Voiceless

As a trained singer, I knew how important it is to rest your voice. I whispered for a bit before reading that whispering can strain it more than letting it croak at its natural broken tone. I was silent for three days.

My boy was concerned.“Is your voice gone forever?”
I felt bad: we should have told him earlier. If your mother has a chronic illness, you expect each subsequent illness also to be permanent. If her legs will never work properly again, why should you expect her voice to return?

I shook my head and stroked his. Jon explained that my voice would come back in a few days.

The boy adapted well: we played a version of hangman where I had to guess what bird he was thinking of by guessing each letter in the word. We did pretty well considering he spelt them ‘sbaro’ and ‘seegul’.

Jon adapted by mercilessly mocking me. He would come into a room, observe my gesticulations, and then repeat back the opposite of what I was communicating. When my gesticulations got wilder, my scribblings faster, he would just increase the effect, “Oh, you don’t want any chicken for dinner and you don’t think the boy needs a bath today.” It was both funny and infuriating. (He brought me my dinner in bed and ran a bath for the boy, so on balance it was more funny than infuriating.)

All the same, it made me reflect:

• When you have no voice, you are entirely dependent on other people’s ability and willingness to listen to you.
• When you have no voice, every single time you strain your body to whisper, there is a cost. You only speak because you absolutely have to speak.
• When you have no voice, it is a very lonely experience. People stop asking your opinion, because they know you can’t answer back. You can write, but it takes longer, and your listener has to be prepared to patiently wait ten times as long for your written response.

***

In January, the UK’s national papers ran articles suggesting that ME patients had ‘exercise phobia’ and would be cured if they exercised. Last week, a committee in America voted on a new name to replace ‘Chronic Fatigue Syndrome’, which is what many doctors, especially in America, call ME (Myalgic Encephalomyelitis). This month, Vanessa Li, a 33-year-old ME sufferer, committed suicide after a decade of pain and frustration.

There has been a flurry of blog posts in the ME community in response to these things, and I will be adding my opinion, too, but I have been too unwell to write as much as I would have liked.

This is what this illness does. ME takes away your mobility, but it also takes away your voice. For many ME sufferers that is literally true – they are physically unable to speak. For others, it is just figuratively true. My bout of laryngitis is temporary, but still I feel the voicelessness of being disabled, housebound, a tiny ration of energy. When you can only converse for an hour or two each day, every word is precious. There is still a cost.

Last week, I listened to a discussion on Boston’s Radio Station (WBUR) about the proposed name change for Myalgic Encephalomyelitis. One of the panel was a doctor who ran an ME/CFS clinic where they offer exercise therapy ‘to get patients moving again’, as he put it.

I cried when I listened to him. Even writing that sentence makes me feel a little vulnerable.

Of course, it may be that he is a rare doctor who is working with ME patients well within their limitations, and doing appropriate physical therapy that is not worsening their condition. But Graded Exercise Therapy usually means gradually increasing exercise each week, ignoring your symptoms. Graded Exercise Therapy carries with it an assumption that the ME patient has nothing physically wrong with them, and the only thing causing the ME symptoms is ‘exercise phobia’ and deconditioning. As ME patients’s symptoms are made worse by exercise, it is disastrous for the majority of ME patients, and it was disastrous for me. I started off Graded Exercise Therapy tired, but able to walk well; I ended it needing to use a wheelchair.

I’ve had my fair share of exploring this therapy and the ‘exercise phobia’ theory behind it, and responding to people’s well-intentioned exhortations to ‘get moving again’. Eight years after my diagnosis, I have reached saturation point. Now, even a doctor who talks cheerfully about ‘chair yoga’ curing ME patients can make me cry.

I feel the centre of my throat burning. I squirm with the frustration of silence.

***

This is why I am thankful for people like Jen Brea, ME campaigner and Director of the forthcoming documentary on ME, Canary in a Coalmine, who spoke so well on that same radio interview. Her symptoms are almost identical to mine; her experience of pushing herself to walk and then collapsing is my story; and her passion for long-overdue research and treatment for severe sufferers beats in my own chest. Harvard-educated, lightning-witted and eloquent, she is a voice for so many in the ME community: she speaks my story when she tells her own, and she galvanises people to change.

“Learn to do right; seek justice.
Defend the oppressed.
Take up the cause of the fatherless;
plead the case of the widow.” Isaiah 1:17

This week, I have been thinking about how I speak, but also how I listen well to those who are often silenced, and how I represent their messages. When we represent others, are we truly representing them, or just what we wish they were saying?

I pray for more Jen Breas – not only in the ME community, but all those groups on the edges of society who have been silenced because they are different or needy.

And I pray for more people who will listen, realise that each word spoken from the communal inflamed voicebox is a vital and costly whisper, and seek to pass on that  precious message loudly and faithfully to everyone they know.

Over to you:

• When have you felt ‘voiceless’?
• How do you respond when you feel voiceless?

How easy do you find it to listen well to other discriminated groups? How do you think we could do better in this?