Trudie’s Story – Broken Crayons Still Colour

I come from a happy home; two loving parents, an older sister and a childhood shaped by the comforting rituals of family and church activities. I have always been a sociable person and I expected that school would be a place of fun and friendship. Sadly, this was not my experience.

During primary school, I was the victim of bullying and teasing that undermined my confidence and self-esteem. Life was already proving to be challenging as I struggled with learning difficulties and a range of health problems that no one seemed to understand. I had pain in my joints and lots of unexplained sprains, muscle weakness and fatigue. By the time I was in high school things I also became plagued with unexpected fractures and dislocations.  I was seen by others as being a hypochondriac, lazy and clumsy.

Deep in my heart I knew that this was not the case but the weight of other people’s misunderstanding and judgement was a lot to carry.

I was blessed to make some beautiful friendships through my teenage years but my health continued to deteriorate. By the time I was in my early 20’s I was struggling to have the energy to do my job as a preschool teacher. The bending down, lifting and carrying that is an inevitable part of that job was too much. I had no energy and at times the pain in my joints, bones and muscles, brought me to tears. The greatest frustration was that no one seemed to know what was wrong with me.

Growing up in a Christian home I knew that God loved me and that I could pray to him. As a teenager that relationship grew stronger and more personal but I struggled with how I should pray about my health. At times, I begged God to take away my pain, to give me answers, to make it all stop hurting so much but the mystery illness continued to plague me. On one occasion, some close friends and family, led by our pastor gathered together to pray for my healing. As they prayed for me I cried out to God too. I felt warmth though my body and the kindness and compassion of those around me, but I received no physical miracle that night. I did however hear God speak to me, words that reminded me that I was seen, heard and loved by him.

‘You might feel like you and your pain are invisible to others,
but you are not invisible to me.’

I continued to struggle with crippling fatigue and pain and I was also dangerously overweight. It was while I was working with Weight Watchers to try and manage my weight that my dietician connected me with the Metabolism and Obesity Clinic at Royal Prince Alfred Hospital (RPA). Blood work and other clinical tests confirmed that my metabolism was operating at only 45%. That, combined with the effects of the pain medication I was taking and my inability to exercise without injury, all contributed to my weight gain. X-rays showed evidence of at least 16 fractures and when the bone specialist looked in my eyes he saw a blue tinge, a further indication that I was suffering from a collagen disorder. Finally, I was beginning to get some answers. I was eventually diagnosed with Osteogenesis Imperfecta. This did not answer all of the questions about my health but at least gave me and the medical team more of a framework for management of my symptoms.

I was still in pain but I no longer felt invisible.

Osteogenesis imperfecta is also known as brittle bone disease. It is a genetic disorder and there is no cure. My growing medical team began working with me to find the best way to manage my pain and protect my body from breaking down. It would be another 10 years before I was finally diagnosed with Ehlers Danlos Syndrome (EDS). EDS is a group of inherited genetic disorders that effect the body’s collagen. Collagen is basically the glue that holds our bodies together. 80% of our body is made up of collagen so when the collagen is faulty it effects almost every part of our body. For example, most sufferers have hyper flexible skin, hypermobility, recurrent dislocations, easy bruising, fragile skin, fatigue and early onset of osteoarthritis, orthostatic intolerances and digestive issues.

My arthritis is so wide spread it is now severe degenerative osteoarthritis. Every joint, muscle and bone in my body ache constantly. I fracture easily and then the bones take ages to heal, if at all. I can never trust that my body will do what it is supposed to do. I constantly walk in fear that I may be about to fall, sublax, or dislocate something. Imagine pulling the plug out of the bath or putting shoes on and in doing so, you slip a rib. Just standing, waiting in line at the checkout my knees will give way. Yawning or biting a carrot and my jaw may lock or slip out of place. These are sadly, everyday occurrences for people like me with EDS. Every time this occurs it causes more micro tears, more inflammation and more joint trauma. Standing up for most people is a non-event but for people with EDS it is three times as hard as our blood pools at our feet and makes you feel like you are being dragged down. Every day is a struggle. Some days I am unable to leave my house and other times I can get out with the assistance of walking aids or a wheel chair.

Although I had always longed to be a wife and mother I was resigned to the fact that I may never get to experience either of those things. God had other plans. In 2008, the year I turned 35, I married Steve. He is my rock, my best friend and the most caring and understanding man I have ever met. Despite being told that I many never be able to have children one year later we welcomed our first child, Archie and two years after that Hugo was born.

My heart explodes at the thought of how much I love my family and how blessed I am to have them.

Despite the limitations of my condition I love helping and serving others. I am a bona fide ‘people person’ and love nothing more than having people over for dinner and blessing them with a home cooked meal. During the early years of my life I had desperately longed for friendships, as an adult I seize every opportunity to offer friendship to others. Unfortunately, the things that I love to do, activities that actually help my emotional and mental health, are sometimes dangerous to my physical health. A few years ago, I was wrestling with God about my genuine desire to serve him and others, and the physical toll this took on my body. At my darkest moment, whilst stuck in hospital again, my sister sent me this verse from Psalm 23,

He makes me to lie down in green pastures;
He leads me beside the still waters.
He restores my soul;

I had always felt guilty about rest. The last thing I wanted to do was be a burden to others, to be useless. As my illness has progressed I have had no choice but to be still, and accept help. In the past, I had often reflected on the Bible story of Mary and Martha and been critical of Mary. She was the one who rested at the feet of Jesus whilst Martha worked and served. Serving is in my nature and I always struggled to understand how someone could just sit by and watch others work. My illness compelled me to re-examine the life of both Mary and Martha. I realised that although what Martha did was important, Jesus also valued Mary’s stillness, worship and attention. I began to see that in my desire to serve others I was also robbing my family and God of my undivided attention.

I realised that rest was a gift from God not a reward for work.

I have learned that by refusing to let others help, I am actually robbing them of the same joy that I get from serving. I have also become creative and innovative in the way that I build friendships. Instead of cooking a feast for a crowd in my home, I invite a friend over for a coffee. When I am unable to go out and meet people I write cards, send texts and make phone calls. I have changed the way that I serve others but the impact is still there. I am no longer holding myself to an unattainable standard of hospitality but am still able to bring connection, life and joy into other’s lives.

The last few years have been increasingly difficult for me and my family. Both of our boys have now been diagnosed with EDS and so our family is in the thick of a health battle that feels overwhelming a lot of the time. In spite of this I am very thankful for my life.  I am grateful for ketamine treatments that give me windows of pain relief, friends who surprise me with their generosity and thoughtfulness, a family that brings me love and so much joy, a husband who is endlessly supportive, kind and encouraging and my God who continues to meet me at every point on this journey.

It is not easy and I am no saint. I have asked God so many times to heal me. I have questioned him over and over again, ‘why I am still here when I feel so useless’ but then I read the Psalms and I am reminded that God is present in my confusion, my anguish and my questions. Last year a dear friend gave me a t-shirt that said, ‘Broken Crayons Still Colour’ and I have adopted that as my motto. I honestly don’t know what the future holds for me, the prognosis for my condition is not good, but I every day I am learning that it is still possible to find beauty in our brokenness.