I am not generally what you might call “a joiner” but on Thursday 16 September 2010 I made an exception.
I have referred earlier to the The International Waldenström’s Macroglobulinemia Foundation (IWMF), the Florida-based organisation that supports WM patients with a variety of resources (such as an online discussion board and numerous printed materials) and funds research. As my wife and I stood by the cereal bowl on Friday 10 September, affirming that we were in this struggle together in the midst of the pain of recent diagnosis and the uncertainty of ultimate prognosis, I found in myself a rare resolve.
Waldenström’s You-Know-What is sometimes referred to as an “orphan condition”: a Billy No-Mates of the medical world, too rare to attract serious research funding. There are currently about 1,500 new cases diagnosed in the USA every year, giving a total of cases in that country at any one time of around 10,000. To put that into perspective, the US population at the time of writing is 310,510,047 and counting (see US Bureau of the Census). There are 65 registered with the UK arm of the IWMF, and guess who is the 65th? Yes, in short, readers, I decided as I assembled my new drugs for the first dose, to join up; to salute the flag and to recognise that I was part of a select—but even from what little I had so far seen—clearly an energetic little band. This condition needs all the friends it can get and I felt it as a duty to pay my dues and sign on the dotted line, or rather to type details into an online box and give the credit card a modest outing while going about it.
I would argue, as others have already done in the course of justifying research into the very specific and circumscribed effects of brain injuries, that by concentrating on a limited area of research one could throw much greater light on the whole picture. Examination, say, of a sudden craving to consume coal after a bang on the head (sorry, this is not an actual example) may illuminate a by-way among the neurones that leads to a broader avenue. In such a context, the whole notion of an “orphan condition” is questionable.
|Oliver Twist, perhaps the most famous orphan in English literature.|
As pictured by the incomparable Ronald Searle.
Joining up felt good. When I have the energy I will campaign more. In the meantime, as I hope is clear, this blog is itself an instrument of war.
On this day I also decided to revisit that ultimate chattering device, Twitter. I signed up for this about a year ago, mainly to see how it worked but swiftly came to the conclusion that it was not my thing and did not use it, although I kept my account open. Back I went then amid the Stephen Frys, the Jim Carreys and the hordes of John and Jane Does who tweet incessantly. I signed up to “follow” a particular hero of mine, Kevin Spacey, and immediately received a tweet from him announcing that he would shortly (the date has now passed in real and blog time) be taking part in a fund raiser for Leukaemia and Lymphoma Research. What was then rather fun was to reply to this (in my guise as @drumtwit) with a tweet announcing this blog, meaning that all who follow Kevin would receive notice on their own account pages of the efforts of, ahem, yrs truly. Effortless and strangely liberating, as only cyberspace can be.
In the evening was worship band practice for the following Sunday and I decided to go, not only because I am one of those who occupy the percussion “chair” but also as an experiment to see how drumming would affect (or be affected by) my illness. So, the flesh might be somewhat weaker, but the spirit was willing. My current weapon of choice in the struggle for light is a box that you sit on, called a cajon (Spanish for, er, “box”): here a picture of this wonderful instrument.
I think it's love...
Behind the upper part of the light brown playing surface is an array of twisted wires (“snares”) that amplify and dry the sound to a pronounced “crack” while the bass tones in the middle of the head are warm and simply gorgeous. The instrument is adaptable to many styles of music, but on these occasions I play it rather like the snare and bass drum of the conventional Western drum kit, though not as loud! To assist the sound balance with the rest of the band, a microphone is clamped inside the hole visible in the dark side surface and angled inside the body of the drum towards the playing surface so that the tones are amplified by the church sound system.
Enough of this geekiness; what did we do on this particular evening in the otherwise empty church? We practised, yes, but we also had a strong sense of being in the divine presence. Energy beyond my normal current range was given me to play with a focus and power that I do not always feel. When one particular song ended, we remained still, caught in the holy fragrance of the moment. An experience, in truth, mediated by endorphins and the other delightful chemicals of our makeup, but need we really stop there and deny that what we felt was also of the spirit, filled with meaning and a sense of a great love bathing us?
This is—more than ever now—why I drum: as an act of worship and a dance before the Lord.