Still alive and as alert as ever
(told by Jeans' husband Peter)
I would appreciate it immensely if you could publish my story about Jean, with the hope that others may be inspired and prove to them that quality of life, though affected, may not be a stumbling block to their future. However that isn't always the case, dependant on whether or not you're the family breadwinner or a mother with young children. In one sense we were fortunate in that throughout Jean's illness, family and friends have assisted and supported us and I was able to carry on working again. Sadly though our daughter had to be sent away to Boarding School at the age of 7.
Jean has had her Acoustic Neuroma partially removed 5 times surgically during the last 23 years. I am writing to dispel the negative attitudes shown towards such treatment. Life is what you, yourself make of it and if you take an optimistic rather than a negative approach you can survive. Though you may appear different physically, your personality shouldn't change! If it does then it could be caused by other peoples attitudes to you as a different person, perhaps because you are facially disfigured or partially deaf? Fortunately my wife Jean has always had a happy outgoing disposition which has helped her, and even today she still puts others before herself in spite of her own problems.
23 years ago, when Jean's 5cm AN was discovered at the age of 38, we were distraught, but knew life had to go on as our one and only daughter was just seven years old. Now that daughter is married and we have two grandchildren (ages 4 and 2). Prior to the discovery of Jean's AN, we had been living and working abroad. On returning to the U.K. to be given the drastic medical news, serious as it was in itself, I also became unemployed.
After her first 10hr operation for partial removal of the tumour, we were more relieved that Jean was alive, though totally deaf on the left side, and that of course made her determined more than ever to prove that inwardly she was still thinking like a normal and fit person. Some years later she aquired a cross aid attached to her spectacles which is useful for social ccasions, especially now that she now only has the use of her right eye.. I have to say her intelligence hasn't diminished in any way, nor did she suffer from short term memory loss. In fact she has written her life story, being a self-taught computer user: "Jean's Acoustic Neuroma Experience" which can be found at http://home.ptd.net/~tonyc .
Please stop the myths that surgery for AN stops you living. Yes, Jean does have difficulty eating and drinking and has a one sided smile, though her left facial paralysis was rectified by plastic surgery. Now the two sides of her face are not equal any more due to the ageing process, but we enjoy the right-sided sagging which shows she is as normal as any fit over-50 year old. Jean does use eyedrops for her left eye, though only at bedtime. During the last 23 years she's had all the symptons - dizziness, balance problems,vomiting etc., but these have stabilised and some have even disappeared. As for the disabilities being so severe that you need a cane to help you walk, Jean never had the stregth of grip to be able to do that. Instead, with limited walking ability indoors, she uses doors and furniture to balance and outside she uses a wheelchair.
Life certainly didn't stop for us when Jean became ill in 1975. We made the decision to live for each day and enjoy life as best we could. Since Jean's illness my own work assignments have taken us abroad on many occasions and we have lived in Afghanistan, Libya, The Netherlands, Indonesia, The Philippines, Bahrain, Lesotho, Turkey, Malaysia, Egypt, Mozambique, Swaziland and latterly Botswana. Prior to Jean's illness we'd resided in Nigeria, Zambia, Malawi and Abu Dhabi. Before and after the AN we've flown by air on approximately 150 occasions. No problems whatsoever for Jean flying - in fact she finds it the smoothest form of transport!
In 1975 we couldn't depend on any particular surgeons skills nor select the right treatment. Jean probably acted as a guinea pig making medical history in Britain at that time! Both of us have had to curtail activities, the major one for Jean not being able to work again, and later not being able to do household chores. At one time we both enjoyed dancing together and sailing, but now we both have community activities, are avid readers and computer users. Jean enjoys corresponding and searching the web. She keeps herself busy and doesn't dwell on her inabilities, so depression isn't a problem at all. Days are never dull - there is always something happening. After 23 years and five Acoustic Neuroma surgical operations, Jean is still alive and as eager and alert as ever.
Words can't describe how greatful we are to the medical profession. Fortunately we haven't experienced any myths and have always been kept well informed. When Jean's 5cm AN was discovered much damage had already been done. Today her AN would probably have been discovered much sooner, but we have no regrets and are thankful that she is here today. I am happy to tell her story, and to continue adding to it as every day goes by.
Peter R. Sowrey <peter.sowrey AT virgin.net>
Last Edited: Wednesday, October 30, 2002