“Do not be afraid or terrified…. For the Lord your God goes with you.”

A group of us has recently returned from a trip to Madagascar on an outreach which saw us share our resources and our skills and hopefully express our love to 30 families and their children who had varying degrees of disability. In return, they shared, among other things, their lives, their enduring love and their courage with us.

A few days before our departure, the words of Deuteronomy 31:6: “Do not be afraid or terrified for the Lord your God goes with you,” kept coming into my head. (I had to use Google to find the source of the words because although my faith is robust, my knowledge of bible verses is not).

I have been a therapist for almost twenty years and have worked in a wide range of settings in a number of places with children with different types of challenges. What I experience in Madagascar (this was not my first trip), is often the most terrifying and overwhelming of anything or any place I have encountered. I have seldom been in a position where the lack of access to what could be considered basic services is so serious. We would walk  to and from work some days, through sewerage running in the streets, ceaseless noise and neglected and desperate-looking dogs, no clean running water for many people, and most distressing, old men living next to  piles of rubbish and tiny children with flies their faces and torn clothes sitting or playing in the dust or dirt.

But what I noticed most, as we worked and engaged with the children and their families and with others, was that, although life appeared to be a ceaseless struggle for so many, there was not sense of overwhelming hopelessness or of bitterness, but rather a humble resilience and quiet courage.

I have returned, forever changed, as I was by my trip there last year. And I have realized how afraid and terrified I have been of so much and so many things for so long. I know that I am not alone in this.

Our family of three have had a challenging week and as I was tidying the house this weekend, I found the photo album that one of my children had been tearfully looking at. The photos were taken around the time that their father and I separated and it was as unbelievable to me as it was to that child that the marriage ended when our children were barely out of toddlerhood.  They are such beautiful children who love us both so much and will never know what it feels like to have parents who love each other, delight in each others company and work through hardship in the pursuit of a deeper, stronger and enduring relationship. And how my other child with a new Instagram account searched the profile of the man who used to be a father-figure to both of them and took some comfort in seeing that the pictures of our time together had not been deleted as if that somehow proved that child worthy rather than erasable. I also received a diagnosis that finally explained the chronic fatigue and pain that I have been experiencing that could not be explained by my ulcerative colitis.

Previously, I would have been overwhelmed by events such as these and in order to deal with the fear, would have made myself feel courage. But what I have realized is, that being afraid meant that I found courage like a boxer prepares for a fight and my courage took the form of protecting myself or attacking, not allowing my vulnerabilities to show because that would have risked being wounded. But thankfully life should not be a boxing match and I am no longer overwhelmingly afraid nor terrified because I know God truly does go with me. I also know that everyone experiences something that makes them feel afraid, terrified and overwhelmed at times. And so we need not feel alone. What I was learned in Madagascar was that courage means standing strong and firm, but with gentleness and humility, not allowing fear or circumstances to overwhelm us.

So, “Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; He will never leave you nor forsake you.”

 

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Forgiveness

Forgiveness: the act of forgiving

I have recently been reading a book written by Adam Hamilton called, “Forgiveness-Finding Peace through Letting Go”.
He prefaces his book with these words, “Forgiveness is essential to our lives. Without it, no marriage can survive, no family can stay together, and no society can be sustained. It is a necessary part of lasting friendships and work relationships.” He believes that that forgiveness is essential because our human nature means that we are bound to hurt others and others are bound to hurt us. He believes that if we are ever to know freedom and joy then we need to be able to say. “I am sorry” and “I forgive you”.

I have been wrestling with the concept of forgiveness. Particularly, struggling with being forgiven when it felt undeserved; not being forgiven when my repentance was genuine and brought about deep change in my life, as well as needing to examine even the hidden parts of my soul to determine whether I have truly forgiven those who have hurt me.

Many years ago, I attended a course on prayer where one of our tasks was to hold a stone in our hand and think of all the people who had hurt us in some way and those whom we needed to forgive. Once we had done that we were asked to transfer the stone to our other hand and think about all of the people whom we had wronged. As I sat there quietly with a small group of women reflecting on the people we had hurt in our lives, I realized what a burden it seemed both to forgive someone who had hurt me as well as to admit to needing to be forgiven.

Being forgiven is a healing experience that is encouraging and brings hope. But there are times that we face not being forgiven by those whom we have wronged or have felt wronged by us. Is God’s forgiveness sufficient to ease or remove the burden? Sometimes forgiving ourselves is most difficult and in a society that seeks justice and frequently favours retribution over mercy, we feel we need to suffer in order to ease our guilt. But does that mean that we expect others to suffer to be free of their guilt too?

When we have been hurt, we can seek justice or offer mercy and we need to ask for mercy as well as show mercy.
Forgiveness is most freely and fully given when the person who has done wrong repents.
Repentance is a process that should include awareness, regret, confession and change.
• We need an awareness or a consciousness that something we have done has caused pain to another
• When we acknowledge that and do our best to understand how that made the other person feel, we experience true regret or remorse.
• When we understand the impact our actions have had, we are ready for confession- for taking genuine responsibility for what we did and asking for forgiveness. This is about acknowledging the wrong we’ve done and asking for grace.
• Change is the most important step and means “changing one’s heart and mind, leading to change in behaviour”

Hamilton talks about what we are actually looking for when we seek forgiveness. It is not a request for the other person to excuse what we have done, but rather to pardon us. We are looking for reconciliation and for the restoration of our relationship. We are asking for that person to release the right to retaliate. In seeking and finding forgiveness, we experience pardon and restoration, which offers a new beginning.

There are times that we need to forgive without repentance from the person who has hurt us. How does one forgive someone who has inflicted great hurt, much destruction and will not take responsibility for it? This feels like an almost impossible task, but choosing forgiveness means that we choose power rather than powerlessness- we choose not to give the person who has hurt us any more power over us.

In Tim Keller’s book, “Reason for God”, he talks about the need to grant forgiveness before it is felt and that releasing the anger, hurt and bitterness through choosing forgiveness is a process that leads to peace and new life. A process that is difficult and often needs to be repeated. But brings restoration.

I hope that as I continue on my sometimes challenging journey of life, that what I have learned about forgiveness takes hold of me in a way that leads to sincere and absolute forgiveness of myself and others and brings peace and new hope.

“Forgiveness does not change the past, but it does enlarge the future” Paul Boese

Recovery

Recovery: a return to good health after an illness or to a normal state after a difficult period of time

Thinking about what has been particularly challenging in dealing with a chronic illness and the associated difficulties, I realize that the recovery after being hospitalized is frequently downplayed. Not fully acknowledging the experienced trauma; not taking the time needed to recover physically or process the feelings experienced by the person who is ill, or the experiences of those people who have suffered because of my illness, has most certainly led to emotional harm.

There are many milestones on the recovery route. The removal of the oxygen mask or nasal cannula is usually the first step on the road to being discharged. In ICU, I always encounter the problem of shallow breathing because of the pain. More pain relief cannot be administered when my breathing is too shallow. So I need to be given oxygen. The oxygen mask is uncomfortable because, for some reason, it makes me feel as if I am suffocating rather breathing easier. If the oxygen is delivered via a nasal cannula then my nostrils become so sore that I have to concentrate on mouth-breathing which is exhausting. When the oxygen is removed it means that I am getting better. The next milestone is the removal of the nasogastric tube. I know I’m recovering when swallowing becomes painful and the tape securing the tube to my face becomes uncomfortable. The tube is usually removed within two days. As soon as the drip is removed, I know I will be home in a matter of hours.

And it is such a relief. There is usually great excitement and gratitude that I am being discharged. It feels as if the worst of the experience has passed. But that is not necessarily true. Getting to the car is usually so exhausting that I am tempted to ask to go back to my hospital bed. The car journey home is often frightening because the unevenness of the road and the pressure on my body when the car slows and accelerates is painful. Sometimes, I can only make it as far as the couch if my bedroom is upstairs and I have to rest and prepare myself to walk up the stairs to my bed. Eating takes so much energy and makes me feel such discomfort, that the anticipation itself is exhausting. But it is always wonderful to be back home with my family, my husband, my dogs and my children. There are fewer feelings greater than lying in my own bed next to someone I love and this is amplified by having been in hospital.

After a few days, I look less gaunt and frail and start to look and feel healthier and stronger. This, I realize, is where the denial starts. The suppressing of emotions that should be processed at this stage. Those close to me are dealing with their own trauma and it is painfully lonely because it is so difficult to be needy and needed at exactly the same time. Because the way I look does not always reflect how sick or weak I feel, there is some expectation that life can start to assume some type of normality. I cannot fully articulate the extent of the damage caused by this assumption. There are unexpressed feelings and emotions both from me and from those who love me. To tell you how much grief, loss, anger, fear and helplessness I am feeling seems as selfish as you telling me how much you feel those emotions. However, suppressed and unexpressed emotions don’t disappear, but rather become something bigger and less manageable, surfacing unexpectedly. To be physically sick and emotionally vulnerable feels impossible particularly since the seriousness of the illness makes those close to me emotionally vulnerable too. At the time, it feels unbearable, so detachment or the magnified expression of emotions in unrelated contexts occurs.

This is a difficult journey. The answers are not yet clear, though I know that my search is part of my recovery.

Courage

Courage: when you are willing to do something difficult or dangerous.

A year and a half after my large intestine had been removed and a pouch reconstructed from a portion of my small intestine, I was leading a full life typical of a newly- married speech therapist whose professional- cricketer husband played all over England while I mostly stayed in London with many of my close friends living no more than a tube ride away. It was exhausting and exhilarating. Exiting and disappointing. Fulfilling and painful. It was a time of feeling invincible, at the beginning of a journey that had the promise of following a more predictable course than the journey thus far.

I went to work one morning, going straight into the clinic on the Kingswood Estate, a huge council estate about an hour by bus from my base in Camberwell which was also in South East London. I was the speech and language therapist on a team of health visitors and nursery nurses who were involved in a government initiative called the Neighbourhood Renewal Project. The aim of the project was to allow vulnerable communities who did not qualify as sufficiently disadvantaged to access existing government programs, to access speech and language services that provided shorter waiting times, more therapy and better access to healthcare professionals than the standard National Health Service (NHS) provision.

I phoned a mom to confirm that I would be seeing her son later that day and then phoned my husband to tell him that I was feeling unwell. Those two conversations would later guide my colleagues in their search for me.

While taking a short-cut through a grassy quadrangle, I was overcome by such intense abdominal pain that I could not stand. I started vomiting repeatedly and, although the day was cool, perspiration ran off me.
I became so overwhelmed by the pain that I could not move,  nor draw a deep enough breath to speak, much less shout for help. Because I had taken a short-cut and was still in the quadrangle, I could not be seen from the flats or the road and was lying in a low-traffic area. I became truly afraid that I would lie alone in a deserted area of a council estate in London for hours and hours unheard, unseen and unaided. The feeling of helplessness was terrifying. I could hear my phone ringing and cars driving past, but I could not move or speak.

I have read of superhuman strength in times of crisis and I experienced it that day. I decided that I had to get up and walk to the road. I must have looked as terrible as I felt because when I made it onto the road people stared, but did not stop. I managed to cross the road and go into a pharmacy where I collapsed again, vomiting and unable to speak. By shaking and nodding my head, the pharmacist could determine that I was neither drunk not high, but very ill and he called an ambulance. For years and years after being loaded into an ambulance that day and driven to Accident and Emergency with the sirens blaring, I felt a cold, scraping fear whenever I heard a siren.

The mother of the child I was due to be visiting phoned my office to check if I was okay when I failed to arrive for the scheduled and confirmed visit. My colleagues called my husband when my cell phone rang unanswered and he could tell them that I had felt unwell when we spoke that morning. They phoned all the hospitals in the south of London and when they could not locate me, they started searching by car and on foot. By the evening, after a frantic day of searching for their missing female co-worker and friend who had disappeared alone on a council estate, they arrived at a teaching hospital close to our base. It still makes me cry twelve years later when I retell the story of how two of my friends walked in and recognised my shoes. They said that they were almost too afraid to come and look at the bed behind the curtain because they were unsure of what they would find. It is painful to imagine how they felt. I was, of course, very much alive although unwell.

Part of my small intestine had fallen into my pelvic cavity and eleven centimetres had to be removed during emergency surgery because the tissue had died. The trauma of this unexpected surgery and the horror of being in an understaffed government hospital in one of the most deprived areas in London cannot be overstated.

But the courage I saw from my colleagues that day was inspiring. My friends, my family, my patients and their families and my colleagues were, and still are, examples of bravery. Danger and difficulty did not overwhelm them. Fear did not make them give up. Hardship did not make them lose hope.

I continue to be inspired.

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.

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.

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.