Rod Shares

Although we are created as the beloved, we must learn to love; although we are created in gratitude, we must practice gratitude; although our deepest identity is a communion of care, we must learn to practice care in our relationships. Once we glimpse God's love in our solitude, we will naturally seek to create contexts for that love to be expressed in the world. --- Henri Nouwen --Dear Family and Friends, This month marks one year that Rod has been in bed. We want to sincerely thank you for the 85 prayer flags that hang in our back yard. At the heart of all that has transpired over the last months, is the knowledge that the same God who created us in Gods image remains intimately involved in our lives and loves us as a parent for their child. Rod profoundly experiences this when he spends time each day in silent meditation. So, how does one go about describing what life is like for Rod? Ask him! My life is an incredibly odd mix of extremes. To speak of my physical life is to attempt to convey what it is like to have just survived one year of the most excruciating pain that I can describe. Day in, day out, its the same. Almost never do I venture from my bed because any physical movement or touch results in my pain increasing. Our shower I have dubbed, The TORTURE CHAMBER. The rest of my time, my pain levels move between an intensity where I struggle to think clearly, speak and read (I havent read a book in over a year)and an intensity where the lights are turned off, the drapes closed, my ear-plugs are put in and I silently grit my teeth and I wish that I could die. Thiss it, my PHYSICAL life. My emotional, psychological and spiritual life is, on the other hand, totally different. I can truthfully say that, on these levels of my life, I have experienced very few bad days this year. Each day I meditate. Its here that I meet God in ways that profoundly alter my view of life. Through the grace of God, I live untouched by bitterness, anger or depression. Each day I wake exhausted, in excruciating pain and happy to greet another beautiful day! Each day I experience miracles and I grow ever more exhausted. My life is one lived between absolute extremes. In the past months, Rod has been seen by a neurosurgeon(s), pulmonologist, pain specialist, sleep specialist and neurologist with the conclusion that nothing can be done surgically. Rods increased pain is due to a progression of Arachnoiditis with possible additional effects from his tethered spinal cord. Increased pain is likely the cause of his compromised breathing, rapid heart rate and irregular blood pressure. The suggested courses of action include using a specialized BiPAP machine at night and seeking improved pain management strategies through an implanted morphine pump or through placement of a spinal cord stimulator (SCS) similar to the one he used from 2000 to 2006. During July and August, we struggled with a sense of hopelessness. We were told that a morphine pump may not provide significant pain relief. In addition, the removal of the last SCS due to infection in 2006 had left significant scar tissue making it complex to replace. It seemed that there were no options. Through the year we counted heavily on family and friends for assistance in our home with the hope that things would improve. We realized we would need help for the long term. An assessment by the Community Home Health Care office led to 40 hours of funded in-home support per week. Starting in September we are grateful to have Rose as a support worker in our home 5 days a week. This allows me to find new ways to be a companion to Rod (rather than a caregiver), to continue my work with MCC and to support Anika and Joya in their active lives. Through Home Care we also have access to other professionals Occupational Therapist, an excellent psychologist and nurses, when needed. We are also grateful to the incredible doctors at the pain clinic in Denver who directed us toward a new SCS device that is used in Europe and for which trials are beginning in the USA. The value of this device is that 1) it can be placed almost anywhere in the spinal column, thus avoiding Rods scar tissue, 2) it covers pain without creating a new electrical shock sensation, 3) it effectively covers pain up into the lower back as well as legs and feet, 4) implantation in Netherlands is roughly half the cost of the USA. We are currently applying to Alberta Health for Out of Country Funding to cover the procedure. We will hopefully have an answer by end of November and travel soon thereafter. This is a glimmer of hope. Thank you, thank you for walking this journey with us through your visits, calls, letters, thoughts and prayers!

Rod, Susan, Anika. Joya