Sunday, March 21, 2010

The stuff of daydreams

Daydreaming has always been a problem. Not my fault, it's cos I'm a Piscean. We're the least likely of all starsigns to ever be rich or successful and I fully believe it's because there are entire days when staring out the window seems like a perfectly fine way to pass several hours in my book.

From a young age, it was clear to my parents that the traits they expected to have to deal with in a toddler/child/teenager were not materialising with me. Instead of the usual tantrums, constant attention-seeking and hyper-activity, what they found with me was far more disconcerting - a strange, normally silent girl, who stared at her hands in infancy and remained largely lost in her own world the rest of the time. My dad used to call me his 'beautiful dreamer'. My mother called me many other names, all of which I'm sure had love as their source, but which were rather less kind.

The stuff of my daydreams was dependent on where I was in life. I would fantasise about being the first in my class to be able to ride a bike (how cool I'd look), about winning every race at school (how cool I'd look), about walking into the disco, wearing the most amazing outfit and wowing every boy there (how cool I'd look). You see the emerging pattern here.

I still do it all the time now, except these days I daydream about when it's all over. My transplant, that is. I find myself picturing a new, radiant self. Mostly I picture my stomach, without the tube that is its current fixed accessory. I see a scar, yes, but that'll just be part of me, the little souvenir of this experience that I will carry forward and probably come to regard in the same way I do the scars on my forehead (from running into a wall on my first day at school, from running into the fireplace at home as a child and from a car accident when I was 15). I have also planned to tell strangers that the scar is from a shark attack as I believe this will do wonders for my street cred (how cool I'll look).

I daydream too about the simple routine of going to bed. Right now I sleep with a line from my machine (Brendan) attached to the tube in my tummy. I have to set up Brendan every night, do my three-minute hand washes, align the bags of dialysis fluid, connect them all up and then finally when it's time to turn in, there is another hand-wash to perform and then I attach myself to my lifeline.

Sleeping is one of my favourite things in the world (it allows for more dreaming) and I will never forgive dialysis for the way it ruins that pleasure for me, night after night. I love lying on my tummy. Brendan does not allow this. He beeps. And when he's not sounding his alarm bells, he makes a constant humming noise, followed occasionally by a hissing noise, for eight hours until he regards his work as done. Daydreams about a quiet sleep, not attached to that stupid machine are constant.

I daydream too about the ease with which I will perform every task once that new kidney is transplanted. About having a better fraction of the capability of a normal 28-year-old body again. I'd settle for 75%. That'd give me a good shot at actually being able to get up in the morning and get through a whole day of work and pleasure without needing a nap or feeling so exhausted by 6pm that I actually feel like I may throw up. I might also be able to exercise properly again without feeling like my abdomen is going to burst from the pressure of moving about with almost 2litres of dialysis fluid in there.

In essence, what I daydream about is normality. About being ordinary. I no longer dwell on how great it would be to look cool, but how fabulous it will be to have nothing to set me apart from the crowd. So that's where I'll be found for the coming days, weeks and months as I wait for that call for surgery. Looking out a window somewhere, conjuring images of what is mundane and unremarkable to all those who aren't marked out by illness.


  1. Hi Regina

    I had very early stage lung cancer almost two years ago and luckily it was spotted by accident during tests for a nasty chest infection. Part of my lung was removed and all has been fine since then. I don't really know how lucky I was. I hope it continues. I won't be happy until I die at the age of 90.

    Although my situation is very different to your own, I can relate to your desire to be a normal or ordinary person. To complain about small irrelevant things and not know how petty it is compared to greater problems.

    I had endless tests, pokes, scans, needles, major cardiovascular surgery with tubes, bags, drains, worry, fear, anxiety, the lot. Well I can happily say that I am now back to cursing slow drivers, giving out to the telly and not realising how lucky I am sometimes. The time for your transplant will come along, hopefully sooner than later and the recovery will pass quickly and you'll be back to normal but never be too ordinary.

    As for the scar, I thought about the shark story too but I use it for little kids at the swimming pool when their embarrassed Dads don't have the answer for them. They never buy it. Then I tell them it was a puncture repair wound. That works for them.

    And when you are back to normal again and reveling in the wonder of life and the possibilities, you soon start to forget what it was like before. Your mind tends to let to you forget but reminds you when you need it (slow drivers).

    I'll be checking in to see how you're getting on and feel free to read some of my posts about the few months I spent wondering if I'd see 40. You'll find the first one here.

    I can't even read them myself anymore.

    Take care, HM.

  2. Hi Regina

    I am a mother with four young children and am just a couple of years past mastectomy, chemo and radiotherapy for breast cancer. I know those feelings you describe, loss of control and power over yourself, hating everyone who even remotely looks happy and healthy and a sense of disbelief and loss that you can't explain. One thing to remember that although you may feel like you are on your own, you are not. Look around a crowded pub and I would say more than half of the people there have serious health, emotional, family or financial problems. It would amaze you if you were to interview them how many sad and difficult stories you would hear. So remember you are not on your own. I hope all will go well for you. I used to carry a donor card but can't now as no one wants organs damaged by chemo and radiotherapy. Also I know you hate that tube in your belly but try to see it as a piece of weaponry you have in your arsenal to use in the battle, soon it will become an old war wound that will fade.
    Every good wish

  3. Hi Regina, I searched for your blog because I read your article in today's Irish Times. And I have to congratulate you on your wonderful article and your blogs. I particularly liked the FAQs. Your writing style is very engaging. I am a mother of two teenage boys and have a particular interest in health ever since i was pregnant with baby no 1 who will officially be an adult next month. I can see from your newspaper article that life is difficult for you at the moment but as you said yourself looking at you a stranger would never guess. After all the photograph shows a stunningly beautiful young woman who looks the picture of health. Please, please dont give up hope if you can. I wonder if you like to read? If so I would suggest the following book 'The Power of the Subconscious Mind' by Joseph Murphy. Its a bit twee in parts but its a small book and a quick read. This book has a few good chapters that might show you ways to help your body to help itself. I secondly recommend this book because in July last year my husband (48 at the time) donated one of his kidneys to his sister (44) in the UK. He read the book three times before his operation and managed to do without much pain relief after his operation due to working on his subconscious mind, homeopathy (and a caring wife of course). He has read it again since we came back so I would be happy to pass it on if you are not in a position to go out and get a copy, just let me know. Another Tuesday in the Health Pages of IT (ages ago really but i remember them all!) Padraig O'Morain had an article about patients who wrote a gratuity diary, the article showed that those who listed 3 or 5 things that they were grateful for every day in their gratuity diary recovered faster than those who didnt, apologies if this is too much like the people who say 'things could be worse', its not meant to be, I only want to help you keep your spirits up.
    My husband and sister are doing great, she had been ill a long time but has good family support. You do not say in your article or your blog if you have family support, I hope you do although sometimes it can be hard to lean on your family and its ealier to tell it all to strangers. If you want to get some info on live kidney donation (I know you said you couldnt ask but you might like to have a look) try Its an American website and I found it v helpful when we were preparing for my husband's operation.
    I will be thinking of you and sending good vibes and reading your witty and entertaining blog and of course encouraging everybody i know to carry a donor card and maybe for every new person we can find who will go out and get a donor card, it will help ease those annoyances that at chipping away at your existence so that you can be as happy inside as you look in your photograph.
    And finally, in order to reply to your blog and send you a message I got lost in cyberspace and managed to creat a blog for myself, I had been planning to do this for ages anyway but never quite got round to it, so i'm now the proud owner of an empty blog, but i couldnt find out how to reply to your blog otherwise!
    Warmest wishes, Marrianne

  4. Dreams are like, well, dreams.Night dreams are cool but daydreams are the most delicious in that you don't even have to be asleep.If in a warm car or on a bus or a comfy armchair I can drift into that hazy twilight between wakefullness and sleep and just drift about in the parallel world of my subconcious for a bit, it does me almost as much good as 8 comatose hours in the night. I think I'd have made a good dog.
    Don't give up on dreams, dreams are precious things ,they take us from our darkest hours and lead us on our way.

  5. Hey Regina, great article and I can identify with everything you described. I had a kidney transplant about 15 years and unlike the Duracell bunny it didnt 'go on and on'! I eventually gave in to dialsyis last August and now have my on Brenda(n). I do feel much better since dialysis and work a full week and play golf (badly), although I dont think I can blame the latter on the absence of working kidneys...
    The call I got for my first kidney came completely out of the blue so much so that I asked the caller if it was a wind up! So, maybe when you least expect it that call will be the one you're hoping for..Anyway, as the song goes 'Dont stop believing' and keep well.

  6. Holemaster - while you may not be able to read those early posts at this stage, I took the time for a glance last night and they struck several chords. You're a fantastic writer. Thanks for your message and for reminding me there will be life after this. The thought of merrily screaming at slow drivers has just re-affirmed by will to live.

    Sarah - it sounds like you have been through several wars yourself and come out the other side a stronger, more hopeful person. I can only imagine how difficult it is to deal with illness while also being all things to your children. You are so right about the fact that sickness and suffering is far more common than you'd think. Since I got sick, more people - some of whom I may have only vaguely known - have opened up to me and revealed their own story. I look forward to the day when my tummy is lined with scars rather than full of dialysis fluid - and I will wear them with pride! I hope you are doing well now. Thank you for posting, I genuinely appreciate it

    Marianne - I love to read and I will definitely get that book you suggested. I hadn't heard of it before, but it sounds like it worked well for your husband (who, by the way must be a lovely brother and very kind person to do something so selfless as to give a kidney to his sister - I'm delighted to hear that they are both doing well). Strangely enough, I had been thinking as I was going to sleep last night that I must definitely post something on the blog that is in thanksgiving of all the good things in my life - if only to show people that I don't spend all my time giving out! Thank you so much for sending such a lovely message. Keep in touch and well done on setting up the blog - it's a whole new world!

    Totalfeckineejit - sounds like your daydreaming problem is even more serious than mine! You seem to be happy though. Visit many head shops? (Joke!)

    Sean - I think my Brendan met your Brenda at the Dialysis machine Christmas party. Don't know bout yours, but mine was in bits the next day. Passed out in the toilets and the whole lot. Anyway, I'm glad to hear dialysis is making you feel a lot better. Strangely with me, I never had too many symptoms of CKD (not much nausea or loss of appetite or anything), so I didn't get that 'bounce back' effect when I started the big D.
    I know I have to keep on believing (great song!). It'll happen eventually when the time is right. Thanks for posting.

  7. Read your article in the Irish times, and I was so struck by your honesty.Well done for saying it like it is.Although I can't begin to understand what the last few years have been like for you, I would like to wish you all the very best, and keep up this blog-it's witty and real and I'm already looking forward to reading the post titled' It's all behind me now..'

  8. Hi Regina, Michael Lohan here haven't heard from you in ages. I mean you don't call, you don't write, what's the craic with that like(hah). I was just reading your article in the Irish Times there and I have read all your blog, by the way it's class and your a legend, but I was wondering while I was reading it.Did you get some English grinds on the side while we were in school or something because we went to all the same schools and yet I seemed to have turned out with the English vocabulary of a five year old Spanish kid with a punctuation problem and your words genuinely touch the soul. So what's the story with that? Write me!

  9. Regina,

    I like your resolve and the fact that you haven't lost your sense of humour. In our house we have a thing with auto immune disorders...wife has MS and our oldest son Type 1 Diabetes and both are necessary to keep one's wits intact.

    From everything I read you have been able to do just that...keep your wits without succumbing to the soul destroying temptation of bitterness. Hang tough...

    Every blessing,

    Chris Pierce

  10. Martha - Thanks for your kind words and I too look forward to writing an entry entitled "Welcome new kidney"!

    Michael Lohan - Great to hear from you. Are you in the States or home or plotting to take over the world from a cave somewhere? And yes, every day after national school, I stayed behind with Ms Reilly to learn ten extra words. I'm still broke and unemployed, but I write a mean letter! I will email soon

    Chris - you're not wrong about the necessity for a sense of humour. After the first few days of shock on diagnosis, I realised crying for your fate gets very boring very quickly. You need to laugh. I hope your family are keeping well. It sounds like you're not letting sickness beat you. Fair play