When I got the news about Nn I felt as though I couldn't cope with the stress of my stupid carers coming so I cancelled them for two weeks. It seems incredibly ridiculous that the people who are supposed to be helping me are actually causing more stress, but they are. Today was their first time back here and I was dreading it. I received the time sheet on Saturday so knew who to expect, and was dismayed to see that I'm stuck with the most incompetent of them all for each of this week's visits.
Tonight I wanted Stupid Carer Woman (SCW) to make a pasta sauce. I gave her a recipe. A very easy recipe for a basic tomato sauce with the addition of mushrooms and fresh basil, reminding her that both these ingredients would need to be very well washed because of the stuff that gets sprayed on them and to which I'm allergic. Fine. Left her to it while I finished off what I was doing on the computer, until she called me back asking if 'saute the onions' means to slice them. Feeling despair begin to spread over me I explained what 'saute' means, and went through the rest of the recipe for any more difficult words ... such as 'cook'!
I went off to have my bath, afterwards coming back through to find that what SCW had made actually looked okay. A huge surprise. I had my dinner about an hour ago, and was equally surprised that it tasted okay ... not fantastic, and it had a bit of weird after-taste, but okay. However, I'm now very itchy scratchy, rather wheezy, and my insides feel squiffy. I suspect that SCW didn't wash the mushrooms and basil very well, because this feels very much like an allergic reaction to something, and I haven't eaten anything else that I could be allergic to. I'm hoping beyond hope that this doesn't progress into anaphylaxis, but either way, this is something I really could do without.
The daily life of a brittle asthmatic. The experiences of the disease, of multiple and frequent hospital admissions, and of making the most of breathing when it's possible.
A favourite quote and a way by which to approach life.
Today is the tomorrow that you worried about yesterday.
Monday, 25 April 2011
Thursday, 21 April 2011
...Forever and ever, Amen.
It was Nn's funeral on Monday. It was in Dundee. I went north on the train, staying in Edinburgh, and doing a day-trip to Dundee. I saw seals in the Tay as the train went over the bridge into Dundee station. Seeing them made me smile in the middle of all my terrible sadness, and in some odd way it seemed apt that I should see these wonderful, wild animals enjoying the sea whilst on my way to Nn's funeral, because Nn loved the sea, was a very keen surfer, and could be somewhat wild too. My older step-brother, Nl, took Nn's surf board to the funeral and placed it at the front of the chapel before the service. He talked about Nn and his love of surfing in the eulogy. The last time Nn used his surf board was with Nl a very short time ago and apparently Nn had been full of life...
...Nn's guitar was placed at the front too, along with a bottle of vodka and his Newcastle United shirt - all things that meant a lot to him and made a mark on his identity. Nn played himself out of the world - a recording of him playing his favourite song of his own composition was played over the speakers as his coffin went down into the whatever-it's-called-at-the-crematorium-where-the-coffins-go-at-the-end-of-the-service. He chose when to exit the world, so it makes sense to me that he played himself out when he left the world completely ... except that he can't take my memories of him away, or the Nn-shaped hole that he's left behind.
When on the train from Edinburgh to Dundee I suddenly felt like I didn't want to do what I was doing. I didn't want to be on the train to Nn's funeral and I didn't want to go. Except that I did want to go and I wouldn't have missed it unless there was no way I could get there or I was too ill. Really, what I didn't want was for Nn to be dead and for me to be going to his funeral, and I knew that going there would make it all too real and undeniable. It did. It is. It is all too real. But the funeral also made Nn's suicide more unbelievable. It has been shocking. I don't mean that in a 'how dare this happen' kind of way, but rather that I am shocked/stunned/surprised. Everyone was. My older step-sister, A, said as much in her talk during the funeral service - that absolutely nobody had expected this. You know, he'd been at work in the morning. He was due back at work later in the day. Instead he booked into an hotel room...
Some have said to me that I must surely be angry with Nn for killing himself. I'm not. I don't think I ever could be. Why would I be angry with someone, particularly a family member, for being so desperately unhappy? Yes, I am angry that Nn is dead, but that is far from being the same thing as being angry with Nn. He obviously couldn't fathom any other way out of his despair, and he made a decision not to suffer any more. I respect Nn. I respect his decision. He did what he had to do for himself, and I accept that, even if it hurts like hell that he's dead.
Nn is dead.
I still find that difficult to see on the page/screen. It's one of those things that makes it both too real and yet more unbelievable.
I don't feel like I'm being very coherent today. Maybe it's because I'm still trying to make sense of it all myself, and that I'm trying to make sense of my emotions that are all over the place. Right at this moment I feel a little disconnected from my emotions, like it's the safest place to be emotionally or I'll become overwhelmed and dissolve into tears again, which is what I do at regular periods throughout the day. Other times I remember Nn and I smile, or feel the remembered frustration that siblings can induce when you're young. A lot of the time I feel terrible, terrible sadness, and almost all of the time something is reminding me of Nn.
You know, it was my birthday on Tuesday. It felt almost inappropriate to have a birthday this year. I got home from Scotland around lunchtime and a little later on I met W in town. We went for a quick drink in the sunshine before my OU tutorial. I was exhausted and didn't really have it in me to concentrate very well through the tutorial, but I did the best I could, and then W, L (from my tutor group) and I went for another drink. I had several, partly for birthday celebration and partly for inappropriate mind-numbing. Nn would have approved.
I want him back.
...Nn's guitar was placed at the front too, along with a bottle of vodka and his Newcastle United shirt - all things that meant a lot to him and made a mark on his identity. Nn played himself out of the world - a recording of him playing his favourite song of his own composition was played over the speakers as his coffin went down into the whatever-it's-called-at-the-crematorium-where-the-coffins-go-at-the-end-of-the-service. He chose when to exit the world, so it makes sense to me that he played himself out when he left the world completely ... except that he can't take my memories of him away, or the Nn-shaped hole that he's left behind.
When on the train from Edinburgh to Dundee I suddenly felt like I didn't want to do what I was doing. I didn't want to be on the train to Nn's funeral and I didn't want to go. Except that I did want to go and I wouldn't have missed it unless there was no way I could get there or I was too ill. Really, what I didn't want was for Nn to be dead and for me to be going to his funeral, and I knew that going there would make it all too real and undeniable. It did. It is. It is all too real. But the funeral also made Nn's suicide more unbelievable. It has been shocking. I don't mean that in a 'how dare this happen' kind of way, but rather that I am shocked/stunned/surprised. Everyone was. My older step-sister, A, said as much in her talk during the funeral service - that absolutely nobody had expected this. You know, he'd been at work in the morning. He was due back at work later in the day. Instead he booked into an hotel room...
Some have said to me that I must surely be angry with Nn for killing himself. I'm not. I don't think I ever could be. Why would I be angry with someone, particularly a family member, for being so desperately unhappy? Yes, I am angry that Nn is dead, but that is far from being the same thing as being angry with Nn. He obviously couldn't fathom any other way out of his despair, and he made a decision not to suffer any more. I respect Nn. I respect his decision. He did what he had to do for himself, and I accept that, even if it hurts like hell that he's dead.
Nn is dead.
I still find that difficult to see on the page/screen. It's one of those things that makes it both too real and yet more unbelievable.
I don't feel like I'm being very coherent today. Maybe it's because I'm still trying to make sense of it all myself, and that I'm trying to make sense of my emotions that are all over the place. Right at this moment I feel a little disconnected from my emotions, like it's the safest place to be emotionally or I'll become overwhelmed and dissolve into tears again, which is what I do at regular periods throughout the day. Other times I remember Nn and I smile, or feel the remembered frustration that siblings can induce when you're young. A lot of the time I feel terrible, terrible sadness, and almost all of the time something is reminding me of Nn.
You know, it was my birthday on Tuesday. It felt almost inappropriate to have a birthday this year. I got home from Scotland around lunchtime and a little later on I met W in town. We went for a quick drink in the sunshine before my OU tutorial. I was exhausted and didn't really have it in me to concentrate very well through the tutorial, but I did the best I could, and then W, L (from my tutor group) and I went for another drink. I had several, partly for birthday celebration and partly for inappropriate mind-numbing. Nn would have approved.
I want him back.
Saturday, 16 April 2011
Lost
I've been wanting update my blog over the past ten days or so, but I don't know what to say. I have been lost for words in a very real sense, yet my mind has been full to bursting with thoughts and memories, and I've been overflowing with feelings and emotions. Nn's sudden and unexpected suicide has had a huge impact on me. Everything I do, everywhere I go, everything I see sparks a memory, although rather strangely most of them have been from when we were both quite young. Nn as a boy scratting in his Lego, always making some amazing vehicle that would end up being blasted to pieces by his toy helicopter, usually while he/we watched The A-Team.
Saturday afternoon trips down to the little cinema - The Forum - in Hexham for a cheap showing of something or other. I think that's where I saw The Empire Strikes Back.
Coming back from a holiday on the Isle of Skye and stopping at a wonderfully long and deserted beach on the west coast of Scotland not too long after we'd arrived back on the mainland. A bright, sunny afternoon that warranted a break in the drive. Dad and K (my step-mum (she died in 1996 and I have another step-mother now - B)) went for a stroll up the beach; I don't remember what my brother M was doing, though he may have been with my brother C who was running up and down the beach and in and out of the sea in his usual hyperactive way; while Nn and I were mesmerised by the millions of tiny sand eels that were wiggling their way out of the sand and flapping, seemingly desperate, on the surface. We thought that maybe they would die if they were left to their own devices so the two of us set to task 'rescuing' them. We each picked up as many of the wrigglesome creatures as we could, ran to the water's edge and tossed the sand eels back into the sea, then ran back to rescue more. It was a fruitless task because the sand eels popped up out of the wet beach quicker than we could gather them and throw them into the water, but we spent the best part of an hour trying to save the lives of these little creatures. It was only when a fisherman who'd been gathering sand eels as bait, and had been watching us for quite sometime, told us that the sand eels would be fine if left on the beach that we gave up, although I'm not sure that either of us really believed the fisherman. He was the only other person on the beach besides our family, and he had a bucket full of sand eels that squirmed like live spaghetti.
Later on that long drive from Skye to Newcastle (an 11 hour drive!) we saw a pair of golden eagles. Nn loved birds of prey and had spent all week hoping to see a golden eagle. Dad pulled the car in by the side of the road where several others had also stopped to look at the birds. Our binoculars were buried somewhere deep in the car amongst the camping stuff so we borrowed those of one of the other people who'd stopped. Nn was beside himself with delight. A golden eagle! Two golden eagles! He'd seen the elusive birds for himself, and the only thing that would've made it better for him was if he'd been able to reach out and touch them as they flew.
Smiles. Big smiles. He so often had a great big smile when he was a young boy. Of course this changed when he became a teenager, simply because he was a teenager. In his early teen years he'd spend hours in front of the mirror, preening himself, trying to look like Tom Cruise (and there was a passing resemblence), and then he'd practise clenching his jaw in just the way that Tom Cruise does in films like Top Gun. Nn loved Top Gun. We had it on video and he'd watch it again and again, sometimes whilst scratting around in the Lego, but later making Airfix models of Tomcats (his favourite fighter planes) or Phantoms (my favourite fighter plane ... not that I'm hot on fighter planes - it was a case of sibling infection). We both got a cheap airfix plane from the market one weekend. We thought they were a bargain until we got them home and opened the instructions. There were no diagrams and the writing was all in Japanese or Cantonese or something. Neither of us were going to be beaten by this, and we perservered, but it was no easy task and there was a lot of cursing that went on in the living room that day while we sat there trying not to superglue ourselves to the furniture in our frustration.
And later, much later. Several years later and a different house later, waiting for ages, and eventually knocking in the door in desperation while Nn sat strumming at his guitar, composing songs on the toilet.
I came across a recording online of Nn in interview and playing a couple of his songs (and one by someone else) on a Scotish radio station. It made me cry. It's not that he was the best of song writers (though he wasn't bad), and his untrained voice could be rough around the edges, but hearing him sounding happy in the interview, hearing his liveliness, although also hearing a sadness in his music made me cry. It made me miss him more and more. It made me desperately sorry that he had become so desperately unhappy and lost ... so unhappy and lost that he hanged himself...
...It's his funeral on Monday. I'm going up to Edinburgh tomorrow to stay with Mum and will go to the funeral from there. I'll only go to Dundee for the day, going back to Mum's in the evening and coming home on Tuesday. I'm going on the train. I usually drive to Edinburgh, but I thought it best not to in the circumstances. Too emotional a trip.
So sad. So terribly sad. I keep wishing it'll turn out not to be true, that Nn is still alive... I keep crying because I know it is true and he was so unhappy. I cry for his desolation as much as I cry for the loss of such a fantastic person. Poor Nn. Poor, poor Nn...
Saturday afternoon trips down to the little cinema - The Forum - in Hexham for a cheap showing of something or other. I think that's where I saw The Empire Strikes Back.
Coming back from a holiday on the Isle of Skye and stopping at a wonderfully long and deserted beach on the west coast of Scotland not too long after we'd arrived back on the mainland. A bright, sunny afternoon that warranted a break in the drive. Dad and K (my step-mum (she died in 1996 and I have another step-mother now - B)) went for a stroll up the beach; I don't remember what my brother M was doing, though he may have been with my brother C who was running up and down the beach and in and out of the sea in his usual hyperactive way; while Nn and I were mesmerised by the millions of tiny sand eels that were wiggling their way out of the sand and flapping, seemingly desperate, on the surface. We thought that maybe they would die if they were left to their own devices so the two of us set to task 'rescuing' them. We each picked up as many of the wrigglesome creatures as we could, ran to the water's edge and tossed the sand eels back into the sea, then ran back to rescue more. It was a fruitless task because the sand eels popped up out of the wet beach quicker than we could gather them and throw them into the water, but we spent the best part of an hour trying to save the lives of these little creatures. It was only when a fisherman who'd been gathering sand eels as bait, and had been watching us for quite sometime, told us that the sand eels would be fine if left on the beach that we gave up, although I'm not sure that either of us really believed the fisherman. He was the only other person on the beach besides our family, and he had a bucket full of sand eels that squirmed like live spaghetti.
Later on that long drive from Skye to Newcastle (an 11 hour drive!) we saw a pair of golden eagles. Nn loved birds of prey and had spent all week hoping to see a golden eagle. Dad pulled the car in by the side of the road where several others had also stopped to look at the birds. Our binoculars were buried somewhere deep in the car amongst the camping stuff so we borrowed those of one of the other people who'd stopped. Nn was beside himself with delight. A golden eagle! Two golden eagles! He'd seen the elusive birds for himself, and the only thing that would've made it better for him was if he'd been able to reach out and touch them as they flew.
Smiles. Big smiles. He so often had a great big smile when he was a young boy. Of course this changed when he became a teenager, simply because he was a teenager. In his early teen years he'd spend hours in front of the mirror, preening himself, trying to look like Tom Cruise (and there was a passing resemblence), and then he'd practise clenching his jaw in just the way that Tom Cruise does in films like Top Gun. Nn loved Top Gun. We had it on video and he'd watch it again and again, sometimes whilst scratting around in the Lego, but later making Airfix models of Tomcats (his favourite fighter planes) or Phantoms (my favourite fighter plane ... not that I'm hot on fighter planes - it was a case of sibling infection). We both got a cheap airfix plane from the market one weekend. We thought they were a bargain until we got them home and opened the instructions. There were no diagrams and the writing was all in Japanese or Cantonese or something. Neither of us were going to be beaten by this, and we perservered, but it was no easy task and there was a lot of cursing that went on in the living room that day while we sat there trying not to superglue ourselves to the furniture in our frustration.
And later, much later. Several years later and a different house later, waiting for ages, and eventually knocking in the door in desperation while Nn sat strumming at his guitar, composing songs on the toilet.
I came across a recording online of Nn in interview and playing a couple of his songs (and one by someone else) on a Scotish radio station. It made me cry. It's not that he was the best of song writers (though he wasn't bad), and his untrained voice could be rough around the edges, but hearing him sounding happy in the interview, hearing his liveliness, although also hearing a sadness in his music made me cry. It made me miss him more and more. It made me desperately sorry that he had become so desperately unhappy and lost ... so unhappy and lost that he hanged himself...
...It's his funeral on Monday. I'm going up to Edinburgh tomorrow to stay with Mum and will go to the funeral from there. I'll only go to Dundee for the day, going back to Mum's in the evening and coming home on Tuesday. I'm going on the train. I usually drive to Edinburgh, but I thought it best not to in the circumstances. Too emotional a trip.
So sad. So terribly sad. I keep wishing it'll turn out not to be true, that Nn is still alive... I keep crying because I know it is true and he was so unhappy. I cry for his desolation as much as I cry for the loss of such a fantastic person. Poor Nn. Poor, poor Nn...
Thursday, 7 April 2011
All mixed up
It's been a strange time since I last posted. My lungs are still on the slip, and it's getting tedious. I've had a load of study to do for my OU course with an assignment that had to be in by today, and which I somehow managed to get done and sent off yesterday despite being exhausted. The exhaustion isn't helping the POTS and I've been feeling quite ill with that, and the tinnitus has been particularly bad. This in turn has made sleeping really difficult, and for several days/nights I haven't got to sleep until at least 6.30am, but in an attempt not to get the days completely upside down I've only given myself about 4 hours sleep. I've also thought that still getting up at a fairly reasonable time might mean that I have more chance of sleeping the next night, but it doesn't seem to have worked that way. And then today happened and my brain has turned to mush.
I got a phone call this morning from my brother M. He'd had a text from our step-sister A. Yesterday our younger step-brother Nn killed himself. I'm in shock. I don't know how to feel. I alternate between crying and numbness, and between intense activity (as much as the lungs allow) as distraction and complete inertia and inability to do anything at all. I can hardly believe Nn is dead... and seeing those words together on the screen make it all so real and stark - my brother (albeit a step-brother) is dead. Dead. What a horrible word.
It's so tragic, so awful, so unexpected ... yet Nn had struggled for years so maybe it shouldn't be such a shock. But it is. It really is. He'd messed things up for himself along the way, but he'd always had huge potential, and knowing him when he was younger you'd never have predicted this as the inevitable for him. Never. He was a talented actor, a good musician (although mostly self-taught), something of a comedian. He always thought he was about to make it big, but it never quite happened for him and instead of doing the things he enjoyed and was good at, he spent the times he was well enough to work (mentally well enough) mostly being a salesman in various designer clothes stores. He hadn't been well enough to work much over the past several years. He'd done a bit, but not a lot, and I don't think the drifting helped him, because he also lost most of his enthusiasm for the music, acting, comedy. And yesterday he lost himself entirely, and we have lost him too... but it's a lost from which he can never be found again...
I have a million and one things whizzing around my head at a thousand miles an hour, yet I feel like I've lost my words. A few friends have been in touch since I've told them about Nn, and a couple of them have reminded me that they're here for me if I want to talk. I kind of do, but I have no way of saying what I'm feeling. Even writing this is a challenge, not just because of the content, but because I don't know how to express the complexities of my feelings.
...Too much. So tragic. Such a waste of a young man who could've been so much. So horribly sad. He was thirty four.
I can't comprehend it, except that I can because I know myself what it is to feel so desperate that killing yourself feels like the only possible way out, and although I'm well beyond those feelings I've been reminded of them today. The memory of them has come flooding back, and that's making the news of Nn's suicide all the more difficult, even if it does give me an understanding that perhaps most don't have...can't have.
I can't think straight. This is a ramble. I don't care that it's a ramble, but I hate it that I can't make anything make sense even to myself - not just the situation, but my own words.
Nothing is right.
My step-brother is dead.
I got a phone call this morning from my brother M. He'd had a text from our step-sister A. Yesterday our younger step-brother Nn killed himself. I'm in shock. I don't know how to feel. I alternate between crying and numbness, and between intense activity (as much as the lungs allow) as distraction and complete inertia and inability to do anything at all. I can hardly believe Nn is dead... and seeing those words together on the screen make it all so real and stark - my brother (albeit a step-brother) is dead. Dead. What a horrible word.
It's so tragic, so awful, so unexpected ... yet Nn had struggled for years so maybe it shouldn't be such a shock. But it is. It really is. He'd messed things up for himself along the way, but he'd always had huge potential, and knowing him when he was younger you'd never have predicted this as the inevitable for him. Never. He was a talented actor, a good musician (although mostly self-taught), something of a comedian. He always thought he was about to make it big, but it never quite happened for him and instead of doing the things he enjoyed and was good at, he spent the times he was well enough to work (mentally well enough) mostly being a salesman in various designer clothes stores. He hadn't been well enough to work much over the past several years. He'd done a bit, but not a lot, and I don't think the drifting helped him, because he also lost most of his enthusiasm for the music, acting, comedy. And yesterday he lost himself entirely, and we have lost him too... but it's a lost from which he can never be found again...
I have a million and one things whizzing around my head at a thousand miles an hour, yet I feel like I've lost my words. A few friends have been in touch since I've told them about Nn, and a couple of them have reminded me that they're here for me if I want to talk. I kind of do, but I have no way of saying what I'm feeling. Even writing this is a challenge, not just because of the content, but because I don't know how to express the complexities of my feelings.
...Too much. So tragic. Such a waste of a young man who could've been so much. So horribly sad. He was thirty four.
I can't comprehend it, except that I can because I know myself what it is to feel so desperate that killing yourself feels like the only possible way out, and although I'm well beyond those feelings I've been reminded of them today. The memory of them has come flooding back, and that's making the news of Nn's suicide all the more difficult, even if it does give me an understanding that perhaps most don't have...can't have.
I can't think straight. This is a ramble. I don't care that it's a ramble, but I hate it that I can't make anything make sense even to myself - not just the situation, but my own words.
Nothing is right.
My step-brother is dead.
Labels:
asthma,
contemplation,
death,
family,
mental health,
ramble,
tiredness
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