Silence is golden
I have always loved music and, before developing ME, my taste in music was eclectic. Now, however, silence forms the basic soundtrack to my life, and music is a treat that I enjoy when energy permits.
For most people, the only issue with music is whether or not they like it but, for someone with ME, it can be more a matter of whether or not they have the energy to process all the data which music presents to the brain.
Different types of music contain varying amounts of information, from a subdued cello solo to a full-scale orchestral work, and people with ME often have to select what they listen to according to how much energy they have available.
For those in a profoundly exhausted state, any form of music can be torture and some people with ME need total silence and a sound-proofed room.
Fortunately, I am occasionally able to listen to very simple, uplifting music, and this can be very therapeutic. When sufficient energy is available, making music myself also provides a very special oasis of delight.
Striking the right note
If I listen to music that is too demanding for my energy resources, the sound seems to accumulate in my head, gelling together into a glutinous mass instead of simply passing through. This mental data-mass can then take an inordinate length of time to clear, as my bio-computer processes it, one bit at a time.
Accordingly, it is essential that I avoid some genres altogether - especially pop. I have to avoid most forms of percussion, especially the modern drum kit that is so ubiquitous in popular music, and even a piano can be too percussive at times. A full orchestra is invariably overwhelming, and my brain can't keep up with anything played at speed.
I need simple, gentle, moderately-paced material, preferably played on just one instrument, or sung solo. Small ensembles are sometimes manageable, but nothing larger, unless in very subdued mode.
Strings and wind instruments are much easier to cope with, and restrained brass can be enjoyable. However, cello and acoustic guitar are clear favourites, as their sound is softer and they are ideally pitched to avoid piercing trebles.
I can't listen to music at the same time as doing something else without causing cerebral overload and, when I am able to concentrate on music, I need to use equipment with tone controls to enable me to decrease the treble frequencies, which I find particularly tiring.
Speakers with a smooth, warm sound are preferable to the piercing, 'analytical' and rather aggressive-sounding ones which are prevalent today, and my current speakers are an old and rather battered pair built at a time when a much more relaxed listening experience
Finding sympathetic sounds
Over many years, I have built up a small, ME-friendly collection of music which meets my necessarily restrictive criteria. However, this only includes some 300 tracks, because it is so difficult to find anything that avoids the characteristics that are problematic for me, let alone also being interesting and satisfying to listen to.
There are rarely more than one or two tracks that I can cope with on even the most carefully selected album and, in most cases, there is nothing at all that is suitable. Internet music download sites, such as iTunes, are a great help because they allow one to buy individual tracks and to listen to an excerpt of each track before making a purchase.
I love the sound of certain voices - Angela Gheorghiu's for example - but most of her operatic output is too intense for me. Fortunately, thanks to the internet, I recently discovered an album of sacred music ('Mysterium') which she made with Madrigal, the Romanian National Choir, which includes some restrained and exquisitely beautiful Romanian pieces. Unfortunately, such discoveries are rare but, when I do make them, they really brighten up my life!
I keep my collection of ME-friendly tunes on an iPod, arranged in groups according to how much of my energy they will require. When I have a sufficient reserve to allow a little listening, I just select the playlist which best matches my energy level.
The joy of simplicity
Although I felt disadvantaged when I first lost the ability to enjoy many different forms of music, this has led to my discovery of previously
unnoticed sonic dimensions.
I have learned to appreciate the subtleties of music which become more obvious when scale, volume and speed are reduced. I now enjoy the spaces between notes as much as the notes themselves and have
discovered a whole new level of listening pleasure in the nuanced expression which is only found in solo performances.
I now find so much more to enjoy in the kind of music that I have been forced to listen to that I no longer miss larger-scale group or orchestral music, and it was this new-found love of simple, small-scale music that made me want to try making music myself.
A sound of my own
From the outset, my own musical adventures produced a
completely unexpected dividend. Even though making music involves the use of muscles and mental concentration, it has, with certain exceptions, proved to be not only not tiring, but actually remarkably
This is due in part to my decision to use the guitar, which is ideal because of the relatively small movements that are involved in playing it. It is also light and very portable and can even be played lying down if necessary!
There are teeny travel guitars which are ideal for playing in bed, and lap-style guitars designed to be played on one's knee, as well as many other forms. For those who need something even more special, there are luthiers who can custom make instruments to order.
I now use a classical guitar, which has a very short neck and five extra strings (which, contrary to what one might think, can actually make it
easier to play) and I fit this with super-light nylon strings and use a special tuning to make playing as easy and enjoyable as it can possibly be.
I have had no formal training in music but, thanks to the availability of a vast amount of excellent instructional material, in print, audio and video form, individual tuition is no longer necessary in order to enjoy playing an instrument.
It is remarkable how easy it is to forget how one feels when both hands and all one's faculties are focussed on a single relatively simple creative task! There are also the sonic and tactile experiences to enjoy and, in the case of the guitar, one even gets a complimentary visceral massage as the vibrations pass from the body of the instrument into one's chest and abdomen. Mmmmm...! Time for another music break...
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