CYSTIC FIBROSIS:
THE BIG ROLLER COASTER RIDE
There is a lot of stuff written on the net about cystic fibrosis (cf) and there is no shortage of quality information from sources such as the
Cystic Fibrosis Trust.
However, for parents of children with cf (pccf) and for people with cf (pwcf) life can be like trying to swim in an ocean. This ocean has invisible boundaries divided it into sections. These boundaries are in constant change so you never know which section you're about to enter.
Each section relates to the current clinical status of the pwcf and the knock-on affect to everything around them - family, work, plans, relationships, where they go, what they do, you name it... Each section of this ocean contains one of more of the following from this non-exhaustive list: One section can be calm, another with small, medium or large waves. In another section there are sharks, in another section it is very cold, another is warm, another is very hot. In another section there is a ship heading dangerously in your direction. In one section you are swimming, in another you have no energy to swim, in another you can see an island but you're running out of energy, in another you have a boat, in another you are blessed with nothing more than a life jacket.
Things are looking good: you're tired but you see an old wooden boat, you head away from the island towards the boat and manage to climb inside - it has a couple of tiny holes but, worst of all, no oars... Welcome to CF!
Some people with a lack of
empathy
and
emotional Intelligence
or who are in
denial
or for whatever reason) say "Oh well, this explains life for everyone" or "We all have problems" or they just don't want to know or don't care... Yes, most people are swimming out in that ocean too, trying to keep their heads above water; they do also have their ups and downs, and have one or more problems to manage here or there. The difference, in this context, is simple - although they often don't realize it they are swimming within sight and reach of the beach, those with cf and their parents are 1000km out to sea.It would do these people well to remember that cf (or any other serious condition) can occur to absolutely anyone,
anyone's child,
relative or friend and, note this, one in every twenty-five people are a carrier of the defective cf gene... (It is a recessive condition which means that only a person who has received two cf defective genes, one from both parents, will have been born with the condition.
Entering the 'world of cf' has its ups too. You come across many incredible characters, both young and old. Some with cf such as
Alice Martineau,
Nicky West
and
Alex Stobbs.
You witness the bravery, like you've never seen before, of children and adults with cystic fibrosis. You meet incredible people without cf, people that are so committed to finding a cure or supporting those with cf - these include parents and relatives of people with cf, doctors, nurses and other medical professionals, those working for the cf organizations, such as the
Cystic Fibrosis Trust.
Incidently, there are some video clips on the following website that will really give you a better idea of cystic fibrosis and Alex's 'Roller Coaster Ride'. Just see how much medication Alex takes in a week in the 'Richard and Judy 1' clip. But, IF YOU LIKE MUSIC THEN YOU REALLY SHOULD SEE THIS SITE:
The Alex Stobbs Matthew Passion Project.
From someone who has met Alex on a number of occasions the writer of this article can tell you that he is as charming off the screen as he is on the screen. Alex believes
"In order to enjoy stuff you can't be scared"...
What more can I say...
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