BunnyFactor10

Intrusive thoughts and ADHD

2022-05-15T17:24:00.001+01:00

You know how they always bang on about talking about your mental health issues. Turns out, that it is true: when you do, you learn you are not as awful as you think you are.

Listening to a podcast about intrusive thoughts. This guy says: sometimes when he is chopping carrots and his young kid is in the kitchen with him, a thought flashes through his head what it would be like to stab his kid with a knife. Or stab himself with a knife. He doesn't want to do it and is mortified that the thought even pops into his head. The shrink on the show says these thoughts are very, very common and most people have them and don't think about it for more than a split second. The problem is not the thought, but knowing that you are not your thoughts. This is a very common problem for people with a low self image: "OMG. I had a horrible thought. I am a horrible person. I am sure nobody else would think such a thing. I am deviant." Thus perpetuating the self-loathing.

Considering the fact that those of us with ADHD often notice all the details of just about everything around them, the smallest things can sometimes spark the darkest (or weirdest) thoughts. I pass a large man in the street and a thought pops in my head: I wonder if his dick is also big or if it would be laughably small by comparison (OMG, I am disgusting). A see a cute dog on a lead and I wonder how tight you could pull that lead before the dog would die (OMG, I must secretly enjoy torturing animals). I think of a friend or family member and wonder how sad I would be if they were dead (OMG, I am an awful person).

Remember one of the big issues with ADHD is that the brain does not know very well which things and thoughts are important and deserve attention, and which ones are just passing clouds in the sky and can/should just be ignored without further analysis. And so, a small, passing thought that many people have and pay no attention to, becomes a source of self loathing for some.

I guess I owe Corinne and Andy a debt of gratitude. Only by being entirely stripped of any self esteem and trust in my own judgement and understanding of how people interact with each other, have I been forced to start investigating myself or else I simply would not survive. I might turn these ramblings into a blog, rather than bore people here with them. They are more for me to work out my thoughts than anything else.

PTSD and relationship trauma

2022-05-08T17:20:00.004+01:00

PTSD: It is not just being triggered by gun shots and fireworks. It is often triggered by the smallest things.
Like driving to N and after more than 3 years STILL having to pull over because I cannot breathe after driving on the A43 past the garden centre where we had lunch the day I found out. The same roundabout that is the turn off to where they first lived together. To where she works and to where I asked her outright and she denied it, saying she'd never lie to me, how could I think that of her.

It is weird because it is really specifically that roundabout only. Dread grows in my stomach for miles before I approach it. Anxiety ebbs away once I am past Tiffield. That's the thing about trauma: it attaches disproportionate meaning to seemingly tiny details. You'd think I'd get triggered more by being in N, being reminded of my relationship as a whole.

I think it is because what it reminds me off is the period just before and for months afterwards. Where I was utterly, utterly despondent and suicidal. The ONLY memories attached to that area are awful, traumatic ones. And I feel every one of those feelings again, every time I drive past that roundabout. It is an almost perfect image as well. A roundabout has many roads leading off it. Like my memories. Sometimes I drive past and the memory of me cycling there to surprise her at lunch time pops up in my head. What a fool I was for not understanding why she seemed so flustered about that. Other times, I remember she told her mother she loved someone else at the garden centre there, months before I found out. What a fool I was for not realising that. Or when she'd come home from late from work. When o asked her why she was late, she said she was late because she'd been "scoping out the houses around her work", despite us planning to move to Sheffield a couple of months later. What an absolute idiot I was for never questioning that answer. (I know I wasn't an idiot, but I am reminded of feeling like one back then).

I have tried many different ways of dealing with that. Mostly telling myself not to be such a fucking wuss. It is only a fucking roundabout. I've tried hard enough. From now on, I will drive to Northampton via the M5 only.

Why am I telling you this? Because trauma doesn't just play out in the Big Things. It is quite often hiding in the small corners. In the places you forgot to avoid because you didn't know you had to.

The Split

2022-05-06T17:19:00.003+01:00

Binge watched The Split. About a couple cheating on each other, divorcing and then accepting the cheating was because they were just over. That they shared good times that shouldn't just be forgotten. That sometimes marriages can't be saved, but if both parties are willing, good memories can be shared with the acknowledgement that you both once meant a lot to each other, instead of trying to forget.
It is kind of uplifting. But it also made me sad again. Because that can only happen if that is what you both want.
I'd like to reach out. I'd like to heal. Why should people try to block out the happy times by cutting out chunks of our past? But I don't think I could take it if the answer was: just leave me alone, I don't want to be reminded in any way, not even of the good things.
Ugh. I need a housemate or more locally-based friends to distract me when I spiral like this.

Passive chronic suicide ideation

2022-04-19T17:16:00.006+01:00

I am all for openness about mental health. So here it is: Passive suicidal ideation. I have happy moments. I am not unhappy 24/7. Yet, for about 3 years now (no guessing what happened), every day I think: Meh, I wouldn't mind if I didn't wake up tomorrow, this just isn't worth all the effort I am putting into keeping going.

Ironically, the unbearable thought that something I do might somehow have a negative impact on someone else, no matter how small (one of the things that often paralyses me in putting my own needs first), is also what is ensuring it won't happen. The pain it would cause others is keeping me safe so don't worry.

But it sure is tiresome.

Please do take a couple of minutes to read the article. You may find it helpful to know the difference between passive and active ideation.

I am not always very attached to being alive: Chronic, passive suicidal ideation is like living in the ocean. Let’s start talking about how to tread water.

2022-04-14T17:15:00.008+01:00

Tomorrow is C's birthday. I despise the fact that I have already spent about a week psyching myself up to resist the urge to email and wish her a happy birthday tomorrow.

Is that really better, and healthier, than to just decide it's ok to just wish her a happy birthday and not spend so much energy on hating myself for wanting to do that? And if it is NOT a good thing to do, when will this stop happening with every meaningful date? Birthday, wedding day, day she left...

Trust me, I REALLY am not holding on to this. I am no more on control of thoughts popping into my head than I am of blinking my eyes: I can hold them back for a while but in the end, I have to blink or I do damage.

Worrying thing is, it doesn't feel like a new relationship would stop this. Because happiness does not erase (what my therapist calls) trauma.

On fish and plankton

2022-04-12T17:14:00.008+01:00

I love living in S but I really do miss the social life I had in N. Not just friends, but also people I vaguely knew, pubs I sometimes played and so on. There was a wider range of options of things to do when feeling a bit meh.
Making new friends completely from scratch is hard. Building a social life that covers all aspects of social contact is even harder. Friends are like fish and acquaintances are like plankton. An ocean with only fish is not a healthy ocean. You also need plankton around you, for when you just don't need or want a whole fish, but want to fill yourself with a several bits of plankton instead.
I suppose I miss feeling at home in a place, rather than always being consciously aware of where I am.

It's not "home" yet.

Things I have learned: Fight or Flight

2020-06-30T05:50:00.000+01:00

I get panic attacks (tingling extremities, rapid breathing, light headed, adrenaline surges) when I see names of places we went on holiday. Or when images of the happy times play in my mind. Thinking of happy times, of holidays, of times we went away together in particular, bring on a very physical response. I suspect it is related to the fear of: What if that happiness was actually not real? What if I was already being deceived at that point?

My brain treats those thoughts as a threat and responds accordingly with a physical fight-or-flight response. Sad memories don't elicit that response. Sad memories make me sad. Memories of times when I either felt or knew things were not right just make me sad. That makes sense: I already was feeling the appropriate feeling about something at the time. There is no dissonance between what I thought was happening and what was really happening.

It is almost 18 months since I found out. I feel my soul has been cracked open and it has revealed a darkness I did not know was there. Most of the time, I am only aware of it in the background. Maybe a bit like tinnitus. But at least once a day, it comes to the foreground. And it roars with a deafening cry, overwhelming everything else and making me worried that I will have permanent hearing damage from it. And those are the times where I just don't know if I will ever be free of it.

[SNIP - There was a large section here about how C's behaviour is continuing to feed my corrosive insecurity but I'm so tired of it sounding like I am just wanting to badmouth her that I deleted it]

When I think of places we went, fun times (I thought) we had, a physiological response kicks in. A kind of protection mechanism that tries to figure out if my responses back then were appropriate. Did she really have fun when we went kayaking? Or did she just say that to please me? If that's the case, then me getting excited about maybe buying a kayak with her must have made her feel I was pushing her, whilst I felt we were sharing something. That surely means my interpretation of her emotions/behaviours was wrong and I made an error of judgement about the right things to do. So maybe I have no idea about when to respond in certain ways. Maybe I don't understand people at all...

Did she really enjoy going for hikes in Snowdonia or did she just say that to keep me happy? If that's the case, then me suggesting she might want to invest in some hiking trousers and "Oh Look, there is a sale on them in that shop, why not buy them now", must have felt like me pushing her into something she did not want. Whilst I thought we were sharing something. That surely means my interpretation of her emotions/behaviours was wrong and I made an error of judgement about the right things to do. So maybe I have no idea about when to respond in certain ways. Maybe I don't understand people at all...

Did she really enjoy singing with me or was it those times when she was reluctant that were closer to the truth? How can I believe her when she says she enjoyed things at the time we were doing them? How can I believe her when she also said she was not having an affair. And then that she only kissed him, really. And then that she did not conduct their affair in our house. How can I heal when nothing feels true? How can I heal when none of the feelings I had feel, in retrospect, like they were based on reality?

I am having physical responses to the question whether everything I thought about her, me and the way we were together was wrong. Fundamental assumptions about how I think people behave in relationships (i.e. be open, tell each other the truth and don't lie) have turned out to be untrue. Those thoughts threaten my fundamental beliefs about life and about people. No wonder it produces a fight-or-flight response.

It is a scientific fact that break-ups that involve a partner leading a long-term double life can cause significant trauma. A recent study suggested that giving people Propanolol (a beta-blocker) before making people re-live a painful memory can help them to retain the memory but to remove the painful physical and mental response it creates. In other words, it might make you able to think of your relationship and see things without feeling the crushing pain of those specific memories. If that was available in the UK, I would do it. In a heartbeat. Because I am so ready to move on. But parts of my brain won't let me. My body responds to my memories in the same way it would respond to an existential threat. I just don't know how to be free of that. It's not like we can control our body's responses to triggers.

Oh wait, we can. Kind of.Treatments for PTSD that may work for a traumatised lover include relaxation therapy, cognitive therapy and eye movement treatments that desensitise you to the trauma (The Guardian). It seems more than a little perverse that people who did no initiate the break-up are more likely to suffer from mental health problems afterwards.

When we had just met, Corinne wrote a song for me about grieving for my first wife. The opening lines are ironically appropriate here:

"We say time is a healer, and desperately hope that it's so".

I continue to hope. But I think I need more than that. Hand me the Propanolol.

See also: Rejection Can Be More Painful with ADHD

Things I have learned: Loneliness has many forms

2020-04-27T15:34:00.001+01:00

I cried a lot in the past 13 months. And I mean, A LOT.

I cried for many reasons. Mostly I cried over unanswered questions.

- Why did she do this to me?

- How could I not have seen?

- Did she ever love me at all?

- Was our relationship ever exclusive?

- Was I so unimportant to her that she simply didn't consider my feelings?

- I don't understand humans if they can do this to each other, how can I live in a world I don't understand?

- Why do I feel love for someone who has treated me so badly?

- Why are people still friends with them? Surely nobody wants to be friends with people who treat others with utter disdain?

- Why?

- Why don't people speak out to them?

- Who can I trust?

- I must be weird for not understanding how people can be like that?

- Why?

- He's everything she always said she didn't want: man, beard, unattractive (her words, not mine), kids, small isolated village. Does that mean she was never honest with me about what she really wanted? Was I just a passing fad?

- Why does she not want to be friends? She's contacted old joint friends to re-establish contact with them but does not want contact with me. Am I really that repulsive? She's hurt ME, so why is she rejecting me again as a friend, after first saying she would like to remain friends? (Regardless of me even wanting to be friends) Does that mean she never really liked me in the first place?

- Why?

Unanswered questions are a kind of loneliness. You ask them in a vacuum. When someone has died and you have questions, the person who could answer them is no longer there. That's sad and lonely, but there is nothing you can do about it. With a breakdown, you *could* still contact the person to ask your questions. You know you shouldn't but you are longing for the release, for the feeling that you might get an answer that will alleviate the loneliness of not knowing. Even sending that email, for a few moments, makes you feel better. And then the fretful waiting for an answer starts. But even if they were going to give you answers, their answers would be unreliable. You know their first concern is not your mental health, but saving their own skin. If you were the first thing on their list of things they care about, they'd never have done what they did. That's a painful kind of loneliness. You are alone with your questions. You are alone with the constant battle not to ask for answers.

I have cried about the devastating feeling of coming home to an empty house. About no longer having C to share my stories with. About no longer having someone around who I shared a history with. Nobody that remembers when you went on that camping trip and you ate foie gras at that little restaurant in Sarlat. Or when you panned for gold nuggets at Gevor Tin Mine in Cornwall.

That is a specific kind of loneliness. Of suddenly living in an empty space, physically and mentally, that used to be filled by a specific person. I remember that feeling from when my first wife died. For the second time in my life, large parts of my history and dreams have died with the death of my relationship. It's lonely.

I have however not cried about being alone or lonely as an ongoing thing. That's a recent thing. I guess in a way, that's progress.

I am terrible at being alone. I am a better person with a partner. I need to bounce ideas of people. I don't like being alone. I like having someone around me in the house. The thing I fear most about my future is ending up alone. Because I know I am a lesser version of myself when I'm alone. I live to share with people. Without the stimulus of others, without people to do things for, I am just a lesser version of what I know I can be. Of who I want to be.

I love cooking, but I don't cook for myself. I don't do nice things if I do them only by myself. I see no point and it gives me no joy if there is nobody to share that nice meal, bike ride, movie, TV show, trip to the garden centre, walk, holiday, or story with.

Sometimes when I'm watching TV or just "chilling", I suddenly become aware of the fact that I am alone. And a tingling starts in my fingers. It moves into my stomach and causes a wave of nausea. A sense of panic almost. I think it is a feeling of helplessness. A sense of fear that this is my life forever. I know it doesn't have to be. It may not be. But it might. It happens mostly when I am watching something that I know Jane and C would both have enjoyed. The two major relationships in my life. The two people I shared everything with. Gone. Nobody to say: let's watch this together.

I'm not sure what I'm trying to say. Many people are lonely and I worried this sounds like I am whining. I guess this is just a stream of consciousness.

Things I have learned: You can't run away

2020-04-21T12:28:00.000+01:00

In the months before we split up, I was feeling down and knew our relationship was not going well. In therapy C had said that it was because I was depressed and distant and urged me to do something about my depression. I did the thing people always tell you to do when you are feeling bad: exercise. I took up running and sometimes, C even came with me. I thought we were building something in common. We said we would try to run a Parkrun together eventually. After she left, I tried to take my mind off things by taking the running more seriously. I followed the NHS Couch to 5K program and eventually did a 5k Parkrun. I can safely say I probably cried at every single run I did. I pounded my anger into the same streets I had run with C. Memories of the corners we had stopped at for a rest. Or the bit in the park where we talked about our relationship. The stretch of road where C said she could run no more and got angry when I encouraged her to keep going. I varied my route as much as possible but there is only so far you can go in a 30 minute run. And when I crossed the line at the Parkrun, I cried. And Cried. And I stopped running.

Over the past year, I have taken to making music. And to working extra shifts. I've been told to keep busy and that this would eventually help to take my mind off things and help me move on. I was very aware that every single minute I was not busy, every single minute of silence, intrusive thoughts come to my mind. I cannot fall asleep without a podcast on, because silence brings intrusive thoughts. I cannot listen to music because a song might bring back memories or I might get angry at love songs. And every memory is followed by a question: how long? Did she mean this thing she said when we were at this place? Were they together already when we made (what I thought was) love during this trip? And so on and so on. People say: don't torture yourself. Which implies I am deliberately asking these questions, bringing them up on purpose.

As someone who is "on the spectrum", there are things I struggle with more than others. Questions with no answers are a particular problem with those on the autism spectrum. Unsurprisingly, when your partner has a secret relationship for years, there are a lot of questions you will never get an answer to. Many people don't understand that the pain of not knowing is hundreds of times worse than the pain of the truth. You can deal with pain. But not knowing is obsessive. I don't know how to let go. I don't think I can let go. Trust me, I would if it was as simple as: don't think about it. I am physically not wired to accept: you'll never know. I have begged for answers. Begged for explanations. And when they were given, they turned out to be not true. So I begged again. And was given yet another explanation. And eventually, I realised I cannot trust any explanation I will ever get. Because explanations are given not to help me, but to protect herself. A forensic explanation of the exact timeline of their relationship would be less painful than the constant questioning and continued lying. She said she wanted to divorce because she can't buy a house whilst we are still married. I KNOW that is a lie. I bought a house. They have two incomes and presumably a deposit. They can buy a house. Just tell me the truth. But is like she's not capable of doing that. This is a vital point: I keep asking questions because the answer WILL help me. I realise this is unusual for most people but I know myself. And so I ask: Why the continued lying? Am I not worthy of the truth? Questions, questions, questions. And I will never get an answer. It is relentless.

Anyway, I have tried to distract myself, so I would stop my brain from being flooded with questions all the time. And I thought I was doing reasonably well. Until lockdown. I am not saying in ANY way my lockdown is worse than anyone else's. But this is MY lockdown. I am alone. I have nothing to distract me. I can't do DIY to distract me (mostly because the house is how I want it), I do music but not as much. I need external stimulation to distract me. And there is barely any right now. Because we are not allowed to see people. So the obsessive questioning has returned again in the moments of silence. And with less opportunity to distract me, things are on a backward spiral. I feel worse again, asking myself why this, why that, why is she still lying to me when we are discussing divorce? It has gone back to being relentless again.

I drink too much and I eat too much. I have put loads of weight on. And so, I decided to take up running again. And it was a very bad idea. It has taken me even further back. Because now I not only remember when C and I ran together, whilst our relationship was falling apart, I now have a double whammy memory of how shit I felt when I was running last year after we split up. And added to that, I berate myself for feeling like this more than a year later. It's more than a year. I should stop moaning. I should stop being so unhealthily obsessed. I should be dating. I should be grateful for my friends. I should have moved on. I should stop thinking about them because they sure as hell don't seem to think about me. I should, I should, I should, I should, I should.

If I should, then why haven't I done it yet. Drama queen. Get over it.

Things I have learned: Music

2020-04-15T06:47:00.000+01:00

What has happened this year apart from trying to learn how to be on my own? I thought I might try and work through some of the things I have learned about myself, reflecting on what I have learned about my relationship(s) and what I am hoping to take with me into the future. It is not about excusing her cheating. It is about working through the things I need to learn and do better next time in order for ME to be happier next time. For me not to repeat the same behaviours.

Songwriting and music

I NEVER thought I would write songs. I tried to write a song ONCE. When I was about 17. I was dabbling with playing guitar and a girl I was in love with gave me some lyrics and said: write some music. I did. I sang her the song. And she and her sisters laughed at me because I had not realised the lyrics were actually some cheesy Lionel Richie song I had never heard of. They played me the song and of course my music was rubbish by comparison. It was the first time I had EVER tried to write a song. The first time I had ever tried creating any kind of chord progression and melody. Of course it was rubbish. I never tried again. I was never ever ever going to put myself in such a situation where I showed people I wanted to love me, music I had created. Because the one time I did it, was devastating.

And yet, in the past year, I have started to write songs. I have learned a lot about myself whilst doing this. A lot about why my relationship would never have worked out in the long run. A lot about why I made her life hard (which does not excuse the cheating) and a lot about how I denied myself to participate and share her music life with the way I felt/feel about my musical abilities compared to hers. How I was so keen not to be the loud shouty wife who constantly jumped to the forefront at her gigs, that I took it too far and did not engage with her friends at all. She never asked me to do it. My insecurities did it. I was so afraid of being too loud that I put myself so much in the background that it looked like I just didn't care. And I did care. I cared so much. I wanted so badly for her to shine. To be the centre of attention.

I was so in awe of her music that I did not have the guts to even contemplate trying to write anything myself. Because surely she would be forced to politely say: yes dear, that's nice, when in reality we both knew it was rubbish. I have heard her talk about other songwriters and I was terrified that she would talk like that about me and my songs behind my back. I suggested we try writing together a few times. She didn't want to. Probably because my insecurity often made me angry at the ease with which things seemed to come to her. And instead of pushing back at my anger, she just pulled away.

I would still be mortified if she heard my songs. And I am sure she has heard them. But I don't want to think about it. I need to no longer compare myself to her. I never should have. She's not God. She's good. But not God. And, admittedly, she would never say she is. Another thing that I did, me, my insecurities. I like country music. Simple stuff. She didn't. Which is fine. So I felt that if I wrote country music, she would think I was crap and not as clever as she had thought I was. I guess I thought that if I wrote bad music, it would show how much of how she felt about me in general was entirely wrong and that she would be disappointed in me and realise we should not be together. After all, we met at a gig and we met over a shared love of music. I put all my energy in encouraging her and none into growing my own music.

I did so much self-sabotage in relation to music during my marriage that it would have been very difficult to ever share music, songwriting and performing with me. I was always setting myself, and her, up to fail. When she said she thought I would be a great songwriter, I said she was only saying it to be polite. When she said I should just try it, I got angry for her using the word 'just'. Did she not realise it might come easy to her but not to me? When she said: just make up your own harmonies to my songs, I love your voice and I am sure it will sound great. I would get so afraid that what I came up with would disappoint her that I got angry at the ease with which she would then helpfully suggest a harmony for me.

Without defending her actions, I realise it must be very difficult to live with someone who is always so insecure and on high alert of failure. It must have been very attractive for her to meet someone who adored her music, was in awe of her songwriting whilst thinking his own was shit, but at least had the guts to put himself out there and write his own songs. So they could talk about songwriting, she would take suggestions from him about her songs. I'm sure that's how she looked at it. What she should have done of course was talk to me. Not be silent and just pursue someone else. But, again, that is about HER response to my issues. I don't want to talk about what she should have done. I want to talk about what I should have done. Not about what I should have done to keep her. But about what I should have done to be happy with myself. What I should not do next time.

I realise now that my songs and my performance are good enough. I never had doubts about my performance, actually. I just felt that without writing my own songs, I would never really be seen as a "serious" musician by C and her music friends. I don't know how C really felt about that as she didn't really seem to have much appreciation for people who sing only covers, but I know I seriously underestimated people in the music scene. They have all been great. And I believe them when they say they like my songs, voice and performance. I don't know if that means I have changed or that it is simply entirely different coming from friends or from the person whose approval sometimes matters more than life itself.

Reading this back makes me very tearful. It is so painful to read this and not be sure I won't fall into a similar trap next time.

Divorce

2020-04-14T07:35:00.000+01:00

I filed for divorce on the grounds of adultery. I will spare you the details, although if you are reading this blog, you are probably a friend of mine and you will know what has happened. After my first wife died, I knew that I would have married her even if I had known how it would end. Even though her death was the most horrid thing, I would have done it all again, in exchange for the loving time we had together. The pain was worth it.This year has been the hardest of my life. Yes, harder than when Jane died. More devastating with probably more long-lasting destructive effects on me. More money spent on therapy that will be ongoing for a long time in order to re-gain some semblance of self-esteem and some small ability to trust people.

I don't know if I will ever learn to enjoy any memories of my marriage to C because so many years of it, I was sharing it with a man I thought was my friend. The pain was not worth it. At all. There were not enough happy times, in hindsight, to make up for the pain and long-term damage. Nothing is worth what she put me through, the impact on my future relationships and feelings of deceit and betrayal. I have come through the angry stage. I am trying to develop some kind of relationship with her although she says she has never been friends with her exes. This, of course, does not surprise me, because seeing her exes presumably reminds her of her guilt all the time. Best to avoid people, rather than face your feelings.

Delusion

2019-04-29T00:32:00.001+01:00

Hey Corinne! I'm on a ferry, having a little cry.
I'm not crying because of you; you're not worth it.
I'm crying because my delusion of who you were was shattered by the truth of who you are.

Nearly two years

2013-05-01T11:14:00.000+01:00

May is here. The month JD died. By the end of this month, it will be two years. I have heard many times that the second year is harder than the first one. That in the second year, you are no longer numb and that the real emptiness strikes, the real loss, the realisation that whatever you had planned for the future with your partner is really not going to happen.

My second year was not like that at all. I started (and struggled) through my university course, I worked, I loved, I reminisced, I cried, I missed and I celebrated. I keep waiting for the Real Grief to knock me out with a sledgehammer. I am not saying life has been easy but in some ways I expected this to be different. Harder perhaps? maybe it feels easier because at no point in the first year did I stop myself from crying. Anywhere. If I felt tears, I cried them. No matter where I was at the time. In Tesco, on the street, in the delicatessen down the road, on the train, in my car. There has never been any bottling up of emotions.

Maybe that is why I did not have the Second Year Hit. I have however lately noticed a general low-level sadness creeping back in about things. Where I have been listening to Matchbox 20 and Crowded House, JD’s favourite music. Not sure why or what it is supposed to make me feel. maybe it is one of those things that helps me feel that my past is still part of the present. Because nothing is the same. Girlfriend is a fair bit younger than me and likes different music than JD used to. So not much 90s music around my house. Mostly 80s (strangely enough). This is not a problem but it is….I don’t know. I am just used to having 90s music around, even if I don’t care much for it. I don’t know how to explain it. MB20 played in Manchester last month and 2 of JD’s friends went. I had wanted to go too but in reality, I only wanted to go because it would have reminded me of doing something I might have done with JD and her friends. I mean, I like MB20 enough but it would not normally be something I would pay lots of money for. I would have spent the entire time crying for JD, rather than actually listening to the music. So why did I want to go?

Maybe it is searching for something familiar around me. Because everything has changed.

Girlfriend and I have moved in together this week. That feels a bit weird. I am utterly sure about my feelings for Girlfriend and it is wonderful to live together; she makes me very happy indeed. But it feels weird to do things like that with someone who is not JD. I had to get used to that feeling. Settling down with someone who is not JD.

I wish there was a script that widows follow so I know that I am within the ‘normal range’. Is it normal to want to keep some things that belonged to JD? or photos? I mean, everyone has pictures from their past, right? Or letters from friends they keep. Or souvenirs. So why does it feel weird to want to keep those things from my time with JD? Maybe the music is important to me because, due to having moved house a few times since JD’s death, I have not go many physical things left. No ornaments in the house, no photos on the wall, no clothes. And nobody really to share memories with.

Last year I organised a fundraising gig for the hospice where JD died. This year, I have decided I am going to scatter the rest of her ashes on the day she died (some were scattered at Warwick University already). I will scatter them in a place that was meaningful to her (and therefore to me).

At home a month before her death
One last thing… I wish that I could feel more sad when thinking of JD as she was before she was ill. Whenever I see pictures of healthy JD, I feel as if I am looking at my best friend who died, as opposed to someone I loved. I mean, I think of how sad it is that she is dead but I do not generally feel tears welling up. But when I think of JD when she was ill, I cry. Without fail. The thought of someone so young having gone through all that. Remembering how she was helpless. How that made her feel…It makes me incredibly sad, still. Physically sad. With tears and the lot. Does that mean I am over the actual loss of my wife and friend and am now just crying about the sadness of the illness process? Somehow I feel that that sadness will never diminish.

Anyway, this is yet another directionless post. Which shows that I just don’t know how this works. I guess I am just having a whole bunch of unguided thoughts about JD tumbling around my head at random moments.

Should I tell my university tutor? I struggle to concentrate at the moment and I know this is partly to blame but it feels like an excuse to use…

In her soft wind I will whisper
In her warm sun I will glisten
’till we see her once again
In a world without end

In her soft wind I will whisper
In her warm sun I will glisten
And I always will remember
In a world without end
She goes on

29

2012-12-02T11:12:00.000+00:00

Dear Jane,

You would have been 29 today. Nearly back in the same decade as me. We used to joke about it. When we started seeing each other, you were 19 and I was 27. When you turned 20, I told you I was happy that at least we were now in the same decade (at least until I turned 30) so the age difference no longer looked so big. You told me that once every 8 years, we would get to celebrate the event of you catching up with me, at least for a few years. We only got to be in the same decade once. You never made it to your thirties.

Would you be happy for me if you were able to know how things are going for me now? I would like to think you would be. You were always a generous woman. I seem to remember you once told me to grieve short and hard for you but then just get on with life and be happy again.

As life is settling down, I am thinking of you a fair bit again. Not in the sense that I am unhappy without you. I am happy with my life as it is. Girlfriend is wonderful. You would have liked her a lot. She looks after me extremely well and is the most understanding person I could ever have hoped to meet. You probably would have gotten pissed in The Racehorse together and laughed at the idiotic things I do. You would have asked her if I still interrupt people all the time. You would have laughed at Girlfriend rolling her eyes at that one.

At university, I learn more and more about bodies, health and dying. This obviously means I think about you a lot. How you were not healthy; how you died. How your body worked. How it did not work. What the medication and chemo did to you. I try not to think too much about how learning more makes me feel I should be able to apply that knowledge retrospectively to what happened to you. I did not know any better.

Did I treat you with enough respect when you could no longer make your own choices? Did you understand when I said: No more chemo? Did you want to shout: BUT I WANT MORE CHEMO, YOU ARE KILLING ME? Did you realise you were not drinking and eating? Did I understand you enough? Did I have enough patience to wait for you to form an answer in your head when asked if you wanted to die at home or in the hospice? You said hospice. Then home. Then hospice. Then home. Basically, did I listen enough when you were trying to tell me something? Out of all the things that happened, that question will forever haunt me. I know you were going to die. I think you knew it too. But did I treat you with respect. Did you feel I abandoned you and just sent you to a quick death? I know you would never have thought that I wanted you dead. But I hate the thought that you might have been angry or desperate to tell me not to give up on you.

Dammit. I was jut going to write you for your birthday. Because I never talk to you anymore. I did a lot just after you died. But I stopped feeling the need to do that.

I guess I just wish I could somehow tell you that I am happy. That I am doing fine. That somebody loves me. And that I can love somebody again with all my heart. But that none of that means I don’t think about you anymore.

Today I am working with R. She looked after you when you were still home. Seems fitting that on your birthday I am working with the people who helped me to look after you and who helped me to be sure I wanted to go to university.

I went to the Birmingham Christmas Market today with Girlfriend. I remember when we went for the last time in 2010 when we were grateful you even made it to celebrate another Christmas with you. And last year I met Rachael and your mother there. I should speak to them more.

My folks came over from Holland last week. My dad said it was wonderful for both of them to see me happy again. Because all their previous visits in the last 4 years have been when there was a reason for them to worry about you or, after your death, about me. It made them happy that this time they visited me and found me my chatty self again. That this time there was nothing sad about the visit. That they could see I am happy. And this in turn made them happy.

I wish I could let you know not to worry about me. I guess that is as good a birthday present to you as anything.

X
m

Celebrating Jane (and raising cash for the Cynthia Spencer Hospice)

2012-02-14T11:09:00.000+00:00

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.

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 confirm 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 occasion 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

Christmas without Jane

2011-12-19T11:07:00.000+00:00

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.

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.

Six months

2011-11-30T14:22:00.003+00:00

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?

2011-11-28T15:05:00.000+00:00

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.

Weird ways of missing Jane: Excel spreadsheets

2011-11-22T23:51:00.000+00:00

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.....

The Widow Clique

2011-11-21T13:23:00.000+00:00

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.

How grieving changes

2011-11-16T16:59:00.000+00:00

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.

Hallo Zij aan Zij lezers!

2011-11-12T12:54:00.000+00:00

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.

Jane's Post: What Radiotherapy is really like

2011-11-12T12:09:00.000+00:00

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.

Flowers

2011-11-10T22:23:00.001+00:00

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

What it is really like to be a widow

2011-11-08T20:24:00.001+00:00

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.