Freedom

Freedom: the state of being free, unrestricted.

I am mindful of the freedom I have that has been denied to so many others for a multitude of reasons.But before my large intestine was removed I felt enslaved to an illness that brought fear and feelings of powerlessness.

The feeling of freedom I felt when I regained my health was tentative at first. Hopeful, although watchful and cautious. But once I had explored it more, it was an exhilarating feeling to be healthy. A different state of being.

One of the most restrictive elements of being ill before I underwent my colectomy, was my diet.
I reacted badly to foods that were high in fat; to high-fibre foods, foods containing artificial sweeteners, to caffeine and alcohol. It was really challenging not being able to drink coffee or tea without my intestine becoming acutely inflamed. Not being able to drink alcohol was very restrictive. Living in London as a young adult, unable to drink alcohol at work-drinks or any social functions made me feel isolated by my difference and my limited choices.

Eating my first handful of nuts a few months after surgery felt like I had gained so much freedom. I chewed every mouthful of the raw mixed nuts that my colleague and I had bought on our way back from a home-visit. And going out in London became even more thrilling. It was amazing to go out for “two-for-one’ cocktails and have the same choices as each of my friends and colleagues, our drinks being determined by preference rather than health limitations. The feeling of freedom was particularly exhilarating when travelling in the US and Mexico seven months after my surgery. Being healthy was amazing!

But what I have come to realize is that my freedom, although affected by my health, is not dependent on it. It has been far more greatly influenced by other factors.

While doing some reading for work, I came across a book called “Nurture by Nature”-How to Raise Happy Health Responsible Children through the Insights of Personality Type (Tieger and Barron-Tieger, 1997). They talked about how self-esteem is, at its core, about self-love and acceptance. They also talked about how when self-worth is undermined, it erodes our sense of ourselves as strong, capable and resilient.

Those words resonated with me and I realized what a massive impact self-worth has had on my life. My childhood, although happy and functional, included bullying and conditional acceptance. When I was diagnosed with a chronic illness that is associated with shame and concealment and underwent operations that have left very ugly scars on my body, my self-worth was further eroded. This left me imprisoned.

But through life circumstances, supportive relationships, therapy, prayer and doing lots of reading and questioning, I feel as if I have had numerous revelations which are beginning to bring me true freedom as I develop a deeper understanding and acceptance of myself. I have realized that I felt unacceptable, unworthy and a fraud. My biggest insecurities and failures were my greatest sensitivities and I felt as if I needed to defend myself for protection. But it seems to me, that being defensive more often highlights our insecurities and makes us vulnerable to having our fears about ourselves confirmed.

What I truly want is beautifully articulated by Tim Keller in his book on “The Meaning of Marriage. “To be loved but not known is comforting but superficial. To be known and not loved is our greatest fear. But to be fully known and truly loved is, well, a lot like being loved by God. It is what we need more than anything. It liberates us from pretence, humbles us out of our self-righteousness, and fortifies us for any difficulty life can throw at us.”

And that surely brings great freedom.

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Brokenness

Brokenness: lacking wholeness

I’m unsure whether the term ‘brokenness’ is widely used in religious circles, psychological circles or it is a word that has become part of our mainstream lexicon. Regardless of the origin or the most widely used context, the state of brokenness affect us all whether we are broken ourselves or affected by the brokenness of others.

In “The Life God Blesses- Weathering the Storms of Life that Threaten the Soul”, Gordon MacDonald speaks about looking into the centre of our souls and facing the inadequacies there. This usually takes place during difficult times in our lives which MacDonald describes as ‘disruptive moments’-unanticipated events which we would mostly choose to avoid if possible. Disruptive moments of crisis are often associated with pain and inconvenience, failure and humiliation. MacDonald asserts that it is during these times that we are most receptive to the distressing truths about ourselves and the world.

It is during these times too that we need to make a choice. MacDonald believes that we can try and deny or avoid the pain or we can accept the necessity of walking straight though it until the end. But, he feels, that denying or avoiding the pain can lead to emptiness and is characterized by denial, defensiveness, blaming and escape whereas accepting the necessity of the pain and working through it offers unimagined growth and depth.

Tim and Kathy Keller in their book, “The Meaning of Marriage” talk about the difficulty with seeing our own self-centeredness as a result of our ‘woundedness’. The Kellers believe that woundedness is compounded self-doubt and guilt, resentment and disillusionment. If selfish behaviour is pointed out, the response may be, “Maybe, but you don’t know what it’s like”. The wounds justify the behaviour. The woundedness makes people minimize their own selfishness. But they also talk about how only we have complete access to our own selfishness and only we have complete responsibility for it. The principle that needs to be put into practice is not to think less or more of ourselves, but to think of ourselves less.

Brennan Manning in “The Ragamuffin Gospel” explains how Christians believe that justification by grace through faith means that we know that we are accepted by God as we are. When we have accepted this to be true in both our heads and our hearts, then we can accept ourselves. Manning believes that the more fully we accept ourselves, the more successfully we begin to grow because love is a far better motivator than threat or pressure. Self-acceptance also means we have less need for the acceptance of others because we have an inner sense of security. We are no longer preoccupied with being powerful or popular and we no longer fear criticism because we accept the reality of our human limitations. It means that we feel less pressure to please others because being true to ourselves brings lasting peace. He also believes that the way we see others is often the way we see ourselves. And that if we have made peace with our flawed humanity and embraced our ragamuffin identity, then we are able to tolerate in others what was previously unacceptable in ourselves.

This concept of brokenness or woundedness is one that I have been wrestling with. And the pain that must be processed in order to have a chance of wholeness. At times, self-absorption and selfishness dominate, but the hope is that the process will lead to growth and depth, not so that I will feel superior or self-righteous, but so that I can be more gentle, gracious and compassionate. And that the message so simply put by Brennan Manning would be, “Yes ragamuffin, I understand, I’ve been there too”

Bag

Bag: a container that is open at the top, often with handles, that is used to carry things

Depending on who you are, the word bag can bring to mind a number of different images. It is however, unlikely that unless you have had surgery for Ulcerative Colitis, Crohns, or cancerous lesions in the large or small intestine, an ileostomy bag would come to mind. This is truly one of the ugliest bags possible, which fortunately largely remains hidden under clothes. Except when someone asks to see it. To have people look at part of my body protruding into a clear plastic bag attached to my stomach with adhesive tape and then running away to be sick or feel faint as a result of seeing it, are difficult memories.

An ileostomy can mean an opening (stoma) constructed by bringing the end of the small intestine (the ileum) out onto the surface of the skin and can also refer to the surgical procedure which creates this opening.
The purpose of this procedure is to divert the flow of waste matter while the surgically made pouch is healing. The waste is collected in a bag which can come in a number of forms depending on the needs of the patient.

I felt a heaviness from the bag as soon as my pain decreased and I became aware of other sensations. The heaviness was both physical and emotional and was a complex mix of feelings including horror, disgust, defeat, curiosity as well as a strong feeling of being challenged. The horror and disgust came from the large hole on the right of my abdomen which would not heal because I was still on high doses of cortisone. The adhesive tape in the shape of the circular stoma was meant to fit neatly around the hole. But because of the irregular swelling which made my stomach look like an extreme mountain bike track and the larger than usual stoma, attaching the bag securely was a challenge. I remember the stoma nurse packing the wound with medicinal seaweed to encourage healing. I felt as if my body and personality were separate. I imagine it was a necessary detachment. The feeling of defeat came from needing to have my colon removed, and having an ileostomy bag felt like a terrible loss. But truthfully, I was curious. I was curious to experience living with a bag. I was curious to know how I would respond. I felt challenged by the experience as if I had been taunted and needed to confront the aggressor. I was determined to be the victor.

Once I had become more familiar with the bag and knew how to control the output of pouring liquid, there were a number of benefits. Certainly far better than going to the toilet every few minutes with uncontrolled diarrhea. Going to the toilet at functions was no longer an anxiety-provoking humiliation. The bag needed to be held over the toilet basin, unclipped at the bottom and the largely odourless contents would soundlessly be drained. There was no feeling of needing to go to the bathroom. No fullness or discomfort. The bag filled with very little sensation as the stoma has no nerve endings.

Six weeks later, the night before I was due to have the reversal operation, the adhesive would not stick to my skin so the bag could not be secured. I spent hours trying to secure it. It signalled for me the end of a struggle and a subconscious refusal to allow this to be part of my life. Waking up in the intensive care unit after the operation the next day was almost exhilarating. There was no pain at all and a feeling of lightness where the bag had once been. My spirit felt the same unburdening. I felt hopeful and confident. This truly was a miracle operation. And my reconstructed pouch worked perfectly, just as it was meant to.

And now, bag would no longer mean a plastic pouch hanging from my body collecting waste matter but rather, a container that is open at the top, often with handles, that is used to carry things.
Hope, restoration, healing.

Responsibility

Responsibility: something one is expected to deal with and take care of, for which one is accountable should something go wrong An essential component of being emotionally and physically healthy is the ability to take responsibility for ourselves, our behaviour, our actions and our responses. Many of us who have a chronic illness or are chronically anxious, stressed or burnt-out are unsure of the distinction between our responsibility and someone else’s responsibility. Taking responsibility for the behaviour of others or not taking responsibility for our behaviour is damaging. Even though great effort is required, for the sake of physical, emotional and spiritual health, we need to work hard to understand responsibility. Henry Cloud and John Townsend’s book, “Boundaries: When to Say Yes, How to Say No to Take Control of Your Life” talks about the confusion of responsibility and ownership in our lives being a problem of boundaries. The authors are very clear that the inability to set appropriate boundaries at appropriate times with the appropriate people can be very destructive. I came to a powerful realization a few months ago when I was reading Gary Chapman’s “Desperate Marriages: Moving Towards Hope and Healing in Your Relationship”, that my emotions should not control my actions. I have often been guided by my emotions and have justified inappropriate responses because I felt hurt, I felt wronged, I felt attacked or I felt betrayed. But what I didn’t realize was that I was still responsible for my actions no matter how I felt. It has taken me time to change my mindet in this area. I now understand that although it is essential to acknowledge these emotions, I cannot allow my emotions to control my actions. This knowledge has brought freedom because believing myself to be controlled by my emotions left me feeling powerless and exhausted and caused great damage. Another truth that was revealed in Chapman’s book was that I am responsible for my own attitude. Attitude relates to the way we think about things and what we choose to focus on. Attitude has a profound effect on physical and emotional well-being which affects our relationships and our lives. The challenge for me, is to be realistic without being negative or feeling hopeless, and not being idealistic about my expectations or impractical about what can be accomplished. In his book, “The Seven Habits of Highly Effective People”, Stephen Covey talks about being proactive. For him, this means that as humans we are responsible for our own lives and that our behaviour is a function of our decisions rather than our conditions or our feelings. He describes proactive people as those who recognise responsibility and therefore do not blame circumstances, conditions or conditioning for their behaviour. Therefore, it is not what happens to us, but our response to what happens to us that hurts us. This means that our basic identity does not have to be hurt, but that difficult experiences can build character if we choose. Covey talks about how, unlike proactive people, the language of reactive people absolves them of responsibility. Language like, “There’s nothing I can do, that’s just the way I am, if only and I can’t” transfers responsibility. While being proactive rather than reactive leads to healthier relationships, better productivity and being more effective in life, another important lesson is not to allow the reactive responses of others to undermine us. I found hope in Gary Chapman’s words that admitting my imperfections does not mean that I am a failure. It feels dangerous and unsafe to admit to failure, but without that admission and without taking responsibility for those failures, change cannot take place. Chapman writes so beautifully when he says that “To acknowledge your imperfections does not mean that you are a failure, it is an admission that you are human. As humans, you and I have the potential for loving, kind and good behaviour, but we also have the potential for self-centred and destructive behaviour. Admitting past failures and asking for forgiveness is one of the most liberating of all human experiences.” (Chapman, G. 2008)

Anger

Anger: a strong feeling that one has when something has happened or someone has done something that one doesn’t like

Anger is both part of grieving and being human. Anger is frequently felt not only by those of us with a chronic illness but by healthy people every day. But just as illness and health can have an effect on our lives, so can our responses to anger. Sadly, research has shown that there is a correlation between supressed anger and colitis. Responses that try and deny the wrongs that have been inflicted without processing them means that anger is unresolved.

Reading Gary Chapman’s book, “Anger: Handling a Powerful Emotion in a Healthy Way” has encouraged me to reflect on the anger in my life as well as the way anger is viewed in general.
Gary Chapman believes that when dealing with anger we need to ask ourselves what the origin of anger is and what the purpose of anger is. His belief is that understanding the origin of anger is essential to understanding the purpose of anger which is essential to learning how to process anger in a constructive way.

Anger is a response to an event or situation in life that leads us to feel irritation, frustration, pain or displeasure. Chapman explains that anger is fed by feelings of hurt, disappointment, rejection and embarrassment and that anger is the emotion that emerges when we are confronted with something we perceive to be wrong.

It is important to remember that anger itself is not evil or sinful or wrong, but that our response to anger often is.

I like Chapman’s assertion that anger’s fundamental purpose is to motivate us to positive loving action that will leave things better than when we found them. For many of us, healthy anger control is something that we learn as adults, which means we have to reset our default style of dealing with our anger.

For me, the most helpful advice he gives for people processing anger towards someone with whom we have a relationship is the five-step process:
1) Consciously acknowledge to myself that I am angry
2) Restrain my immediate response
3) Find the focus of my anger
4) Analyze my options
5) Take constructive action

When I try and apply these steps to my processing of anger, I have to deal with some uncomfortable and painful truths.

Because the onset of the emotion of anger is so sudden, I often respond verbally before consciously acknowledging what is going on inside me. That is the reason that consciously acknowledging to myself that I am angry is an essential step.

I now understand that restraining my response is not the same as storing my anger. Rather, it is refusing to take the action that I typically take when feeling angry.

Locating the focus of my anger requires me to be intentional and honest about exactly what is making me angry. I need to determine the primary cause of the anger as well being realistic and reasonable about the seriousness of the offence.

Analyzing my options helps me to take responsibility for my actions because I am not allowing myself to be a powerless victim, but rather a powerful person who has choices and options. And it is helpful to try and remember whether the options I am considering are positive and loving. This is an ongoing challenge for me.

Chapman’s book has taught me a new term and hopefully a new way of thinking and acting on anger. Forbearance. This is giving up the right to take revenge as well as refusing to allow what has happened to undermine my sense of well-being.

This is an intellectual insight rather than a practical application in my life at this stage, but I feel assured that the process has begun which gives me hope as well as allowing me to take constructive action.

Restoration

Restore: to give back something that was lost or stolen One of the options available to people with extensive uncontrolled disease of the colon is what is known as a ‘restorative proctocolectomy with ileal reservoir’ or a ‘pouch’ procedure. The aim of the operation is to remove the entire diseased bowel as well as to avoid a permanent ileostomy (bag). The operation is done in two stages by most surgeons: the pouch operation with a temporary ileostomy to allow healing of the surgical joins, and the removal of the bag and closure of the ileostomy site after approximately six weeks. During the operation the abdomen is opened and the colon and rectum are removed to just above the anal sphincter. A reservoir is made out of the small intestine. This is done by folding it onto itself and then joining the folds together using specialized stapling machines to form a bag-like structure. The reservoir is then joined to the anus using the staple-machine so that it will be possible to go to the toilet in the usual way. The purpose of the temporary ileostomy is to prevent the faeces from coming into contact with the staples during the healing period after the operation. That is the factual explanation of the procedure that I underwent. The experience of it was filled with emotion, pain and trauma such that the description feels incomplete. At the time of the operation, I was so ill that I was desperate for relief. I attended pre-operative counselling where everything was explained and I could ask any questions and discuss any fears. In reality, I was too overwhelmed. I didn’t want to be so ill, but I didn’t want to have surgery. I definitely didn’t want to have a clear plastic bag hanging from my twenty-six year old body. I didn’t want to give up my job in London, but I was a locum and my position could only be kept open for a short period of time. I didn’t want to give up my room in London, but my friends had to pack everything up for me and put it in storage in their homes. I didn’t want my family, my friends, or my boyfriend to endure pain because of me. But watching someone close to you endure suffering, cannot be without pain. I needed a blood transfusion because I was so anaemic. My gastroenterologist recommended donor blood from people I knew. I can never and have never adequately been able to express my gratitude to my friends, my family and their friends and family who donated their o-negative blood to me. The six pints that I needed were all donated within a few days. When my blood transfusion began in the ward the day before the operation, I started to have some understanding of what was to come and the frightening state of my illness. The operation was going to restore to me what I had lost. I would again be physically healthy and have an active and full life unimpeded by chronic illness. But restoration is more complex than just the recovery of health. Waking up in the intensive care unit after the six hour operation was traumatic in a way that cannot be fully articulated. Even though I had an epidural which had some numbing effect, I could feel the pain clearly and sharply. I was on oxygen, fed through a vein in my neck, hydrated and partially medicated through a drip in my arm, wires were attached to machines monitoring my heart and my breathing, tubes temporarily stitched into my body to drain fluids and a catheter for urine. Although shifting position would have intensified the already almost unbearable pain, not being able to move made me feel totally powerless and dependent on people that I was forced to trust rather than had grown to trust. I was asked to rate my pain when needing additional relief, but frequently could not speak because of its intensity. The nurse would assume that my pain was adequately controlled. It was a time where screaming could have communicated my needs effectively, but screaming is impossible without being able to take a deep breath. All I wanted was for someone I loved to sit where I could see and touch them all the time. This was not allowed, so that the staff could take care of our physical needs. But our emotional needs were therefore largely unmet. The nights were the loneliest and most frightening. The ever-moving shadows and noisy machines that could never be a background hum became menacing. The terror of being undefended was overwhelming, competing with the unrelenting pain. In reclaiming something that was lost, it felt as if something else was stolen. The beginning of physical restoration certainly, but coupled with a new loss that would require restoration in a different form.

Choice

Choice: the act of deciding between available options

Reading this week about the death of Advocate Robin Stransham-Ford who had legally won the right to assisted dying, made me think about what having a choice really means. It reminded me of a piece of writing by an American woman, Brittany Maynard, who was diagnosed with terminal brain cancer aged 29. What struck me in what she shared about why she was a proponent of assisted dying, was that she was not choosing to die and she did not want to die, but she was dying. Her choice was to die with dignity.

In speech therapy, we have a term called ‘forced choice’. A child is offered two alternatives and encouraged to choose one. For example, “Would you like the car or the ball?” It’s a choice most certainly, but not a free choice. The type of choice that people with chronic illness face.

After almost four years of good health facilitated by taking two Salazopyrin tablets three times a day, I reduced the dosage to two or no tablets on the advice of a gastroenterologist in Johannesburg. The active ingredient in Salazopyrin is sulfasalazine which has an immunosuppressive and anti-inflammatory effect. Although the gastroenterologist found evidence of active disease (which was asymptomatic), he believed that the Salazopyrin was no longer necessary or could be reduced with no significant effect on the disease. What was not taken into account was that because I was asymptomatic, I believed the disease was no longer active at all. I had therefore lived a life without the fear of becoming really ill again. But as soon as I knew that was a possibility, I believe the stress contributed to a relapse. It was also a time of major upheaval as I had completed my Masters in Speech Therapy at the University of the Witwatersrand (WITS), so was leaving my boyfriend of three years, my practice, many friends and my family in South Africa to go and live and work in London.

I arrived in London at the end of July 2001 and started work on the first of August at a National Health Service (NHS) Primary Care Trust. I was speech and language therapist on the pre-school special needs team who visited families in their homes. Many of my families were asylum-seekers from African countries like Somalia and most of the families I saw lived on council estates. It was to be the start of my love for and strong belief in early intervention (working with families and their children from birth to three years). It was a time of deep fulfilment as well as deep sorrow for the challenges faced by the families and children on my caseload. I saw suffering almost every day and was in awe of the resilience shown.

At the same time, I was becoming more and more ill. Unused to not having private medical care, I struggled with the idea of being unable to choose a doctor, but having to register with a general practitioner dictated by my postal code. I did not register. By December, I had to get off the tube at every stop that had a toilet. I knew every public toilet and all restaurants, pubs, bars or shops that would allow the use of the bathroom without needing to buy anything. I lost so much blood that my haemoglobin level when tested in South Africa after Christmas was less than 6.0 (per decilitre of blood) with the normal range being between 12.0 and 15.5 for women. I was in pain at all times, which varied only in intensity, never in absence or presence. And because I had a chronic illness, I believed that I couldn’t tell anyone how sick I really was.

By the time I flew home to South Africa for Christmas, I was too ill to try and hide it. In January after being examined by my trusted gastroenterologist in Cape Town, I was referred to a specialist surgeon. My colon was no longer able to function effectively and the lining was now so thin and damaged that perforation was a possibility. This would have meant that I could die of septicaemia. But it was not immediately life-threatening. I was told that I still had a choice of whether or not to have my colon removed but if I delayed, it would most likely become an emergency life-saving operation. It hardly felt like a choice- with death being an available option.

But in truth I did have a choice. Unlike Robin Stransham-Ford or Brittany Maynard, I did not have the choice of dying or dying with dignity, I could choose to live. And I chose.

No

No: not any, a refusal

When young children start exploring their autonomy and begin to have some understanding that they are separate from their primary carers, they use the word no more frequently than any other.
Again as teenagers, in asserting independence, separateness and autonomy, no is used frequently in both word and action.

But, for some, no becomes associated less with independence and more with defiance or non-compliance. Which is a deep conflict for someone who wants to please or has been conditioned to please. No is no longer a simple refusal or an expression of not any of that, but it can become a guilt-laden and anxiety-inducing word. However, the consequences of not saying no are pervasive and can cause damage that is difficult or impossible to repair.

I have been reading a book by Gabor Mate about understanding the connection between stress and disease. It is called “When the Body Says No” and in it he talks about three factors that universally lead to stress. All three are present in the lives of those with chronic illness: uncertainty, lack of information and lack of control. Through reading this and other books, I have come to realise that when I feel unable to say no and it causes me to become overwhelmed and overloaded, my body says what I cannot by becoming ill. My body reacts with inflammation in my joints, my intestinal tract and my lower back. When I am very stressed an old running injury in my hip joint becomes so painful that I often have to practice controlled breathing, as if in labour, to try and manage the pain. But when I am experiencing symptoms of my intestinal tract being inflamed, it is often a signal that feelings of emotional anguish, uncertainty and loss of control are being repressed by my consciousness and so are expressed by my body in illness.

I have also been reading Henry Cloud and John Townsend’s book on Boundaries: When to Say Yes, How to Say No to Take Control of Your Life. It talks about knowing what my responsibility is and what someone else’s responsibility is and setting the appropriate boundaries. It discusses the way boundaries help us to distinguish what is ours so that we can take care of it. And how boundaries help us to keep the good in and the bad out. But there are times that the function of boundaries is reversed and the bad such as pain and hurt are kept in and the good such as love and acceptance are kept out. But of course, what was most pertinent to me was that the most boundary-setting word is no. People with poor boundaries, struggle to say no to external or internal pressure which leads to outward compliance, but inner resentment. It leads to a loss of control. A loss of control leads to feelings of powerlessness.

In his book “Keep Your Love On! Connection, Communication and Boundaries, Danny Silk talks about what it means to be a powerful and powerless person. Powerful people take responsibility for their lives and their choices. Powerless people are driven by anxiety because there is a belief that most things and most people are more powerful and life therefore feels out of control.

For me, a common thread in all these books is my relationship with the word no. The importance of being intentional about saying no and equally about saying yes so that I can be emotionally healthy which would support my physical health. Saying no is a reflection of my ability to take responsibility for my life, but unlike a toddler or a teenager, gives me the power to say yes. Yes to wholeness and healing.

Remission

Remission: a period of time when an illness improves.
“Be joyful in hope, patient in affliction” Romans 12:12

For me, remission did not bring to mind the words release, relief and healing, but felt more like the disease was lurking, insidious, and threatening.

After being discharged from hospital to do my final oral exam, I continued to present with acute symptoms and signs of ulcerative colitis. I had lost twelve kilograms which meant that basic activities like eating and walking used up so much energy that I needed to sleep for hours afterwards. The frustration was immense as I struggled with being unable to use the strength of my mind to make my body function.

Although the exact cause of ulcerative colitis has not been conclusively proven, it is believed to result from a malfunctioning immune system, genetic defects or exposure to certain environmental factors or a combination of all three. My grandfather died of colon cancer, and my father had his colon removed because his ulcerative colitis became so severe that death was imminent. My ulcerative colitis was thought to be triggered by bilharzia which I most likely developed whilst doing some seriously rough backpacking around Madagascar for my twenty-first birthday.

But my malfunctioning immune system was the most difficult to control after I was discharged from hospital. My white blood cells, which are part the immune systems fighting response, were being directed against my own body tissue causing chronic inflammation. Wanting to exhaust all options before considering surgery, my gastroenterologist put me on tablets used to treat leukaemia which radically reduced my white blood cell count. I had a standing Wednesday afternoon appointment with my GP to take blood to check on my white and red blood cells and adjust my medication accordingly. I was also on high doses of cortisone which had unpleasant side effects like sleeplessness, nightmares, increased facial and body hair, thinning skin, joint pain and probably the worst for me was a big round swollen face.

But hope became reality and I was cautiously declared sufficiently healthy to start my eight month backpacking journey around Eastern and Western Europe, the UK and Scandinavia with my great friend, Nicole. Our first adventure was a Contiki ski trip in Austria with another school friend and lots and lots of Australians. Truly amazing to be skiing two months after being so acutely ill. We skied most of the day and went out most of the night, laughing continually in the freedom and the experiences shared with old friends and new acquaintances. It was eight months of wondrous restoration of health and a time to re-evaluate and reflect. My disease was considered in remission. And the longer I was healthy, the less threatening that word felt.

It was too, a time of questioning my faith, particularly the power of prayer and the promises of God. I came to an understanding that healing comes in many forms. But my faith wavered as I felt far from God. Hope, like healing, also comes in many forms. An Australian that we’d met skiing and who then joined Nicole and me periodically along our travels, shared with me one night that there was something in me that spoke of God. This was a man who had shared our rather wild skiing trip and our total freedom from external expectations or confines. It was then that I realized that even though I felt people at home expected me to behave in a particular way according to, among other things, how I had been parented, which school I attended, who my friends were, which opportunities I had been given and if I attended church or not, the core of me was not defined by any of that. A revelation that brought much freedom and set me on the path of true and deep healing that felt less like remission and more like a cure.

Grief

Grief: great sadness

This definition is so appropriate for someone trying to grieve in a way that is inconspicuous.

A chronic illness is very different to a terminal illness. It did not feel like there was defined point after which my life would never ever be the same again. Grief in relation to my illness meant something contained. It meant a great sadness.

But grief is far more than that. Words like, ‘mental suffering and distress’ and ‘deep sorrow’ seem more suitable as descriptions. But that kind of grief in response to the news of my chronic disease would have felt indulgent; an undeserved and unwarranted reaction.

After my first hospitalization, I read Elisabeth Kubler-Ross’ memoir of living and dying, “The Wheel of Life”. It was beautiful, if bizarre to me at times, but always honest. Elisabeth Kubler-Ross is well-known for her work with the terminally ill and for her pioneering book “On Death and Dying” where she first discussed her theory of the five stages of grief (denial, anger, bargaining, depression, and acceptance). Although people express grief in different ways, and for different lengths of time and intensity, having a framework for grieving helped me to make some sense of my own grief. The grief I didn’t believe I deserved to feel, the grief I felt I needed to moderate and temper, the grief that has been largely unexpressed and acknowledged.
I have realized that after 18 years, I am still at the beginning of my mourning. I have largely been in denial for 18 years. But I have to face what feels too overwhelming to comprehend. And I have to admit the extent to which this denial has caused me physical and emotional damage and affected significant relationships. I am only beginning to understand and accept this.

I find Kubler-Ross’ description of the denial stage really personal. She talks about the first reaction being the denial of the reality of the situation in order to rationalize overwhelming emotions. She expresses words like “blocking out” and “hiding”. Speech therapy and audiology, or Logopaedics as it is called at the University of Cape Town (UCT), is in the Medical faculty. Whilst in the medical library doing research for an assignment, I noticed that the gastroenterology books were opposite the speech therapy books. I remember reading about Ulcerative Colitis and all of the symptoms and co-occurring health issues and honestly thinking that the author and researcher must be mistaken. But, even in my state of denial, I had to admit that the author being mistaken was highly unlikely. I finally reasoned that I only really had a few centimetres of disease, which meant that the book obviously didn’t apply to me. I put it back on the shelf, resumed the research for my assignment and refused to read any books on Ulcerative Colitis again.

But when reality emerged and, with it, emotional pain, I felt anger. The anger was staggering in its intensity. The doctor who put me on a drug trial knowing I was highly allergic to one of the drugs being tested, was the person at whom my anger was aimed for years. At diagnosis, no more than five centimetres of my large intestine showed evidence of disease. After the drug trial that resulted in my hospitalization, the disease spread to most of my colon. Of course the anger did nothing to minimise the disease nor make me healthier, but rather took emotional energy and fuelled more rage. I raged mostly at things in the world that were beyond my control, trying to fight the powerlessness that I felt.

Powerlessness is a strong feeling of being incapacitated, helpless and being unable to act. It is a feeling that I cannot bear, a state that I will do almost anything to free myself from. This is almost impossible to do with a chronic illness. But I am now on a journey to take back control in a healthy and gentle way.