On Loneliness and Grieving.

Seven summers ago I sat shiva. It changes you. People say I have a strange relationship with death; they’re usually people who thankfully haven’t had any relationship with it at all. But I don’t think that comes from losing a parent. I think I was always aware of the idea that people might not be there the next day. That trust was a hard gift to give when you considered the likelihood of being left alone at any minute without warning.

So when, indeed without warning, a matter of hours after happily hanging up the phone on one of several daily calls to my father, I was summoned almost wordlessly to his already dead body, no chance to say goodbye, I can’t remember feeling shocked. The often quoted feeling of  ‘this cant be happening to me’  never even crossed my mind. It almost made sense, somehow.

Back then, for whatever reason, I chose to focus on the positive in the situation for the most part. I felt grief, I tore my clothes, I cried what must have been buckets of real tears, don’t get me wrong. It was probably the saddest and most difficult period in my life. But I’m not sure I ever complained. I’m not sure I ever shouted and raved about how unfair it was. Anger didn’t come into the equation for me.

Not then anyway.

I’m angry today. With a lot of people. I’m angry that you didn’t phone me, even though I told you in advance what day it is. I’m angry that I had to tell you what day it is in the first place, and that I have to explain (even though you’ll never understand) why it’s important to me. I’m angry that you are allowed the immense privilege of not understanding, and I have to go through this, distancing me from everyone un-scarred and whole in my life.

I’m angry with you too. I can’t understand how you can let this slip your mind. How you can marry someone and have a child together, and never think she might end up in this position. And I’m so frustrated that now I’m here dealing with it, you can’t remember something as important as today and phone me up and see how I am. How can you tell me that this is all harder for you than me, if this day hasn’t even crossed your mind, in a fraction of the way it’s taken camp in my own these last few weeks?

I’m even annoyed at my family. For reaching milestones that he never will, for taking for granted relationships he will never experience, simply for not being his sons, his wife, his nephews, nieces, parents, siblings. Mostly for leaving me the only one who feels this, and giving me no outlet to satisfactorily share it, and in most cases for hardly trying. I can’t pick up the phone and ask for a memory that’s slipped just out of reach, because no one else shares it, or worse still, because the risk of blank faces is just too frighteningly painful. I just have to wait while it fades further out of mind, losing the very puzzle pieces that made up a man’s life. I can’t pop round anywhere to reminisce, because no one shared our relationship.
Ironically, this was the very fact I so eagerly clung to while I sat shiva at 19.

It was only me. I was so proud to alone walk my Dad out of this world with dignity, to do the customs and laws that a family member does according to Jewish law, all on my own. I felt I was really making a difference, really proving that our relationship had always been him and me, and that was no different in his death, no intrusions. It was almost sacred- just the two of us.

But now it’s the one of me.

So I’m angry with You most of all. Not for taking him away from me, that’s too easy, although as I grow up I realise just how cut short his years were, taken at 63. But it’s the way of the world after all, a child losing a parent. But mainly for the way You left me here.
My mother wasn’t his wife, my brothers weren’t his sons. My husband and my son never knew him, I have no uncles or aunts, no grandparents. To make things slightly crueller, there could have been a lifetime companion to share this grief with, miscarried at seven weeks. At one year old, I was destined to be entirely alone in this, and I didn’t even know it.

So I sit here, writing mainly to myself, the only person who has been feeling this day approach with a heavy heart, and the only one who woke up this morning remembering, and wondering what might have been.

Today would have been my Daddy’s 70th birthday. Not old, not really, but seven long years gone. My life is truly so changed since he knew it, that I wonder if he would recognise me at all. And yet the people in my life now, have moved on from even the memory of ‘him and me’ to the point where they can’t remember the importance of today even when I’ve told them directly, let alone out of care of me. It’s not their fault, why should they? It’s only me who is stuck in both times. Missing and living simultaneously. Both getting on with life, and coping with death.

Still, I cant help but wonder whether the burden would be lighter to bear if there were anyone else to share the load.

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A Letter to the Experts.

Dear multitude of doctors / specialists / experts in your field that we have seen in the last 36 months,

Hello. I’m R’s mum. You might not remember who I am, although I generally see you biannually. That’s fine, you have plenty of patients, I’m sure only a handful stand out, and even less so by name. As a kid, I always took it for granted that my optometrists and the like knew my name and age, not supposing that the file on their laps acted as a subtle cheat sheet. It’s one of your many mythic properties, to remember and care for everyone individually.

But now I’m grown up, and my son is the patient. And while I don’t expect you to remember that he doesn’t like to speak in new places so there’s very little point you asking him if he likes cars, or that we don’t actually use that particular obvious nickname so he wont answer to it, I do expect a few things.

I expect you to remember what condition he has, and what you told us last time. It’s easy really, it’s all written on that very same cheat sheet. After all, we’ve been sitting in your waiting room for nearly two hours, another two minutes wouldn’t have hurt while you scanned your own spidery writing from six months ago. In contrast, I don’t need to be told as if for the first time that my son has Nystagmus, as that’s as obvious to me as you telling me his gender by now. I know his condition, I live it every day. That patronising explanation of what the condition means and what areas it may affect is a bit unnecessary, as after all, your notes would tell you that I have it too.

If I’m meeting you for the first time, there are a few ways to ensure we can be friends for life. Because I’m already your biggest fan, you’re helping my son. Anything you can give us in the way of advice, support and help is worthy of the boatloads of gratitude I continually give to the amazing people who work in our healthcare system. So it takes something out of the ordinary to shift my adoration in a first meeting. I’ll warn you from the outset so you can keep my boundless respect. Please don’t ask me “what’s wrong with” my son. Nothing is wrong with him. He has a condition. If he wasn’t too young to understand that comment, I would be outside drafting my letter of complaint right now.
Please don’t address my scepticism with I’ve been doing this for years… because all a mother hears is the silent …but not with my child, which is so easy to end the sentence with. Your years and your credentials mean nothing to me, if you cant try and get to know my kid as an individual.

Please don’t laugh and say “That’s the first time I’ve heard that one!” when I tentatively mention that another doctor has said something  that differs from your point of view. If I can’t trust them, then ipso facto I can’t trust you. And if I can’t trust any of you, and I don’t know who to believe, then you’re saddling me with decisions and choices that I have no way of making on my own, and taking away the pure relief of handing over at least the medical side to what should be wiser heads than my own.

Try not to judge me instantly. I’m a mother, worried and proud, but that doesn’t make me hysterical and biased. I work, and enjoy it, but that doesn’t mean I neglect my son or don’t want to put the effort in. I’m a person, impatient for progress, but that doesn’t mean I’m looking for a cheat or a quick fix. And if I am guilty of any of the above? That’s okay too, because you don’t know my whole story.

You don’t look at my son with my eyes. You can’t see him, tiny and blind, with parents hopefully cooing at his sightless face, hoping for a response that he even knew we were there. You didn’t sit at home with me, too scared to go on play-dates with other excited new mums in case they asked me why my five month old didn’t smile. You didn’t share my joy when the smiles came, the movement came, the speech and understanding came at long last.

So if I want more information than you feel like explaining to my layman’s ears? I want more time than the ten minutes you’re allowed to give me, or more estimations than you’re really supposed to divulge at this stage? Humour me. Answer me. Don’t try and distract me away from answers to legitimate questions which you’ll forget as soon you close his file. Because I’ll take them home with me to fill my evenings with, for six more months until I come back resolved to ask them all again. I’ll worry and stew over your poorly chosen words and ambiguous predictions for the year ahead, until my friends and family are bored of hearing the same confused summaries.

He’s just a file to you. I can’t make him be anything else, and I’m glad. I need you to make the cool headed decisions and uninvolved assessments that I can’t ever make, and wouldn’t want to. But I’m not a file. I’m a mother. And I’m still here when that file closes. 

Dear Dad…

I’m so sad tonight. I wish I could pick up the phone and call you up and tell you how I’m feeling and let all my frustrations out. You would probably listen awkwardly because I’m a woman and I’d be crying, and then you would tell me a story that hardly seems related, but somehow makes me feel better anyway. I would put down the phone feeling all cried out in the way you normally can only be when you’re by yourself, but in a good way, instead of this lonely aching feeling that I’m left with right now.

You never met R, so I don’t know how you would deal with his visual impairment or his and our frustration at his speech delays. For all I know, when it comes to his medical history, you would be just as unhelpful as my remaining parent, not knowing what to say or do to help, or how to be supportive in the way we need. But I do know for certain one thing, when it comes to his everyday life, you would be here.

You would take me to appointments when I needed the company, you would be phoning off the hook every day to see how we both are, you would hug me when the terrible two’s were driving me mad, or there wasn’t anything helpful left to say. I can’t imagine a day going by where you wouldn’t want to see us both, to hold your grandson, to sit with your daughter, and just while away the time with us both.

You would probably tell me that it’s her depression and the years of being alone, but you’ll have to excuse me for insisting that it is still not normal for a parent to not want to see their grandchildren. After almost three weeks of no contact, it is not normal for a parent to have to be bullied into spending some time with their daughter and grandchild. And yet that’s what happened today. And I don’t know why I bothered. After an hour and a half of sitting on my couch watching him while I played with him, a large portion of that spent with her eyes closed, she left. My mother hadn’t hugged him, kissed him, read to him, or even touched him. She hadn’t even moved from her spot on the couch to go down to his level and join a game.

It’s true- I might imagine you being here through the tragically rose coloured glasses of knowing you never will be again. But it’s not the fact that you’re gone that tells me you would hardly let R go if you had the chance, it’s just fact. Because somehow, with one parent who told me she had to ‘learn’ to hug me when I needed it, I still grew up affectionate and loving to my friends and family. Even though I’ve been told that I’m loved the least out of her children, I’ve somehow got a sense of self-worth and belief. And I didn’t give myself those things, you did.

So I know, with the certainty of really knowing a person, the way I’m coming to believe I never will know my own mother, that you would be cuddling and playing and singing with my little boy every chance you could get your hands on. You would call, probably too much, to find out how we are and to tell us you care. It wouldn’t be a chore, or something you needed to be reminded to do or argued into.

I don’t worry about R, the way I sometimes worry about myself. He has two parents that know how to make him feel loved and special. Thank God, he doesn’t need you in his life to make him feel supported and worth something.

Sadly however, I sometimes think that I still do.