Having blogged about It’s Good to be Here (Sophia Press), the reflections of Christina Chase, who was born with spinal muscular atrophy (SMA type II), I decided to follow it up by contacting the author to learn more about her life and faith. I tell her that what caught my attention was the epigraph at the beginning of her book: “The glory of God is a human being fully alive, and the life of a human being is the beholding of God”, a quote from St Irenaeus. What made her choose it?
Christina tells me it is one of her favourite quotes. “Often, we hear only the first part, but I think that its entirety encapsulates the meaning of life. Here is the intimate connection between God and Man; the authentically lived life of a human being glorifies God, and an active relationship with God is what gives true, full life to a human being. We are united to God in a communion of love.”
She adds, “Throughout my life, I have sought, both consciously and subconsciously, to be “a human being fully alive”. Who doesn’t want that? But what does it look like? God our Creator shows us by becoming one of us and lovingly living a human life Himself – a divinely human life of struggles and delights, or sorrow, pain, generosity and compassion. When we behold the man Jesus and recognise Him as God in the flesh, and then lovingly follow Him in our particular lives, we become incorporated by God into His glory. This is the astonishing power of divine love in the Incarnation. This is the sacred wonder of being human.”
At the risk of being intrusive, I ask Christina what she finds the hardest thing to bear in her life. She responds with great honesty that it is “loss, irretrievable loss. I’ve suffered the loss of physical strength, movement and simple abilities throughout my life because my progressive disease makes me weaker and weaker every year, relentless weaker. For example, I stopped being able to fully feed myself in my late teens and can’t feed myself at all now. Driving my power wheelchair has become very difficult and I can feel the increasing labour in my breathing.”
“Some things that I enjoyed doing, I can no longer do, and things that I would have loved to do – like becoming a wife and mother – will never be part of my life because of the progression of my disease.” Christina admits that “the severe dependency on others that the loss of strength causes can be frightening, especially when I think about the future. Thankfully, by the grace of God, I have discovered that depth and wisdom can come through hardships and that what is truly most important in life is never lost.”
What has been her greatest blessing? She responds that it is “always having known that I am loved. It breaks my heart that not everybody knows this – even though every human being is infinitely and intimately loved by God. I’m eternally grateful for the blessing of my parents, who were the first to help me know the reality of unconditional, self-giving love through their willing sacrifices, good humour and affection.”
Christina tells me that her parents have been “images of God for me, reflecting divine love, even when I didn’t recognise them as such, even when I didn’t recognise the reality of God’s love. In my loving family and fairly happy childhood, I thought that I knew what joy is. But in coming to know the source of all love, the source of all life, I am coming to know true joy – the infinite love and joy that is eternal.”
Reading her book (she also blogs weekly at authorChristinaChase.com), it is clear to me that Christina has a strong sense of mission. How would she describe her apostolate? She tells me that she believes “God is calling me to help others understand that they are infinitely and intimately loved by their Creator, that every human life is sacred, beautiful and important in the eyes of God, who desires each person’s eternal fulfilment. Isn’t this the good news that Christ commissions all of us to share? In our fallen world, we too often reduce our fellow human beings and ourselves to merely useful objects. When we fail to see any practical purpose for someone’s existence, or we no longer feel pleasure from our own, we may think that life isn’t worth living.”
“But God chose to become one of us. Was Christ any less divine when he was utterly dependent in the womb and the manger, when he was ridiculed, weakened and immobilised on the Cross? God in the flesh restores human beings to the glory for which they have been created and I want the world to know that nothing – not suffering, disease, disability, poverty, hardship, pain – can render human life less than human, can make any of us unworthy of love. To be alive is a terribly beautiful gift of divine love, experienced now and fulfilled eternally.”
Lastly, given the constraints upon her life, I ask Christina to describe her daily routine. She relates that it is “rather complicated, because I need someone else to do every physical act for me: brushing my hair and my teeth; bathing and dressing me; putting food and medication into my mouth; carrying me from bed to wheelchair and wheelchair to bed; putting a bed pan under me and cleaning me afterwards; I gladly share these particulars publicly because I want people to understand that they don’t need to fear dependency. Other people can’t take away your dignity, no matter how crass or uncaring they may be; your dignity comes from God’s love; you can only lose it if you becoming deliberately and defiantly unloving.”
Returning to her daily routine, Christina says that she needs “to sit while eating and remain up for an hour afterwards. Twice a day I receive chest percussion therapy to keep my lungs clear, a chore that takes time and a lot of effort from my caregiver. I need four shifts of about two-hour hands-on care daily, both throughout the day and even at night. My loving parents have always been my main, and quite often, sole caregivers. I’m also grateful that I have compassionate home health aides who help for a couple of hours, several days a week.”
She explains that she uses “a computer dictation system to write reflections for my blog, poetry and chapters for my work-in-progress, usually writing after breakfast and again after lunch, when I’m in my wheelchair. This is also when I do tasks, like answering emails or fulfilling my volunteer work for my parish’s website and Facebook page. When the weather is nice, I enjoy being out of doors, taking in the beauty of nature and thinking about life’s big questions.”
“My prayer life consists mainly of informal conversations with God throughout the day, as I am aware (sometimes more than others) that He is always listening to my thoughts. I also pray the Rosary and Divine Mercy chaplet in the afternoons when I rest on my bed, then listen to an audiobook if I have time. Sometimes I don’t get to the afternoon prayers, but I always try to get them in before bedtime, at which time I prayerfully review the day. After supper with my parents, I watch a recorded broadcast of the Mass.”
Christina adds: “Most every morning I wake up with gladness for the day, call for one of my parents to take off my BiPAP machine (which I require for sleeping so that my oxygen level won’t drop below 50 per cent) and thus begin being cared for. In the silence of waiting in between and during tasks, I think and plan, pray for my loved ones and special intentions and make a morning offering to the Sacred Heart of Jesus. I used to forget this offering, or make it too quickly, but then I turned it into a song. I am a highly imperfect singer, but I joyfully and lovingly sing.”
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