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Living with Adversity of Surviving Benign Brain Tumour

by Lorraine Kemble(more info)

listed in medical conditions, originally published in issue 196 - July 2012

I was born a healthy baby but at 8 months old I was ill for a few weeks with flu-like symptoms. Soon afterwards, while I was attempting to crawl and then walk, it was noticed that I was not moving normally and had developed spasticity in my right side. Because I was born predominantly right-sided, my physical difficulties have been continually exacerbated by the fact that I have had to use my left side when performing any everyday task.

Living Tree

When I was about 10 years old, I started to suffer from excruciatingly painful headaches which continued, with increasing severity, throughout my teens. Over the years a series of neurologists were unable to diagnose these headaches as anything other than stress-induced migraines.

Finally, at the age of 22, I suffered another ‘migraine attack’ which went on for several weeks. On this occasion, I could not swallow and my weight dropped dramatically, so I consulted yet another neurologist who insisted I was hospitalized to be treated for severe dehydration. He also ordered a CT scan (this was in the days before MRI scanners) which showed that, in fact, I had a large tumour on the roof of the fourth ventricle of my brain and I needed immediate surgery to remove it because it was pressing on vital nerve endings in my brain. I was rushed into the operating theatre but the anaesthetist neglected to put an oxygen monitor on my index finger. I went into cardiac arrest and the operation had to be terminated very rapidly.

At first, the doctors thought that they had removed enough of the tumour from my brain but, unfortunately, its size was disguised by the heavy steroids I was taking. Almost immediately afterwards I contracted bacterial meningitis and was rushed back into hospital where I was given daily lumbar punctures, as well as copious intravenous antibiotics.

As soon as I was sufficiently recovered, a second - much more major - operation was performed to try and remove the rest of the tumour which the doctors described as being “the size of a grapefruit”. A biopsy showed that it was a benign intra- ventricular tumour and it was assumed that this had been present from birth. It was slow-growing and had caused the right-sided spasticity and accompanying right-sided weakness that had manifested itself during my infancy. It was concluded later I that I had a malformation of brain cells which had twisted into a tumour.  Although the tumour was benign, it had to be removed because of its position. It had been pressing on many nerves and had already affected my swallowing mechanism irreversibly. A large blood clot was discovered underneath the tumour, from which it was deduced that I had suffered a stroke at 8 months. It had started to affect my vision, causing dizziness and impairing my reading.

There was severe inflammation to the brain from the second operation which was caused by trauma to the cerebellum, the area responsible for speech and balance. I was in a critical condition in Intensive Care for several days; my life ‘hung in the balance’ for at least the first 24 hours after my surgery.

The consequences in the aftermath of this second operation were enormous. Firstly, I couldn’t speak and, initially it was thought that this was as a result of the anaesthetic, but it soon became apparent that, not only was I without speech, I was also unable to walk, sit up or generally do anything much at all. In fact, it was thought that the brain damage incurred was so severe that I would be left a ‘vegetable’. In fact, the resultant brain damage is typical of an injury to the cerebellum - physical changes with no impairment of intellect. I was left with left body weakness in addition to the pre-existing right-sided hemi-paresis, coupled with severe ataxia and dysarthria.

I had to start again and begin to learn to use different pathways in my brain to re-train myself in all day-to-day activities. I underwent courses of intense Speech Therapy and Physiotherapy and eventually learned to walk in a hydrotherapy pool. Today, Speech Therapists are much more aware of the importance of breathing than they were in those days; unfortunately, I never really learned how to breathe properly and this seriously impeded my ability to develop my meditative skills as an Instructor. However, I am valiantly continuing to work hard at this, in order to improve my technique both for myself and my students. The dysarthria [a condition that occurs when problems with the muscles that help you talk make it difficult to pronounce words] caused by the disturbance of the cerebellum during the second operation, together with my haste to achieve speech, meant that it was very difficult for me to be understood by anyone other than my mother for the first couple of years. I pushed myself relentlessly to improve my walking and my diction, and approached all these huge challenges much as if I was training for the Olympics. However, characteristically, I was over-ambitious, exhausting myself to the point where I contracted ME and was virtually confined to bed for the next two and a half years. This certainly set me back considerably in terms of my progress, taking ‘one step forwards to two steps back’.

I was warned before surgery that I might suffer from epilepsy during the first year after the operation but, in fact, it didn’t ‘rear its ugly head’ until some five years later when I had a major fit for which I was hospitalized briefly. A few months later, I had another fit which was less severe; I have not knowingly suffered another one since.

As well as the impaired function due to the hemiparesis, the physical legacy is that I have ataxia with a pronounced ataxic gait with typical sway / stagger characteristics. This means that I have an increased risk of falling - something I have done on many occasions, injuring joints and - on four occasions - fracturing bones. As a result, I have metal plates in both of my wrists. My functional movements are slow and uncoordinated, and I have increased tone (spasticity) in my right arm and leg.

The ataxia coupled with the hemiplegia means that my spine and weight-bearing joints have been subjected to an abnormal and uneven amount of stress. This has caused damage to the articulating surfaces of the knees, particularly the left knee as it is my stronger leg and, therefore, bears the most weight. The lumbar spine and left sacroiliac joint are always under pressure when I walk, and the stress to these joints cause joint pain and sometimes referred nerve pain (sciatica). I tend to put my weight on the outside of my knees and hips, rather than in the centre and, as a result, some twenty years later, I have now developed osteoarthritis in my knees and - to a lesser extent - other weight-bearing joints. The general musculoskeletal instabilities and pressures cause increased tightness, leading to a vicious circle of pain.

My dysarthria causes my speech to be somewhat slurred - particularly when I am tired and unwell - plus, I have many digestive problems. I must be very careful what I eat in order to minimize the severe pain, nausea and bloating which result from eating the wrong kinds of food. Stress, too, exacerbates the symptoms as well as my nervous system, which is patently weakened. It has been suggested that these digestive problems are neurologically based, but this has not, by any means, been proven. In any event, whatever the cause, I have been left with a much compromised immune system with which I have to deal on a daily basis.

I am, inevitably, largely physical dependent on other people. However, I strive continuously to retain my mental independence; obviously this is easier to maintain on some days and at certain times than others. One of the most difficult issues for me is the lack of my independence; not being able to drive anymore; having to rely on other people. Although I have a physical disability, it is often difficult for my carers and close friends to fully comprehend my inherent need for mental autonomy.

I am a great believer in natural, holistic remedies for the treatment of and attitudes to pain and chronic illness and I have investigated many alternative therapies to alleviate and control my various ailments. Neurophysiotherapy has proved hugely effective for me and chiropractic kinesiology really assisted me when I was endeavouring to re-train my neural pathways in order to improve my speech. The degree of positivity of the practitioners with whom I worked obviously affected the huge capacity for progress that I was able to make at differing times.

Due to my multiple disabilities, I do experience many varied frustrations and I have employed a myriad of tactics over the years to help minimize these. I understand that not all methods work for everyone, but my coping strategies have largely been based around healing of various kinds, both as a recipient and as a healer myself. Meditation, training as a Counsellor and Reiki Practitioner as well as practising various types of yoga, have all helped me over the years. I have been introduced to a wide range of therapies - and the people who practise them - at different times and stages of my life and I definitely believe that certain ideas and practitioners come into your life for a reason, often when you need them most.

In recent years, I have developed a strong belief that I was meant to survive to have a purpose: to be a teacher and so educate other people as well as myself. I have always viewed Life as a continual opportunity to learn. Teaching had always been my vocation and I had trained as a Montessori teacher before my operations. Consequently, as a result of all my struggles, I very much wanted to transform my negative experiences into positive ones. To that end, I have created a website: www.peoplewithpotential.org; it is my dream that this will bring inspiration and hope to others. If I could attain my goal of offering belief to other people in a physical situation similar to mine, it would really be so fulfilling for me to know that I was doing something truly worthwhile. My website offers many articles on the role and effectiveness of a wide variety of alternative therapies, as well as news of current medical research. I have also posted my thoughts and insights about my evolving quest for spirituality and inner healing.

It has been a long and arduous journey, and my life continues to be full of myriad challenges - both mental and physical - but I endeavour to retain a keen sense of optimism and I achieve that most of the time. This is for the present and also for the future – whatever it may hold.

Comments:

  1. Victoria Sprigg said..

    How inspirational. What a life they have lead so far and such determination to deal with life-threatening situations. I admire them and agree, as a Reiki Master and Holistic Aromatherapist, that there are many coping techniques around us. Well done.


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About Lorraine Kemble

Lorraine Kemble was born in London and attended Hasmonean High School. She then trained as a teacher at the Montessori College in Lyndhurst Gardens, London NW3. At the age of 22 she was diagnosed with a large benign tumour. Many years of operations and rigorous therapies to rehabilitate followed...

Prompted by her own struggle and the many obstacles and difficulties she has overcome, Lorraine began to share her thoughts, insights and accumulated knowledge which eventually led to the creation of a website - People with Potential. She sincerely hopes that this will be a source of support, inspiration and encouragement to people with all kinds of disabilities – both physical and emotional. The website contains articles on the role and effectiveness of a wide variety of alternative therapies, as well as news of current medical research which is, obviously continually being updated.

A Healer, Reiki Practitioner, Counsellor and poet, Lorraine currently lives in Belsize Park, North London and may be contacted via lorraine@peoplewithpotential.org     www.peoplewithpotential.org   

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