In a world where human rights for every person are being discussed and fought for, whether it be a movement for women’s rights, rights for fathers or the LGBT community – this is all becoming normal in society – but what exactly is normal? Normalcy, like many things in the world is misunderstood – some may believe their traditions, values and rules are the norm and are what should be conformed to by everyone – some may have other rules and traditions and so believe otherwise. Normal varies between cultures, generations, religions and countries – it lacks cultural relativism; therefore, my aim is to investigate the idea of normality in a western individualist society such as in the United Kingdom and to the extent in which sufferers can live a ‘normal’ life.
I will explore the effect multiple sclerosis on society and its sufferers, to what extent can patients lead a regular, normal and functional life? Multiple sclerosis is a condition suffered by hundreds of thousands of people each year across the UK. It is an adverse condition that affects the lives of not only the sufferer but their families, relatives, friends and even colleagues. Globally, this degenerative condition affects an estimated 2.5 million people[footnoteRef:1]. Physical impairment, disabilities and debilitating diseases are becoming more common in the United Kingdom, yet the level of awareness and knowledge of these conditions remain the same, parallel to minimal. I firmly believe that social awareness of medical conditions such as ALS, multiple sclerosis and autism is extremely important within societies across the world in order for us to progress as a species. [1: Tim Newman (14th October 2018), Do cannabinoids ease multiple sclerosis symptoms?, Medical News Today, https://www.medicalnewstoday.com/articles/323325.php]
Disease, sickness and health are all normal, but when a person in a wheelchair is seen, or someone with a physical disfigurement is ‘spotted’ – people start talking, in their small groups or pairs begin muttering as if they’ve seen some sort of phenomenon of massive proportions. Why? Society has not been educated, their definition of normal doesn’t include the understanding of disabilities and sickness. Their definition of normal doesn’t include overwhelming diagnoses. No one thing is normal for everything.
What is a normal life?
What is a normal life? It’s a question with many viewpoints, some may argue what a normal life actually is. Death, disease, plague, sickness and fatigue – the normal life of a doctor. Bombs, gunfire, artillery, explosions and loss – the normal life of a soldier. Crying, sick nights, work, family and managing the household – the normal life of a mother. The concept of normal is about as solid as the concept of ‘love’ – misunderstood, complex and varies from person to person. Ideas of normal life varies between cultures. Personally, my normal life in the U.K. was going to sixth form, studying, taking part in sport and spending time with friends – but my perception pf normal life changed when I visited Pakistan in the winter of 2018. I enjoyed the first half of my trip, making little journeys to the local markets and enjoying the scenic drives – that is until my grandmother became comatose and soon passed away, and my mother falling victim to gas poisoning in the next few days: it was then, when trips to the hospital, when nail-biting consultations in front of underqualified doctors in a third-world country became my normal life. Then I came back to the UK, with my mother who’s unwell, and I took up the responsibility of ensuring she took the right medications, right dosages at the correct time; this became my normal life. Normal is a dynamic, fluid – not concrete; a simple traumatic event or a gigantic positive can change what normal is. A person’s ‘normal’ can change in an instant, whether that be from the loss of a close family member to falling victim to a debilitating disease or even a condition such as multiple sclerosis – or on the other end of the spectrum, marriage, bringing someone into your life and vowing to spend eternity with them is a big commitment which changes the course of a person’s entire life.
Normal is an arbitrary term. An abstract concept. In the English Oxford Living Dictionaries, ‘normal’ is defined as: Conforming to a standard; usual, typical, or expected or (for a person) free from physical or mental disorders[footnoteRef:2]. According to this definition, it is impossible for someone with multiple sclerosis to live a normal life, as they are most certainly not free from a physical disorder. ‘Normal’ can't mean and must not mean ‘what we see all the time’ or ‘what we see the most of.’ It must have a different meaning from that for it to mean anything of value to right-thinking people[footnoteRef:3]. Furthermore, what is the standard that must be conformed to? Who is it set by? Who decides that it’s the standard? Society follows those in power, the media, celebrities, professionals and high earners; the norms of the 1% automatically apply to your average Joe. However, many people (including myself), would thoroughly disagree with this logic – in my eyes, a disease does not get to define whether you can live normally, disease does not determine lifestyle and one social group’s normalities and sociality’s should not be imposed on everyone. Moreover, it is impossible to evaluate what is classified as normal without investigating what is classified as abnormal, as abnormality is the basis for which normalcy is defined. An author by the name of Vincent O’ Sullivan profoundly said: [2: Oxford English Dictionaries, Normal definition (23/01/19), https://en.oxforddictionaries.com/definition/normal ] [3: Eric R. Maisel Ph.D., 2011, What Do We Mean by 'Normal'?, Psychology Today, 10/03/2019, https://www.psychologytoday.com/gb/blog/rethinking-mental-health/201111/what-do-we-mean-normal]
“If you are different from the rest of the flock, they bite you”[footnoteRef:4] [4: The Next Room, Vincent O’ Sullivan, Tragara Press Edinburgh, 1983]
Conditions such as MS that affect a mere 3.7% of British citizens are quite usually unheard of, therefore society is ready to ‘bite’ at these supposedly unusual people and consequently alienate them for not being ‘normal’, not conforming to their definitions of the term.
Abnormality
Abnormality, like normality, is also an arbitrary term. From a psychological standpoint, someone is classified as abnormal if they deviate from the normalities of their specific societies or fail to function adequately on a day to day basis. Abnormality and normality are so foreign as concepts that there’s a whole branch of psychology known as ‘abnormal psychology’ – to study abnormality often in clinical regards. In my own culture, a person is believed to be abnormal if they aren’t married by a certain age, self-sufficient (if you’re a man) and a skilled housewife (if you’re a woman); however, this an example of cultures in the Middle East. On the other hand, in a western country such as the United States or the United Kingdom, it is quite normal to not be in a relationship, let alone a marriage or civil partnership, it’s quite usual for men to be dependent on people and definitely usual for women to be confident and outgoing. There is a very fine line between abnormality and social normality. Thus, throughout the course of this essay, I will attempt to establish what normality (and inversely, abnormality) is.
What is Multiple Sclerosis?
Humans are interesting organisms; so complex, yet so fragile. Extremely intelligent yet inhibited by their own biology. The human body contains trillions of cells, the human brain alone containing over 86 billion nerve cells. Each nerve cell travelling at a speed of approximately 120 m/s (meters per second)[footnoteRef:5], these cells are of paramount importance to human life, enabling sensitivity, reflex actions and the communication between parts of the brain and the rest of the body. To understand multiple sclerosis, one must first be able to comprehend the neuron. [5: Eric H. Chudler, Neuroscience for Kids, https://faculty.washington.edu/chudler/what.html]
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[image: Image result for neuron][footnoteRef:6] The figure displays a basic neuron and its parts. The dendrites carry electrical signals through the cell body to the axon terminals which carry the impulse out of the cell body by releasing chemicals called neurotransmitters – like this information is transferred from one nerve cell to another. The myelin sheath is a fatty tissue which surrounds the axons, thus insulting against the loss of electric current in the nerve cells. [6: Simple English Wikipedia (2018), Neuron, https://simple.wikipedia.org/wiki/Neuron]
Figure
Multiple Sclerosis (MS) is an auto-immune disease, where the body’s own nervous system attacks the myelin sheaths of nerve cells – this means that nerve cells can’t send and receive messages as effectively as they usually would – resulting in a range of symptoms.
Relapsing-Remitting MS
Relapsing-Remitting MS is when patients experience episodes of symptoms, either new or worsening, in periods known as relapses. Over 80% of people diagnosed with MS are diagnosed with relapsing-remitting MS[footnoteRef:7]. Relapses mostly occur without warning and are known to be provoked by periods of stress or illness. Symptoms often worse over days, weeks and months and improve over a similar period of time. Relapse symptoms may fade slowly, with or without targeted treatment or therapies – however some symptoms could persist. The time that passes between relapse attacks are known as periods of ‘remission’ – which can potentially last for years at a time. [7: Paraphrased; NHS Choices (2016), Multiple Sclerosis, https://www.nhs.uk/conditions/multiple-sclerosis/]
Primary Progressive MS
In the primary progressive form of multiple sclerosis, patients begin accumulating symptoms with no periods of remission. 10% of people are diagnosed with this form of multiple sclerosis[footnoteRef:8] and although there are no periods of remission – there are periods where condition appears to stabilise. [8: NHS Choices (2016), Multiple Sclerosis, https://www.nhs.uk/conditions/multiple-sclerosis/]
Multiple Sclerosis in the United Kingdom
There is currently no accurate data on the exact number of people with MS in the UK. A study by McKenzie et al at the University of Dundee worked out a figure based on coding in GP records. This gave a figure of approximately 127,000 people with MS in the UK in 2010. The study also found that the number of people with MS in the UK is growing by around 2.4% per year, due to people with MS living longer[footnoteRef:9]. [9: MS Society (2018), Prevalence and incidence of multiple sclerosis, https://www.mstrust.org.uk/a-z/prevalence-and-incidence-multiple-sclerosis] [10: Based on statistics obtained from: Multiple Sclerosis Trust (2010), Prevalence and incidence of multiple sclerosis, https://www.mstrust.org.uk/a-z/prevalence-and-incidence-multiple-sclerosis]
Symptoms and Struggles
Have you ever suffered from a cold? Seasonal allergies? Bacterial or viral infections? It’s a part of life, pathogens – almost a thousandth the size of a millimetre capable of rendering a person bedridden for days, weeks and sometimes months. Aches, pains, headaches and migraines, yet all your bodily systems completely intact. Now imagine losing a part of yourself, a system essential for the processes you carry out every day of your life – the nervous system. Multiple sclerosis patients experience many symptoms and struggles in their daily life such as, but not limited to:
- Fatigue
- Problems with vision
- Mobility problems
- Depression and anxiety
Waking up, every morning – some mornings being able to operate perfectly, others, not being able to come out of bed yourself. Some mornings, using your sense of vision – a sense taken for granted – other mornings waking up with blurry vision; however, that’s only the physical side of it. Depression and mental health take its own toll as well. Multiple sclerosis patients experience these struggles, and many more, on a regular basis.
Interviews with MS Patients
In order to truly understand the extent of someone’s suffering, it has to be put into terms one can understand and internalise for themselves. An interview with an MS patient by the name of Trevis Gleason really helped my understanding of the sort of struggles he faces with his multiple sclerosis when he was asked ‘In what order would you prefer your symptoms to be resolved’, Mr Gleason simply replied with ‘You know, that’s kind of like the question, “What would you change in the world?” My answer to that is “poverty.” Without abject poverty in the world, so many other problems could be solved. As to MS, I think I could “do” so much more for my MS if I could resolve my issues with fatigue’[footnoteRef:11]. From my understanding, Trevis Gleason feels as if his fatigue is disabling him from taking steps to further [11: Trevis Gleason, 2009, An Interview with Trevis Gleason About his Multiple Sclerosis, Everyday Health, 10/03/2019, https://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/an-interview-with-trevis-gleason-about-his-multiple-sclerosis/]
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