Wednesday, 24 July 2013

I have had a magical day.
And I am very happy about that.
But I am also in more pain than ever.

The hopeful message is that it is possible to have a happy day - genuinely. So, go out, meet a friend, laugh, drink that wine, dance to that song like no one's looking.
The horrible truth is that the happiness of the day doesn't make the ache go away. So don't be surprised if when you shut your eyes, you feel more tortured than ever.
A little helpful hint from me to you, if you are in a torturous place too, like me.

Tuesday, 23 July 2013

What is a 'normal' family?

I wrote yesterday about how kids with 'special' responsibilities develop special abilities, and take on personas that help them cope.  Or, to sound less like an Expert, I wrote about my personas (just two of them) that helped me cope. I've no idea if these are universal. Perhaps I am just messed up. 

At any rate. 

That post got me thinking about who the 'normal' families are and whether there even is such a thing.  I don't want to this to turn into a research paper, so I'm just going to list all the 'family types' where I think kids might have more emotional or practical responsibilities than my imagined norm. Each is followed by a question mark for obvious reasons. 
  • Single-parent households? (E.g. through divorce, bereavement, personal choice)
  • Households where grandparents or other relatives are care-takers (instead of parents)? 
  • Households where a sibling has been ill or died?  
  • Households where someone has a physical disability other than illness?
  • Households where a parent or child is ill for a long time? (Keep in mind the huge numbers of people who have the so-called 'lifestyle diseases' now. Chronic, long-term conditions that require continued care and can sometimes be very debilitating and involve complications.)  
  • Households crippled by debt? 
  • Homeless families? 
  • Families who have to move a lot for work?
Is it possible that within each of these, kids take on relatively more emotional responsibility than the imagined or actual norm?  Is there a norm?  What is it?   

And more importantly I think, if there are so many types of situations where this kind of thing can happen, are many of these kids feeling alone?  Like I did?  Like I still do?  WHY? 

Monday, 22 July 2013

I am exceptionally afraid of physical suffering because of the suffering I have witnessed.
I am also afraid of my own fear - of its implications.  I really do believe that what we fear, we only bring closer to us.  

I remember, very clearly, the first time I thought that I would have a horrible, long-term illness.  I was very little, and at dinner with a family friend.  She is a doctor and my Father and her were discussing the recent news that HIV/AIDS was turning into an awful global epidemic (remember this was the late 80s or early 90s).  I was curious and wanted to know more.  They explained the disease and its cause and prevention.  I said something to the effect of, Well. If I get that AIDS thing, I'll fight it off.  My Father's friend said, You can't fight it. You have to just not get it.
For some reason, I could not process the fact that I would just avoid this new disease they were talking about, and leave it at that.  I thought to myself. Oh. Maybe if I don't get AIDS, I'll get cancer instead. For some reason, I couldn't compute a disease-free life.

That thought stuck with me.  Now, just over two decades later, I am more afraid than ever.  And I mean, really afraid.  Heart-disease is in my family, but do I fear it? No.  Is it a fearsome thing? You bet. It sucks big time.  But it isn't in my consciousness.

Maybe fearing an enemy you have never seen is easier than fearing the one you've observed closely.  And maybe we are conditioned to fear things.  Even as children.

I want to know how to un-think that thought I had, way back then. I want to live free of the fear that I will suffer, and free of the burden of remembering the suffering I have witnessed.  

Parents with special needs, kids with special abilities.

Every household has it's own dynamics and everyone develops habits to navigate them. The way I grew up, I think I developed special abilities with two, related roles: 

I've become practiced at playing these, and seem to be able to recognise very quickly when others are too. 

The care-taker is the child who magically understands your moods, needs and limitations, and moulds herself subtly to suit them. She might not be the child who does the dishes, he might leave a mess on the floor. But he will be the one who can sense you are sad, and hug you. He'll sometimes seem to know what you need. More often than not, she'll grow into a teenager who other people go to for advice. The one who can mentor younger children with ease.  
The caretaker is the child who seems to see. The child who can sense. 

The victim is the child who knows precisely how to use a situation - any situation. To generate attention, love, a cuddle, a lollipop, a day off school, a delayed exam. The victim is the one who can get off the hook by claiming extenuating circumstances. Often, these will be extenuating circumstances which everyone will understand. My Father is ill. My Father is dying. My Father this, my Mother that, my feet this, my head that. Often, the victim hides behind a pillar of competence. That's because he is the care-takers twin. He keeps her alive by allowing her to fall down in a heap. She keeps him alive by picking up the slack. 

Together, they dance through the years, pulling and pushing this way and that, balancing the see-saw. They give power, they draw power. They expend energy, then they suck it back up.  

Finally, when the abyss which was the 'extenuating circumstance' is finally over, it takes time and effort to overcome that mad dance, and move towards a better balance. I don't know if I can do it, but I know I want to try. Both roles are exhausting, and though life may be a stage, playing these roles is more puppet-dance than glorious stagecraft. 

If you are caring for a child who has more responsibilities - practical or emotional - than 'normal' children, look for this. Tell me if what I've seen, looking back at myself, is also looking up at you. With a too-knowing smile, or an anguished and powerless grimace.  
At work, I am confident, decisive, enthusiastic, energetic and focused. 
I wonder how that, and the forlorn child inside me, can co-exist. 

Sunday, 21 July 2013

What it feels like to lose a parent you loved

I feel that hollow, dejected, despairing, sad and panicked feeling you had as a child, when your parents were to pick you up from school but were very late. Or perhaps you had it one day as you walked with them on a crowded street, suddenly realising that you were not holding their hand anymore. You remember this feeling? That's what it feels like. 
I once asked my Father, Do you actually love me? I was 16 or 17, and really in a dark place. I was crying, and he was reprimanding me for something I'd done wrong.
I hurt bad enough to ask it through tears, in a hotel lobby in Singapore.
I don't remember what he said in response, because the answer was not of course I do.

Years later, he said it more. And I understood to read his actions more. But something stayed hidden from me that I felt I could never quite touch. Something reserved for my Mum and sister that I could never quite match. No matter how well I later did, or how well I took care of him when he was sick, or how guilty I felt when I was in England. In the months and years just preceding his passing, he said it actively and often. I hung on to those words like I've never hung on to anything before. Our last words to each other were I love you Papa and he said I love you to. Yes, I do.

I wish I could hang on to them always. I wish I could believe them always. But the old doubts return. I hear that he has sent a sign to my Mother and sister and wonder why I am not selected to receive these. Without asking, without begging. I hate that I then feel rejected, and in turn, feel a stab at anger at him and at them. I feel like turning away and saying, fine, I get it. It's just not there for me. Some people just do not feel a certain way about some people. He loved me as much as he could. I should love myself unconditionally and deeply and then I will not feel this need.

But for now, that line of reasoning doesn't really work.

I feel it's important to say that I do feel sorry for myself when I think about this aspect of my life. I have spent many hours tormenting myself for "feeling sorry for myself" and thus trying to push it all down.
I should clarify that I am trying to overcome the ridiculous notion that one cannot feel sorry for one's own pain. If I was my friend, or a sister, I would feel tremendously sorry. I would cry for me. And then, I would try to help.
That's what I'm trying to do here. 
So. More on anger. 
I was asked by Mum why I didn't sound so hot. 
I said I didn't want to talk about it. She sounded concerned. 

I should clarify that she always sounds concerned, and that my anger about being unable to communicate with her is not because she never asks, or is dismissive.  She asks. It's just that her subsequent responses shut me down completely. 
Responses like: Yes I understand it's just a shattering kind of loss. I know, because after all, I've lost my spouse. 

The first part of that response primes to recall all the uber-drama of many years past. As a result of those years, I've become allergic (literally - I break out into hives) to anything that I perceive to be nonsensical amounts of dramatics, hysterics or OTT-ness.  
Excitement, I can do. Squealing about pretty things, I can do. But frame a problem in nonsensically sad terms (even if it is nonsensically sad,) and I can't take it. My first instinct becomes: It's not that bad. Pull yourself together

The second part of her response - after all I've lost my spouse. Well. Who the fuck is competing. It makes me feel invalidated and subordinated. It makes me feel like I have to turn my caretaker on and console her
Sometimes, this is fine. But I detest it when people attempt to console you by pointing to their own greater misery. It kind of defeats the fucking purpose. 

The anger stems from my expectation that I should be able to talk to my Mum. The expectation stems from the fact that once, I felt like I could. No,  I knew I could. In fact, she was my sole confidant and closest friend. I felt understood, protected and loved unconditionally. I still know that I am loved but something has changed and I don't know how to change it back. Every conversation stresses me to the point of a headache because I start out wanting a different kind of conversation, an authentic communication, but our habits of communication inevitably lead us down the same old paths. I hang up feeling resentful and very angry. I think she hangs up feeling sad and confused, wondering where her daughter really is.  

I don't know how to change this. 
I've tried many different things none of which really work for prolonged periods. I still want it to change - I'm not able to accept that we might never feel connected again. That would be a terrible loss for me. I feel stuck, sad and scared that that is the way it's going. 
Today, I am in pain.
I would so love to hear my Father's voice.  I wish I could call him and hear him as he was before he was ill. He was so lovely to talk to. Always encouraging, calm, strong, cheerful and positive.  Always caring and asking me if I was having a good time, if I had anything good planned for my evening and weekend. Always ready to dispense medical advice if I had a cold, or felt down. Always ready to listen if I'd had a fight with the Man.

Over the last year or two of his life, these conversations gradually tapered away. I was so reluctant to share anything that might worry him. I was also reluctant to share anything that betrayed the fact that sometimes I was actually happy and having a good time. I felt guilty, and restricted my communications to reports on how busy I was at work, how much I was working, how much I was reading, how much I was writing.  I felt like if I was going to be away from him, there had to be a good reason. Living a calm and normal life didn't feel good enough.  So I was always 'busy' or 'tired' or 'boring'. Many times I thought my way into such a place even if my life was going well.  When he was in hospital and I knew he would not wake up, I was told to 'tell him everything I needed to'.  Characteristically, I could not speak.  Except to say I love you, Thank you, I love you, Thank you, over and over again. Aloud, in my head, in whispers, through sobs, through smiles.

Like I said before, perhaps that is the only thing that needed to be said. But today,  I miss sharing the smallness of my life. I have period cramps. I am going to Birmingham on Tuesday. I am wondering when my hair is going to grow long enough to have a chignon. Are there any vitamins I should take to make my hair grow longer Papa?

I worship the God of Small Things often. That it is the wellspring of my life. And I feel like if I can't share that, something very fundamental has been lost.     

What do I need?

I've spent a lot of time bleating about being unable to communicate my needs. I wonder if I even know what they are.
So I ask myself: What would make me feel better? Here is a list that I typed without thinking too much about it. I'm sure I need to articulate it all better, but here's a first go:

  • Some kind of sign from my Father, meant for me and only me. A sign of love, a sign that all my doubts were stupid and false.  
  • The ability to tell my Mother how angry I am, with him, with her, with myself and with the situation we had.  
  • Finding a friend who has been through close to what I have. So that I know it's not such a cataclysm after all. Others go through it, others survive, and yes, it hurts like hell, all the time. And so that we cal tell each other the great secret: Sometimes I am not brave at all.   
Fear of loss, over years and years, has shaped me in so many ways.

Growing up, I had marked separation anxiety. When my parents dined out, or I was visiting family in other cities, I felt incredibly distressed. I'd cry, I'd imagine they'd never come back, I'd imagine my sister and me left adrift in a big bad world. I was unable to overcome my homesickness in boarding school when I went there at age 16, and had to come home after a year because I just could not handle it. There were many things about boarding school which were basically terrible, but I think my inability to be away from my parents contributed a lot to my misery.

Thereafter, I spent some really happy years going to school and college in my own city, living at home, making friends and learning new things. When it was time to decide whether I would go to University, I was ready, and could make a relatively easy transition from living at home to living in England.  At first we all thought it would  be  a just a year's sojourn. That turned into three more years (PhD), one more year (new job!), yet another year (Post-doc). So, here I am. Seemingly able to live my own life at a remove from that of my parent's.  But of course, part of that is an illusion.
I am home 3 times a year.
I am on the phone every day. Sometimes twice, three times. My Mum calls me, I call her.

Home was constantly on my mind when my Father was ill, because I beat myself up about my 'other' life. I tried to live it at a frantic pace, just in case it was snatched away. But I also said that I'd give it up and go home forever (which of course, hasn't happened yet).  I thought I could make a choice, but actually, came to realise that both parts of my life were important to me, and that it would do violence to some part of me to choose one. That kept me from making a stupid mistake, but it kept me split too.

I sense that now is the time to slowly move towards being whole again. It's going to be a long journey, but it's one that I sense I am about to take.