Lessons from life with my tumour
IWAS 30 when I was diagnosed with a rare brain tumour. It could not be completely removed as it wraps around nerves, so there was always the possibility that it could grow back.
It could be slowed down, but only with dangerous and painful brain surgery. So far I have had it drained five times and it is filling up again.
I am 56 now and the repeated damage caused by the tumour and surgeries have left me disabled. I can hardly walk and have no sense of balance among other things.
This has had a profound impact on my life and I would like to share with you what I have learnt.
Over the years I have gone through every emotion, gradually understanding how each one can help. I know endless crying won’t change my situation but it does act as a release from tension.
Anger is destructive for me and those around me, but I have been able to channel it into a strength and determination.
I have explored spirituality and homeopathy. Neither cure my condition but they offer strength and guidance. Being able to relax and meditate alleviates my stress.
After gaining a psychology degree, I went on to attain various professional positions. Frustratingly, these kept getting disrupted due to the return of my tumour. I finally obtained a teaching qualification, working with adults where I thought i had found my niche. I enjoyed it so much.
Sadly, the growth returned. I gave up teaching and decided my work, training and experience had been for nothing. Little did I know my learning and sharing knowledge had just begun, only in a different way than planned.
I became involved with a forum at the hospital where I am a patient. Increasingly I ventured into areas as a patient representative, working with senior managers.
At times I questioned myself, as my input seemed comparatively trivial. In time, I realised my questions were fundamental to both patients and staff. For example, the opening times of the new coffee shop. It was a trip off the ward for many. If it was closed on weekends and evenings patients couldn’t go with their visitors. So it was important.
I was then asked to do a talk to a mixture of staff at the hospital monthly inductions. This got a positive response. From the beginning I emphasised the importance of including social and emotional support. I had learnt how crucial this was for patients, and how easy to address.
At one hospital talk an OT asked if I could talk to her students at Liverpool University. This was the beginning of my input as a service user, with health and social care students and professionals. I enjoy it so much and I am using my experience, perspective and skills.
What I have learnt since being disabled is how difficult it is in a world geared to ablebodied people. Sadly, there is a lot of ignorance. I don’t think people maliciously park their car over a dropped kerb, they are just unaware of the problems this causes for wheelchairs and scooters.
I have also experienced kindness. Having gone through difficulties, I really appreciate kindness from others. From strangers to those who have gone beyond their job to help.
Society doesn’t reflect the importance of those helping people feel human. Keeping people clean, a chat and a cup of tea go a long way.
I have often said that people aren’t cars, to be physically fixed and sent on their way. Their needs are far more complex, yet relatively simple to address.
Changing terminology regarding the disabled does little to raise awareness. Physical and emotional disabilities are constantly confused. For instance, an inability to walk doesn’t mean you can’t answer for yourself.
Disabled people are far from the weak, vulnerable people depicted by society. I find ill and disabled people to be some of the strongest. They have to be to survive Their courage, resilience and often kindness and understanding of others is admirable.
Although it got me into trouble in school, my sense of humour is an absolute blessing. Laughter is definitely the best medicine.
I don’t know what my future holds, but as the saying goes “this too shall pass”.
If you have any questions, I would love to hear from you: lynnburman@hotmail.co.uk.
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