Light puts out darkness: An Interview with Chrissie Morris Brady

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

Advertisements

End of Year…

It’s a while since I wrote about my health… I do procrastinate because of the honesty it takes. I’m so used to hiding with smiles and the way I use words.

I lasted for about three and a half hours on Christmas Day. Otherwise known to some as my birthday. I watched Love Actually in the morning, in bed, with my daughter, after she had given me my birthday presents. Then I dressed and we had a great Christmas dinner with Michael, which he had cooked. I was full so quickly, and the few sips of cherry brandy had made me warm.

We started opening Christmas presents and chatting. After a while I felt so hot and so full that I couldn’t bear to be upright. Michael had to help me get into a summer nightshirt, and I lay on my bed. I felt defeated and tried to focus on what had been good; eating together, sharing gifts, chatting. The birthday wishes. The time alone with my daughter which is becoming less frequent these days. I will always cherish that and I am grateful, whatever else the day brought.

Now I need a day’s recovery after a hairdresser’s appointment, after going out for a meal or afternoon tea with a friend. If I am recovering from some exertion and I’m not fully recouped when a date with a friend has been arranged, I am sometimes not even well enough to have them visit me at home. This is especially hard for me. When we are limited to my home, my friends make the tea or coffee as I spill and find it painful and unsafe to handle boiling water.

My breathing seems to be in a new phase. I now don’t often feel as though my lungs are empty. I just breathe very shallowly. I don’t often lie on my back, I sleep on my side or stomach. But sleep is rare, and most often comes in the morning after a night of tossing and turning. This is difficult. It means I miss a lot of daylight, and messes my body clock even more. So I’ve arranged to speak to the doctor.  I want to find out if having oxygen will help me, if my lungs can absorb it, and what it is that causes me to feel such dreadful heat inside my body. If I could be free of that, my quality of life would improve a lot.

So here I am, my honesty is at full tilt, and this is the only place it is. I don’t think I could get through life if all this were at the fore of my consciousness. I don’t deceive myself, I just don’t think about it. I would go a bit crazy if I did, I think. Mind you, my self preservation does work. I take far fewer risks than ever before. I guard my body as well as I can.

For My Goddaughter

Published by  Anti-Heroin Chic

perhaps you must be a butterfly,
knowing darkness before your
flight.
the damp unfurling of your wings,
in the warm light of a new dawn.

we thought you were flying,
no one saw this coming.

you will be stronger for the wait,
brighter through the flame you thought might
burn.
no one can singe you now, what might have
dimmed you makes you shine.

no one saw it coming,
you have wisdom now

gained through pain and searing, not a moth
drawn to every light form with no
guide.
most glorious of colors in flight,
you gaze at you with newborn awe.

no one saw this coming,
that you fly higher than before

 

 

 

I am here…

I didn’t think I’d be writing this now. I don’t mean at 6.17pm on 13 08 17. I mean I didn’t think I’d be well enough or even still alive.

That said, I often feel half dead as I gasp for air, wondering if this is what a fish feels like when it’s lying on the deck of a boat, waiting to be killed and cleaned. The sensation  I get in my chest is like an emptiness where there should be something. Not a solid thing, but air, something that will come out through my nose or mouth. Or will fill my chest by coming in through my nose or mouth. Instead it’s as if my lungs touch my chest walls, rather than moving in rhythm in air, a compound containing oxygen.

My body’s first response is fear. Aren’t we supposed to breathe and supply our bodies with the oxygen it needs involuntarily? Like riding a bike, only much, much more easy than riding a bike? Isn’t it the first thing our body starts to do after we’re born? We breathe. We keep breathing, with only tiny intervals like when we have labour pains and we gasp with the agony, or we dive into a pool. Those sort of gaps seem fairly normal. But to walk a few yards, or turn over in bed too quickly, and feel nothing in my lungs? Fear. The fear of death. Of not being able to explain.

I have no fear of death itself. The fear that comes to me is from the flight or fight response, except that I can do neither. A little bit of fight, that gets me some air inside by altering my position, and no sympathy because my struggle is misunderstood for ‘anger’ and I criticised and judged. Or that is how I feel I am treated.

There is nothing elegant or ‘feminine’ about gasping for air. Quite the opposite. Trying to get air into my lungs makes me feel clumsy, jerky, spasmodic. Trying to cough my throat clear has the same effect. It’s a no win, no win situation. Even my loving, protective dog runs out of the room when I need him to love me.

I am grateful for my bed, which has just the right firmness/softness balance for me, and lets me lie in the ways that are conducive to breathing. I am grateful for the swing seat in the garden, on which I can lie on my side in sunshine, taking in air. I am grateful for my ceiling fan in my bedroom, which moves air around on hot airless days, and cools my skin when the struggle to breathe makes me unbearably hot inside my body.

I am grateful to those who prepare my meals, bring me drinks and the other things I need to survive. It’s wonderful that I live in such a wonderful place, and that I can see some of it from my window.

And to those few friends who have stuck with me, I thank you.

 

 

 

 

Laugh Your Way Through Writer’s Block – guest blog post by Eileen Murphy — Trish Hopkinson

If you’re blocked and can’t write, what’s the best way to get yourself pounding the keyboard again? Or let’s say you’re like me and you have a routine, so you force yourself to write even when you’re blocked, only to discover you’re producing dreck. What to do? Remedies for writer’s block range from jogging to […]

via Laugh Your Way Through Writer’s Block – guest blog post by Eileen Murphy — Trish Hopkinson

On Racism

Please forgive the color of my skin. It says nothing about me except that I have certain ‘privilege’ that I did not demand, but should be the right of every person on this earth. I admire your writing and your critical thinking.

I want to say that adding ‘ness’ to white does not mean one is bashing privilege or the institutions. The founding fathers did not want ‘blackness’ in what became the USA. A black man not,  was two thirds of a person. No woman counted. The founding fathers realised their constitution was not perfect or just, and believed that future governments would correct and amend the constitution they wrote in a rush in Philadelphia. The only concession made was when Washington, in the South, was made the capital.

To say ‘whiteness would rather die than eat food from black hands’ is racist. To say the institutions discriminate against blacks  and the poor directly and indirectly’ is not racist. The institutions of today have black members. Blackness attacking whiteness is racism. There is no such thing as ‘reverse racism’. Society favours white people, especially rich white people. Everyone should fight this in every way they can.

A leap on this Odyssey

So the anti-biotics in January became two courses. My breathing became quiet when I am still. My walking distance gets shorter and shorter, but that’s mainly ok, as I rarely go anywhere with Michael.

I attempted to purchase a mobility scooter online. It promised smoother ride and folds up cleverly to put in the boot. The abbreviate a long, horrendous story, I used it once   and it shook me around like a bucking bronco and made such a noise that I felt incredibly conspicuous. I was left in tears from pain and frustration and anger that so much is complicated  about having disabilities. In The end, Michael took it back to Preston in the car, which took over seven hours as there were road works. I am so grateful.

On the 12th of March I requested that my Dad stay in bed: he was so tired and could barely muster a smile at me. The next day he ate little but drank. The next day I went in and offered him yogurt, even leaving a tiny bit on his lip so he could smell it and maybe taste it. I had to wipe it away. He took some water for almost the last time.  On 17th March, he was hospiced within the care home. The GP brought in Controlled Drugs and and the few medications he took orally were stopped. He was given a mild opiate in a patch to keep him pain free, and before he died he only had three child doses of morphine. He did have a fever initially, but I wiped his skin with cool damp cloths and kept his covers light. I gave him mouth care in the hours I spent there everyday, as this was something I could do for him, an act of love.

Dad’s last birthday came and I sat with him, telling him it was okay to go, to please let go and be free. I sent my daughter home, and climbed onto his bed, putting my arms around him. I dozed a little, on and off, but awakened suddenly at 1.15 am. Dad was no longer there. I climbed off his bed, closed his eyes and bade him safe journey.

The staff were amazed when I told them Dad was gone. The nurse had only been in a few minutes before and did not suspect end of life was near.

I will miss my Dad more than I can say. He gave me so much. The response to his death has been unanimous – ‘lovely, lovely man’, ‘I loved your Dad’, ‘such a gentle man’, ‘if we were all as content as your Dad, how rich we would be’.