BunnyFactor10

Celebrating Jane with a fundraising night

2012-02-13T17:56:00.002Z

On May 30th, it will be a year since we lost Jane. I want to mark this milestone on June 2nd with a nice evening of live music and good company and you are invited.

I think I deserve a party for getting through this year:-) And I think you deserve a party for being there for me. Or for having been Jane's friend in the past. Or for still fondly remembering Jane. Or for, well, whatever tenuous link you may have to me or Jane :-)

But most of all, I think Jane's life was one to celebrate.

There will be live Acoustic music from some of the guys from Wordsworth and their friends. They will play all kinds of stuff but mainly things Jane liked: Crowded House, Foo Fighters, Manic Street Preachers. You know, stuff you remember from when you were in school. Mixed in with other solid tunes.

Corinne Lucy

There will also be music from Northampton's own Joni Mitchell, Corinne Lucy.

Please bring friends along as I will be charging £3 to get in, in the hope to raise some more money for the Cynthia Spencer Hospice.

The easiest way to comfirm your attendance will be to donate £3 to my Just Giving page (http://justgiving.com/bouncybean) for each person you are bringing along. Just pay with your card and leave a message with your donation with your name and number of guests.

Alternatively you can pay on the door of course but I really would prefer to know in advance how many people are planning to come so I can inform the pub what to expect.

Here is the Facebook event where you can confirm your attendance if you like. Please tell all your friends and invite them too!

If you can not make it, I think you should still give me £3 for the hospice, as an excuse. Just mention in the message that you are unable to attend :)

I have booked the pub for the Saturday evening but there will be other people as well as the pub was, understandably, not willing to close its doors on a Saturday night. However, people will all have to pay to come in. So, again, please bring friends as more friends=more money and more Jane-related people at the party.

If you feel you want to mark the occassion with something special, something to do, sing or say, please feel free to do so. Just let me know.

If you are coming from far away, I might be able to put you up for the night, as long as you let me know.

I can not explain how much it would mean to me to see friends who still think of Jane coming together for what will hopefully be an evening of joy and good memories.

Xx
Marieke

Venue:

The Romany
Trinity Avenue
Northampton
NN2 6JN

End of Life care

2012-02-06T15:21:00.000Z

Back in April last year, Jane went in to hospital after a seizure. 4 days later she came out again and a complete care package had been put in place over the weekend. I wrote about that in a post entitled Hurrah for the NHS.

Jane and me watching TV shortly after she
came home from the hospital in April 2011.

Jane was lucky enough to be part of a pilot project in Northamptonshire for End of Life care that enables people to stay in their own home in the last 8 weeks of their lives. With this project, a Rapid Response Team of nurses and Health Care Assistants was available in addition to special end of life carers 4 times per day. The carers and nurses were fantastic. Their help made me feel supported and calm. Well, as much as possible. It made the difference between being able to handle things and being totally traumatised by the weight of all the decisions.

Life moves in mysterious ways.

On Wednesday, I will become part of their team.

I will admit it is probably partly therapeutic for me. After all, nobody but me and those people know exactly what things were like in Jane's last few weeks. They were there with me. They were there for me and I will be forever grateful to them.

But it is more than that. I really believe my experience can help others. And that I owe it to Jane and myself to try and give others that same feeling I had: You are not alone. We are here to help. We understand what you are going through.

I suppose I might struggle at times. I am especially concerned about possibly being faced with a young couple in a similar situation as we were. But I am also reassured by the fact that the people who took me on are aware of my past. And they are still prepared to give me a chance.

I will repay their faith in me.

Bring it on.

The ball of grief

2012-01-30T15:28:00.000Z

Today is 7 months since Jane died. I have been extremely busy with work and my university applications and I have hardly had time to cry and grieve for the past 4 weeks.

I miss it.

Grieving, missing Jane, it is all I have left of her. I still love her but she is not there to love. So the only emotion I have left in relation to Jane is grief. Note how I am not saying I only have bad memories that make me cry. I have plenty of happy memories. But these do not evoke actual actute, physical feelings. Like when you look at someone and your heart skips a beat. Or when you wake up in someone's arms and you just feel utterly at peace and it brings you to tears. I don't have those feelings when I think of the past. I have happy memories and I can remember how I felt back then and those thoughts can make me smile. But that is like hearing the echo of a sound: you recognise it, you appreciate what the original sound was like but it is just not the same; it is a less powerful copy of the original.

And so the only physical, acute emotion Jane still evokes is grief. But at least it is an emotion. So I don't want to let that go.

This does not mean I want to spend every day, all day crying, thinking and dreaming about Jane. I think of Jane all the time, even when I don't know I'm doing it. Last week, on my way to my first Biology exam, I opened my mouth to sing along to a song in the car and without any warning at all, what came out was a cry and tears. No warning; I wasn't feeling sad or thinking about Jane specifically. Just like that I burst in to tears, my mind flooded wiwth memories of Jane and the overwhelming emptiness her death has left me with. Then I walked in to the exam room and forgot all about it for a couple of hours.

So what place does grief take in my life. I will use an analogy that isn't mine but is the most perfect illustration of how grief works.

Imgine a glass jar and 3 balls: a large one, a medium one and a small one. The ball is my grief and the glass jar is my world. The way people, including me, expect grief to go is that initially, like the large ball in the jar,mit takes over my entire world. It leaves no space to breathe, do or think of anything else. Then after a while, maybe after the first year, the grief shrinks. The ball is now a medium size and fits in the jar with some space around it. My grief is less, I have space to do other things in my world. After a while more, maybe after 2-3 years, the ball is now a small size. It fits in the jar that is my world easily. I could even ignore that it is there some times if I want to.

Does that sound familiar? Does that sound like your idea of grief? It certainly was my idea of grief before I lost Jane. Well, it is bullshit.

The ball of grief does not shrink. I don't want it to. It is the only thing I have left of Jane. What shrinks when you lose someone is your world.

So imagine this: at first, the ball of grief only just fits in the glass jar that is my world. There is no space to breathe or think of anything else. After a while, I am ready to expand my world a little. It is not the ball that shrinks, but the glass jar that goes up in size. As I venture out in to the world again, as I meet new people, do more things, the jar expands. There is now more space around my grief. It is still the same size but my world is bigger. As I continue to grow my world, the size of my loss, the grief, stays the same. But it DOES get easier to move around it.

Eventually, my world has expanded enough for my grief to not be in the way of everything I do all the time. It is not the grief that has shrunk, but my world that has grown. And that is the only way I can work around it, give it the place it deserves and still have a life beyond grief.

The original explanation of this is by Barbara Monroe.

So I will keep doing what I am doing. Growing my world. New job. New career. New friends. New place to live. Whilst inside me, the grief stays. And finds its own place in my world. But it will never get smaller.

Plymouth University Offer!

2012-01-23T17:24:00.001Z

Plymouth University told me last week it can take until March to know if they are going to make me an offer. Unless, they said, you are spectacular and we really want you. In that case, you'll know within a week.

It appears I am spectacular.

Where to go from here...

2012-01-17T17:07:00.003Z

I have had interviews at 3 universities so far. I have 1 offer already and I am feeling optimistic that all of them will make me offers.

So where do I go from here?

Until yesterday, Plymouth was my favourite choice. Great university, great city and beautiful countryside around. What more could I wish for in a new start? But as I was at the recruitment day, it began to dawn on me that Plymouth would also mean that I would be completely on my own. The area they cover for my practice placements is huge. Some placements can be a 3 hour drive away. So in order to make life easier, they asked us to choose a preferred area of practice and then all the practice placements in the next 3 years would be in that area.

This threw me. I had assumed I would move to Plymouth city and drive to my placements. However, they were suggesting that for some people it might be better to live near the area of their placements and commute to university on lecture days.

This would mean for me that I could end up being cut off from most of the university life, the student support, the nights out, the new friends I might make. As the practice placements are only up to 8 weeks, I would not be making firm new friends with the people I would be working with. In effect, I would be very much alone.

Most of the other candidates are 'local', that is to say, from Plymouth or from one of the neighbouring counties where the placements would be. This means they could live in Plymouth and, if they choose their home area as place of practice, live with friends or family when they are doing their practice. This is not an option for me.

They can not tell me where my practice area will be until after I have accepted my place at the University. Obviously I listed Plymouth as my first preference but there is no guarantee I will get that.

Is living near the sea so important that I would take the risk of loneliness and missing out on feeing immersed and included? I feel the answer might be No. I need friends around me. I need support. I need to feel study support is at the tip of my fingers when I need it.

Furthermore, hearing how all the other students were talking about discussing their options with their friends, partners or family made me feel very alone. I know I have friends. They will give me advice. And that is gratefully accepted. But I don't have someone to help me sort things out. Someone who will call the Student Loans people for me. Someone who will sit down with me at the kitchen table with pieces of paper and say: "Right, let's bash this out. This is your budget, this is what you need to do, do you need to sell the house, if so you need to do xyz..."

If I go to Coventry University, I would still not have someone like that. But at least I would still have my friends reasonably near by. I would move to Coventry but most of my friends would still be within an hour's driving away. Plymouth is at least 6 hours from anyone I know.

This is an unexpected development for me. I had not anticipated that this would be a problem. I guess seeing these other students with so many options and still have their friends, family and partners standing behind them like a safety net really brought it home that I am alone.

Loneliness is a different thing to being alone. When I am lonely, I know my friends will be there for me. But in the end, in my life, in this country, right now, I am very much alone.

Lindt Bunny

2012-01-11T22:23:00.001Z

Angel,

I got you your annual Gold Bunny today. I left it with some new flower bulbs. Maybe it is symbolic of something. Don't know.

Just wish you could eat the bunny like you used to do.

I love you.

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The Jane Memory Map

2012-01-10T01:46:00.000Z

I should be in bed or at least preparing for my interview at Coventry University tomorrow. But instead I worked on this: The Jane Memory Map.

Sometimes it seems to me that people around me don't understand how "everything reminds me of Jane" actually works. It seems they think I go around deliberately remembering things and locations. So I made a "Jane Memory Map" that shows how it works.

I am working as a home carer so I spend A LOT of my time driving around on my way to clients. And memories are around every corner. It does not mean every memory makes me cry, but it does mean I am reminded of Jane all the time, everywhere.

I think about Jane a lot. In fact, not a minute goes by that I do not think about her. Consciously or subconsciously, think about her. When someone says something, I remember Jane used to say that too. When I see something, I remember when I last saw it when Jane was still alive etc.

I don't do it on purpose. I really don't. I think this happens to all of us: memories flood our brains all the time but because they are not important to us at that moment, we don't even notice this process.

When I drive around, I notice every place we went to together and what happened there when Jane was still alive. I don't do it on purpose but memories just pop in my head. I am sure this happens subconsciously to everyone, whether they have lost someone or not. I just think that for widows, every memory is appended or prefixed by "when X was still alive".

For example, when Jane went to fencing every week, driving past the fencing club was not anything special. I just thought stuff like: Oh, it's Wednesday today, tomorrow is fencing night. And then my brain moved on.

But since Jane is dead, every time I drive past, I think: She used to fence here.

Bam!

Without wanting to, the next few seconds, minutes are then spent thinking of things related to that place I just drove past. And then I drive past the next place that has a memory. And then the next place. And so I drive from place to place. Memory to memory.

So I made this map. It has pictures. And it has the thoughts I have when I drive past the places. It shows the memories I encountered today. Just today. And these memories pop up every single time I drive past these places. Which I do multiple times in the day as I drive around the area to my various clients.

A different day takes me to a different area with a similar amount of memories.

It turns out that most of the memories are not of specific big activities as such, but of feelings I had about that activity. When I think of Jane, a memory pops in to my head and the next thing I remember is what I was either feeling at the time of the event, or the emotion I feel about it now.

I am not explaining this very well I think. What I am trying to say is that without wanting to, everything reminds me of Jane. All day. Every day. I can not avoid it. It does not make me cry (well, most of the time it doesn't). All I need to do is to learn to give all these thoughts a place.

To see the map in its full interactive glory, visit the Jane Memory Map here.

Still alive

2012-01-09T22:34:00.001Z

I am still alive. Due to working from 7am to 10pm every day, I simply have no time to post. This upsets me because there is plenty going on in my head.

I am working on something interesting (and on getting a different, more social, job) so please bear with me. I will post again as soon as I have some time to gather my thoughts.

X

Christmas without You: Going home

2012-01-02T17:54:00.000Z

Liefie,

My bags are packed, I am waiting to go to the airport. Back home to England. Somehow it feels like once again I am leaving behind a piece of our lives together.

This has been good for me. Being with A. & M has been fun. I have heard new things about you from your time at MGC that I did not know about. I got to talk about you. I got to cry about you. I got to laugh about you. I got to write to you.

The hard part of learning to live without you starts now. This is crunch time for me. For the university applications, for the GCSE exams, for me to show the world and myself I can do this. For you. For me. For you to be proud of me.

I was listening to Crowded House again this morning. I always liked this song. I am sorry I did not play a Neil Finn song at your funeral but hey, I wanted to leave a lasting memory (or should that be a scar??) for everyone and the chance of them hearing "Fall at your feet" at times in their lives are bigger than hearing one of Neil's obscure but brilliant tracks. See, always the pragmatic kind, I am.

This has always been one of my favourite songs. I still enjoy listening to it. Even though when I do, I recall every second of the 3.15 minutes when it was played in the crematorium. At the end of the lovely service, when the celebrant said: "We say goodbye to Jane for the final time by listening to a song from her favourite band."

I bowed my head and whispered along with the words. Then the celebrant came up to me and kindly asked me if I wanted to lead everyone out the auditorium. To which I replied: "Not yet! I am listening to the nice music!"

I recall the exact moment in the song when I finally did get up. It was when the instrumental break started. I got up and walked past your coffin. I am sorry I decided on closing the curtains now as in hindsight, I would have liked to be able to see you one more time.

And so, whenever I hear this song, I am ok. Until the instrumental break. Because that specific part is when I had to leave you behind for the last time. I am so sorry I had to.

If you are looking out for me out there, can you please make sure I get accepted in to Plymouth University and that I get the C in Maths && Biology that I need. Taa muchly.

I love you. Always.

xx

A new year, a new start?

2012-01-01T17:35:00.001Z

Liefie,

Last night was so much more difficult than I expected. I was worried about surviving Christmas but I should have been worried about New Year's Eve.

I got a couple of generic Happy New Year text messages. Although they were meant well, I was slightly annoyed by them as well. People must know this is not going to be a very happy new year and surely they know NYE must be excruciatingly difficult. So why not take a minute to realise that a general message that says stuff like: "May all your hopes and dreams come true this year" means nothing to someone whose hopes & dreams have been shattered.

Oh well, at least I got some text messages I guess. And I suppose it is up to me to educate people on how to deal with a widow; what is helpful and what isn't.

We spent the evening in The Dirty Bourbon, a Western-style dance saloon/bar. I cried before we went at the prospect of a new year without you. The evening was quite good fun. Watched many cowboys line-dance and many many couples having a good time on the dancefloor. Around 11, we returned home because I had warned A & M that I would cry at midnight.

And I did. As we stood on the roof terrace with bubbly wine in our hands, I cried and cried. Quietly at first, silent tears running down my cheeks. But then A. gave me a hug and I did some proper sobbing. I had some irrational comments about how I should have been able to save you and I told A. I was sorry she lost her friend. I was very glad to be around one of your friends. It made me feel less lonely somehow.

You are missed, you know. Not just by me.

I can not express how I feel about going in to a new year without you. I feel more desperately lonely than I have ever felt since you died. The change of the year is just such a punch in the face. A very definite end to the idea, the fantasy, the delusion that maybe, just maybe, this is all a bad dream and you are simply away from me for a while.

I have a sneaking suspicion that the hardest part is about to start. In addition to missing you, I am starting to feel a crushing loneliness more and more often. When I think of what would happen if I had to go in to hospital for some reason for example. Who would be my next of kin? Where would I go? Who would come and visit? Who would care for me after I'd come home? Bit maudlin I know. But things like that just remind me that, apart from a few friends and acquaintances, I am basically alone here.

Self-pitying perhaps but I am allowed, I think. I have managed to avoid self pity since you died but right now I am feeling very sorry for myself. I am starting to lose the momentum I had with college, university, work etc. I am caring less and less about it and am even considering not bothering with it. But I know you would be extremely disappointed with me if I gave up. And I would be disappointed with myself. But after caring for you on your deathbed, what else could possibly ever bring me any kind of satisfaction?

Oh dear, I am talking nonsense right now. Perhaps it's because I am just feeling lost without you. I miss you. I don't want 2012 without you.

xx

You no longer died this year

2011-12-31T16:31:00.000Z

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

I want to be loved...by you?

2011-12-29T23:55:00.000Z

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

Christmas without You: Doing OK

2011-12-28T21:00:00.000Z

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.

Merry Christmas, Angel

2011-12-25T20:13:00.000Z

Christmas without you: Snowsports

2011-12-24T21:29:00.000Z

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

Christmas without You: A walk through the snow

2011-12-22T18:36:00.000Z

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

Christmas without You: I'm here.

2011-12-21T12:06:00.000Z

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

Christmas without You: The Trip

2011-12-20T04:52:00.001Z

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.

Christmas without Jane

2011-12-19T12:50:00.000Z

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.)

Grief or sick?

2011-12-15T11:45:00.001Z

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.

Grief interrupted

2011-12-12T00:08:00.005Z

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.

Useless things

2011-12-08T14:10:00.001Z

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....

Aunti Jane is a Star

2011-12-04T19:58:00.008Z

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'.

Six months

2011-11-30T14:22:00.003Z

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.

Dignity in dying?

2011-11-28T15:05:00.000Z

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.