Compassion Autumn Winter 2023

24 tcf.org.uk COMPASSION | FEATURE - MAKING A DIFFERENCE - HOW CAMPAIGNING HELPED ME AFTER MY SON’S SUICIDE Making a difference - How campaigning helped me after my son’s suicide by Joanna Lane Our son Christopher killed himself 15 years ago, when he was 31. I still think of him every night when I can't sleep, and sometimes I dream about him. I wonder how his life would be if he was still with us, whether he would be married and have children, be happy. I whisper into the dark 'I'm so sorry, so sorry, my darling' for all the things I missed. This doesn't sound as if I have come to terms with it, maybe nobody ever does. And I'm not sure if I ever grieved 'properly' in the sense of reaching acceptance. But some good things have come out of his death and I am grateful for those. What happened was this. After he died we found letters between him and his girlfriend, who had left him five years before. They showed that he'd never managed to have full sex with her (which she confirmed). My sister was convinced that a bad head injury he'd had falling from a tree aged seven, could lie behind this. She googled, and found research that showed that after head injury there could be 'multiple anterior pituitary hormonal deficiencies' that could interfere with growth and puberty, make a girl's periods stop, and rob people of their sex drive. And all this could start to happen years after the injury. It seemed to fit Chris's story. We had no proof, but her electrifying news gave me something to do. I felt that everybody who'd ever had a head injury, and their families, should be warned. If we'd been warned we could have asked the right questions, made sure he had the right treatment, somehow saved him. So this is how I've spent the past 15 years. I have written endlessly, obsessively, to newspapers, to MPs, to consultants, to medical organisations, to brain injury charities, to chat forums. And slowly, although I never imagined that one person could make much difference, I have had an effect, or so I believe. I have seen the annual figures for the diagnosis of hypopituitarism triple (though they are still much too low.) I have learned so much, discovering along the way that pituitary damage after head injury can not only make you impotent and chronically fatigued, but also cause serious depression and suicidal thoughts, as it did with Chris. I have met so many people who have not been tested properly, have been told instead that their many symptoms are caused by ME, CFS or fibromyalgia, and abandoned to live miserable half-lives with no hope of ever getting better. I have helped people to get diagnosed and treated, and seen the change in them. Some of these people - generally youngish men - have stayed in touch and let me know what they are up to, rather as sons would. This is what I value most. I think I was difficult to live with, while I was campaigning so desperately. I certainly think it caused the autoimmune disease which I now have. Maybe it is better to mourn properly and quietly, not plunge into hectic activity as I did? But this is what I felt compelled to do, for better or worse, and on balance, for me and for others, I think it was for better.