be amongst other people be turned around into something that is apparently deliberately nasty? What is wrong with thinking: They mean well but I am not ready for that. Why is it their fault for even asking?

At times I would point out that these people most likely had good intentions and that I was at a loss as to understand why this was an example of 'DGI behaviour'. Surely by thinking like this, these people (mostly women) would push away people who might be able to offer support, thus prolonging their loneliness and increasing their anger? Wasn't gentle education the better way, instead of dismissive anger? I was told a few times that I was wrong.

I then committed a cardinal sin. I wrote a long post about seeking common ground with those who have not lost their spouses but may be able to understand parts of our pain.

The woman whose husband left her suddenly might understand the darkness and loneliness of spending Friday nights on her own with no company to look forward to at the weekend. She might understand how her future has been destroyed in the space of a few minutes. How all her hopes and dreams have to be re-evaluated. If she said: I understand how you feel because I am divorced, I would punch her on the nose. However, if she said: "I can imagine what those empty, cold evenings are like because I too feel like that some times." then we can talk about our shared pain and find understanding.

Or the guy who lost his dog. He should not say he understands my loss because he lost his dog. I will slap him. But he might say he understands how the house is suddenly so empty, so devoid of life, no joy.

I explained how this felt like a good way to get support from people you may initially think have 'nothing to offer'. And by actually mentioning this to your friends, it might break down their barriers. Because they might think: I have 'only' lost my grandmother so I should probably not talk about my loss to her. By doing this, you might open up a whole new avenue of support and dialogue with your friends.

It did not take long for the backlash to start. A few people wrote to say they agreed with me. Then a few people started telling me I should not tell other people how to grieve. That I was wrong. That I was being a DGI myself. They said that I was asking them to smile at people who compared their loss to the loss of a pet. That I was saying their spouse was worth no more than a dog. Or a goldfish.

One widow wrote a long message explaining how she was extremely worried about me and my grieving. That it was obvious that I was not doing it right. That I was clearly consumed by anger and jealousy and that I was lashing out at the other widows on this board by telling them they were doing it wrong. She even sent me her phone number and urged me to contact her when I got to the USA. When I kindly rebutted her, others came out of the dark, telling me I was entitled to my opinion, even if I was clearly wrong. That I was deliberately hurting and attacking people. That I should realise that my posts can be hurtful for people who are only recently widowed and that I should give people time to come to this kind of rationalisation on their own. Clearly the fact that I realised all this after only being a widow for 6 months made no difference.

For a couple of posts, I tried to explain they were misinterpreting my words. This was followed only by more accusations of 'not being open to other people's opinions'. My anger and pain were clearly hidden under a blanket of detached rationalisation.....

I gave up. I told people I no longer wished to be part of the messageboard if the only 'correct' way of grieving was to be angry at people and demand the world revolves around you at all times, no matter what other people around you might have gone through or have to offer. Apparently, this too was a sign of my thinly veiled anger and jealousy (at who was not quite clear, but they were all convinced I was angry). My departure was greeted with: Don't let the door hit your ass on the way out...

Wow....I mean.... really?

Needless to say none of these people has ever read my blog or they would have known I am a lot of things but not angry or close-minded. It does not bother me really. No really. It does not anger me. It has just completely confused me. I can not for the life of me understand why I have offended people so much. I hate offending people and if I did say something offensive, I would like to know what it is exactly so that maybe I can adjust my words for next time. But my repeated asking for the exact offending words was greeted by: I am not even going to bother because you are clearly not willing to listen....

I find human emotions often very confusing. I like people to explain why something upsets them so I can learn and understand them better. It is just incredibly sad that even in a place that is supposed to offer support to people in a similar situation, there is a strict rule on how you are supposed to behave and disagreeing is not allowed.

I guess I will just stick to me real life friends. Because although none of them have lost their partners, most of them understand me perfectly fine.
Keep Reading: "The Widow Clique"

How grieving changes

16 November 2011

I miss Jane. But when I think of Jane, I think of Jane the way she was the last 10 months of her life. When I see pictures or watch footage of the last 10 months, I get a lot more emotional than when thinking of the Jane I married years ago. That Jane seems so far away. Almost a different person that needs to be mourned separately.

Why? I don't really know. The last year we had together was so incredibly intense. It was filed with nothing but love. My love for her reached a depth I never thought possible. The feeling of being responsible for her, that it was up to me to make her as happy as possible and to keep her safe was rewarding. Yes, in a selfish way, it gave me a purpose. The feeling of being needed by someone you love so much is a very powerful stimulant. It keeps you going when you would otherwise have given up.

And frankly, Jane was just very endearing and cute when she was ill. Yes, it was sad to see her mental capacity decline but on the other hand, she also became more 'cute': she wanted to cuddle all the time, wanted to hold my hand whenever we stepped outside, told me she loved me all the time, trusted me, smiled at me. All the things we sometimes forget to do when we are living busy lives.
This Jane was only Here and Now.
She was not our past and not our future.

I miss caring for Jane. I miss my hand being held. I miss the smile she gave me when we were watching Doc Martin. I miss her. But......

That Jane was ill. I miss that Jane immensely. But to a certain extend, I can accept that she died. That Jane was a different version of my Jane. That Jane was ill. That Jane was dying. The outcome was inevitable. That Jane was always going to be temporary. That Jane was suffering and is no longer suffering now. So I can more or less accept that without anger. Just sadness.

Recently, when thinking of Jane, I have started to think of the healthy, happy Jane I knew for so many years. The vibrant, beautiful, witty, funny and fiercely intelligent woman who stole my heart. And I think of the good times we had. Of the future we had planned. Of all she had to offer to the world. Of what we had together.

This Jane had a future and a past. With me.
This Jane was my life. My future. 

Of what we will never have.

And I cry. And cry. And cry.

And the feeling of incredulity has arrived. I constantly wonder: How the FUCK did this happen to her. To me. To us? What happened?

But mostly: I miss her so much. The future looks so empty. I am not saying I will never meet anyone else. I probably will. But the idea of never having Jane in my future is beyond words.

And I cry. And cry. Last week was absolutely terrible. I was unable to function. I just cried and cried. Did not go to college. I just cried.

I have massive pictures of Jane on my wall. They gave me comfort when I was mourning the ill Jane. Because they reminded me of what she used to look like. They helped me remember the happy, healthy Jane. Now these same pictures make me cry. Because they are not just pictures of Jane anymore. They have become knives of memories that cut so deep. Like they are actively trying to say: LOOK AT THE LIFE YOU ARE MISSING! The pictures are rubbing in the fact that I will never have that again with Jane.

I am worried that this phase of mourning will be much harder to overcome. Much harder to live with. It is easier to accept a sick woman has died than a healthy one.

I am so incredibly lost. So incredibly sad. So incredibly empty.
Keep Reading: "How grieving changes"

Hallo Zij aan Zij lezers!

12 November 2011

Fijn dat je de moeite hebt genomen mijn website te bezoeken. Het doet me veel dat mensen die ik helemaal niet ken interesse tonen in Jane's verhaal.

Laat een reactie achter als je dat wilt. Ik vind het altijd fijn om te weten wat mensen denken. Of het nou gaat over mijn website, over wat ik schrijf, over je eigen ervaringen met een overleden partner, kanker, hersentumor etc. Nou ja, wat je ook maar kwijt wilt.

Je kunt me ook emailen als je dat prettiger vindt: msvink apestaart gmail.com.

Ten slotte wil ik je nog graag wijzen op Jane's website waar je onze reis van 6 jaar kunt volgen. Ik heb de hele tijd een weblog bijgehouden, vanaf de diagnose tot aan haar dood.

Ik zou het heel erg fijn vinden als je een donatie kunt maken aan het hospice dat zo ongeloofelijk goed voor Jane heeft gezorgd. Wij zijn daar allebei met zo veel respect en liefde behandeld dat ik dat nooit terug kan betalen met geld. Maar ik kan het wel proberen. Met jullie hulp. Of het nou 1 euro is of 100 euro. Elke cent helpt.

Klink de link voor Just Giving en dan kun je met je credit card of via PayPal doneren. Mocht je dat liever niet doen, geeft niks. Maar misschien kun je dan kijken of je iets voor je eigen lokale hospice kunt doen. Ze zijn altijd op zoek naar vrijwilligers.

In elk geval heel erg bedankt voor je bezoek en interesse.
Keep Reading: "Hallo Zij aan Zij lezers!"

Jane's Post: What Radiotherapy is really like

Going through files on Jane's laptop, I found this unfinished blogpost she wrote about her radiotherapy. It dates back to 19th March 2009. The radiotherapy had finished a month earlier and Jane was suffering with severe side effects from the treatment.

=========

I am going to try to convey what it is like to have finished radiotherapy and the side effects that go along with it. Whilst it hasn't all been plain sailing, the side effects to report at present (my treatment lasted for six weeks from 05/01/09 to 18/03/09) are tiredness, forgetfulness, stupidity and generally feeling like my brain is wrapped in cling film. I feel like I am totally unable to function.

Also, I am still on the steroids (tapering them off slowly) which means that I am quite hungry and need food. I try to eat fruit and healthy cereal. Thank the lord for cornflakes with raisins.

The tiredness is a direct effect of the treatment but it is not really known why this happens. If you are taking steroids these can also cause tiredness - particularly when you stop taking them. Travelling to the hospital for treatment can also be a cause of tiredness. Unfortunately, the tiredness does not go away immediately when the treatment ends, but usually carries on for at least six weeks. Getting better is a slow process. The steroids cause havoc with my appetite. I feel hungry all the time so I EAT EAT EAT. It's difficult to have any control but I must otherwise i'll just get bigger and bigger.

I don't fit into any of my jeans anymore so my wardrobe is limited to tracky Bs and PJ trousers. Both very comfy but not suitable for leaving the house. And i'm developing some shocking stretch marks which is probably the most upsetting part. I am losing weight slowly (too slowly) by eating sensible things - bleugh - and limiting portion sizes and going to the gym regularly. UGH. I have a scan in a couple of months to see what effect the radiotherapy has had. There's no point in doing it sooner because it will all look abnormal and will worry the radiographers. I will keep everyone updated with the results. I spoke to my consultant the other day who said I was looking well, which was nice. Made me feel less blimp-like.
Keep Reading: "Jane's Post: What Radiotherapy is really like"

Flowers

10 November 2011

Words can not express how much I hate buying flowers for Jane these days.

Keep Reading: "Flowers"

What it is really like to be a widow

08 November 2011

With Jane's death, I grieve the loss of so much more than someone I merely loved or was close to. I grieve instead the loss of the one I loved most deeply, cherished and felt the very closest to. The one I swore commitment to when we married. The one I shared the ultimate partnership with to live as one.

The one who embodied my true sense of home. The one who was my best friend and who was to be my companion for life. The one I confided in, depended on and trusted most. The one who really knew, understood and accepted me as I am. The one I felt safe and protected with. The one I shared private moments and intimate feelings with. The one I mated souls with.

But it is not just that this most precious person has been torn from my life, as unbearably heartbreaking as that alone is. With Jane's death came other losses I am grieving for:

The loss of who I was when I was with her.
The loss of the couple I was once half of.
The loss of the life partnership we once formed.
The loss of the 'wife' role I once embraced.
The loss of the life I once lived.
The loss of the plans we once made.
The loss of the dreams we once shared.
The loss of the future I once envisioned.

Amidst all this, I am also suddenly confronted with many hardships I never expected to face at this point in my life. Additional challenges less apparent to others but all too real and terrifying to me. I must now find it within myself:

To create a new identity.
To redefine my role in life.
To establish a new connection to the world.
To build a new network of social relationships.
To discover a new sense of purpose.
To formulate a new set of goals.
To decide on a new direction for my future.

And I have to do this without dishonouring my former life, but while suppressing bittersweet memories of that life, so that they not hold me back. Memories of happier times mostly, but also those of Jane's illness and death. I have to deal with the feelings of guilt and disloyalty as I attempt to forget and move forward, but with my heart still tied so tightly to the past.

And I have to do all these things at the lowest possible point of my life in the worst state imaginable. When I am the weakest, most vulnerable, most insecure, most isolated, most heartbroken and most emotionally exhausted I have ever been. Without that one person I am so used to relying on to help get me through life's greatest challenges. The one who, just by being there, would have provided me emotional comfort and support to draw upon, as well as the strength and confidence I need to complete those tasks and so much more.

But now I face all this alone.
Keep Reading: "What it is really like to be a widow"

Am I healing?

03 November 2011

It is now 5 months since Jane died. How am I doing? Am I healing? Are things easier now?

When Elisabeth Kubler-Ross introduced her 5 stages of grief (Denial, Anger, Bargaining, Depression and Acceptance), she meant well but in a way did a lot of damage. Those who have not experienced grief more or less expect us to go through these stages in a linear fashion, one after the other. That means that after a while, we should have reached stage 5: Acceptance.

Well let me tell you: the 5 stages are bullshit. I was never in denial or angry. Nor did I ever bargain with death. I never felt guilty. I feel regret about things I said or stuff we did not do. But not guilt. I accepted Jane's death from the moment she died.

So the only 'stage' left is depression. Well yes. The love of my life, my past, present and future has been taken away. Nothing left but darkness, loss and sadness. So I am depressed. Not suffering from depression. But I am depressed at the moment.

I have good times with people. I have no good times on my own. Ever. But why is it harder now than it was 3 months ago?

Healing happens when you encounter situations in life that you would have faced with your partner and suddenly you are alone facing them. And then you find you CAN live through those situations. And the second time that situation comes around, you will find you can cope better.

I believe this is why I, like so many widows, I found the first few months after Jane's death 'easier'. Those first few weeks and months, I was so engrossed in my loss that I did not really experience life. So I could not heal. Once I started to get back to life suddenly I was shopping and cooking for one, out with friends for whom life has more or less gone on as normal whilst my entire life and future lies in ruins before me. Bit by bit, I came across bits of life that used to include Jane but no longer do.

So instead of an all-covering grey blanket of loss and depression, it has now changed in to a daily parade of sharp moments of shock and loss. In the early days, I expected, and was expected, to cry all the time. These days, I can be 'perfectly fine', actually feeling ok and enjoying something when suddenly, out of the blue, something triggers a memory or emotion. And then I just crumble. And then it passes and I get up again. Until the next moment.

My pain has nothing to do with how long it has been since I last spoke to Jane or how long since I last touched her. Grief is about that one moment, no matter how long after her death, that one moment when I really need her and she's not there.

It is like walking around town, knowing there is a sniper waiting for you. You KNOW he will shoot but you don't know where he is or when he will strike. So you don't know what to avoid, where is safe.

This gives me two choices: I hide from my Grief Sniper by curling up in a ball in my house and never participate in life. This will mean more prolonged but more shallow grief. Or, I go on as normal as possible, knowing I will get hit and that there will be moments of very intense pain.

I choose life.

But please don't expect me to enjoy it yet.

============

PS: I took our wedding rings to a jeweler and asked them to create this necklace. I love it.
Keep Reading: "Am I healing?"

Christmas

28 October 2011

Christmas...Christmas...Christmas.

That dreaded time of year for everyone who has lost a loved one. So, before I do anything else, let's have a listen to Australian Tim Minchin's White Wine in the Sun. It is a beautiful song that, apart from the bit about his daughter, sums up how I feel about the whole thing. Or rather, how I used to feel about it.



The first Christmas without Jane.

Of course my family invited me, or perhaps even assumed, to spend Christmas with them. My parents and my sister and her family. And for some reason that I could not understand, I really realy did not want that. In fact, I could think of nothing worse.

But why? Not because of the company. I love being with my family. They are caring, lovely and have been wonderful throughout all this. And they loved Jane. So what could be better than spending Christmas with people who love me, care for me and know how much I loved Jane. If I cry, they will cry with me. If I laugh, they will understand that joy is likely to be short lived.

And yet...

It took me a couple of weeks to understand the problem. And even then, I might not be able to fully explain it.

Jane did not have many friends before we met. We were both socially a bit lazy, finding each other's company enough most of the time. So all the people I know in the UK are friends I made whilst we were together. Only a couple of people knew Jane before they knew me.

I have little or no real contact with Jane's family. I have met her mother twice since the funeral and her sister has vanished to Oxford. We were never really close. So I basically very very rarely have any contact with people from Jane's past. People who "represent" Jane. People who knew and loved Jane before I did. People with stories I don't know. People who were part of her life before I was. People who can "represent" her.

My friends will ask me how I am. And I tell them. Sometimes I even cry when I tell them. But there is very little Jane in my life because most people around me have been in my life at most 6 years and I have no connection with Jane and her past through them.

Apart from a couple of Jane's friends from school.

They are the closest thing to Jane I still have. Even if they were not my closest friends (one of them I only really met last year), they were important to Jane and so they are important to me. They are my link to a part of Jane that is forever lost to me. They have memories that I will now only be able to get from them because Jane can't tell me anymore. Oh, and the fact that I actually really like them...

And one of them invited me over for Christmas. In the USA where she now lives. And I am going.

Not so I can spend the entire Christmas talking about Jane. But for some reason the unspoken connection really matters to me.

But all this had to sort itself out in my head before I could tell my family I was going to spend Christmas not with the people who love me most but with a friend I have only recently come to know. Otherwise it would sound like I was simply saying: I just don't want to spend Christmas with you.

So there it is. My first Christmas without Jane. It will be horrible. Excruciating. With hopefully some enjoyable bits. But surviving it is the best I can aim for right now.
Keep Reading: "Christmas"

Do you care? I do.

24 October 2011

More than a week since the last post. Thanks to those who asked how I was doing. Nice to know some people are holding their breath waiting for news from me. My advice would be not to hold your breath. It might kill you :)

I guess the reason for the lack of posts is because life is a bit boring and tedious at the moment. I cry every day, am going to college and started training for my new job today. I am going to work as a home carer and I look forward to starting. It is a bit of an adjustment, not having worked for more than a year.

Last week in the local paper, just after having been offered the job as a regular home carer, I noticed that the same team that cared for Jane in her last 8 weeks are looking for new carers to join ther End of Life services. I would really like to join the team because I know what an incredible difference it made to me and Jane, having such great support. But it has only been 4 months & 3 weeks since Jane died. Is that too soon to work in palliative care? I think I will only know for sure once I am on the job.

But that is not good enough. Because I think that if it turns out that I am not ready and I break down, remembering all we went through, it might be a major setback in my grieving process. End of life care is special. It is extremely rewarding but also emotionally draining. You are not just dealing with the patient but also with their, often very anxious, family. I can do the actual work and caring. I think I can provide the caring without gettng upset. Because the person I care for is not Jane. But I fear I might struggle to deal with the upset family members. I worry that it might remind me too much of my own fears and feelings. I fear that if I cry, it won't be out of compassion for them, but my own grieving coming back to me. I am not explaining it very well but to me, there is a very big difference.

So after careful consideration, I have decided that this might simply be coming too early for me. If I can not feel sure about my ability to do the job right and to keep my emotions in check on the job, then I should not do it. Secondly, I don't want to put myself through the emotional pain of applying, only to be told by the applications team that their experience tells them I should not be doing the job. Nothing worse than other people telling you what you really already know deep down but are trying to ignore. I will go and be a regular home carer first and see how that goes.

On a different note, I have been to a few open days for university and I most definitely want to go to Plymouth University. Great open day, nice people, good facilities and beautiful nature on the doorstep. Now I just need to finish my application and send it off.

Finally, I have decisions to make about what to do for Christmas. Needless to say, I would prefer to hibernate for the entire month of December, thus skipping what would have been Jane's 28th birthday, Christmas and related festivities, and wake up on the other side on new year's eve. I will write more about that in a few days.
Keep Reading: "Do you care? I do."

A (Tena) pants shopping trip

13 October 2011

Memories are like a Ninja: They hide in the dark and you don't know they are there until they attack. And when they attack, it is fast and furious and there is no defence.

Last night after my biology class at college, I went to the supermarket. I was not feeling particularly sad as I walked around a little bit aimlessly, not sure what I needed. Shopping is always a bit depressing these days. I find supermarkets very overwhelming and confusing.

Many times in the past I would call Jane whilst shopping and ask her for help in calming me down and help me make sense of the enormous number of choices to be made when buying things. My ADHD means that making choices can be really stressful. She was always calm and understanding. Never seemed to think: Geez, you are 30+, surely you can do some shopping without trouble.

As I walked around, I came past the shelves with Tena Lady incontinence products. And then it happened. I froze on the spot. I stared at the various products on offer. The various types of pants in all kinds of sizes and pretty patterns. And I remembered all those times I had to buy them for Jane. How every shopping trip included large numbers of Pants.

Images of the times we had to struggle in small public toilets when her pants needed changing. Memories of how I could not leave the house without the Tena Bag: a bag with spare pants, babywipes and trousers. Reminders of our ski trip in Scotland when, after I had dressed Jane in all her ski gear with ski boots on and skis strapped to her feet, she spoke the words: I need a wee. Back to the toilets we went, all clothes off, sort it out and back out again. A delay of 20 minutes.

Reminders of when she trusted me. Reminders of when she let me help her. Reminders of how deeply we were connected.

Reminders of when she was still alive.

And I cried. I cried and cried. Right there, next to the Tena Lady pants. I did not want to give up and leave the shop because I did need food. So with silent tears streaming down my face, I wandered around the isles. As usual, people noticed but said nothing. Even when I asked a lovely lady where I could find the UHT milk, she smiled as if oblivious and pointed me in the right direction. Even the lady at the check out wished me a lovely rest of the evening, as I wiped the tears off my face...

All I wanted was for someone to ask: Are you ok? Grief in public is so incredibly lonely. I understand people are reluctant so I am not angry about it or anything. But the loneliness is insufferable. All you want is some kindness. Someone, ANYONE who notices you are crumbling. And when that doesn't happen, things just get worse. I wanted to scream: somebody please please please speak to me. Somebody please ask me why I am crying so I can say the words out loud: the love of my life died and I am not coping very well tonight.

Instead, I bought some roses for Jane and got in the car. And I cried and cried. Alone.

Next time I see Tena Pants, the effect will not be so dramatic. Now I know I can either avoid them or be in control of the situation because I know what might happen. The problem is the I simply have no idea at all what will bring back a painful memory. Absolutely anything can and I don't know until it happens. Because we used to have a normal life together, ANYTHING that happens in a normal life can bring back memories. So it is not a matter of simply avoiding things that might be upsetting. You don't KNOW which things are upsetting. Something that did not upset me yesterday might suddenly be very upsetting today.

Something tells me that I will have to go through every single part of normal life and experience all the surprising moments of pain. And only after having been through all of them will normal life not be a constant reminder of Jane's absence.

Finally, for the first time since Jane's cremation, I bought flowers for her. In my new room, it seems Jane has found her own spot. In the flat, her ashes were just moved around all the time.

Keep Reading: "A (Tena) pants shopping trip"

Getting rid of stuff

12 October 2011

I have just driven to a town 15 miles away to give 2 boxes of my Jane's clothes to the Cancer Research UK shop. I wanted it to go to the hospice shop as they cared for Jane so brilliantly but I just could not bear the idea of bumping in to someone in town wearing her clothes.
I still have one box which I am keeping but I am in tears now and had to stop on the way home to compose myself.
We used to joke about our clothes. We had the same clothes size for most of our relationship so when we moved in together  our wardrobes simply doubled and we just wore each other's stuff.
I have had to move from our lovely flat in to a tiny room in a shared house so I have been getting rid of so many things recently. Feels there is nothing left of our 8 years together but some pictures and my memories...
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StudyBed

11 October 2011

I am now properly set up in my new place. It is a big shock to the system, moving from our nice big flat into a small room. I have managed to squeeze a lot of my furniture into the new room and got rid of some other bits.

Today they delivered and installed my new StudyBed. It turns from desk in to bed in a second. It was a bit hefty on the cost side. And actually, the whole thing is a hit hefty! It takes up a lot of space, both as a desk and as a bed. But heyho, I am happy with it.

It took 2 friendly men 2 hours to put together though so taking it with me to University will be interesting...





Now I have no more excuses not to do homework and admin. Ugh!

Last night for the first time I had a dream about Jane.
I dreamt that I walked in to a room and two people were sitting in chairs in front of a fireplace, their backs turned towards me. They were both wearing a brown jumper, like the one Jane is wearing in this picture.



I spoke and they turned around. Jane was in the chair on the left, her sister on the right. I remember very specifically saying out loud: I KNOW this is not a dream because I am awake.

Jane smiled and I felt a sense of relief. I really *felt* that is my dream. The same feeling you get when you wake up from a really bad dream and you realise it was just a dream. I did not even feel extreme happiness. I just felt relief and the fear I had about Jane being dead was gone. She was sitting in the chair, proof that she was alive and well.

Then I woke up. For a second or two, I still felt happy. Then I realised it was a dream. Jane is still gone.

:'(
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Our trip to Stockholm

06 October 2011

Finally I made the time to put a video together of our trip to Stockholm in March this year.

Happy memories.

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Today

05 October 2011

I few years back, I heard a song about someone who loses a loved one. I liked it then. After Jane's passing, I remembered the song and tried to find it again. I only remembered one line of the lyrics but I emailed a DJ of a podcast where I *thought* heard it first. The man came back to me within minutes to give me all the details I needed. He said he would never forget that song. And neither will I now.

Here it is. It is pretty emotional. I was in tears when hearing it again. It is called "Today" by Rebecca Blackman.


Turn the light out
Leave the door
Like you're a small child again
This could be the last time
I say
See you in the morning
And you hear me walk downstairs

The TV's on
But I'm not listening
To the blurred stream of words
The newsreader's talking but
She doesn't know
What happened today

She hasn't been at the hospital
Waiting around
For results you don't want to hear
She didn't wake up forgetting
Them remember it wasn't a dream

Everyone's smiling
The sun's out
The weather's hot
I'm just trying to keep it together
So what about sandals and BBQ's
I really don't care

The TV's on but I'm not listening
To the blurred stream of words
The newsreader's reading news
But she don't know
What happened today

She hasn't been cancelling holidays
For three
Maybe two
She hasn't swallowed a lump in her throat
She didn't wake up forgetting
Then remember it all again

Settle down
I'll tuck you in
That's all I can do for now
I'll turn the light out
Leave the door


Be there a potion to drink
I'd make it for you
A dance that would heal
I'd dance
I can't help my jealousy
I don't like it
But it's there
They don't know what's been happening today

They haven't been at your bedside
Stroking your face
They haven't been there with you
Squeezing their hand
They didn't wake up forgetting
And for a second feel fine

They don't know what really happened today

You can listen to the song here: Rebecca Blackman
Keep Reading: "Today"

Moved

After Saturday's rather emotional outpouring of confusion, time for an update about my move.

On Sunday, I moved in to my new room. After living in a house and flat with Jane, moving back into a single room is a huge adjustment. My friends K & R came over on Sunday to help. As it turned out they were needed mostly for emotional support and to keep me from losing my mind. I was running around, achieving nothing until K said: Right. What am I actually supposed to be DOING here?

I took them to my new room and asked them to have a think of what furniture they thought I should take. They both decided the studybed would fit just fine, that it was just me having a complete panic. I ordered the bed yesterday. The last time I spent that amount of money was when I booked a trip for 2 to Stockholm in Februari! Geez.

In the end, the room looks ok. If I were a student, I would be pretty chuffed with a room like mine. But I am not a student. I am 36. And all I have to show for 8 years with Jane is a rise/recline chair and a handful of photographs. That's what is so hard. I look around my new room and think: This is what I have left? Yes I have stored some things at friends: camping gear, snowboard stuff, our double bed. But most things are more expensive to store than they would be to buy new. So logically, it makes sense to just sell them and replace them later. I am now a proper EBayer :)

My new place is nice enough. Here is a video.




My landlady, who is quite nice, also lives in the house. She is doing the refurbishments all by herself. And since she is as chaotic as I am, she is working on everything at the same time. Since I would really like her to finish the second bathroom first, I volunteered to paint the kitchen, just so that it would not distract her.

I enjoyed painting the first part yesterday. Today I am paintinting the ceiling.

It keeps me busy and gives me a feeling of actually accomplishing something.

Yes the room is small. Yes it is a step back. But at least I have people to talk to on a regular basis. I am not worried about being able to pay the rent.

There are good things about this.

Just wish I could show Jane how things are going.
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Moving on

01 October 2011

Tomorrow I am moving from our lovely big flat in to a tiny double room. Like stepping back in time almost 15 years.

Let's just say I am not coping as well as I thought I was. As I sit here on the floor of the flat amidst piles of flatpack furniture, clothes, memories and all kinds of other things I will have to leave behind, all I can do is cry.

I went to see my new room today and measured it. And it turns out that the fabulous new StudyBed I was going to purchase is most likely simply too big for the room. So I can not have it. A bed that turns from bed in to desk in a second seemed a brilliant idea. It meant I would not feel like being holed up in a tiny tiny bedroom all day. In a second, I would hide the bed and have a living room instead. But now it does not fit. And that small fact has broken the camel's back. I can not do this.

How did it come to this. Why did I not find a way so that I had enough money to stay here? Why didI not go back to work sooner so I maybe would not have had to move? Why did I jot get off my lazy arse and go back to work like so many other widows? Why does the fucking probate take so long? If that had been quicker, I would not have to move.

Ironically I may well have a job by the end of next week. And apparently probate is going 'well' and they may be able to release the cash part of my inheritance soon.

All too late.

It is all going wrong. I knew something was not right. It was all going too well. It was all so much easier than I thought it would be. I was waiting for something to happen. It could not be this easy to get on with life after losing the thing you love more than life itself.

It isn't. It isn't just difficult, it is virtually impossible.

Somebody please make this all go away. I don't want this anymore.
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My wife died recently and....

27 September 2011

I used to be perfectly able to say that sentence without breaking down in tears. It was a statement of fact, not the release of an emotion.

Lately however, I can't say it without crying. In front of complete strangers. Every time.

What is going on? It isn't the fact that it has suddenly hit me. It is the fact that it is slowly infiltrating every single part of my life. It pops up in everything I do.

I have realised this evening that there is a difference. When someone asks me why I am moving house, I can state a fact: my wife died and I need to save money.

However, when Jane's death is an explanation for my 'weakness' or an emotion, I can't say it without crying. Because it is not stating a fact. It is revealing something about my emotions.

This evening, just before Maths class, I walked up to two ladies with whom I had a little snappy exchange last week. I apologised for snapping at them (even when it wasn't my fault). I just wanted to say I was in a bad mood.

Instead I said: I was in a bad mood because my wife died and I am trying to get my life back together and I am feeling pretty shit most of the time so I am sorry I snapped at you I am not usually like that.

And I was in tears as I said it.

Later on, I spoke to the Maths teacher and I wanted to ask about absence. I wanted to know what the repercussions are if I miss a class. He asked why I seemed to think about missing classes in advance. So I wanted to say that I might not always feel up to going.

Instead I burst into tears again when I said: my wife recently died and I am not always feeling up to leaving the house so if it happens on a maths night, I might not make it to class and I don't want to get in trouble for it later.

I think this is all because it seems I have become more aware of the deeper emotional impact of Jane's death. Impact beyond the loneliness and the physical absence.

The insecurity when making decisions, when the person you trust most is not there to help.

The fear of spiders and the knowledge that nobody will solve it for you and hug you afterwards.

I miss doing nice things for the person I love and seeing her smile. Making someone happy is a deeply emotional and satisfying thing. I miss it.

Maybe these things are emerging now, slowly, because I am trying to return to normal life. So I come across every day situations where I never really thought of Jane because she was just there. What to have for dinner. What to watch on tv. What to do on a Saturday.

Shit. This post is not very coherent. In my head I had planned a well constructed post but clearly the thoughts are not crystalised yet. Maybe more later when I know what I am actually trying to say.

The bottom line is that I am a lot more teary these days. And that I really would like more crying with friends. But somehow I have started to feel like I am burdening people if I still talk about Jane so much.

I used to enjoy listening to the Indigo Girls in the car. Jane and I would sing along in 2-part harmony. Just after Jane died, I could listen to the music and remember the joy. These days, I can sing along but all I hear is the emptyness of a voice that is missing. And so I cry. But I don't stop singing. I usually end up shouting along to the music in tears.

The song "I believe in love" is about a couple trying to find common ground again and fighting for their relationship. It did not apply to Jane and me. But it had the following lines:

Most of what will happen now is way out of our hands
So just let it go, see where it lands

At that point, we would always take each other's hands and smile at eachother. We knew what we were saying there. We knew what was waiting for Jane around the corner.

Cheesy video alert for this song.
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Some little videos

I found a few little videos of Jane doing stuff. Nothing special. But they just made me smile. I had not seen these in absolute ages.

This was in 2007 when Jane & I went on holiday to Italy with my parents. Apparently my folks had just done the dishes and stuffed food waste down the sink. Much to Jane's irritation.



This second one is Jane carving the turkey at Christmas 2007. In Samurai style.

Keep Reading: "Some little videos"

Facebook dilemma

24 September 2011

Yesterday, the first two lines of a comedy song came to me.

We're married on Facebook, but not in real life
When is it time to unfriend my dead wife?


Unfortunately that's all I have...In my head I was going to write this funny, bittersweet song about the problem with social networking and death. In reality, I am rubbish at writing songs and I'm not that funny.

So feel free to take the idea and run with it.

Seriously though...when DO I unfriend Jane on Facebook? There are a number of relationship status options and none of them are acceptable to me.

Married: This is the current situation. I never really was married according to the law and since her death, I most certainly am no more. Yet this one means her picture is listed on my profile as my wife and it connects her to me.

Single: Not an option. I am not single by choice.

Widow: Would be the best choice. However, if you select your status as Widow, Facebook automatically freezes the profile of the person you previously listed as your spouse. And that means nobody has access to it anymore. It goes in to some state of limbo. It is frozen in time and nobody can send messages, post to the wall or anything. And I don't like that either. Because sometimes people still leave something on her wall. Or send her a message. I do.

Is in an open relationship with Jane Daniel Death does that to a relationship. But I don't like open relationships. It relates to monogamy and Jane & I always were completely devoted to eachother.

It's complicated:This might be the best option. Because it IS complicated. Well, it is for me. The good thing about this one is that you can still link to someone to be complicated with.

The thing is that if I end my relationship with Jane on Facebook, she will no longer appear anywhere on my profile. And since she is not making any new posts on Facebook, nobody will be reminded of her on Facebook. It will look like we were never in a relationship.

Like the list of recently dialled numbers or most used email addresses, she will slip down the list and eventually disappear completely.

I guess this is the modern day equivalent of deciding when to take your wedding ring off. One day I will be ready for it. When I can replace the wedding ring with something else. With happy memories instead of crushing sadness. When removing the ring or Facebook link means I am ready for something new to take its place. Rather than removing something and see a large gaping hole.

Ps: I need to say that the two lines of my 'song' popped in my head when listening to this brilliant Janis Ian song.
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Healing is an odd thing

20 September 2011

I left a comment on another blog about crying and healing.

We want the wound to heal but we seem to want a nice big scar to remind us how much it once hurt

Lately I have been crying a bit more regularly than before. About different things and with a different intensity. Previously the crying was mostly about the raw pain of the loss. The feeling of loneliness and the hole Jane has left in my life. Now it is more about specific things that remind me. A song, a tv show, a memory.

So does that mean I am healing?

I have addressed the strange conundrum of unwanted healing before. I want to heal. I want life to get better again. I want to be able to think of Jane without bursting in to tears. I want to think of a future without feeling guilty for even thinking about happiness that does not involve Jane.

And yet, I feel a sense of panic every time I realise the healing is happening. Not guilt really. But sadness. The healing train of life thunders on. I have no say in how fast it is going. I only know I can not get off because that would be disasterous. Sometimes it pauses at a station for a bit but it can not stay in the same place. I need to move on.

But seeing Jane not coming along on the trip, seeing her fall further behind, is distressing. I want the healing to stop. I don't want Jane to slip away from me.

But wait, did I not just say I want to feel better? I do. So why am I distressed about feeling better?

I think it is the realisation that Jane's memory is no replacement for Jane actually being alive and with me. A memory simply does not evoke the same feelings of love, joy, pleasure or sadness. And I miss feeling that. I miss the feeling in my stomach I used to get from just looking at her. I miss the physical surge of love, the overwhelming sense of adoration I used to get when I held her hand. So I have to say goodbye not only to Jane, but also to the strong emotions she evoked in me. And it seems I can not pick and choose. I can not say: I want the sadness to go away but hold on to the love and joy. It is all or nothing.

I don't like feeling sad. But I don't mind crying. Because it means Jane is not completely gone. It means she still evokes strong feelings. And in the future, the feelings her memory evokes will be less strong. Less overwhelming. The wound heals.

But I want a nice big scar. Just so that when I look at it, it helps me remember how deeply I felt for her once.

And how she will never be forgotten.

And if you'll excuse me, I'm off for some tears as writing this blog post has made me feel very upset.
Keep Reading: "Healing is an odd thing"