Ben Watt was diagnosed with CSS in 1992. He works as a songwriter, music-performer and international DJ, and he has his own production company "Buzzin' Fly Records". In addition, he wrote "Patient, The True Story of a Rare Illness" and he mentioned how writing this book was a way of dealing with his illness. Ben Watt has been in contact with Jane Dion and me and agreed to tell us here at the CSSA website how he has been doing lately.
The following is an update on how Ben Watt has been dealing with 13 years of CSS.
.......Since writing my book, I have consciously avoided discussing CSS publicly. I never wanted to become a celebrity sufferer. My book was an 'everyman' story and after writing it I wanted to slip back into the crowds and only draw attention to myself with what I have always done - writing and performing music.
Active involvement with support groups would have meant confrontation with CSS everyday, and I prefer not to confront it head-on unless I have to.
Of course, I do have to confront it. I still take medication every day. I still have blood tests every 2 months and chats with my consultant even after 13 years, but I now feel that discussing it strangely tempts fate, when before it seemed to make it less frightening.
For the record, I live on a low dose of Prednisolone (5mg pd) and a medium dose of Azathioprine (125mgm pd) plus an odd cocktail of allergy symptom relievers that still seem to play a part in things - Cetirizine (antihistamine), Pulmicort (localized steroid inhaler) and Fluconazole (localized steroid nose drops for rhinitis). Without these last three, asthma can return occasionally and loss of taste and smell and violent bouts of
sneezing are very common.
I lost a huge part of my small intestine to vasculitis. Thanks to an amazing surgeon I still have a complete digestive system, albeit very short. My other main pre-occupation is therefore diet. I have a low-fat, low-fiber diet to put low stress on my gut. I have a reasonably varied diet these days (chicken, fish, rice, white bread, fruit, salad, and vegetables). It is carefully monitored and measured. I left hospital at 29 yrs old, a skeletal 120lbs. I am now 42 and weigh 150lbs.
Above all, I feel I live my own version of an unrestricted life. I have three kids (all born since CSS), I am still with Tracey, I fly all over the world often on punishing schedules. I DJ in smoky night clubs until 5am in the morning when I feel like it. I run a record label. I record and write all the time. It feels 'normal'.
We are highly adaptive creatures. Circumstances change. We change with them. Yes, CSS can alter your life forever, but it doesn't have to ruin it. The three-legged dog still walks down the street.
I have had scares. We lowered my medication too low in 2000 and the vasculitis came back in my lungs, but was stopped quickly and efficiently with an increase of steroids and Azathioprine. And I accept that one day I will probably have to confront another major hurdle, but until it comes, I will live life to the fullest. I feel fit, slim for my
age (a bonus!), motivated, and no more moody or inscrutable to my family and peers than I ever was before CSS.
I wish everyone out there with CSS at whatever stage the very best of luck. My only advice would be to absorb the information, learn the jargon, stay calm, learn all you can, and take control of what you can. Then, get on with your life as best you can, and don't dwell on the bad stuff. In the end, it does no good.
Everything But The Girl
Buzzin' Fly Records
More in the Patient story archive .