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.

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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.

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.

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

stoma

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.