Whoever is the next taoiseach, Orla Tinsleywants the best shot at life she can get, her illness notwithstanding. This is her impassioned appeal to the government we are about to elect
I watched the Ahern v Kenny TV debate unfold. I was particularly interested because I am still unsure as to where my vote will go. Being a teenager in the throes of exams I am bombarded with calls to "rock the vote". It is easy to spurn such rocking, particularly when voting is on a Thursday, in the middle of university exams.
However, I have a very personal interest in this election, a selfish one at that. It concerns my life and the lives of many of my peers, so I've taken time away from study to write this.
I needed treatment in hospital last April for my cystic fibrosis. I have had this illness since I was three days old. Ireland has the highest incidence of CF in the world and yet we have the poorest facilities. In their debate, Bertie Ahern made light of the fact when Enda Kenny said that a 30-year-old machine was in use in a brand new hospital. The Taoiseach quipped under his breath that it was impossible as it was a new hospital.
But he doesn't understand. Machines are exchanged, underfunded and overused. Just like the nurses, doctors and patients who are shovelled through the relentless system.
The last time I went into hospital I left after 10 days. I am usually pretty level-headed about my illness. It doesn't control my life; it's an extension of it. I've learnt to deal with it to a certain degree. However, there are certain things my mind cannot deal with; lack of sleep is one of those. I left hospital a week early. I would like to tell the Taoiseach and Enda Kenny why.
They might not be aware that elderly, senile patients are forced to share rooms with CF patients in a way that poses a threat to us both. In this environment, I have to get used to being cursed at continually.
My crimes include opening windows, running taps and pulling my curtain to change in privacy. I have laughed nervously as psychiatric patients have sat on my bed trying to convince me that the world was going to explode. I have met people who have wandered into the six-bed room where I sleep and attempted to convince me they could heal me if I only let them touch my arm.
I've seen beautifully glamorous elderly ladies urinate on the floor through no fault of their own. I've maintained my composure as other friends with CF are attacked by elderly people or family members for being too loud or for having the gall to have the window open.
Sleep is not possible at night and with breakfast at 7am, cleaners at 8am and a barrage of doctors, blood-tests, physio and medical students to occupy, it's not possible in the day. iPods are a handy way to try and escape unless they go for a walk, like mine did the last time I was there. That theft, along with nine consecutive sleepless nights, instigated my decision to leave.
Checking myself out had fortuitous consequences - a much sicker friend, who had been in a different six-bed room, was moved into a cubicle. A week later I found out that my friend had passed away. I took a small comfort that her last few days were in the privacy of that room with her family, and not with five other people and theirs.
I have often observed old and young people dying in the room I sleep in. The unspoken rule is, if you can walk out, you leave or if you can't, you put on your headphones and pretend. You pretend you cannot see the silhouettes through the curtains, bending down to give one last kiss. You pretend that you do not feel guilty for being there, guilty about your hacking coughs which interrupt their final moments.
Going home, you pretend you have never seen the big blue body trolleys rush by. The old lady across from you, cursing ferociously when you open a window and praying out loud for hours on end at night, does not bother you. At least that's what you pretend.
There is a constant fear of infection when we come through A&E. My latest jaunt there was over two days, where I was exposed to infection and left coughing on a plastic chair. At 3pm I got a drug line inserted, whilst awake, into my arm. I watched it all on the big screen in fascination, then returned to my plastic chair in the waiting room.
I waited again before being transferred to the actual A&E bed area, where I waited on a larger plastic chair. I then spent the next 10 minutes waving furiously at a porter I recognised. Half an hour later he emerged with a trolley.
He worked hard to get it. When I returned from the bathroom the pillow he also worked hard to get was gone. With a respiratory disease and gloopy, mucus-filled lungs, lying flat is not acceptable. Without a pillow my trolley was useless as I had to sit up anyway.
This situation is unfathomable. People with CF are sick of hearing the statistics. We are sick repeating the same line: "We have the highest instance of CF in the world with Third World facilities." We are sick of hearing that money is coming, that somebody somewhere just has to sign something. We are sick of waiting and I am sick of watching my friends die while we wait.
Recently a newspaper printed an article about another pal who passed away a month before the friend I mentioned earlier. This young woman came up with the slogan "Sick Waiting" because she felt it encapsulated the mood of people with CF in Ireland. The general consensus is, she was dead right.
My friend wrote a letter, which was published in The Irish Times. She was left in A&E in agony for hours without an X-ray, painkillers or a chest drain. Her lung had collapsed and this agony was prolonged. To add insult and torture to an already appalling case my dear friend had her chest drain lifted incorrectly which messed up the gravity and blew her lung out for the second time. She never recovered from that infection.
Outside of hospital, my friend worked selflessly editing a CF magazine and gathering extensive knowledge on treatments and funny anecdotes regarding the disease. She also completed an MA, fell madly in love and won the Young Scientist of the Year exhibition. Her team won the European Scientist of the year too. She fought every inch of the way for her life. Nobody wants to be a victim. This is something I personally loathe.
The idea that someone is poor, fragile, incapable and not in control of their destiny, terrifies me. Yet right here, in this shambles of a health system, the reality is that what we fight so hard not to become has become us, uncontrollably so.
When not in hospital we fight to stay alive. We also fight for our healthcare. Daily we take our drugs, nebulisers and 50 or so tablets. There are also, for some CF patients, enemas, needles, insulin, and bags of diluted feed fed through naso-gastric tubes.
We do it because we are lifers. We have the illness, we deal with it in different ways. Yet most of us work hard at keeping well because we are determined to have the best quality of life possible, because we, like everyone else, deserve it.
Every time we enter a hospital this idea is undermined. Our hard work to stay on this journey called life is destroyed by the broken promises, by the bloody politics of it all. The money was there for staffing but the number of staff was capped. The plans were there and six months later we still "just need someone to sign off" on them. There is no more time for planning; the time for action is now.
I am 20. The average life expectancy for a person with cystic fibrosis in Ireland is 21. In Northern Ireland it's 33. In Britain, we live longer again, reaching up to late 40s in the US.
I am in first year in college, have missed 10 weeks of this school year but I intend to do my exams and do well. I will then go on to write, act and live my life the way I want, alongside CF, as I have always expected to. I am not ready to be stopped yet.
Taoiseach, Enda Kenny, our lives are quite literally in your hands. We want an honest shot at it. Even if we have a few limitations the system should not accentuate them. It should work in favour of its long-term patients.
Allow us to recuperate with sufficient sleep and without fear of infection. Enable us to leave hospital without having to take two extra weeks off to sleep, or spend time weaning ourselves off the sleeping tablets.
Bertie, Enda, give us a chance at life and I assure you, as the youth of today who have truly experienced both the ugliness and the miracle of life, we will not let you, or ourselves, down.