by Anti- Heroin Chic
What becomes of us when our lives suddenly turn uncertain, stricken with debilitating, dire illness? How does the spirit learn to breathe, day to day? Friends, family, creativity, faith, they move us even when we cannot. Through them we survive and feel our lives not in vain. Taking up the warm hand of a loved one, writing a poem, the small and the ordinary, the large and over looming, we learn even while we die, and while we live, what else can we do but hold on for dear life? To make the time we have matter, as painful as each minute can sometimes be. As Chrissie Morris Brady faces the grim realities of her declining health, she does so with courage, authenticity and hope for others. “When light seems to be missing, I must ask God to show me where it is, what am I blocking it with?” asks Brady. “Light puts out darkness, and even in the night we have the moon and the stars. I am a pretty broken person so there are cracks. That’s how the light gets in.”
AHC: Could you tell us about your experiences living with the illness that you are facing and about the illness itself? How you have mustered courage and acceptance through such a harrowing ordeal? Where have you found your guiding light or inner thread all these years?
Chrissie: When the illness first appeared, I was very athletic. At first, I could not control my left hand so I began writing with my right hand. But it became noticeable and I would be asked if there was something I wanted or needed to talk about. I never knew what to say. Subconsciously, I wanted to express that I was bewildered by my left hand. It did not seem to be fully a part of me. I guess I tried to ignore it, bury it, as it was not every day that the symptoms were evident. Being ambidextrous, I would use my left hand on the days I had no symptoms. I guess my parents took me to our doctor fairly quickly. They were told I was attention seeking. Later, I was referred to a psychiatrist who asked me if I thought I’d lost my penis and similar questions. I recall giving one-word answers that I thought would please her. I thought she was insane.
My Dad would have been my strength at that time, and the continued friendships. Also reading, I read so many books, I just found such safety in words.
Little did we know I had contracted a lethal disease, that would almost take my life. I eventually became twisted up by excruciating muscle spams, having lost significant weight, with my left arm and leg flying around uncontrollably
AHC: You wrote recently that you have no fear of death itself. That the fear that comes to you stems more from the flight or fight response. How did you reach this place of acceptance and not fearing death itself, it seems a terribly high internal mountain to have climbed in order to not fear the end?
Chrissie: I don’t think of myself as having climbed an internal mountain! I see myself now as Chrissie, the woman, a social campaigner and, maybe a poet. When I woke after my third brain surgery – I had four, conscious,- but during this one I had ‘snapped’, screaming with fear and isolation, and having had enough. More than enough. I remember lying in what I thought was some sort of anteroom to God’s judgment, and I thought, ‘I don’t know God’.
I initially set aside my thoughts that I didn’t know God. On finally doing rehab and speech therapy there was so much rejection in society for me, and no more athletics, that I couldn’t equate knowing God with such an arbitrary occurrence in my life. I had no difficulty believing in God – the beauty of nature declared him to me all the time. It was a few years later, that I started to ‘look for him’, and in all honesty, I fell in love with God. Having gone through such horrendous surgeries, having been in locked in syndrome, having faced so much rejection and discrimination, death seems like going home to a safe place.
AHC: You also go on to write about the small kindnesses and every day graces that you fill your life, the things and people you are grateful for, has this gratitude, in the face of pretty scary life-effects been a work in progress for you through out the years, taking stock, through the pain, of what and who makes this journey a little more bearable? What or who are you most grateful for today?
Chrissie: I started to work for an international charity, and, seeing so much unnecessary poverty and disease in less developed countries, I decided to be a thank you letter to other people. Not just those I served through my work, but my colleagues. I smiled a lot by nature, and it didn’t feel hard to do a little extra, an act of kindness, fulfilling a need if I could, instead of ‘hoping that works out’. I spent three years in California, working with people in recovery from drugs or alcohol. I was amazed by their response to love, rather than ‘these are the rules’. Of course, there is always a time to point out the rules, it’s just that love and compassion seem to go so much further. I did my best to follow the teaching of Jesus, and I find the simplicity of his message both challenging and rewarding.
It’s been the last three years, since I was told remission was over and that exposure to damp had taken away my lung capacity that I had to find more meaning in my life. I had written poetry in my teens had taken it up again when my daughter went to school full time. Poetry was a way to express my creativity, my political frustrations, my longing for an alternate life, and memories. Now I felt something of what had befallen me should be shared with people I might not know in the hope that something I’ve gone through, experienced or overcome might resonate and bring a sense of connection, relief or hope to others. My daughter makes this journey more bearable. She is delightful, talented, and I adore her. My goddaughter also brings me joy, and so many of my friends who are now scattered around the globe, a friend who is a vicar who turns up to do any number of strange tasks. I’m grateful to friends I’ve lost to cancer for their bravery, and though I miss them so much they have given me so much.
We tend to take so much for granted that it’s easy to lose wonder. I look at the sky at night and feel awe. I look at flowers, leaves, trees, animals and see so much beauty and imagination. I don’t know if I have heightened awareness because I’ve been so close to death, but I feel such appreciation.
I’m no Pollyanna, I feel no compunction to see good in everything. There are heart-wrenching events all the time. I do my best to highlight these and be part of change for the good.
I am so grateful to my Dad, John Morris, who taught me grace and a stoicism that is not ‘stiff upper lip’. My mother complained about everything, made a drama out of nothing and I had no peace in her presence. I would sit with Dad for hours, reading, or watching a western, walking in Purbeck or the forest, birdwatching. He died peacefully in my arms last March.
AHC: Has poetry been a coping or acceptance mechanism for you through this illness? Has creating and writing it out, felt empowering, like lifting a lid off a steaming pot, a release of hot air rushing into the open, allowing you to breath a little, even if only mentally, spiritually?
Chrissie: Poetry has been neither of those things most of the time. It certainly is breath, though. Poetry is so many things – a photo of a moment, a story, an outburst of anger. But deep down I’m just a person like any other person. It’s hard to know how much this disease has shaped me my personality. Poetry satisfies something within me for sure, the love of words, the expression of something elusive or a metaphor for the obvious. Certainly, it sustains me but so does my daughter.
AHC: What are the life lessons you are learning at this season in your life? You deal with and toil under uncertainties shadow, but feel and reflect so much of the sun and of life. Many of us forget to do that and we aren’t up against a thing as big as this, what advice do you offer others about appreciating and cultivating higher ground in our daily lives? What are the darker moments like, when that light is missing and you search, high and low, for reminders, remainders?
Chrissie: The biggest life lesson is gratitude. I am grateful that I can see, hear, taste, feel, laugh etc. Friendships are so important and connecting in a more distant way with poets, publishers, and other like-minded people. Letting people prove themselves before I open up to them – I have felt misused so many times. Forgiveness, I know I need it so many times, so who am I to withhold it?
My darker moments can be torment, when a symptom bothers me, or there’s a leak in the bathroom and I must deal with it. When light seems to be missing, I must ask God to show me where it is, what am I blocking it with? Light puts out darkness, and even in the night we have the moon and the stars. I am a pretty broken person so there are cracks. That’s how the light gets in