Shaken

The doorbell rings. I raise myself from the sofa at second attempt, but freeze in the doorframe. I stand there for what feels like minutes, the doorbell rings again and again. Frustrated, I lean my walking stick against the wall and run towards the front door.

Of course, when I reach there I’m without my stick and have difficulty balancing as I open the door and almost fall over.

I eventually manage to get the door open and come face to face with three policemen. “Doreen O’Sullivan?” asks the policeman who rang the bell. I am unable to nod my head, and as ever my face gives nothing away, but the policeman continues without awaiting confirmation.

“I am arresting you for benefit fraud. You don’t have to say anything …

No. I won’t start there. That’s the end of the story. I’ll start at the beginning.

xxx

It starts eleven years ago. I have had a frozen shoulder for several weeks. That is the issue I go to the doctors about, though after questioning I identify a few other peculiarities, including cramps in my feet and neck and, surely not a symptom of anything, my handwriting has deteriorated to a messy scrawl.

I am lucky. The doctor takes an interest and joins the symptoms together. Or at least together enough to send me to a specialist, a neurologist.

“It makes no sense to me,” I tell my daughter Sally, when she phones that night. “My shoulder, feet and neck problems are somehow caused by a faulty brain.”

“You blame your marriage on that as well.”

A few weeks later I travel to London to see a specialist. Later, reading up online, I discover that he is actually one of the best neurologists in the world. He asks me all sorts of questions, does a range of tests and examines me thoroughly. He doesn’t wait for the results of the blood-tests or X-rays, he is 100% positive and gives me the bad news then and there. I have Parkinson’s Disease.

I am shocked. It makes no sense, I’m only 35, I don’t have any of the symptoms I associate with the condition. But he proves to be right. Over the next few years my condition gradually worsens, I eventually develop a tremor, my legs also become somewhat unreliable and I have moments when I simply freeze.

I am put on medication, which restores the depleted dopamine in my brain. My walking improves, I can even write again. I buy dozens of notepads and spend my spare time scribbling down poems and stories. This incidentally is another ‘symptom’ of Parkinson’s, the compulsive need to write, my diseased brain thinks it a writer. Of course this medication is only delaying my inevitable decay, but it feels good.

Years pass. My body slowly deteriorates. Walking becomes hard work and my body starts to let me down, sometimes refusing to start like a clapped-out old banger. I can’t even ask for a tow, as there’s no AA for people.

However, I refuse to sit and mope. I am single, free and still young (even though I have an old person’s disease). I decide to see the world while I still can. I go on safari in Africa, I go to my daughter’s wedding in New Zealand (she has cunningly chosen a new life far enough away to avoid caring duties when I deteriorate), I fly out to friends in Sri Lanka and spend a week in New York. There are, of course, moments when my body isn’t entirely happy with my adventurous side, but I am determined to enjoy myself.

During this time a few boyfriends come and go, but I loose the desire for dating.
Part of me feels like I’m recruiting my long-term carer. “I’ll be fine for a few years, then you’ll end up caring for my every need 24/7.” I just don’t want to be that burden.

I continue to work, as an administrator at the university, in the Zoology Department. They are incredibly supportive, letting me have time off to attend outpatient appointments and flexi-time to attend the local Parkinson’s support group (who meet in the daytime, even though there are a few of us of working age). When climbing stairs becomes something of an adventure for me they give me an office on the ground floor, pay for taxis to bring me to and return me from work. In return, I should point out, they got a grateful, loyal and hardworking employee who keeps the department running smoothly in spite of the academics and students.

However, one day a couple of years ago Vera calls me into her office. I guess immediately what was going to happen as she was in tears before she so much as spoke. “I’m really sorry,” she says, “but I’ve been told it’s not safe for you to work here.”

“Not safe? Are you confusing Parkinson’s with mad, psychotic axe killer disease?”

She laughs in spite of, well, everything. “I’m really sorry. Our insurers have refused to cover us if you’re working here, they say you’re at risk of falls and that could cost us a fortune.”

“That’s nonsense. If my condition makes me fall over (which it doesn’t) I can hardly sue you if I fall over.”

But there was nothing I can do. The insurers are king in this world and if they say I can’t work then I can’t get a job. I stay at home and slowly decline. My tremor gets worse and walking more than a few steps becomes an exhausting challenge. No more African safaris for me.

Running becomes my last remaining freedom. It is a friend at the local Parkinson’s group who suggests it when I freeze and can’t move, she suggests I try dancing or running instead. My body wouldn’t dance but when I tried to break into a run I was amazed to find that I could. I couldn’t walk but I could run.

Apparently this is a fairly common feature of Parkinson’s. There is nothing wrong with my legs, the reason I can’t walk is that the connection between my brain and my legs has broken down. However, a different part of my brain governs running and that mental pathway is undamaged.

Eleven years’ into the condition, running is my last salvation. I stagger to the front door, relying on my walking stick, then, suddenly, as soon as I begin to run my brain forgets my disability and my legs start working. The last decade of decay can be forgotten, I remember how to move. I fly down the street, across the estate and then round and round the park until I tire. I’ve learnt a route that avoids crossing rods, because if I have to stop I might freeze and suddenly find myself stuck, unable to move, unable to get home.

I occasionally hear whisperings from some of the neighbours. “She’s supposed to be disabled,” but I don’t care. Gossip is nothing compared to my freedom, and it is pretty much the last freedom I have. When I’m not running my body is a prison, trapping me into a dully, rigid, miserable life.

xxx

The policemen have to virtually carry me to the police car. I could run, of course, but I am not doing that in front of them, that would be used in evidence against me.

The policeman interviewing me is a young man who thinks he’s very clever. He shows me film footage somebody has taken of me running. I patiently explain my condition in great detail, the fact that just because I can run doesn’t mean I can walk, but he is conditioned not to believe me.

“You lied on your form,” he says.

“Show me where I lied?” I say. He points to a statement where I say I can’t walk.

“I can’t walk,” I explain again.

“But if you can run,” he say, “you’re fit for work.”

“Fit for work!” I laugh. “I’m not allowed to work, I’ve been ordered not to. Besides, I’m even worse now: I’m incontinent, can’t walk, can hardly type anymore.”

“But you can run.”

“I wouldn’t be allowed to run around an office, think of the health and safety risks.”

“You could do a job where you run instead of walk.”

“There’s no such job. Not one where I run all the time. Not even Mo Farrah runs up to the podium to collect his medal.”

Despite my protests I am not believed. A disabled person who can run is clearly faking it. I am given a date to appear in court. I try not to worry too much. My neurologist has agreed to give evidence and, I might have mentioned, he’s the best in the world. No judge could ignore the evidence of the best neurologist in the world.

xxx

The day of my trial. I receive a call from my neurologist’s secretary to say that he has had to attend an emergency incident and can’t make it. I plead with the judge but he refuses to delay the trial, accusing me of “wasting vital resources”.

A trainee medical assistant from Atos gives evidence against me. He states with total assurance that if I am able to run then I must be able to walk (he admits under questioning that he knows nothing about Parkinson’s, but he is still ‘100% sure’ of his facts). I provide such evidence as I can without my neurologist, articles from magazines and websites, other people with Parkinson’s who are also runners. They are pronounced as inadmissible; no reason is given or needed.

The judge decides very quickly that I am guilty. He had probably decided before I entered court, having read all about people like me in the Daily Mail.

I am sentenced to two years in prison. I am denied a wheelchair to leave court, as the judge doesn’t want to ‘buy into the lie’ that I can’t walk.

Four policemen carry me to the police van that will take me to prison. It is a long walk to the van from the court and they pause for breath. I am barely able to stand upright whilst they do so. Then a thought strikes me: I can’t stand up, I can’t walk, but I can run.

The policemen can do nothing but stare in amazement as the helpless cripple they had been carrying suddenly takes off and sprints down the street. By the time they recover their sense to chase after me I am already out of sight, sprinting off into the night, never to be seen again.