“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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Peace

Peace: freedom from disturbance, tranquility

“There must be a quiet place where all is in order, a place from which comes the energy that overcomes turbulence and is not intimidated by it” Gordon MacDonald, 2003

A change in my life, which felt almost catastrophic to me at times, led to a purposeful and intentional search for peace. The search mostly felt like a struggle and during the worst of it, I felt overwhelmed by an internal restlessness that I could not quiet. Much healing took place, but I found myself in a place where I was unable to move forward in the process.

Whilst having dinner with a friend, she told me of her plans to climb Mount Kilimanjaro. She would be climbing to raise money for a charity that supports children affected by war through which healing is facilitated by encouraging healthy relationships. I knew that I had to join her. I hoped that as I climbed for War Child, I would also be walking for my own healing.

Arriving at our lodge in Arusha and meeting the other members of Mountain Network and War Child’s group two, made what I was about to attempt a reality which was both thrilling and terrifying. In an exercise we completed the evening before we started our climb, it became clear that each of us was not only climbing to raise funds for War Child, but to remind ourselves how to engage in the present, slow our pace in life, free ourselves from internal and external limitations, be more mindful, lead our children better, find happiness and regain perspective.

To me, the group was unique in the way the varied personalities worked together without losing our individuality. We had a unified purpose which helped us to leave our egos at the entrance gate of Kilimanjaro National Park and climb that mountain with an attitude of curiosity and openness, not controlling the journey in any way but rather willing to be led.

Every expectation was exceeded and we walked down the highest mountain in Africa having experienced, learned, reflected on, freed ourselves from and absorbed far more than we could ever have hoped.

It has been seven weeks since we summited and I have realized how much I learned:
• Being authentic allows for a real connection as it encourages others to be their true selves too
• Accepting both the beauty and ugliness of our character and making peace with who we really are, brings great freedom and contentment
• If you look for good you will see it
• Encouraging words give unbelievable strength whereas discouraging words lead to hopelessness and feelings of failure
• Kindness without conditions or expectations is a beautiful gift to give and receive
• We place so much value on being like-minded, when we should place higher value on being like-hearted
• Being truly unified in purpose facilitates cooperation rather than competition
• We are limited by rules but freed by boundaries
• Fear narrows our world and tells us we can’t
• Yes, we can
• It is easy to become overwhelmed when we think about the entire climb rather than just taking one step at a time- we can apply this principle to our lives
• Being able to accept help rather than only being able to give it, shows strength
• Helping should never make someone else feel powerless even if our intentions are good
• Belonging shouldn’t mean losing our identity
• Although society tries to rank us, we are all equally human in our value, vulnerability and fallibility.
• We need to make time to recharge and regain perspective. This is a necessity rather than a luxury
• People believe what you tell them- we shouldn’t undermine ourselves with negative words
• Being thankful for the little things brings contentment and fulfillment
• We have to grieve our losses whatever they are. We cannot avoid or repress pain and anger forever. Trying to compensate for what we have lost with someone or something else rather than going through the grieving process will ultimately hurt us and others.
• Being fully present and engaged in our lives will gives us little time to dwell on the past or worry unnecessarily about the future
• The actual experience is as good as or better than the picture in our heads if we allow ourselves the freedom of allowing it to be rather than being disappointed that it isn’t the same as what we imagined or expected.

The experience of climbing Kilimanjaro gave me a new perspective. I came down that mountain having left the past in the past, feeling hopeful for the future, fully engaged in the present and at peace.

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.

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.