Pensées sur mon anniversaire
The following email appears as an addendum in stranger and stranger. It was sent to all my friends and relatives in my email address book on my 27th birthday in the year 2000. A lot has changed in the world since then but I am still unwell, as are many hundreds of thousands of people with ME/CFS.
Birthdays are never easy when you are unwell but writing today on my 44th birthday I feel more positive about the prospects of understanding my illness than I have done in previous years due to the progress that is being made in biomedical research. After years of neglect by doctors and medical institutions, some of the world’s leading scientists are finally starting to take an interest in ME/CFS. In the past year several papers have been published which reveal significant metabolic, neurological and immunological abnormalities, giving patients around the world desperately needed hope of diagnostic tests and effective treatments (see links below).
03 May, 2017
From: Robert McMullen
To: Rose et al
Sent: 03 May 2000
Subject: pensées sur mon anniversaire
I thought my birthday would be an appropriate time to write another circ.. (Still don't know whether sentences ending with an abbreviation should finish with two full stops.)
Today is my Birthday. (In fact it isn't because, like most of my correspondences of more than a few lines, this has been written over several days.) Thanks for the card if you sent one, thanks for the card if you didn't.
Today I am 27. Not the most significant birthday, but somehow all birthdays are more significant to me while I'm still unwell. It is a sign of the longevity that I can talk in general terms about how it feels to be unwell on my birthdays in the same way that a teacher can talk about what it is like to start a new school year. Before I was ill I used to look forward to birthdays, now they lurk on the horizon like a pending exam for weeks in advance.
It's not that the day itself is necessarily any worse than any other day. There are plusses (receiving presents is rarely worse than not receiving presents and I think my social security benefit goes up by at least 73p), and there are minuses (hopefully most too obvious to need to list). The real trouble with birthdays while I'm unwell is not so much the day itself but the fact that they signify the passing of time, which I so desperately want to slow down. It's a funny thing time. I often think about how different it would be if someone could give me a date when this would all be over. I suppose if that were the case I would probably be willing the time to go as quickly as possible. If one were given a long prison sentence, would it be better to know how long one had been given, or would it be easier not to know? I think probably the former, unless it were for life (by which I mean real life and not just 7 years). At least if one didn't know, one wouldn't be wishing the time away, which always seems like such a terrible waste.
I remember talking to Pete about birthdays not long before I was ill. We agreed, at the age we then were (18, I think), that each year we had got older had been better than the previous year, not in terms of what specific experiences we had had, but in a more general sense of what being that age meant. Being 16 was better than being 15 because of what you were allowed to do and what choices you could make. Likewise, 17 was better still because you could drive, 18 better again because you could drink legally and so on. At 18, getting older still meant having more independence and having more choice. Birthdays before I was ill were good, not just because of the day itself but because of what they meant: you were a year older, and being a year older then was definitely a good thing. I guess most people at some stage stop looking forward to being a year older. I don't think that under ordinary circumstances (whatever they might have been) I would have been the sort of person to grumble about getting older, but even when I was well I would not have wanted to become 18 if I had not first known what it was to be 17. And I don't feel like I've ever been 20. My OT [occupational therapist] is very big on PMA [positive mental attitude] and would therefore not approve of the tone thus far. Should this somehow find its way to her through the ether, I will doubtless be hearing from the thought police. It would seem that it is only desirable to express negative feelings if they are coaxed out of you by a professional, where they can then be safely dealt with. If you don't express any sadness you are seen to be bottling things up and must be encouraged to let things out, but if you are already letting things out this too is seen to be wrong, as negativity can lead to a downward spiral, and you must therefore be encouraged to bottle things up. Incidentally, pointing out the circularity of this approach is not deemed to be constructive either.
Trying to put a hint of positive spin on what has proceeded, in deference to my OT, I will at least concede that one paradoxical advantage of having been unwell so long is that as each year passes the impact that one birthday has diminishes, as a year represents proportionally less of both my life and the time I've been unwell. My birthday is sufficiently close to the time of year when I became unwell that it also serves as a counter for the number of years that it has lasted. Around about the time of my birthday I have to start thinking in terms of having been ill for another year, so that come July it is not such a shock.
The difference between having been unwell for 8 years compared with 7 is not so great (which, if one were being negative, might seem depressing in itself) but the difference between one and two was colossal. The first time that the most accurate answer to the question, "how long have you been unwell?", seemed to be "two years", it caught me by surprise. I was talking to a consultant in hospital and suddenly it just jumped up and hit me in the solar plexus. Two whole fucking years. With my 21st pending, it was too much and I did one of the most uncool things I've ever done (although there have since been plenty of other candidates): I burst into tears in front of my consultant. Every year that has passed since then, I have worked myself in gradually to the idea of another year having passed and, in a sense, I guess this is part of that process.
I think one of the difficulties with 8 is that none of the books ever referred to it. In the early days when I read all the speculative crap and contradiction that was going, people often laid out the odds: what percentage of people got better after one year, two years etc. The final category was always "7 and over", as though 7 were the point of no return.
It worries me that it has now gone on too long for anyone to understand. If I was treating people, I don't think the over 7's would be very high on my list. It frightens me that people, and particularly Drs will start to think that this is what I am, or worse who I am, rather than what is wrong with a "normal" person.
Every year may be less significant, but that doesn't mean that a year is any easier to endure.
Another difficulty with my birthday is the time of year. It's always sunny on my birthday in my selective, rose tinted memory. There always seems to be a good patch of weather round about the start of May, which invariably packs up again before real summer begins. It was always a great time for a birthday. My memories are of birthdays outdoors, pub gardens and barbecues on sun kissed days. I always used to love the start of summer, admittedly not as much as I now realise, but I definitely always loved it. The difficulty is that now when I wake up and the sun is beaming through my curtains, that first feeling, the promise of a perfect day, is just the same. It's like seeing a beautiful woman, the way it triggers my emotions and desires, but now there is at the same time an equal and opposite response: the realisation that I cannot enjoy it; the memories and the promise swamped by my frustrations. And my Birthday, more than any time, evokes those feelings of frustration. I suppose it's the same kind of thing as when you might be sitting in the office, bored shitless at work, looking out at a glorious day and wishing you didn't have to spend it cooped up indoors; only much, much more so. It's a crazy thing: there is only one thing I hate more than the frustration of a beautiful day and that is a day when the sun isn't shining. If I was given a choice it would always be sunny, and yet it tears me apart inside thinking of what I could be doing and what I'm missing out on. And madder still, for all the frustration I'd never have it any other way. If, while I'm still unwell, I ever look out of the window and don't feel those same frustrations, I'll know that the Rubicon will have truly been crossed.
I suppose that birthdays are like sunny days in that I'd rather have them than not, but they cannot help but reinforce the fact that I want for nothing except my health. Some of the best things in life can very quickly seem like the worst when the chips are down.
I hope that this hasn't all been too depressing to read. I try to dwell on as much positive stuff as I can, but there is a limit to how much one can repress things and talk only in positive-speak. It's a funny business being unwell so long. (That's funny peculiar, not funny ha ha.) I like to think that the people who are closest to me understand how it is but I never really know. Being chronically unwell can be like living in wartime, in terms of how one's communications are distorted. I'm sure that very often people talk differently to me because they know I'm unwell. Understandably, no one really wants to tell me if they are having a really tough time, or equally if everything is really great, for fear of damaging morale or making me mad with envy. In turn I often try to sanitise things too, always trying to be "amazing" and positive and all the superlatives you're expected to be. And all the while there are the medical propaganda machines, on both sides, telling everyone what's really going on. I worry that if I share too much the burden will scare people away, or worse, they'll start speaking at me in bumper stickers. I'm sure (and hope) that most of it could probably go unsaid, but I felt like writing something and this is just what came out.
I was thinking the other day that I feel like the guy who lost his winning lottery ticket in a world where money was all there was. I just hope that life's lottery tickets don't expire.
In the last few years I have been asking for donations to ME Research UK and Invest in ME Research instead of presents for birthdays and Christmases. If you would like to make a donation please go to: www.justgiving.com/RobIiME.
My 40th Birthday message on JustGiving
In an attempt to take something positive from turning forty I’ve decided to use the occasion to try to raise some money for ME Research UK.As well as seeking donations from anyone who would like to support the cause, I am also asking those who might otherwise have given me a present to make a donation instead. Cards, letters and messages will all be very welcome but no presents this year please.
Birthdays have not been the easiest time for me since I’ve been unwell, and significant birthdays are harder than those in between.
My eighteenth was great. Mum and Dad laid on a lavish dinner party for about twenty of my friends, after which we all descended into the basement to carry on partying for most of the night. It was a fun time in my life and an evening that I will never forget, not least because it was the last party I had.
Subsequent birthdays have been less cheerful, although I am grateful to have such happy memories from my college days. Others, like Emily Collingridge, have been less fortunate. She suffered an excruciating and prolonged death in hospital last year at the age of 30 after battling against severe ME since the age of six. (If you have not read her story, I would urge you to do so on the ME Association website
For the twenty years that I have been unwell, government funding of biomedical ME research through the Medical Research Council has been non-existent at worst and inadequate at best*. There is no diagnostic test and there are no effective treatments. Consequently, supporting charities such as ME Research UK is vitally important.
For all the pain, misery and loss, I know that I am lucky to have the support of family and friends, which many with my diagnosis do not. I know that many of you have given generously in the past but if I could persuade you to make a donation to ME Research UK for my fortieth birthday it will surely help to make it a happier occasion.
Thank you for your support. I look forward to inviting you to my next party.
*According to data available from the ME Research UK website, annual government funding of biomedical ME research through the MRC from 2003-2008 averaged less than £0.06 million. Prior to 2003 it was virtually nil (Hansard, HL Deb, 5 November 2002, c95W). The MRC’s gross research expenditure for 2009/10 was £758.2 million.