Coping with chronic illness
- a Dr’s story
Dr. Ahmed Adam
Published in 2009
Adversity is the diamond dust with which Heaven polishes its jewels
I am 49 years old. My illness is now in its 3rd year. I am a medical doctor, hospital administrator, and life coach/peak performance facilitator. I have not able to work a single day since I became sick. This is my story. My keyboard is my piano, and my book is the song of my heart. Perhaps this is my swan song.
Why this book
My main purpose for writing this book is for me to feel better. Writing is my catharsis. It is a healing therapy for my mind, body, and soul as I sail through the turbulent storms of my illness. But besides the therapeutic benefits of writing, I would like to share my experiences with you, so that if you have an illness or if you are caring for someone who has an illness, then hopefully you can get some tips or sympathetic understanding from me. I know exactly what you are going through. I am living with a chronic illness. Only those people who are chronically ill (and their families) know the daily adversities that they face and the challenges that they have to overcome. The biggest challenge is the battle that rages inside.
In spite of illness, in spite even of the arch-enemy sorrow, one can remain alive long past the usual date of disintegration if one is unafraid of change, insatiable in intellectual curiosity, interested in big things, and happy in small ways.
- Edith Wharton (1862-1937)
I am motivated by a sense of urgency to share knowledge. I have always been the type of person who is passionately goal-orientated and focussed. I spent a great deal of time on my first book. However, my illness has made me acutely aware that I no longer have the luxury of a lot of time’ and ‘a lot of health’. So, the time to write is ‘now’ and not ‘one day.’ In this publication, I would like to speak to you from my heart. So, my dear reader, forgive me my errors or mistakes but take the essence of any life lessons that I share with you and apply them in your own life. Never take life for granted and never assume that “it can never happen to me.”
Hope, purpose, and determination are not merely mental states. They have electrochemical connections that affect the immune system
- Norman Cousin
Every human being is unique. There is no one else in the world like you. I am sure that you have had your share of obstacles in life – which are probably much worse than mine. Life is about adversity. But the sweetness of the adversity comes with relief. And with every difficulty, there is a relief.
No man knows till he has suffered from the night, how sweet and dear to his heart and eye the morning can be
- Bram Stoker
Before Medical School
Prior to my studies at Medical School, I obtained three other degrees on the Wits Main Campus in Science. Some of my subjects ranged from Botany and Zoology to Human Genetics, Calculus, Statistics, Anatomy, Physiology, Astronomy, Comparative Anatomy, and Paleo-Anthropology. During my advanced Postgraduate Honours year in Anatomy, I learned the fine art & skill of writing Scientific publications that are acceptable for journal publication. Perhaps I should have spent my career within the corridors of a University – I derive a great deal of comfort from huge ornate libraries and lecture rooms. I fantasized about getting lost in the British National Library (reputed to be the world’s largest research library) – it contains a treasure-house of more than 25 million books and more than 120 million journals, newspaper, and magazine publications.
Lessons from medical school
The popular TV series, Grey’s Anatomy, brought back fond memories of my own years at medical school. Another TV series that I enjoy watching is Dr. House – he reminds me of some of my Professors at Medical School – brilliant academics. While the pilot episode of Grey’s Anatomy was on the air, I brought out my own Gray’s Anatomy Textbook which I had kept all those years on my bookshelf, dated 1982 (the year in which I bought it). It brought back a flood of memories of dissecting a cadaver (from the skin to bone and from head to toe) during my 2nd year at Medical School. As I enter the autumn of my life, memories are all that remain of my strong youth. But even though my physical body is aging chronologically, I am joyful that my mind and soul are in the throes of a brilliantly warm summer.
It is not the mountains that we conquer, but ourselves
- Sir Edmund Hillary
From an early age, I loved collecting inspirational quotes and poems. One of my earliest favorite poems was the ‘Desiderata.’ These quotations and poems kept me strong through the years of growing up. I am still growing. I am still collecting quotations. I have thousands in my personal collection and I hope to share some of these gems with you. I have tried as far as possible to cross-check the source of the quotes that I use (it is now much easier with the internet). But thirty years ago, before the popular arrival of the PC & laptop, I often scribbled inspirational quotes from notice boards into my lecture notes, while doing my ward rounds. Doctors in training have an opportunity to visit many hospitals and centers of learning and I have used these experiences to widen my own horizons. I also had a fond love for libraries as mentioned earlier. I would often go to the archive collection on the 1st floor of the Old Medical School which was located near the Hillbrow Hospital in the 1980s. Most of the students studied on the ground floor. I was one of the few who enjoyed running upstairs and spending many hours browsing through the dusty volumes of the medical scholars & scientists in bygone history. I was particularly moved by the life and times of Sir William Osler and I wrote these quotes with my calligraphy pen in 1982:
To study the phenomenon of disease without books is to sail an uncharted sea, while to study books without patients is not to go to sea at all
- Sir William Osler
The above quotation perfectly encapsulates the universal principle that in many branches of learning, it is the combination of knowledge plus practice that yields an effective and efficient outcome. Knowledge on its own is empty, while action without knowledge is highly dangerous. A good doctor has a combination of knowledge plus practice and then acts upon that finely developed skill and talent.
The following early quotation is a universal message that resounds at Medical Schools throughout the world:
The good physician treats the disease; the great physician treats the patient who has the disease
- Sir William Osler
I have used the above principle throughout my life. In addition, this principle yielded an unexpected honor as described in the following story:
I was still a 4th-year student when we had to perform a certain minimum number of obstetric deliveries. I was scared out of my wits and so was the mother (this was her first pregnancy and she had none of her family with her). All I did was to show a bit of kindness to her in the provincial hospital, where the level of care was not always the best. I sat by her bed the entire night until she gave birth at dawn. Fortunately, there were no complications in the delivery and as I turned to leave after suturing the episiotomy, she called me back: “Doctor, is it OK if I name my son after you?” I was stunned. I had done nothing special. I was not yet a doctor. The nurses and matrons in the Obstetrics ward knew more about delivering babies than I did. All that I did differently was to show a little bit of kindness to a single mother who was panic-stricken. This young mother was so grateful that she named her firstborn son “Adam.”
We are all products of our environment. I learned a great deal, directly and indirectly from my many teachers during my formative years at university. Each Professor had his or her own unique personality and intellectual acumen and it was always nice to learn from the best of the best. Names such as Professor Philip Tobias, Professor Harry Seftel, Professor Kew, Professor Mitchel, and so many others have inspired generations of doctors. Throughout my studies, they kept reminding us that the patient is not a number. The patient is not a statistic. The patient is not a stranger. The patient is not a disease. First and foremost, a patient is a human being. And that, my dear reader, is such a powerful idea that it can change your life. You don’t have to be a doctor to respect another person. The world would be a far better place if every person treats everyone else, first and foremost, as a human being. I am a human. You, dear reader, are also a human. Once we understand this basic principle, then we transcend the poisons in our brain: the poisons of race, the poisons of ethnicity, the poisons of culture, the poisons of social status, the poisons of bias & prejudice, and the poisons of titles.
Treat every human being with respect
I also learned very quickly that when you are in the surgical pit (trauma center) at the Baragwanath Hospital on a Saturday night, then there is not much time or tolerance for your seniors to teach you, simply because of the volume of patients; some patients would come with multiple stab wounds or gunshot injuries or various other problems that needed immediate attention. So the policy was simple:
See one; do one, teach one; the 1st drip is difficult; the 1st suture is difficult; the 1st plaster cast is difficult; the 1st IC (inter-costal) chest drain is difficult; but like anything in life, I soon learned that practice makes perfect. Sometimes you have no choice but to jump into the deep end and start swimming. When something becomes easy with practice, it becomes more fun.
Practice makes perfect. This applies to everything in life and is the principle that I share with delegates at my Whole Brain Peak-Performance Workshops.
However, not everything is fun, no matter how much you do it. But you have to just take the good with the bad. For example, I loved suturing wounds. But it became very difficult to suture a patient who came in drunk and bleeding: there is just something really, really nauseating of working for an hour trying to suture an un-cooperative patient in close proximity when you are overwhelmed by a cacophony of smells of blood, plus bad breath, plus alcohol, plus vomit, plus urine (drunk patients usually come in with soiled clothing). Some patients are so inebriated that the smell of alcohol comes through their bleeding wounds.
Then there were the patients who came running into the E. R. with their children in their arms. The child had smashed through the windscreen of the motorcar while sitting in the lap of the parent. The child’s face and head are crushed and bleeding. Don’t these parents ever hear of ‘buckle-up?’
If you care for someone, please tell them to wear their seatbelt
Another really eventful experience that I had was when I first visited the State Coroner’s office and we had to do an autopsy. The sight, smell, and atmosphere of cutting open a 20-year-old motorcyclist were too much for me to bear. I walked out and vomited in the garden. The smell of death was just too much for me to handle. This was a totally different experience from dissecting a formalin-soaked 70-year-old cadaver in 2nd year. In this case, this was a healthy 20-year-old, who just a few hours ago was riding her motorcycle. She did not wear a helmet – it was the freedom of the wind in her hair. Now she lay dead on a cold marble slab. No illness. No disease. No warning. Death came knocking at her door in the prime of her life.
Don’t take life for granted. Life is a gift. Honor it and treasure it. Don’t take health for granted. Honor it and treasure it.
Happiness lies, first of all, in health
- George William Curtis
Those who think they have no time for bodily exercise will sooner or later have to find time for illness
- Edward Stanley (1826-1893)
I also learned that doctors have it tough; very tough. To be a doctor you have to study, memorize and understand thousands and thousands of pages of tongue-twisting terms and fancy pharmacological formulas and also spend 24-40 hour shifts ‘on call’ (emergency shifts). You find little time to socialize. By the time that a doctor has qualified, it translates into an investment of 12 years at school plus another 8 years of intensive study at University; if anyone wants to be a specialist, then it becomes 12 years at school and another 12 years at University (24 years of study). A typical medical student graduates with a brave smile, having made the ultimate ‘survival course.’ The long years of study mean that many doctors qualify with a lot of student loans and unpaid debt. So contrary to popular myth, many doctors are not wealthy: the typical newly qualified doctor is battered, bruised, and bankrupt by the time this brave soul limps out of the Graduation Ceremony, delicately clutching the degree certificate in trembling hands.
Success is not measured by what you accomplish but by the opposition you have encountered, and the courage with which you have maintained the struggle against overwhelming odds
- Orison Swett Marden
Lessons after medical school
After finishing my medical studies, I gained valuable life lessons from the following:
- as a doctor in private medical practice (both city and rural life)
- as a Hospital Administrator of a 200-bed Private Hospital with 6 operating theatres and a 24 bed ICU
- as a delegate in hundreds of seminars & conferences on a wide range of topics conducted by experts such as Edward de Bono, Tony Buzan, Tom Peters, Dr. Kobus Neethling, Mervyn Niland, and many others
- as a peak performance trainer where I conducted seminars and workshops on the Human Brain to school children, teachers, parents, business, and leaders.
- as a presenter of programs on iTV (spiritual programs)
- as a public speaker and MC at various functions
- as an author
- as an anti-war activist with the Human Rights Foundation
- as a Cyber-counsellor (on marriage & family values)
My tenure at the Hospital was for a decade from 1996 to 2006 (I stopped working when illness struck). It was an excellent learning opportunity for me. In private practice, the focus was one-on-one with the patient. In contrast, in the Hospital environment, I was now involved in strategic planning, marketing, brainstorming workshops, staff development, TQM (total quality management), and many other diverse areas that considerably expanded my horizons. I was closely involved in developing a Vision and Mission Statement for the Company which is a critical requirement for advanced strategic planning of any business. In addition, I continuously emphasized the importance of ongoing incremental quality improvements through the Kaizen Philosophy, by involving every member of staff from the “Boardroom to the Storeroom”. The company’s performance was finely controlled by ongoing measurement and feedback on KPIs (key performance indicators), CSF’s (critical success factors), and the Balanced Scorecard. Most of our strategic & brainstorming sessions were conducted in the Boardroom, and this became my favorite environment for peak performance.
I have always been very conscious of my health, diet, and fitness level. The decade at the Hospital was a great source of pleasure to me since it offered me a unique opportunity to work simultaneously for “this world” and the “next world.” Namely, I could harness my medical knowledge while at the same time develop my spirituality by hosting various programs on iTV (the studios are located in the same building as the Hospital). My routine would be to park my car on the 1st floor and then walk 7 floors (as a form of exercise) to my office on the 8th floor. I would then commence ward rounds from the 11th floor of the Hospital and finally complete them on the Ground floor. The rest of the day would be spent in various meetings with 25 departmental heads in intensive problem-solving sessions relating to day-to-day management. Often, the day would extend into the evening, because this would be the most convenient time to have meetings with the Hospital Doctors and such sessions would be conducted between 6 pm-9 pm. Sessions with the Adult ICU and Neonatal ICU staff would typically be held at 6:30 am just prior to the handover ward round.
I had long-term and short-term goals, and in addition to the above, I was also involved in many voluntary organizations. It was the time in my life between 35-45 years, where I was at peak performance and fitness. It is almost a cliché that when you are riding the crest of a wave, then the unexpected happens.
Lessons from my illness
I do not want to burden you with my long story of woe, but I will share with you some of the relevant aspects which may serve as ‘life lessons.’ The lessons that I have learned are both from the perspective of a patient as well as from a doctor as well as from a family. A list of my various ailments is listed in the table at the end of the book.
My life came to a grinding halt one fine morning, when I awoke at 2 am with severe, non-stop pain down my left shoulder, numbness, pins and needles, general body fasciculation (muscle twitching), and semi-paralysis of the left hand. X-rays and MRI scans showed a problem in my cervical (neck) spine – it was a spontaneous collapse of three vertebrae with no history of trauma. The 1st neurosurgeon gave me an ominous warning: ‘if you don’t have this operation immediately, then you will be paralyzed in a wheelchair within one month.’ He was kind enough to explain to me the anatomical and physiological problems related to my condition. However, even though I am a doctor, I drove home in a state of numbness. This cannot be happening to me. I have so many plans, I have tons of work at the office, I have so many goals, etc. I don’t have time for an operation. It must be a mistake. This sense of denial started me off on a long quest to find an answer. That is the way that my mind works – I have to understand things: what happened, why it happened, and what can be done about it? If I don’t get satisfactory answers, I keep searching. In addition, to avoid any subjective sense of the ‘medical student syndrome’ I made sure, that as far as possible, I had objective evidence of my pathologies in the form of independent practitioners, blood tests, x-rays, CT scans, MRI scans, PET scan, and Doppler Vascular studies. In essence:
- I went for several neurosurgical opinions
- I decided to initially try the ‘conservative’ (non-surgical) route; this meant that I used traction, stiff collar, soft collar, massage, heat therapy, TENS (transcutaneous electrical nerve stimulation), and EMS (electrical muscle stimulation)
- Meanwhile, over the next few months, some of my blood results started revealing other underlying causes that would explain the spinal pathology. In addition, other complications started developing at the same time.
- A mal-absorption syndrome caused very low levels of Vit D (which is essential for bone mineralization) leading to a condition called Osteomalacia (soft bones); this made a surgical option much riskier because numerous studies showed that patients with Osteomalacia had a failed fusion within a few weeks of the procedure
- In addition, micro-emboli (clots) in the brain led to pituitary infarction
- The most likely trigger could possibly be heavy metal intoxication (lead, nickel, cobalt, mercury) from the eroding bullet
- Chronic daily pain; difficulty in sleeping
- Chronic fatigue & muscle weakness
- Tendency to fall down (I use a cane, walker, or crutches)
- I cannot walk more than 10-20 meters; for longer distances, I use a wheelchair or make frequent rest stops
- I am no longer able to drive a car; not only am I risk to myself, but more importantly, I should not pose a danger to other road users or kids on the street (my reflexes are very slow so I cannot respond quickly in an emergency)
- I am no longer able to work, or present workshops or attend seminars or walk on the beach at sunrise to collect my favorite sea-shells while on holiday
- I have great difficulty in using a mouse and keyboard (my fine motor control is affected and even ‘double-clicking’ a mouse is sometimes very frustrating)
- The micro-brain clots (TIA – transient ischaemic attacks) have produced brief episodes of TGA (transient global amnesia) with retrograde and anterograde amnesia. The memory loss and impaired cognitive functions mean that I am no longer as sharp as I used to be.
Life does not accommodate you – it shatters you – it is meant to shatter you; every seed destroys its container or else there would be no fruit; every caterpillar shatters its cocoon or else there would be no butterflies
How do I cope?
- For me, knowledge is freedom. So I studied, researched, and consulted various experts in their respective fields, both locally, nationally, and internationally, to get a clearer understanding of my pathology. In some ways, it was much easier for me to grasp the complexity of my problems because I already have a medical background. Being a doctor who is also a patient can be a blessing and a burden. It is a blessing because you know exactly what is going on. It is a burden because you know exactly what is going on. Sometimes, ignorance is bliss. Sometimes, not always.
- I found that a 2nd or 3rd opinion is always a good idea. It is important to have a ‘primary’ Dr, but whenever you are faced with a difficult problem then please get a 2nd I discovered that the doctors that I visited had different viewpoints. So I learned a lot and this helped me much better in coping with my illness.
- I regarded myself as a patient outside myself – in this way, I could more objectively take an arm’s length assessment of my condition. In addition, I relied on blood tests and the latest technological investigations to give me an accurate, independent, scientific validation of what is going on. I would then brainstorm how to solve this problem as if a patient came to see me. I often scribbled on flip-charts the various pros and cons, treatment options, and differential diagnosis as if I were discussing a patient in front of an audience. If I did not do this, then my mind would start playing games where my emotional subjective element would become intertwined with the objective scientific/medical findings.
- I had to find ways to control my frustration. For example, in the past, I could easily type one page in five minutes, but in my current condition it would take me an hour; sometimes longer. Another example is that when I was well, I could easily run up seven flights of steps, while now I could only manage a few steps at a time. Or I would watch a TV program on camping or outdoors or travel and I would look with the forlorn yearning to be able to walk on the beach or be able to perform my rituals on my spiritual pilgrimage to Arabia like I used to do in the past. But I knew that the more that I dwelled on these thoughts, the more I would easily get into a negative spiral of regret. So the way to solve this problem, and to manage my frustration was as follows: I stopped comparing myself to other people and I stopped comparing myself to how fit I was in the past. I adopted an ‘attitude of gratitude.’ This means that I would give thanks for everything that I take for granted. And now when I compare myself to others, I always remind myself that there is always someone worse off than me, someone who is in more pain and in more difficulty and in more hardship. So who am I to complain or to be frustrated?
- My illness is a great blessing. Without the pain and difficulty, I would still have been running on the treadmill of life like a little hamster on a little wheel, using up lots of energy but going nowhere. Currently, I cannot do many things physically, and on many days I am in agonizing pain and fatigue as if there is a heavy-duty electric magnet pulling me into the ground. But despite my handicap, I take solace from the billboard banner that my son saw on the highway: Disability does not mean inability. Instead of focusing on what I cannot do, I focus on what I can do; now when I take a few steps, it is a time to give thanks; when I can write a few lines, it is a time to give thanks; when I go to the toilet with no pain, I give thanks; now when I get 2-3 hours of sleep, I give thanks. Blessings are all around me; they have been there all the time – I just have to open my eyes and see.
Search for the seed of good in every adversity. Master that principle and you will own a precious shield that will guard you well through all the darkest valleys you must traverse. Stars may be seen from the bottom of a deep well when they cannot be discerned from the mountain-top. So will you learn things in adversity that you would never have discovered without trouble? There is always a seed of good. Find it and prosper
- Og Mandino (1923-1996)
- Instead of focussing on my physical limitations, I now focus on my strengths There are two areas of my life that I can still continue to strengthen and develop: the first is my intellect and the second is my spiritual self. This is indeed a beautiful gift and a transcendental insight. Hence, my current adversity has given me a wonderful opportunity to contemplate, ponder and reflect.
Toughness is in the soul and spirit, not in muscles
- Alex Karras
- What do I ponder over? A lot of things. I ponder mainly on adversity. Not my own adversity, but the adversity of others. My own suffering has made me intensely sensitive to the suffering of others. There are millions of people suffering various forms of hardships, poverty, homelessness, illness, trauma, oppression, and warfare. I often avoid watching the TV news or reading the newspaper for weeks or months at a time because I get very distressed to see images of suffering, crime, senseless murders, killings, and injustice. The world is in serious and urgent need of honest, compassionate, moral, just, and ethical leadership.
- An additional coping mechanism that I have done is to redesign my entire workspace. Since I cannot sit for long in a chair, I spend most of my time on a recliner couch. My laptop is connected to a large plasma screen so that it is in line with my sight. A carpenter built for me a swivel, rotating stand that holds my books in an upright position (because I have difficulty holding books). In addition, I purchased an Anglepoise Magnifying Lamp to aid my reading to compensate for my rapidly deteriorating vision. Finally, I have a permanent heating pad on my spine and I use a hand massager to ensure circulation in various parts of my body (and thereby also reduce the likelihood of clots)
The gem cannot be polished without friction
- Confucius, Chinese Philosopher
- A support system is very, very important. I could not have coped without the magnificent help, support, understanding, and love from my wife and children. They have endured my frustrations and setbacks and they have encouraged and supported me throughout my ongoing illness. They have truly gone the extra mile way beyond my expectations. I used to be the ‘strong-man of the family, but I now rely on them for so many things – even to the extent to open the bottle caps on my mineral water. In addition, my brother has been a wonderful source of ongoing support to me and my family during my extended ordeal.
- I have also received a great deal of support from other family members, friends, acquaintances, work colleagues, SMS messages, and regular emails. I have been negligent and often too ill to respond in kind, but your thoughts have meant a great deal to me
- There is absolutely no doubt that religion has been a source of great strength, relief, tranquillity, and spiritual comfort for me. There is great healing and blessing in prayer. I am currently writing a parallel book entitled “Shi’fa – Sab’r and Shukr”, which is a story of my spiritual journey into my illness.
Do not despise your situation; in it, you must act, suffer and conquer. From every point on earth, we are equally near to Heaven and to the Infinite
- Henri Amiel 1821-1881, Philosopher, Writer
When we are flat on our backs there is no way to look but up
- Roger W. Babson
General tips for coping
- Remember, that every person is unique. Your illness is yours. No one else has your illness. Even if 10 people have Diabetes, each one is different because each human being is unique (different environment, different appetites, different stress levels, different personalities, different overall health status, etc); so the treatment that your doctor gives you, is tailor-made for you taking into account your history, age, gender, and other underlying medical conditions. That is why it is important not to self-medicate by searching the internet, but rather get a professional opinion.
Variability is the law of life; and as no two faces are the same, so no two bodies are alike, and no two individuals react alike and behave alike under the abnormal conditions which we know as disease
- Sir William Osler
- Every person responds differently to a treatment. Some people respond quickly, while others take longer. In some cases, if you take the wrong treatment you can get worse. For example, in my case, treatment by a chiro practitioner for my spine is absolutely contra-indicated no matter how much some people may praise it. In a patient with an unstable spine, soft bones, atrophied muscles, and weak ligaments, any form of spinal manipulation is a recipe for disaster.
- Many people will give you advice and suggestions on different remedies and alternate forms of therapy that you can try. Some people will force you to try their ‘miracle cure.’ Many times you will be left confused and distressed. Some homemade cures may work, and some won’t.
- Always remember that when you are weak and desperate for help, then you will always find charlatans who take advantage of your desperate situation: they promise you a ‘cure’ but they are only interested in your money. Stay away from them. Rule of thumb for illnesses: go to a qualified professional for professional help. I am always distressed by ads and pamphlets wherein some self-proclaimed hypocritical experts promise miracle cures for cancer, AIDS, unemployment, etc by taking advantage of the poor, the sick, the ignorant, and the desperate.
- You will go through a whole range of emotions and you have to be mentally tough to cope. You will need some mechanisms and tools to assist you with chronic illness.
- I used a multi-prong approach to my situation and used conventional medicine as well as alternative forms of therapy. However, I have been very careful and selective of the alternatives. That is just my nature. The most beneficial one for me has been the products from the Ibn Sina Institute of Tibb, (founded by the Bhika Family Trust) whose product range is based on Prophetic healing.
- During our final years of training at medical school, we were given lectures on ‘Death and Dying’ and how to cope. Every medical student and doctor has seen death. Many of our lectures were based on the principles by Dr. Elizabeth Kubler-Ross on the phases of grief. When a person dies, then the close family members or friends go through some of the following stages of grief.
(i) Denial – it cannot be true. I don’t believe that he (she) is dead. There is shock and numbness.
(ii) Anger & resentment– why did this happen? Why didn’t the police do anything? Why such a senseless murder? etc
(iv) Blame – blame others for the death; blame yourself for the death
(v) Acceptance - Finally come to terms with the death of a close friend or family. Studies have shown that people with strong religious beliefs, reach this stage much quicker.
Different people experience these phases differently.
Acceptance of what happened is the first step to overcoming the consequence of any misfortune- William James
Grief that finds no vent in tears makes other organs weep
- Dr. Henry Maudsley
- I have found that my illness is also a minor sub-category of grief. It is the loss of a state of health that I once had, and I too went through the phases of emotional flux. I have adapted the above phases of grief to fit in with illness or adversity in general. I will briefly discuss each of these phases so that you can identify with the feeling. Please note that the following is a general list and not everyone goes through these emotional states.
- Denial: some patients cannot accept the shock of sudden news of a severe illness. They become numb. It may take some time for the news to sink in. Many patients don’t understand the fancy technical terms.
- Anger: some patients become angry at the news because the news has come at an inappropriate time. Or perhaps the anger is there because it was ‘missed’ by other doctors.
- Frustration: in chronic illness, the patient becomes progressively frustrated and irritable because of the handicap and inability to cope with simple activities. The patient often recalls past events when simple daily tasks like walking or gym or driving were taken for granted. Chronic pain and fatigue exacerbate irritability. Sometimes the frustration accumulates when no relief is obtained despite numerous doctor visits, blood tests, and hospital admissions
- Blame: some patients blame others for their problem (e.g. the hospital caused my problem or the doctor caused my problem or my friend was driving too fast etc). In other cases, the patients blame themselves: maybe I did something wrong. Maybe I should have eaten more healthy foods or exercised or stopped smoking etc
- Acceptance: this is the stage when the patient finally accepts the full impact of the illness. The patient now understands that this illness won’t go away in a few weeks, but that the illness will be a part of life. In this case, the patient adapts their lifestyle to accommodate their illness. The illness is no longer a passing phase, but has come to stay for a long time and won’t go away. The only way to go forward is to be a gracious host to this unexpected guest.
When suffering knocks at your door and you say there is no seat for him, he tells you not to worry because he has brought his own stool
- Chinua Achebe, writer
- Pain is not nice. It is a feeling of discomfort that ranges in intensity from mild, to moderate, to intense. If pain affects your functionality, then you have to try various combinations of techniques that are suitable for you in your special circumstance. For some people, simple medications from their doctors are sufficient. For others, you may have to try a variety of methods which may include medications, massage, hot baths, TENS, EMS, acupuncture, and Tai-Chi. Some activities such as exercise, acupuncture, and massage release endorphins in your brain. Endorphins are powerful, natural pain killers. In some cases, relief does not come easily.
- Some people find a great deal of relief from pets. As long as you don’t have any allergies, then the therapeutic benefit from pets can be very beneficial
- Try and incorporate some hobbies to pass the time. The loneliest feeling is to stare at empty walls day in and day out.
- If your illness is not very debilitating, then it can be very therapeutic to render volunteer service to others e.g. soup kitchens to feed the poor and homeless or you can join an organization. There are many organizations that would welcome your services and help
- Finally, don’t get discouraged when you hear the many stories of other people who have recovered from their serious illnesses much quicker than you. As I mentioned before, each person is different and each person takes a different time frame to recover. So instead of getting discouraged or feel worthless and thereby damage your self-esteem, rather use their examples as lamps of hope that should drive you to keep trying and never giving up.
- Try and incorporate some humor and laughter into your life.
It may be possible to incorporate laugher into daily activities, just as is done with other heart-healthy activities, such as taking the stairs instead of the elevator. The recommendation for a healthy heart may one day be exercise, eat right and laugh a few times a day
- Michael Miller, MD
- Make a list of affirmations that you can recite on a regular basis. Affirmations are positive statements by which you program your brain to motivate yourself. Some people incorporate short segments of prayer as an affirmation for their healing.
Day by day, in every way, I am getting better and better
- Emile Coué
Tips for caregivers
- A caregiver is the main person who is responsible for looking after the needs of the chronically ill patient.
- Often, a lot of attention is focused on the patient, but many people ignore the caregiver.
- If a husband becomes sick, then the wife takes on a greater burden of maintaining a steady home. If the wife becomes ill, then the husband takes on the greater burden of maintaining the house. If a child becomes sick, then both parents become more intensely involved.
- In any illness, the impact is on the entire family. Simple things like taking the kids to school or dental visits or holidays or shopping or attending social functions, weddings, or funerals are no longer easy and automatic. They become events that take on new meaning, planning, difficulty, and adjustments for everyone.
- The caregiver has an important role to play. It is therefore very important for the caregiver to look after themselves and ensure a healthy balance in their personal life to avoid stress and burnout. Caregivers should therefore have regular breaks or rest sessions and should ask for help when they can no longer cope. If you can afford it, then try and get the daily chores of cooking and cleaning done by others, so that you have the energy to take care of your loved ones.
- If a patient is seriously ill, then home nursing or other mechanisms should be considered to ensure that the patient gets the optimal care, while the family can then harness their love for the sick patient. If the patient is sick and miserable and the caregivers are burnt-out and miserable then everyone loses. Some people can cope with a chronically ill patient for many years, while others give up in a few weeks. It is not easy for the caregiver.
- Finally, it is always important for the caregiver to talk to others in similar situations or talk to a friend. Self-help groups or close personal friends with a sympathetic ear can be very therapeutic. Sometimes caregivers feel that no one understands what they are going through in trying to cope with the care of the sick patient and coping with the worry of the associated illness.
Obstacles cannot crush me. Every obstacle strengthens me
- Leonardo da Vinci
Tips for Dr. Visits
When you or a family member has to visit a doctor, please take note of the following tips:
- Make sure that you confirm your appointment date well in advance. Some specialists can only give you an appointment a few weeks or even a few months later.
- Ensure that you take your ID, medical aid card, health insurance, or another form of payment with you. Some doctors refuse to accept your medical aid card because of long delays in payment. It is then your responsibility to pay the doctor directly and then claim your medical aid.
- Take with you any blood tests or x-rays related to your current condition.
- Try and get to the doctor's room on time (or earlier); some doctors will make you wait 10 minutes and then examine you for 2 hours, while others will make you wait for 2 hours and then examine you for 10 minutes. That is life. Get used to it. Many doctors have to attend to emergencies all the time. When you walk into an ICU and witness a doctor spending a few hours trying to resuscitate and stabilize a patient, then perhaps you can have some empathy for the doctor. Please don’t judge a doctor (or any person) unless you have walked a mile in their shoes and felt their pain.
- Make a list of questions at home that you want to ask your doctor. Take the list with you so that you do not forget. So when the doctor is busy examining you, then instead of joking about the traffic or the latest soccer results, you can ask specific questions that will be beneficial to you. However, please also be a bit considerate. Ask a few relevant questions – don’t make it into a game of 100 questions to find the ‘weakest link.’
- Many patients do internet searches on their illnesses. It is always a good idea to be fully knowledgeable about your illness so that you are in a better position to manage it better. Read and study as much as you can about your illness so that you can become an expert on it. But remember that you will be an expert on your own body, and what works for you may not necessarily help someone else. In addition, you should avoid the trap of being a hypochondriac or a cyberchondriac.
- A hypochondriac is someone who thinks that he/she has a very serious illness even though the doctor gives full assurance that everything is fine. Such a patient goes ‘doctor hopping from one doctor to the next in a state of panic: they genuinely believe that they are ill (as opposed to a malingerer who pretends to be ill every Monday morning).
- A cyberchondriac is someone who surfs the internet and then wrongly assumes that he/she is suffering from a dreaded disease because of similarity with their own symptoms. In this case, self-diagnosis is dangerous and misleading. If you are sick, first go to the doctor to get a professional diagnosis and then go read up on your disease, not the other way round. There are some patients who refuse to accept a professional medical diagnosis by quoting questionable websites from the internet. Such patients can be a frustrating obstacle to doctors who are trying to maintain a professional standard of care. Some websites may be deliberately biased or misleading to support a particular medical therapy, pharmaceutical drug, or an alternative unscientific and untested miracle cure. An anecdotal story from a chat line or pop-psychology from a TV celebrity is not the same as a professional journal article in a recognized scientific publication that has been approved by experts in their field.
- However, having given the picture of the over-cautious hypochondriac patients described above, I have to also caution you to avoid the other extreme of under-treatment. These are the patients who neglect their own health and refuse to see doctors or undergo regular check-ups until it is too late. Life Lesson: prevention is better than cure. If you have a family history of genetically transmitted diseases, then please make sure that you take the necessary precautions. For example, in medical school, we learned that in certain population groups, there is a greater tendency for some families to have a higher incidence of diabetes, heart diseases, and high cholesterol. In addition, if you are over the age of 40 years (in some cases over the age of 30 years) in most countries in the world, then you have to go for regular annual check-ups to exclude illnesses such as breast cancer, cervical cancer, prostate cancer, hypertension, cholesterol, diabetes, etc. If you are in an executive or senior position then you are at greater risk. The dangerous diseases are the ‘silent diseases.’ These are the ones that don’t give you any pain or warning (e.g. diabetes, obesity, hypertension, breast lump, colon cancer, cervical cancer, etc), but silently continue to damage the body. They are dangerous because patients ignore the seriousness of these diseases and don’t take the necessary medical and dietary precautions.
- Finally, you may well reach the stage when you are really tired of all the blood tests, and investigations and doctor visits, and medications, and nothing seems to be helping. Patient compliance becomes a major obstacle. Bear in mind that chronic illnesses have sometimes been described as medical failures or medical challenges because neither the patient nor the doctor experiences the gratification of a complete recovery. Doctors should bear this in mind when dealing with chronically ill patients. Even if they have heard it all before, the patient is there seeking relief. Please provide the relief with care and compassion, whether it is a sympathetic ear or an effective analgesic.
Lesson: many chronic illnesses cannot be cured, but they can be controlled (that means that the patient reaches an equilibrium point of stability: neither getting better nor getting worse)
My goal (Yes, I do have plans)
A difficult time can be more readily endured if we retain the conviction that our existence holds a purpose - a cause to pursue, a person to love, a goal to achieve
- John Maxwell
My current goal is simply to share my knowledge and life experiences with others. I intend to do this in the form of books. The following books are still in the conception stage and I do hope that I have the energy, strength, and fortitude to have them published, God willing:
- The Amazing Brain – a beginners guide (you have to read this book; I wish that I had read it when I was in my teens)
- Coping with Adversity
- Career choices
The greater the difficulty, the more glory in surmounting it. Skillful pilots gain their reputation from storms and tempests
Adversity has the effect of eliciting talents, which, in prosperous circumstances, would have lain dormant
March on. Do not tarry. To go forward is to move toward perfection. March on, and fear not the thorns, or the sharp stones on life's path
- Khalil Gibran
But gentle flames are not enough for iron;
it eagerly draws to itself the fiery dragon's breath.
That iron is the dervish who bears hardship:
under the hammer and fire, he happily glows red.
- Rumi, 1207-1273, Afghani-Turkish Sufi Mystic, Poet
One may not reach the dawn save by the path of the night- Khalil Gibran