Sonya Kukula

'Want to Read' List

I did the Readathon as a child. It didn't find a cure. And I took that personally.

I have a provisional diagnosis of relapsing-remitting multiple sclerosis. My neurologist has written to my GP. I still need blood tests, vaccines and time to build immunity. And dental work.

As per the title, I did the Readathon several times as a child, and I'm delighted to discover that it is open to adults. With my stubborn belief in the "just world" fallacy, I took it very personally that my contributions alone did not find nor fund a cure. Rude. So let's go.

I remember devouring book after book as a child, and in my teens to early twenties... something just went awry.

Science's best estimate is that I've had MS for about fifteen years or more, and, thinking back, the jigsaw pieces (which aren't the autistic ones) keep on falling into place. Weird symptoms possibly triggered by an infection with the Epstein-Barr virus. Ties in to a year of constant fatigue, a year of constant illnesses, just knowing that my body was not acting like my body. And it hasn't since.

My lesions are concentrated mainly in my spine, which is a rarer presentation. My mobility is affected, along with a slew of bodily functions I won't mention in such gracious company as yours!

Like a fifth of fellow MS patients, I have experienced inflammation of my optic nerve, called optic neuritis. I thought it was the late-diagnosed ADHD that caused my attention span to wither, because only a person with ADHD avoids reading something they really, really actually want to read. It's pathological.

However, with the advent of eBooks and accessibility improvements, plus the sheer number of books I'm champing at the bit to read that are releasing in August (coincidence?!), there's no excuse not to return to a hobby that for me has been almost a kind of lifeblood. And I'm pretty bed-bound these days anyway, so reading, at least, is something I have left.

You might wonder why I don't listen to audiobooks, and please, let me assure you that it is not because I think they don't count as reading. They absolutely do. It is because I have lost some hearing on my right side during an MS relapse (sudden sensorineural hearing loss – if you suddenly lose hearing, regardless of whether you have MS or not, get thee to an emergency department, please).

I can't make voices louder and capture the same detail or nuance, but I can always change the size of text or use the ruler to mark my place on the page!