Archive for the ‘documentary evidence’ Category

note to self

Wednesday, March 17th, 2010

Dear self,
Just because you are doing fairly well and better than you have been in many years, please remember that this does not make you invincible. Just because you haven’t had a panic attack since July last year, it does not mean that it is no longer possible. A word of advice, if in the future, you happen to notice that a bus is overly crowded, next time it might be an idea to just be patient and wait for another one to come by. Perhaps find a way with dealing with people who think you are unreasonable, I doubt that will change. Well done for stopping to close your eyes and breathe even though you were in the middle of a busy street, and people were probably staring at you.

Don’t worry, it was just a stumble, not a fall. Just wanted to say, I’m looking out for you.
love,
self

sleep pretty darling, do not cry

Tuesday, March 16th, 2010

It’s amazing how when the penny drops and we realise that her behaviour is stemming from fear and abject terror at the prospect of losing someone/everything again (as she did when she was only 18 mo old), how much easier it is to bear that behaviour from her, how much easier it is to keep cool. It’s frustrating feeling so thick sometimes and thinking back on all the times I have lost my temper with her, if I could just remember, if I could just hold on to the fact that in all of her willfulness, in all of her stubborn, selfish, sometimes seemingly nasty outbursts, that she is just a scared little girl who needs me to stay calm and reliable, more than anything.

And that I love her more than she could ever imagine.

I love you, go away.

Sunday, March 14th, 2010

Flower and I didn’t have the easiest of times last week. So many of the old behaviours and rejections came rushing back to test my still very new found and a bit shaky stability.

A conversation we had, several times last week:

Flower: I’m scared of you mummy.
me: What was that?
Flower: I’m scared of you mummy.
me: oh! Why are you scared of me, Flower?
Flower: Because I love you.
me: What??
Flower: Because I love you.

ouch.

The first time she said it, I thought it could just have been a confused mush of words (she’s very good at confused mushes of words and concepts that don’t go together so well), but after several times, and the context around when she said it, I am certain she knew exactly what she meant. Even if she could not completely understand it.

Mummy did.

11 out of 16 ain’t bad

Wednesday, March 3rd, 2010

Just counted 11 empty syringes in my big yellow sharps bin.

It should have been more, but I have decided a few things:

  1. I am not going to beat myself up for not doing it perfectly.
  2. I am not going to inject anywhere near the left sciatic nerve.
  3. I am (at least for now) going to give myself 2 nights off a week.
  4. I will drink red wine and eat chocolate.

Just saying.

the life transplant — part 4 — the finale

Thursday, February 25th, 2010

Leonard’s story is a true one. In the years between 1917 and 1928 there was a worldwide epidemic of Encephalitis Lethargica (EL) which left patients in a seemingly catatonic state. (Warning: If there is anyone who has not seen or does not know the story of Oliver Sacks and the EL patients as told in the movie and book Awakenings, this post will contain plot spoilers.) In the summer of 1969 neurologist and author Oliver Sacks (renamed Dr. Sayer in the movie, as suggested by Sacks himself) was the wizard who experimented with the brand new, in ‘69, Parkinson’s drug Levadopa (L-Dopa).

And they woke up.

People like Leonard who had been asleep for 30 years since childhood or young adulthood — they-woke-up!

Can you begin to grasp the enormity of that? To fall asleep as a child and wake up in your 40s? What the world must have been to you after all that you had lost! What emotions would you have to deal with, and would you be ecstatic to be alive or angry for the life you had lost? What about the family you had left behind in your illness, then regained as a different person? What about the griefs, the loved ones who died, after you had fallen asleep, to wake up and find out they were gone, but you were here? What about the new technologies and culture which you didn’t see evolve slowly, but were introduced to in a flash? What about discovering life in a very post pubescent body having never been old enough perhaps to even fancy someone before? Well, Leonard and the other EL patients treated by Dr. Sayer/Sacks went through all of these confusions.

What does that have to do with my own story? Anything at all? Maybe.

You see, those little red tablets The Wizard prescribed for me, although they weren’t L-Dopa, are used for the same thing, to increase dopamine in the brain. The two drugs are sometimes used in combination with each other for Parkinson’s patients. Dopamine is one of the three neurotransmitters thought to play a role in clinical depression and it is the neurotransmitter responsible for pleasure and motivation. Dopamine has to do with energy and rewards and is implicated in the ability to experience love. I have read that we are all dopamine addicts.

I don’t want to describe the life that I had wanted to replace, that’s another story and not for here, but if you can imagine a life with absolutely no motivation and no pleasure, no reward and therefore no will, though it doesn’t constitute catatonia, it’s not really something that you would prize. The difference within 5 days of taking a dopamine agonist was not only startling, it was a bit scary too. As the EL patients, I was both ecstatic to be alive and angry for the life I had lost. And I was now awake enough to be aware of how much I had lost. I thought I had been before. But there was more. More I hadn’t seen before. And having played with my brain chemicals it has taken me a little while to find my feet again when it comes to relating to other people. I still don’t feel that I’m getting that part right. I can’t seem to read people, situations, emotions quite like I used to. I hope I get used to it.

My general pessimism hasn’t completely gone, either. That’s developmental and too entrenched. So the thought can’t help occurring that if it’s too good to be true it probably is.

Sadly, Leonard’s story does not have a happy ending. He began to develop a tolerance to L-Dopa, as all the EL patients did. His condition began to deteriorate until he reentered a catatonic state. And his mother had to watch. She lost him again. And he lost everything. Again.

I’ve been traveling this road with MS and depression for more years now than I haven’t, and I am aware of the instability of things. I am aware that everything changes, life is gained and life is quickly lost. I don’t know what will happen next in my story. I don’t know if I will continue to find a balance (it hasn’t been very long like I now am, anyway). I don’t know and sometimes I get scared. Will I simply “forget how good it is” “what it is to be alive”? I will probably “need to be reminded about what [I] have and what [I] could lose.”

And I’d like to find a way, with all of my gains and my losses, with all of my joys and my griefs, with my new life and the lives that I have known to make them one life and not many. To make them an integrated me. Not one that bounces back and forth between this and that.

And you, my friends, help. You do. You are able to remind me how good it is. Because if it starts going back to my old life again, like it did for Leonard, I don’t know what I’ll do.

the life transplant – part 3

Wednesday, February 24th, 2010

And then. . .

. . . The joy of life.

out on a limb

Wednesday, February 24th, 2010

Don’t reject me today, dear reader. Please. At least wait ’til tomorrow.

You see, I put myself out on a limb last night, and today I’m feeling just a little bit vulnerable. I don’t know why I did it, I’m not 23 anymore. I haven’t been for quite a long time. And of course I felt it.

So tomorrow I’ll go back to being your storyteller. But today, I plan to lie low and lick my wounds.

the life transplant – part 2

Tuesday, February 23rd, 2010

So I walked away from the pharmacy clutching my little red pills, dubious that something so simple could metamorphose the ruptured life that I had so carefully placed on my shelf for safe keeping, storage and dust collection into a new jumping, singing and dancing life that would get up, hop down and make itself known.

Day 1 — I knew it wouldn’t work. What do I do now?
Day 2 — hmm. . . then again. . .
Day 5 — this isn’t my life! OHMYGOSH I have a new life!!!

Each day, I seemed to gain a new feature. At first I was ecstatic! All my old life ever did since it got dropped was sit on that shelf and get dusty. My old life was a constant disappointment to myself and to others, never living up to the manufacturer’s grand claims of what it would be able to do. But this new thing. . . this new person I seemed to be becoming. . . well, it just worked. It got up and moved almost like it was supposed to. And oh, the freedom of leaving the house! Oh, the places beyond my front step! I was shaky on my new legs, but learning to walk quite quickly.

And I was loving it!

But by Day 10, the post transplant confusion had begun to set in. Waking up one day and finding that you’re in a different body after having spent so long in the old one creates a bit of whiplash. Everything happened so quickly. Everything had changed, in such a short time, but the memory was still in tact. I still had the old memories and the old experiences, but they no longer fit the new person and I didn’t know what to do with them.

I began to suspect that I might have noticed a few unwanted aspects to this new life, but decided to ignore them. I was probably just overreacting, and besides, it was better to have a working and fully functional life with a few unwanted characteristics than it was to simply be broken. . .

. . . wasn’t it?

(to be continued. . . )

the life transplant

Monday, February 22nd, 2010

About a month ago I decided that I didn’t like my life and I didn’t want it anymore. So I went to my doctor and asked if I could have a new one transplanted in the place of my existing one.

We discussed all the different lives that medical science could make available to me, and having done my research, I knew which one I wanted to try.

But my doctor said, no, they had never transplanted that kind of life before and wasn’t confident enough to try it. But I could have this other one, over here.

So thinking that it was my only option to get rid of the life that I had, I agreed. Doctor wrote me a prescription and said that my new life should start to become evident in about 2 to 4 weeks.

Dubious, but obedient, I took the script to the pharmacy, got the little tablets and took them home. Still dubious, I wanted to look up what the features of my new life would be before I committed to it, and. . .

. . . NO!!! I don’t want that kind of life either!!! So back I went to my doctor, and asked once again for the original type of life that I wanted to transplant mine for. Doctor’s head shook, and I was sent to the transplant consultant,

The Wizard of Oz!

who would give me further recommendations and take responsibility for the proceedure.

So off I travelled down the Yellow brick road, wondering if I was truly going to be seeing a wise and grey bearded, old man who would fix my life for me, or simply a short little coward behind a curtain who was pulling levers and shooting flames up to make himself look bigger.

Again, we talked about the various lives that I could possibly trade my failing one for, decided that whether he was wise or not, I would have to take his advice as the only way I could trade the old for the new, so I said yes.

The wise and/or presumptuous wizard wrote his recommendations to my doctor, who sent me off to get more little pills, and told me that he would send some needles in a few weeks time to make the transplant permanent. Pills would perform the transplant, syringes would prevent rejection. All of these things, I was told, would start to transform my old unwanted life into a shiny new one.

(to be continued. . . )

Diary of a Disease Modifying Treatment (DMT)

Wednesday, February 17th, 2010

Day 3, injection 3

oops.

Much less painful than last night (I’m certain I must have jabbed through a nerve to get that much pain. Everyone I speak to on the stuff says it hurts, but not to that extent!). But then the reduced pain tonight probably has something to do with me reading the auto injector wrong and thinking that the syringe was empty and removing the needle before it was done discharging its contents.

There’s enough pain and redness there presently, however, to reassure me that a fair amount has reached my system even though a fair amount was wasted.

I didn’t do it quite properly, but I did it. And after last night, that’s kind of a big deal.

sniff

Tuesday, February 16th, 2010

Day 2, injection 2.

I cried.

I am a wimp.

Feeling blue.

I don’t want to do this anymore.

But I just can’t let myself relapse again. It’s just too important. I lost too much last time.

Very sad. And sore. It hurts. It really hurts.

I’m really not feeling as strong as you’re telling me that I am. But thank you anyway. It helps.

the needle and the damage done part 2

Monday, February 15th, 2010

I wrote last night in anticipation and nerves of what was about to come. This morning I have a known quantity, and am feeling very disheartened about it.

I can deal with many things. But when it comes to pain, honest to goodness pain, I’m a wimp. And the disheartening comes from the feeling of having to live out a kind of prison sentence, a set punishment (for what? what have I done?) of an indefinite length. I am going to have to do this every day, perhaps for many, many years to come.

I feel sad and immature like a child yelling at their teacher who has put them in the corner for something they didn’t do, “It’s not FAIR!”

After 14 years I would have hoped that I’d have come further along the road to accepting my lot than I have done, and am ashamed at my childishness.

the needle and the damage done

Sunday, February 14th, 2010

Tomorrow I must face the inevitable.

There are no more questions to ask or decisions to make about it, it’s no longer a question of ‘do I or don’t I’, or of making the right or wrong choice, no more worry, no more denial. It’s a done deal. Despite all fear, regardless of positive or negative results, it is going to happen. It is meant to become as much a part of my everyday life as eating, and to be done with just as little thought. Just something to do and get on with.

It feels a bit like a turning point to be back here. I’ve demonised and avoided the drugs as long as possible. And now I just need to find a way to accept it.

Everything’s changed now, anyway.

buzz buzz buzz

Thursday, January 28th, 2010

Ok, so suddenly, almost in an instant I have more motivation than I’ve had since high school, and more energy than I’ve had since emigrating and have kept it up for over a week. FANtastic!

. . . but unfortunately, as I was like when I was an energetic, motivated high schooler, I seem to lack the focus and ability to usefully apply myself to accomplish anything effective. It’s a bit more like I’m wearing a caffeine patch than it is that I am a highly successful and healthy woman.

Oh well, one thing at a time, bird by bird, baby steps to the goal post, etc, whatever…

cold comfort

Tuesday, January 19th, 2010

Have been visiting a well known MS forum over the past few years, but not posting much. Occasionally, particularly upbeat and well meaning members post encouraging comments to the others. Tonight I read somebody’s post that said, basically:

Don’t let it get you, keep going! Don’t let it stop you from functioning everyday. Remember, it doesn’t control you, you control it!

Which is all well and good. . . except when it does and you don’t.

say what?

Monday, January 18th, 2010

Today was confusing.

Today I talked.

A lot.

I was nodded at.

A lot.

But I’m not completely certain about the level of actual communication that we were able to achieve.

I had made decisions, presented my cases, then was offered other choices, then stuck to my decisions, then didn’t, then considered other options, was allowed only certain routes, fully allowed others, was looked at like I was insane (how I hate scrunched up faces), until I’ve traveled back and forth so much, that I’m not even sure what happened in the end and what will come of it.

But I’m not very hopeful. Whatever it was that happened.

Silence is golden

Friday, December 18th, 2009

It’s perhaps ironic that the subject that I have been chewing over in my head for awhile now (to speak or not to speak/the nature of talking and vulnerability) is beginning to “take voice” at the same time as my decision to give in and make an appointment with the speech therapist.

I lost my ability to speak once in an MS relapse. I mean that I lost the ability to control and use the muscles around my mouth and throat, not my will to. The only person who could understand what I was trying to say was my husband, and that took a little while. The sudden removal of my ability to communicate verbally with others left me a bit shell shocked and terribly frustrated and it left the others i tried to speak to simply stunned, sad and not knowing how to respond to me. I will always now have the possibility of problems with the muscles in this area as there is now scar tissue/inflammation in that area of my brain. (My current decision to refer myself back to the speech therapist is because of the number of times I find myself choking on my food and drink recently. Had a particularly frightening episode last night.)

But that’s not exactly what I’ve been thinking about on the subject of ‘talking’. I’m a pretty chatty girl, and in many ways, I wish I weren’t. I really wish I didn’t feel such a need to express what goes on in my head to people, mostly as I’m convinced that people don’t really want to know (which is perhaps why I blog it instead, if you didn’t want to know, you wouldn’t click! And besides, it keeps me quieter in ‘the real world’, therefore avoiding that whole “did I just offend you? What did I say wrong?” feeling that I’m so good at creating).

I wonder how I would adapt if I lost my ability to speak again, I rely on my words so.

I remember deciding to go to my weekly Bible study one week during that relapse, even though I knew I would not be able to contribute in any useful way. Unfortunately, that evening the study dissolved into argument and bad feeling around a particularly heated discussion on the Pauline teaching on women and I felt completely helpless. I watched my friends saying things that upset each other and upset me terribly and I felt completely helpless, both in my ability to express my thoughts/feelings and to wade my way through the murky waters. I felt out of control of my relationships in the midst of bad feelings, and I didn’t like it one bit!

I rely on my voice to ask questions, to discuss and to understand the people and the world around me. I rely on my voice to try and make other people understand me. Without my voice there would be a barrier between you and me.

Silence generally makes me uncomfortable, visible and vulnerable (although talking makes me feel pretty vulnerable too, so I guess I can’t win). I feel a perpetual need to fill the gaps when the conversation stops. I often feel a great responsibility to carry the conversation, to be interesting or funny or witty (which has been more difficult lately with my aforementioned cognitive issues). And I have an inordinate fear of being misunderstood, so I say as much as I can to explain myself, as I have learned over the years that words and actions that seem completely natural and normal to me, aren’t natural or normal to most everyone else in this New World. So I talk, perhaps more than most, to attempt to explain, excuse and exonerate myself, to prevent such possible misunderstandings (I am still floundering in my “two countries separated by a common language” cultural divide).

And besides all of that, I love conversation. I love connecting with other people and finding out about them and sharing something of myself, and I can just never figure out when that happens to be a welcome thing to others and when it happens to be annoying. I just don’t love being dissolute, obtuse and irksome.

I guess I feel if I’m uncomfortable in the silence, then whoever I am with must be uncomfortable too.

Apparently, that is not true. Apparently, there are people, who find silence a normal and ok thing. I guess I didn’t grow up that way. So I am trying to curb this need to speak. Apparently it’s not always polite, where I live now. I don’t like to annoy people and like Eliza Doolittle taking lessons in how to be “a lady”, perhaps I should try a bit harder not to say so much. Perhaps only speak when I am spoken to??

But on the flip side, and perhaps from a more positive perspective on the subject, isn’t silence between friends an indication of security and to be valued? Yes, I am certain that and a balance between the speaking and the silence is the ideal and to be sought after. This will come, perhaps slowly but surely as I learn to relax into my life more.

However, for now, the thought continues to occur to me that I have not been able to find that balance yet. The thought continues to occur to me that I had better work harder at not saying so much, for I would rather be heard through my silence than ignored through my words; I would rather be conspicuous by my absence than invisible by my ubiquity.

little white lie

Tuesday, December 15th, 2009

I lied to my doctor yesterday.

It was necessary for the sake of self preservation.

A brief and probably inaccurate summary might go something like this (inaccurate because my perception of what goes on around me and my ability to engage and communicate with other people, both personal and professional, is currently greatly hampered by cognitive problems caused by my MS):

me: I think the chest infection is back, the cough is worse, it keeps me awake at night, I’ve had it for about seven weeks now and when it starts I can’t breathe and I can’t stop coughing because my throat goes into spasm. I feel ill and tired and my throat hurts. Everything is a bit unpleasant and green.

he: When I saw you last week, you were looking a bit anxious, and today you seem a bit low and depressed. We really need to look at things as a whole, and perhaps consider a different kind of treatment.

me: Well, the other day, I was bringing my daughter for her injections, so of course I was a bit anxious. I don’t think I’m any more depressed than usual at the moment, and I absolutely refuse to go back on antidepressants!

he: Well, then we can look at other options.

me: I already have a therapist, since 2007, and am very happy with her. Can we get back to looking at my cough?

Ok, that’s not exactly how it went, except for the bit where I said that I wasn’t depressed and refused to go back on medication.

Well, the second part of that is true, so therefore I needed the first assertion to facilitate my refusal.

I just so often get the feeling that I am no longer seen to have any illness or bug or problem that isn’t directly connected to having MS or depression. And whereas I will be the first advocate of the wholistic “mind and body are intrinsically linked” approach to medicine, and ok, to be fair, his assessment of my mood was fairly accurate, but I would like to shake off the labels and expectations sometimes. Give me a chance. Ok, I might have a history of depression. . . but I’m sure I can have a simple bug too. I wish they would stop trying to shove pills down my throat!

Advent in one go

Thursday, December 3rd, 2009

December 1st.

In all of my recent fatigue and grumpiness, I left the Flower Child unsupervised by anyone but the television and the cats for a bit and slumped upstairs for a 10 minute break. Upon returning I found my little Flower sitting on the cream sofa with her Thomas the Tank Engine Advent calendar ripped into shreds and the plastic tray of chocolates that lies beneath the cardboard windows excavated and on her lap with a tall chair pulled in front of the high point that we had placed it.

11 of the 24 chocolates were completely missing.

So much for advent.

homeostatically adjusted. . . so stop moving around!

Wednesday, November 11th, 2009

I rely on people. Often.

I always liked the idea, as I have said before, of being a hermit. Of self reliance. Of being a wholly capable woman.

But that’s not how my world works. And I suspect yours doesn’t either. People need people. People need other people, and many times, we don’t even realise how much we may need the people who are already there, in our lives, until they are gone. There is a kind of loss, a gap, an emptiness when other people, even the “unimportant” or distant ones disappear out of their lives. As human beings we are built for homeostasis, and when something happens to change that stability in our lives, to any degree, particularly by subtraction (although addition can often throw us too), we can be left a bit in the lurch.

Often even when a minor cast member of our lives leaves by stage left just when we didn’t expect them to, right at a point that we hadn’t rehearsed, we become a bit flustered, like a director who can’t control his players and doesn’t know what to do.

When I was very little, my mother took me for my first haircut. About 12 or 13 years later, the same woman was still cutting both of our hair. Then, one day, we came to an appointment and were told that she was leaving her job to go back to college and retrain. She gave us a book entitled All I Really Need to Know I Learned in Kindergarten by Robert Fulghum. The Inscription she wrote inside the front cover was: “To ____ and ____. With special attention to pages 76 -78. Fondly, Donna. (the following quotes are taken from this)

Hair grows at the rate of about half an inch a month. . . That means that about eight feet of hair had been cut off my head and face in the last sixteen years by my barber. I hadn’t thought much about it until I called to make my usual appointment and found that my barber had left to go into building maintenance. What? How could he do this? It felt like a death in the family. There was so much more to our relationship than sartorial statistics. We started out as categories to each other: “barber” and “customer.” Then we became “redneck ignorant barber” and “pinko egghead minister.” Once a month we reviewed the world and our lives and explored our positions. We sparred over civil rights and Vietnam and a lot of elections. We became mirrors, confidants, confessors, therapists and companions in an odd sort of way.

February 2002, I was in a bit of a state. I was back in hospital again. I was back in physio and psycho therapies again. I was back on crutches and sometimes in a wheelchair again. Someone, probably against his better professional judgement but in an “I haven’t got anything else to offer you, so I’m going to make a personal suggestion” moment, suggested that I see this acupuncturist that he knew, and he handed me her card. I was in an “I’ll try anything once” kind of place and booked an appointment.

7 years and 8 months later I am still continuing to see her on a frequent and regular basis. In that time I can count the number of MS relapses that I have had on one hand (as opposed to nearly the same number per year before) and have not sat in a wheelchair since. And whereas any medical relationship really needs to stay that much more distant than that of hairdresser/customer, she has become a “mirror[], confidant[], confessor[], therapist[] and companion[] in an odd sort of way.” She has been there through ups and downs, griefs and joys of the last 7 years of my often soap operaish life. She has supported me through things that no one else knew about. She has always listened and never judged.

Last Monday she told me she was leaving to set up a practice in another town. Not an impossible distance away, and if I could travel, then I could continue to see her, but I wonder in all practicality if I will be able to do that. I haven’t completely decided what I will do yet, but I always knew that professional relationships can’t last forever. I have enough of them to know. But it always leaves me feeling just a little sad when I lose one. Then not knowing how to feel, because I’m self aware enough to acknowledge the feeling of loss, but mature enough to be sensible about keeping a healthy personal distance from my professionals.

My neurologist left in July and didn’t even tell me. (I’m talking about the good one who supported me in everything from my illness to bureaucratic nightmares to managing my daily ups and downs to being able to become a mum. Not the earlier bad neurologist who should have been struck off and lost his licence to practice if he hadn’t already been retired, for those who know the story.) When I found out, I was left sitting in his nurse’s office feeling crushed and open mouthed and wanting to say “B…b… but he didn’t even say good-bye!”

I was even a bit thrown when the nice lady with the spiky hair at the local pharmacy I always used to chat to seemed to have left that job. We get used to people, and at least I like a kind of homeostasis about my life. The reality is that nothing really ever stays the same.

Without realizing it we fill important places in each other’s lives. It’s that way with a minister and congregation. Or with the guy at the corner grocery, the mechanic at the local garage, the family doctor, teachers, neighbors, co-workers. Good people, who are always “there,” who can be relied upon in small, important ways. People who teach us, bless us, encourage us, support us uplift us in the dailiness of life. We never tell them. I don’t know why, but we don’t.

And of course we fill that role ourselves. There are those who depend of us, watch us, learn from us, take from us. And we never know. Don’t sell yourself short. You are more important than you think.

feeling a bit rough around the edges

Tuesday, November 10th, 2009

And I think this could explain it. ;-)

oink

Tuesday, November 3rd, 2009

So this morning I’m booked in for not just one flu jab, but two. The regular one plus the swine flu vaccination. And as of right now, I’m not sure I’m going to go through with the swine flu one today, as I’m on my own with the Flower Child all day today and tomorrow (husband is travelling with work), and from what I hear from all corners, my arm will be rendered pretty useless for awhile afterwords.

Three year olds and any immobility of the parent don’t go well together.

Oh yeah, plus my fear of injections doesn’t really help me make a dispassionate and practical decision.

I’ve been so eager to get vaccinated, particularly against swine flu, as everything I get knocks me for six, and could actually be a bit dangerous for me, with my ‘house of horrors immune system’ and all, and taking care of said three year old will be impossible if I get flu, which would immobilise me even more.

I’m very thankful really that I have the opportunity to get the vaccine, with my reaction to illness and all, but then there’s my reaction to drugs too. The question is weighing up do I risk delaying it (possibly a substantial time, knowing my surgery and their general approach to appointments) and therefore risking getting flu (there’s so much of it going round, as you may have heard) or going ahead and having it today, likely not just getting the sore unusable arm, but probably running my system down and being fatigued for the next three weeks until I can see my acupuncturist again? Remember, my body doesn’t like or react well to drugs, and I’ve been really run down lately anyway.

I’ll let you know what I do and what happens.

an autumn walrus named Hippo.

Wednesday, October 21st, 2009

Yesterday taking one of my frequent walks in the park with the Flower Child we turned down a wooded path near the stream. The light was beautiful and the leaves were organge and yellow and the sunlight was shining through the gaps in the trees and shimmering on the water. Suddenly Flower stops, gasps and clutches onto my leg.

Me: What’s wrong?
F.C.: I think I’m a bit scared.
Me: What are you scared of, Flower?
F.C.: There’s a Walrus.
Me: There’s a Walrus down the path??
F.C.: Yes. He’s down there.
Me: Well, let’s go find him and make friends with him!
F.C.: Oh! He’s up there now.
Me: In the trees?
F.C.: Yes. He’s autumn Walrus.
Me: Oh. What is his name?
F.C.: Hippo.
Me: Well, say hello to him.
F.C.: He’s walking again. He’s down there.

I couldn’t get her to say hello to Hippo and make friends, but If I had met him, I know I would have!

on crying in front of people

Monday, October 19th, 2009

I generally try not to make a habit of taking my clothes off in public. But that’s what seems to have happened yesterday.

I mean, swimming was bad enough on Saturday (I said to some friends afterwords, “So why is it that if we dressed like this in any other public venue in any other context we would most definitely be deemed as, at least vaguely, offensive, but put a huge vat of water in the middle of us and push us in, and suddenly it’s ok??), and I at least try to forget when my skirt fell off during coffee time after church a few weeks ago, but bursting into tears in front of a large group of people from my church yesterday was not in my plan. It feels a bit like taking one’s clothes off to testify to something personal.

It was actually a beautiful communion service. And I suppose, I was the one who said:

I heard or was told somewhere along the line that there can be no true communication between two people, no real friendship, no love, familial or otherwise, no meaningful interaction with God, and no honesty without mutual vulnerability that stems from trust.

but in a way I’d made myself really very vulnerable over the last week, and I had been feeling it since then. When becoming vulnerable, I usually get scared of ending with the consequence of regret, loss, offense and error.

What I said that made me cry was very short, very simple and didn’t nearly express what I wanted to say (I still can’t seem to do that). I said, to a group of people from my church who contained some of my dearest friends, some slightly less close friends, some complete strangers, and some empty spaces where other people who could/should have been there but weren’t, “I lost my first family. But God brought me here and gave me you. You are my family.”

I didn’t get to say why that meant so much or how it happened, and I don’t know whether or not I feel better for saying it, but I was surprised by the response. Two friends approached to put their arms around me as I cried, a man I am not close to gave me a hug after the service, a woman I had never spoken to before told me that I was very brave, another friend kissed me on the forehead and served me the communion glass, and one of my oldest friends put a hand on my arm and said something I can’t quite remember except that it touched me.

I’ve made pretty clear that to me family is a bigger thing than the one that lives and moves inside the four walls we inhabit. It overwhelms me that after nearly 15 years, I still have this second family and they haven’t kicked me out yet. I need my family.

And I’m so afraid of losing it again.

dad

Sunday, October 4th, 2009

I found out this morning that my friend’s dad died.

When did my father die? I can’t remember anymore. Was it the 3rd or the 9th of October? I remember the year, at least, 1997. Twelve years ago, not quite 2 months after my wedding, which he couldn’t attend.

It’s all a blur. The wedding, the new house and the landlord’s cat, dad’s death, visas, immigration, the funeral and the three months living with my mother, sister and husband all together afterwards, the unemployment, the lost university course, the relapses, the wheelchair, the steroids and anti-depressants, the generous gift from an anonymous stranger so I could get afford my visa and return to my new home. It all seems so distant and like it happened to somebody else. And the strongest memory of the day that he died is is not of the phone call but of our friends M and J buying us fish and chips so we didn’t have to cook.

I think he had already died to me, when his brain became too damaged to know anyone, remember or understand anything. He wouldn’t have known if I had managed to fly back before he died. I tried, but I didn’t make it. And he wouldn’t have known. The last time I had seen him was at the airport nearly a year before when I had to turn my back and walk away from him, wondering if that was the last time. I hardly knew how soon.

I walked myself down the aisle when I married. He wasn’t there, he was too ill, though I barely knew how ill. I had always said that it was either both my parents or me alone. So as it was, it was me alone, sobbing to Pachelbel’s Canon, part because at that stage of my new illness I was overwhelmed to be walking at all, and part because of an immigrant’s overwhelming experience of the simultaneous experiences of the joy of marital gain and the grief of homeland loss. And I knew he would die. . . though not so quickly. I knew I was leaving and losing everybody for good. . . though not that it would become so irreversible and sealed by so many deaths and changes. So I sobbed the whole way, clumsily knocking pew ends off with my massive bouquet of sunflowers.

I never really held the anniversary of his death, and so I don’t remember the date. I’m sure it was early October. I have a feeling he died on the 3rd and the funeral was the 9th. The time that reminds me of his death every year is not October, but actually in June when all of the shops start advertising for Father’s Day. People in the country where I now live scoff at the holiday as a fake capitalist construct by Hallmark, but it meant something to my dad. It took me many years to pass a shop in early June and stop thinking “Oh, I need to get a card for dad. Oh, I can’t.”

He just missed his 80th birthday, and his 25th wedding anniversary with my mom. That was 12 years ago, so that means that this month, had he lived, he would have been 92. wow. His birthday was at the end of October, either on Halloween or the day before, I never remembered. I just knew how much he hated Halloween. Not because of his birthday or for any principle or religious reason. . . it was just one of the many things in life that annoyed him.

Like the NASDAQ. He just hated the sound of it. He was obsessed with the news, but complained each and every time he heard a financial report, because he hated the pronunciation and the sound of the NASDAQ. Which I only mention at all to demonstrate that he was a strange man with many quirks. I inherited many of his quirks. I am bound by so many of them. We are so subject to what our parents give us, for good or for ill.

Dad was born in 1917. Which meant I had a somewhat different kind of upbringing for someone born in the mid 70s. The early 20th century in my home country (any country), was a very different world to the one I was born into, and he struggled to parent a child in the late 20th century. He saw so much. His brothers fought in WWII (one died in the Philippines), he was medically discharged with a diagnosis of schizophrenia (or at least I was told once). He was in the army air corps, he ran his own garage, he kept and remodeled classic cars, he drag raced other drivers on the highway, he snored loudly, he was in a country band that played on the radio in the 1930s, he got thrown out of university for walking a girl home and standing on her porch, he was reinstated and became an engineer, he started his own gym/training centre in his 70s, he had been electrocuted so many times that when he tried to teach me to use a compass, the needle would point to him, not north, he would come looking for me at 3 am when I was 18 and out with my boyfriend, telling me to come home, or else, and when that little girl of his came home a few years later from a foreign land and could no longer walk or pick things up or write or see and could not even lie in bed at night for the raw, heavy pain of the sheets on her legs, he stayed up all night and let her cry. So much happened to and around him. I can hardly blame him for the things he got wrong.

I have not been to his grave since the day of his funeral (now that was a strange experience! The service was run jointly between my mother’s Evangelical minister, my sister’s high Anglo-Catholic, gay priest and a an old friend of my father’s, a man who had spent time in jail for militia involvement and tax evasion as he believed the money belonged to God and not Cesar!). My mother has moved on and can’t go back. I wanted to go there when I recently travelled to the homeland, but there was no one to take me, and I never dared ask anyone. There were too many memories to drag anyone through.

Dad didn’t want me to go, but he knew he couldn’t/shouldn’t stop me. And now, just as I never knew my grandfather, my daughter will never know hers. I wonder if he had lived, if I would have stayed here, in my chosenland quite as long.

I wonder what a person is willing to give up for their family. He gave up so much. Family was everything. It was the only thing.

And I still left. Sorry dad.