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’.

This Odyssey at start of 2017

This year started with antibiotics. My breathing was so noisy and my lungs so empty that it was thought another course of antibiotics would help.

The effect on me whilst taking them was not pleasant – I had cold sweats, nausea, my body burned with fever, but most of this had been going on anyway. The dystonia means my body can’t regulate its temperature at the best of times.  Worst of all, I felt ‘ratty’ and fractious, and I really hate that.

I craved omelettes, and my (ex) husband makes them just how I like them, so that made me feel loved. And brioche has become my main food – it is soft, vaguely sweet and filling. It helps me get to sleep.

I started the year being able to fall asleep around 10pm -11pm and sleep until morning, but gradually it shifted and now I can’t sleep at night and sleep through the day, which I also hate. It will gradually right itself again. I get to watch the moon in its phases, which is awesome over the harbour and I’m watching series 12 of Grey’s Anatomy over again. And will do again.

I’m in a state of ennui. I do things by accident rather than purpose, and I’m not comfortable in this mentality. I’m reckoning if I can weather it, it will pass. I want to order more of my affairs so that things are easier when I die. Both in my personal life and in my writing life. (There is little distinction to me.)

I’m grateful for a deepening relationship with my daughter. I adore her. She is wonderful. Awesome. And for the love of my omelette maker.

So, my breathing is quiet again, and I don’t get the ’empty lung’ as often. It was six months since the previous antibiotics, so how long until the next?

More on my last step on this Odyssey

My dog proved to be my best friend when I was feeling so ill after my night of pains in my tummy.

The morning had been tolerable and we visited my Dad. But during the afternoon I felt very ill and weepy. I kept thinking about my daughter as a new born baby, wishing time could go back, thinking of all the thing I did in running a home and being a wife and mother. Now, I am breathless after two yards. And the dystonia comes in waves.

At some point,  a strangeness overwhelmed me. I began to feel a sensation take over my body. My dog jumped up beside me on my bed and put his paw on my chest. His ears were forward and a quizzical look on his face. I laid my hand on his neck, comforted by him, and he stayed until the wails that came from me disturbed him and he went to lie on some of my clothes.

As he did this, I suddenly realised I had not taken a medication the previous evening, and as I looked for it, it dawned on me I had missed a couple of doses. I was in withdrawals. No wonder I felt so utterly wretched. I took a dose, and lay weeping as my emotional state was withdrawal induced.

I thank God for my loving and beloved dog, his devotion and empathy. His unconditional love for me. Not for the first time either. Over the years, his devotion to me has been evident so many times, in so many ways.

I am now more myself. I had discovered hemp tea and had my first cup last night. Wih some honey, it is very soothing and although my ex husband, who is staying here as my daughter is away, said some thoughtless, hurtful things, causing adrenaline to flood my body, I was asleep ten minutes afterward.

I am grateful for my friends’ response to my last entry. Their love, compassion. and appreciation of my journey. That is such a gift. I have had good gifts in the last few days and I must scoop away the dross that comes from the refiner’s fire,

More Steps Along This Odyssey

It’s been a while again. Talking about the here and now is harder than telling the past. In truth, I often feel as though all that trauma happened to someone else. Or it happened to me in another dimension, when the person I am was much less sophisticated and complex in my personhood. That, at least, is true. My experience of life was so much less.

In the last few days, I have felt so tested in everything I believe. I have at times lost sight of the beauty that is formed under pressure. My eyes have been drawn only to the unbearable weight of things that I want to be better, not necessarily for me but for a beautiful, talented and wonderful person to whom I gave birth, whom I adore, worship, would die for.

I have been struggling to not focus on the difficulty I have in breathing. At times it is because I’m tired or move too quickly, but other times it is because the dystonia tightens my chest muscles. Then, it is not only difficult to breathe but also to be. I move around trying to relax, I squirm with the tension in my muscles and the discomfort, pain, it brings. It’s like that now, as I type. I had stomach pains all night that kept me awake from 11pm, having slept during the evening. All I could eat was porridge. So today my body is at sixes and sevens, feeling sleep deprived in my brain and thinking. And so much tension in my body.

This is when I sometimes need the assurance of others, as my perspective on other things that press in from life loom larger than they actually are or, in my distress, I let those things become my focal point rather than the good things, the precious gifts in my life. I reached out in the night for support knowing the person would be awake.  When a response finally came, it was ‘shit happens’.

Well, I know this to be true. I’ve had the share of several people. It was not what I needed to hear. I needed empathy. We all need empathy. Even when I need, in my profession, to remind people that shit happens, I tinge it with empathy. What I needed was an empathetic ‘Chrissie, we can all feel swamped in the middle of the night when we are in pain. That sucks, I’m sorry you’re going through this stuff but it will seem better in the morning’. You know, words to that effect.

I learned a lesson and remembered a key thing. Not everyone you reach out to or for, is the right person at the time or for what you need at the time, at any time. Different friends have different gifts for us. For me.

I have been reminded of the good in my life because my cleaner arrived. She is fantastic and my gratitude for her overflows. My daughter walked into my room. Love floods me whenever I see her. (It may not always be obvious to her, but it does.) Even when she thinks I’m having a go at her, I am filled with love for her. She is magical.  I saw my Dad this morning. I love him so much and wish he could slip away to a better place, but his body is so healthy that he will keep going even when his brain has completely died except for the pituitary gland, which will keep his heart and lungs going. I am shocked now that I have thought of him in this way, reduced him to a motor function. My Dad is warmth, affection, reason, moral strength and so undeserving of this pitiless disease.

I am grateful for the grammar corrector I use, otherwise this would make no sense at all.