In your own words…

It’s early on a Friday evening and my wife and I are sitting on our sofa holding hands. We’re staring into the lens of a camera with our children playing on the floor in front, bright lights shining into all of our eyes.

“Now, just try to relax and just tell us in your own time, in your own words,” says our interviewer from The Brain Tumour Charity.

“How did you discover you had a brain tumour, and how has it affected your family?”

We both knew the drill.

My wife is a television documentary producer so the ‘affected family’ interview is something she’s well used to setting up. She knows what’s required, what she needs the family to say, to do, to make an emotional and engaging film.

I’ve spent the last 10 years working for charities, interviewing the people they work with for fundraising reports, leaflets, and videos just like this one. People affected by disability, deprivation, disaster; helping charities to tell stories in a way which will persuade people to donate.

We both know what makes a good human interest case study, only our position is usually the other side of the camera and notepad. The case study creators, not the case study ourselves.

I went to remote Tanzania to interview people about the lack of safe drinking water or somewhere clean to go to the loo. All business as usual for me, until I went to the malaria hospital. There I saw dying children stacked three to a bed, and tried through my own tears to talk to their desperate parents as they huddled around their bedsides.

I interviewed people with complex disabilities, like the man who had became paralysed from the neck down. His devastation at losing his ability to control his body topped only by that of losing his partner, who had left unable to take the strain of going from brand-new-wife to full-time-carer in the blink of an eye.

I saw the glow in another disabled man’s eyes as I took him from his old bedsit (where he had to crawl on the floor because his wheelchair wouldn’t fit into the room) to his new fully accessible flat. I listened to him as he thanked me again and again, and garbled too fast about the amazing changes his life would undergo from that moment on.

I met a man in west London. His wife was with him, but no longer present. She’d gone missing on her way to the shops one day and had forgotten where she lived. She’d slowly forgotten everything about her life, as Alzheimers had taken over: the love of her husband, the care of her family. As she mumbled in her own invented language and played with a children’s toy, her husband talked about the love he still felt for his wife, a wife who was no longer really there.

At a hospital in east London, I met a little girl so profoundly disabled she will never walk and never open her eyes. For her whole life so far, and for the rest of what is to come, she will be fed through a tube in her chest. She’ll age physically, but never grow older. I talked to her parents about discovery of her disability, the struggles they’d had to get funding for her, the living of half of their lives in this hospital room.

Just a job. Yet, each time I came away from these interviews with a notebook full of quotes and a heart full of sorrowful questions: How can they stand to live like that? How do they carry on, when life is so cruel? Must they, somehow, just get used to it?

In our own home, we tell the cameras about the seizures I started to have a year ago. The day my doctor turned up on our doorstep with the news. The first day I saw the tumour on a computer screen.

I spoke about telling my family, my friends. And how I couldn’t take another long difficult phone call, so sent a mass email, just as if inviting them to a summer barbecue or announcing good news of an engagement.

I talked about the drugs, and injections, and MRI scans. The appointments and disappointments. The fear that my next meeting with a neurologist will be the one when it all changes again.

My wife talked about her sleepless nights, her fear of life without her husband and father to her children. How she wonders what she will tell them about me, if I’m no longer around.

She talked about the unfairness, the tears, the hanging on to any slightest hope that things might get better. The inescapable truth that they won’t. The knowing that she, too, will one day become my carer. When and for how long, we do not know.

I talked about showing my daughter what to do if I have a seizure; the immediate loss of my ability to drive; the gradual loss of my ability to ride my bike. The chance of not seeing my little ones grow up. Other dark places in my mind, where I know I just can’t go.

“It just feels so unbelievable,” says my wife to the camera. “You never think it’ll happen to you. And then it does.”

When we’re finished, our interviewer has tears in her eyes. A silence has descended upon the camera operators, both lost in their own thoughts as they consider what my wife has just said.

“It’s not all that bad, you know,” I smile, offering around the last of the biscuits. “It sounds terrible when it’s all bunched up like that, all said at the same time. It makes it sound far worse than it is.”

We make small talk as the cameras are put away and the notepad is tucked back into our interviewer’s bag. After nearly three hours, our half-hour interview is over and we see our guests out.

As we put the living room back together, moving the sofa back to where it belongs, I turn again to my wife.

“It isn’t really all that bad, is it?”

“I don’t know,” she replies. “Maybe we’ve just got used to it.”

*

I’ve been mourning my fitness lately as the weather, finishing my book and the seizures (and the drugs to combat them) have conspired to keep me off the bike and out of my trainers.

The anticonvulsant increase has mucked up my sleep patterns, but otherwise the side effects have been quite mild.

I’m still dreaming of bike rides lasting more than 20 miles, and hope I’ll get to that place once the drugs have finally levelled off. But we’re not quite there yet, something which leaves me frustrated but philosophical.

My greatest loss in that department is for riding in a larger group. That’s the challenge I’ve set myself: to get the drugs and the fitness working in sufficient harmony to place me back in the peloton, without risk to myself and my fellow cyclists. If I can get there in the next couple of months, I may even try to get to a training camp in Majorca in April – but no saunas this time.

Meantime, it’s the countdown to Christmas. It officially starts in our house on 1 December, and since there was a time back in the spring when I thought I might not be around to see it, I’m going to make it a big one. Fervent atheist that I am. Fa-la-la-la la, la la la la.


4 Comments

  1. When will the interview be shown, or is it for teaching/information purposes for the Brain Tumour Charity?

    Your description of the surreal, fitful, lurching nature of the condition and its path strikes a chord.. my husband has just had repeat craniotomy for glioblastoma.

    Thank goodness for the NHS and Maggies. Yes, and Christmas–

    1. Thanks for your message, and for sharing.

      The interview will be used firstly on a fundraising video at a celeb gala, but then rolled out on YouTube and on the website, I think. I’ll post here when that happens.

      Good luck to you and your husband.

  2. Gideon, though we have never met, I feel I know you through Sarah.

    I find your story almost impossible to read, but at the same time, your courage almost impossible to comprehend and very uplifting. What you are doing is making a difference for others.

    It may be somewhat therapeutic for you, I don’t know, but I do know that you are helping innumerable others to be strong, and by raising awareness of your condition perhaps someday there will be a way to successfully treat it.

    Your dignity, humor and poise are an example for all of us who find ourselves in far less difficult circumstances.

    Respect.

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