Friday, 14 February 2014

A letter to 14 year old Gary

Dear Gary

This week I should have been in Mauritius, but during the night before I was due to fly I started to experience severe abdominal pain and vomiting, so I had to pull out. It was a sensible decision; the pain is subsiding, but it does take a few days of resting and fasting to recover. I'm used to it, and in time you will be too.

It is 1984. You are now approaching your 14th birthday and you are lying in a hospital bed for the first time. It is a Nightingale ward in the Bradford Royal Infirmary, a horrible and depressing place that thirty years later has hardly changed. This will not be the last time you will be there, or Bradford's St Luke's Hospital. In fact, you will see inside a lost of hospitals: in Nottingham, Leeds, Aberystwyth, Tokyo, Kaohsiung (that's in Taiwan) and in Ningbo (that's in China - more of that soon).

I know that you are now feeling very scared and confused. You have been admitted to hospital following weeks of crippling arthritic pain in your legs. You can hardly walk, and you now find out that your weight has dropped to 5 stones 3lbs. After getting no satisfaction from the son-of-a-bitch GP who told your parents that there was nothing wrong and you were trying to stay home from school, your mum took you to the Accident and Emergency Department and the doctors there admitted you immediately. What they told you has changed your life for ever: You have something called 'Crohn's Disease'. You have never heard of this, but you will be surprised how many people do suffer from this condition. Right now, however, the word 'Disease' conjures up all sorts of frightening images and it feels like your world is crumbling. You don't know where it comes from. Sorry, even thirty years later, the specialists still don't know what causes Crohn's. Given the problems on your mum's side - a history of bowel cancer, colitis and other forms of IBD - it is possibly genetic, but no one seems to know for sure. And in the grand scheme of things, does it really matter why you have this problem? 

You learn that Crohn's is connected to stress, and that it is possible that the relentless and merciless bullying you have just experienced at your new school hastened the Disease's onset. Don't worry. You won't be bullied again, and the life you lead will be the best retaliation against your tormentors you could ever imagine.

Stress will always be a factor. You will want to live life at a constant gallop, and you will achieve so much in such a short space of time. You will learn to slow down, prioritise and avoid stress as much as possible. Rest as much as you can and always get a good night's sleep. It will take you a long time and much nagging from your wife before you accept this change. However, you will not only enjoy it, but benefit from it too.     

Right now you are in Ward 15 of the BRI and you are the youngest patient there. You are surrounded by elderly men, most of whom have had heart attacks. Every night you are awakened by the sound of doctors and nurses running down the ward; another patient has passed away. You were probably talking to him earlier as you made your way down to the television room at the end of the ward to watch the Olympics in Los Angeles. They tell you stories, ask you questions and you run little errands for them. You will visit some of them again after you leave, and soon read their obituaries in the Telegraph & Argus. This will be your first experience of death; it is not right that a 14 year old should be in such a ward and be so close to death, but I am sorry to say that this is typical of Bradford's hospitals. In 2010 you will lose your best friend in the same depressing place, and still nothing changes.   

You are lying in bed with a drip in your arm feeding you antibiotics and steroids, and you have to pass your stools into a special toilet for the microbiology department. You have had your first ever barium meal examination (it gets better, trust me), and your first sigmoidoscopy (sorry, that is still as painful as ever). You did not have an anaesthetic and two nurses held your hands while you screamed. You have never experienced such pain. You spend your days doing the school work that your magnificent teachers at Buttershaw Upper School have prepared for you, and waiting for the one hour of visiting time when Mum and Dad come to see you. Your Dad will make a request on the hospital radio for you - You're My Best Friend - and after you lose him in 2004, this song will make you weep because of the memories it conjures.  

In time you are discharged from the BRI, and your new life with Crohn's Disease begins.

At this point I want to hold your hand; I want to hug you and reassure you that everything is ok; it works out fine, better than you could ever imagine. You miss almost a whole year of 'O' Level schooling, need to get a taxi to school and walk with a stick for a while, but you do manage to get into the 6th Form and University. You have great teachers at Buttershaw who are sympathetic to your condition and cannot do enough to help you.

You have vowed to never let the Crohn's stop you doing anything. Congratulations - it doesn't! Boy, are you in for an adventure with, and despite your Crohn's! It limits you from time to time: you develop a photographic memory for the location of public toilets, you can't eat too much spicy food, and there are still times you have to use a walking stick. The abdominal pain can still be unbearable. But you are alive. You are ok. You grab every opportunity that comes your way. You are still happy and learning to treasure every moment.

From BA you start a PhD in your hobby - yes, all those hours spent listening to shortwave radio pays off and actually becomes your job! - and you set a new record at the University for speed of completion. You get your first job in Nottingham University at age 24 and make lifelong friends there; and your first book is published just two years later. That's correct, you do write books - perhaps not the ones you want to publish right now, but you are an author! Your dream since the age of 6 when you first learned to type on Mum's machine becomes a reality.

You want to travel; you plan to see the world. Well, you do. You will go to so many places: Australia, the US, Taiwan, Hong Kong, Singapore, through Europe, Japan and China - and that's just for work. You will travel to many more places for holidays. Right now, you have a map of the world on your wall and gaze at it with wonder. Never let that sense of wonder escape you. Sometimes, you will despair of foreign travel - airports, aeroplanes, hotels - but you must always remember to look around and remember how you felt when you stared for hours at that world map. Never take it for granted.

You may be a picky eater now, but you will learn to love eating (or at least trying) all kinds of food - and the more unusual the better. Your mum will worry constantly and tell you that you are sick because of the 'funny foreign food you eat'. Well, that's ok. Even with dementia thirty years on, she still worries; you will always be her little boy - that's what mums are for. You will come to appreciate how eating good, unusual food is a key pleasure in life. You will also learn to eat only when you are hungry. Don't be dictated to by time - if you are not hungry at breakfast or lunchtime, fine; you will feel hungry later and then you will eat. With Crohn's it is much better to eat small quantities only when you are hungry. You will also have to go to the toilet frequently - don't be embarrassed by it. Everyone does it, and you will learn coping mechanisms, such as always sitting in aisle seats on trains, planes and in cinemas. You will receive magnificent support from the National Association for Crohn's Disease and Colitis who will teach you so much and make your life that little easier. You will meet many doctors, surgeons, nurses and all kinds of specialists. Some will be better than others; some will be more trustworthy than others. The key is to listen to your own body; you are the most qualified expert about your Disease. You will have frequent small operations, abscesses, colonoscopies, blood tests galore, Vitamin B12 injections every three months, and when you reach my age you will actually be injecting yourself very two weeks.         

You will live in China for two years and be the founding Dean of the first foreign University there. You will return to the UK and become a Professor, a Head of Department, and join the Department of International Politics at Aberystwyth. You haven't heard of that Department yet, but being part of it will become an ambition when you start to study International Relations at University. Remember, as a Professor you will be paid to speak, write and read - it doesn't get much better than that. It will be stressful at times, and the Crohn's will slow you down. Always remember how lucky you are, and remember how hard your Dad had to work in a proper job to help you get to this position. By 44 you have everything except perfect health, but it doesn't matter. You must never, never, never let the Crohn's determine what you do or don't do. Learn to live with the problem, not be submissive to it. In time, you will meet many people who tell you how sorry they are because you feel sick, that you are in pain and have to live with a chronic illness. You will explain to them 'that's my life; that's who I am. I'm used to it.' Having Crohn's will be normal for you; and that's a good thing. Never ask, Why Me? It makes no sense.

You will have a frightening episode in Japan. I don't want to tell you too much, but it will be the most serious threat to your life. But how many other people can say they've had life-saving emergency surgery in Tokyo? You will dine out on the subject for years; it will be an exciting topic of conversation. 

The most important thing I want to tell you is that you will not face this adventure alone (and yes, your life with Crohn's is an adventure). You will meet the most wonderful woman who will accept your illness and learn how to take care of you. She will always be there for you and never judge you or be embarrassed. She will do things for you that no wife should be expected to do.  She will travel with you, and you will enjoy the adventure together. She will stay with you all night on a waiting room sofa in the Tokyo hospital, and the first thing you will see when you awake from the anaesthetic will be her smiling, loving face. You will realise you could not do this alone, and that her love is the best medicine you can take.

So, as I write to you from 2014, thirty years from when you are first diagnosed with Crohn's Disease, I want to send you this simple message.

Don't worry; there are worse illnesses you could have, and you do have the most wonderful life. You have the best job and the best wife. You will learn your limitations, but they are few. Relax, enjoy the ride. It's all part of the adventure.

With love and best wishes