Losing your beautiful child to an eating disorder is every parent's worst nightmare when battling with this horrible illness. It is something that is constantly at the back of our mind as we watch our child disappear and transform in front of our eyes, physically, mentally and emotionally. And, unlike virtually any other potentially fatal illness, eating disorders - and especially anorexia as it advances and begins to consume the young person from within and take hold of their minds - has the patient fighting against treatment and support. It's not that they don't want to get better, it's just that they can't without a heck of a lot of highly skilled professional help. This is made exponentially worse once a young person reaches the age of 18 and is legally permitted to choose whether or not they receive and / or engage with treatment. If, indeed, that treatment is any good.
I'm already half-way through Dying to Be Perfect: A Mother's Story of Her Son's Battle with Anorexia by Susan Barry which describes her son's losing battle with anorexia. In the four years leading up to his 18th birthday it appears that her son, TJ, simply 'played the system', a bit like Ben did. If you remember from my book Please eat... Ben succeeded in deceiving CAMHS for some time, convincing them that he was actually relatively OK. So much so that they began to space out our appointments just weeks into treatment. I was terrified they were going to discharge him.
If anorexia can succeed in deceiving the mental health professionals, then it's got a pretty easy job of convincing everyone else they come into contact with that nothing is wrong.
Which is why, in their ignorance, sports coaches continue to let these young people exercise round the clock when, in fact, it could kill them. Back in autumn 2009, not once did Ben's cross-country running coach ever tell him to stop flogging his increasingly emaciated body to exhaustion twice a week.
And all the rugby coaches did was to move him down to a less demanding team. I thank God that he broke his nose and was invalided out of rugby before he snapped in half. Why didn't I raise my concerns with the coaches? Because, for ages, I - in my ignorance - simply didn't know what we were dealing with. As the parents of a sporty, health-conscious, intelligent teenage boy, it can take months and months for the penny to drop that your boy has an eating disorder, by which time they are already disappearing in quicksand.
TJ, Susan Barry's son, managed to keep his weight at a certain level for four long years, convincing everyone that he was just fine, if a little skinny. Then, once he arrived at the age of 18, he was legally in charge of his own destiny and the anorexia said "No". Fight tooth-and-nail as she might, his mother was unable to help. Legally, her hands were tied. All she could do was watch as the anorexia made it impossible for her son to act on her increasingly-impassioned and imploring pleas.
TJ was well aware of what was happening to him (described in extracts from TJ's diary during this period). He was well aware that he looked terrible because of the extreme weight loss, well aware that the anorexia was forcing him to exercise round the clock and well aware that he was deceiving people whenever he was able. This is the nature of anorexia. It wants to get a vice-like hold on its victim, withdraw him or her from the outside world and strangle and consume him or her until there is nothing left but skin and bone. And the law is happy to allow this to happen because, after all, an 18-year old is an adult, at liberty to make their own decisions.
The law is happy to allow our children to die.
I have said this before that it's way-past-high-time that the law in the UK, the US and other countries stopped treating seriously ill anorexic patients in the same way they treat other adults when it comes to data protection and free will. Unlike virtually any other illness, the patient will often fight tooth and nail against treatment of any kind. While they're still a minor, at least the parents can fight on their behalf, but come midnight on their 18th birthday the parents are kicked out of the equation forever.
It's not that Susan Barry didn't love her son enough. Good God, she loved him to distraction, as much as any good parent loves their child - as much as I love Ben. And she tried as hard as she humanly could. Of course she did! What parent wouldn't walk on hot coals to save their child's life? Yet, because of The System and the insidious nature of this lethal illness, she was able to do little more than just watch as her son wasted away in front of her eyes.
And it wasn't helped by thoughtless comments and actions by the various professionals with whom her son came into contact, from college staff through to clinicians who should have known better.
Then one day she received that telephone call that every parent dreads...
My heart goes out to Susan Barry, an incredibly brave, courageous and loving mother who has put together what must have been an almost impossibly difficult book because she doesn't want other families to go through what they went through. She wants to educate people on what anorexia is really like, deep down, and how it transforms our children's minds, not just their bodies. And she wants to raise awareness of the crazy over-18s law that puts the patient in charge of making their own decisions when it comes to treatment.
And she continues to fight so other parents' children can be saved.
What a woman.