A Stitch in Time

Some years ago, I had a rather significant operation. I called it the ‘hitch and stitch’. An internal lady parts renovation. One part of that renovation called for my uterus to be stitched up via my pelvic ligaments to my spine. It was a great thing to do, for good reasons, and it worked. But the stitch on the left side seemed to be the cause of debilitating pain through my pelvis and down my left leg and ankle. I’ve been managing it since then; pain, pain meds, the endless juggle of when I can take them and have the relief I so need.

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Waiting for surgery.

When you are taking really strong meds, there are some things that just aren’t right to do, like drive your kids around, or work. You can’t rock up to a teaching or a modelling job with a floaty head because you’ve just taken your oxynorm. So on the days I worked, I just had to deal with the pain. There have been many tears shed or short words delivered to my nearest and dearest when I am back home after a day of smiling through pain.

Pain sucks.

I’ve learnt to adjust things as I go. Thinking all the time “can I take my pills yet? When will they kick in if I take them now? What else do I need my brain for today?” and then, the pill is swallowed and the other-worldly, floaty absence begins. Sometimes, when it kicks in, I cry with relief.

I am still aware of the pain when I take my pills, but I no longer care about it. Unfortunately, I no longer care about most things when I am in that state and finding words is a challenge. I might drift off mid-sentence, or repeat the same thing multiple times.  Writing for this blog doesn’t work when I am under the influence of my pills, or doing the freelance work I used to enjoy so much. So I’ve written less.

Managing pain meds makes me anxious, because I don’t want to give myself an addiction problem. I also hate my kids seeing me like that, tuned out. I often don’t take my meds when perhaps I should for that reason. But what can you do? Life goes on. Mother work doesn’t seem to be outsource-able. Pain just exists and we survive it. Centuries of women have dealt with women’s issues and got through. And if we can’t, we fall in a heap for a while… and if we’re lucky, the troops rally.

I have felt so fortunate to be in remission from Pandysautonomia that I have felt I cannot legitimately complain. I mean, my life, even with pain is so much better than before. So mostly, I have just shut up about it. People don’t generally want to know anyway.

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…suffering isn’t usually something it is socially acceptable to ‘selfie’

The day before yesterday was an important day for me.  I had a surgery to attempt to fix the problem with that stitch. My uro-gynae surgeon is Tim Dawson, one of the worlds finest medical people. He’s so kind. Previously he had done a hysteroscopy and identified the inflammation, and the location, of the rogue stitch so he knew exactly what to do. We are fairly certain this is the culprit. And here it is.

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This little stitch caused me a lot of grief!

My arch enemy, the cause of my pain, the author of all that suffering. It’s so small! But so are the nerves it harassed. Aggravated nerves can pack a wallop of pain when they’ve been bothered for a long time. When the nurse handed that stitch to me in a specimen bottle, I examined it closely: my Evil Nemesis. I thought about how much I hated it, that small but powerful stitch. I felt like you might feel if a scary spider that bit you is trapped in a jar. Like a victor.

Now, we wait. We wait for the bruising and dissolvable stitches from the operation to repair. We wait for the other procedure he did (an intra-uterine ablation) to heal. We wait for a good number of weeks on strong pain relief to see if my brain can cease firing on the same old pain pathways. And then, we’ll know if it worked. I feel hopeful.  I’ve been working with the Pain Team from ADHB and they have been so outstandingly helpful. They made sure that this time, there would be no re-admission to hospital from pain flare. I’m so lucky to have access to that team, they really know their stuff.

Wouldn’t it be great if removing this stitch in time, saves nine!

Here’s to all you ladies, who like me, never seem to have an easy time of the lady-parts-shebang. To all the girls suffering with difficult periods, menopausal madnesses, fertility frustrations and women’s woes. Here’s to you, to us.  We often don’t discuss these things because it is awkward, or embarrassing, or deeply personal. But if you are out there hiding in plain sight, suffering because of your lady business, I send you solidarity. Hang in there sisters!  The other side of menopause shines like a beacon of joy just over the horizon!  Let us sally forth!

And especially, here’s to the ladies who stood by me, offered to help and made me feel okay, to Pru and Tamra, to Flo my ever-wonderful bestie, to Mo and Toni, Noodle, Bunny, Bee, Nettie and Trissy.
Sisters in biology and sisters in soul. I am lucky to have you on my side.

Just look at what we can do even WITH the difficulties of our ‘downstairses’.  Women are incredible!

Complex Regional Pain Syndrome (CRPS)

I haven’t talked much on this blog about pain.  In fact, for a long time, I preferred to ignore the topic.

Where does it hurt_(1)

Many of my friends in the invisible illness community have concurrent diagnoses of Complex Regional Pain Syndrome, and within my own family, my sister has been dealing with chronic pain for most of her adult life. It is a debilitating and exhausting challenge for the body and mind.

I previously had neuropathic pain with my Dysautonomia. Peripheral and abdominal mostly. And then I sustained nerve damage during a gynae surgery three years ago. However, the distractions of my primary diagnosis meant that it wasn’t immediately clear the surgery was the cause of my pain. I’d had a steroid injection to the site after the surgery, then gradually over time, my pelvic pain returned and increased. It affected my gait and had a dramatic impact on my mobility. Walking with a cane possibly exacerbated it, but without it I would have been unable to walk further than ten metres. It hurt so much. The pain extended from the left inner pelvis, down the middle of my left leg into my ankle. I found osteopathy helpful. I took pain medications (gabapentin and oxynorm) and modified my life. I thought that it was just another curve ball thrown at me by my dysfunctional body. I didn’t connect it with the gynae surgery. Or at least, not until after the six months of methylprednisolone infusions; when my pain disappeared completely.  That’s when the lightbulb went on for me.

When an awful symptom is removed and you experience life, pain-free, it makes you acutely aware of how much it was affecting your life.  I realised both how bad that pain had been and how long it had been bringing me low. As I weaned off the steroids, the pain returned.  I had another, more minor, gynae surgery.  This time, the pain post surgery was excruciating. I was certain that some medical misadventure had occurred. The specialist in the hospital explained that they couldn’t find cause for the level of pain I was in. I agreed that a referral to the pain team might be useful.  I was in remission and just had this pelvic issue to sort out.  Eager to get beyond it, I was keen to try anything.

The Gynaecology Pain Team have been so wonderful. I see an anaesthetist, a pelvic phsyiotherapist and a psychologist.  They believe that pain is exacerbated by a number of factors, and first introduced me to the concept of complex regional pain syndrome. This is what my psych wrote in her last clinic letter:

“We concluded that following 32 years of neuropathic pain from [auto-immune neurological disorder -Pandysautonomia] and three years of neuropathic pelvic pain she will, in all probability, have central nervous system sensitisation”.

That just means that my nerve pathways over time have amplified my pain signals. My body is in pain, and the pain I feel is more extreme than might be felt in the same scenario by someone who hasn’t been experiencing chronic pain for a long time. The longer you have pain, the worse it feels.  But don’t worry, things are in hand here; I am managing fine with all of the measures we have put in place. I have another surgery scheduled for August, when hopefully we will have a clear direction for treating the nerve pain. I am hopeful we can reduce it significantly.

I thought there might be others who can relate to this part of my story. If you want to read more about CRPS, look here.  If you are in New Zealand and have been diagnosed with Complex Regional Pain Syndrome too, you could join this facebook page. And for a quick overview of invisible illness (yes, CRPS falls into this category) have a look at this  clever infographic by Victoria from www.burningnights.orgThank you so much for sending me your infographic, Victoria.

 

Source: http://www.burningnightscrps.org
Source: http://www.burningnightscrps.org

 

 

Sunshine

The winter sun seeps thin and white through the cloud cover.  The rains have been sporadic, like the tears of grief when not one year, but two have passed. When the irrefutable fact of her passing has seeped into your bones, and you know, there is no going back.  The rain connects across the Tasman in great arcing fronts. Every year on this date, stretching between countries, across time, back to Kellie’s death, and to her friends and family. Reminding me that time is passing, but the grief doesn’t.  It just changes, like the weather. Shifting the pressure and moving the isobars.  Hail today, rain tomorrow. Some snow among the chilly grey.

rememberingthis beautiful ray of sunshine

I think of beautiful Kellie.  Of how short her life was yet how much of a life force she was.  I imagine her directing the weather like a Greek Goddess, goblet in hand, laughing at the storms.  Revelling in the thunder and sending out lightning from her fingertips; her anger and joy all rolled into one vibrant and terrifyingly beautiful heavenly creature.  Making her presence felt in the skies.

I think of her family with my own mother heart. It’s so unfair that they have to do life without her. I hope they are okay, two years into their marathon. I hope they are finding their own ways to keep her close, to remember and celebrate her astonishing vibrancy. I stand with her friends and family, across the ether, raising a glass in acknowledgement.  That Goddess woman. Gone but never forgotten.

She was sunshine. Straight up, sunshine.

Here’s to you Kellie. X

(I like this version)

 

 

Going Up

oing up

For the chronically ill there are a lot of visits to the hospital. Not just admissions, there are also visits to specialists in hospital outpatient clinics. I am very familiar with the Level 6 clinic at Auckland Hospital.  I’ve been going there for years.  Gastroenterology, General Surgery and Immunology all run their clinics from the same place, the pathology rooms are just down the hall. The neurology clinic happens just upstairs. On a regular rota I have been seeing all of them. And today, I went for what I hope will be the last time. I know I can’t expect it will be forever, but why not hope?  So many of my wishes have come true lately, so many lucky things have been happening for me.

My immunologist is a quiet-spoken man. I’ve written about him before, he is a superhero, that kind of doctor who restores your faith in the medical system. After he invited me into his office he said in his measured voice “What’s been happening?”

“LIFE!” I enthused, “I’ve been busy living life!” His lips twisted in that lets-be-scientific way and he asked a different question, followed by some more. He looked at my file, shook his head and smiled. We discussed how strange (but welcome!) my remission is. He used a word not many doctors use: “miraculous”. And he used it without even a hint of tongue in cheek. He explained that they had searched high and low for an objective test that could unequivocally demonstrate the difference in my condition from before, to now. They just can’t explain it. I observed his wonder at my remission with mild surprise. I forget sometimes, what a different person I must seem to him, this new life fills me with joy, but I think the shock of the change is fading for me. Today, I’m wearing bright clothes, coordinating accessories and my face is fully made up. Even my nails are done, thanks to my new side job. The Rachel he met a bit more than a year ago sat slumped in the same chair, colourless, exhausted and nearly defeated.

“You were so symptomatic…” he reflected. “And look at you now!”

He agreed that I don’t need to attend clinic anymore. And that means no more Auckland City Hospital!!! I’ve never been so happy to farewell someone.

“Come back if you need us again, you may need to have another course every few years, but hopefully not,” he smiled.  Then he stood and said “…well then- give me a hug!”.  We hugged, patient and doctor. We hugged in that slightly awkward but full of feeling way, and I hoped that flowing through my arms he felt my gratitude. I stumbled over my words, something about wishing there was a way I could adequately…
“Just keep doing your good work” he said.

I grinned at him, waved, and walked out of that clinic.  Past all the chairs where people less lucky than me sat, round shouldered, weighed down by their health burdens. Past reception, where my file would be handled for the last time. Through the foyer, past the best barista in Auckland, who has served me more coffees while I’ve been in my hospital nightie than in my street clothes.

By the time I reached the carpark lifts, my heart was already soaring.
The elevator doors opened “…going up?” asked the man in the lift.

“I believe I am” I smiled, stepping inside.

Shipwrecked

There is a specific kind of guilt that can plague survivors who got through something life threatening and come out the other side. Maybe it was an accident, trauma, war, hostage situation, cancer, domestic violence, child abuse, hurt. The guilt swoops in once they realise that they survived but others did not. So the question ‘why me?’  ghosts through their minds, shining spotlights onto every part of them that is not worthy of the gift of survival.

I do not deserve this. Everyone does. So why did it happen for me and not for them? How can I make sense of it? What hierarchy of soul assets could ever possibly qualify me to deserve reprieve when others get none?  None of what I have within myself is superior to any other human. Is it all pure chance? Luck? Universal benefaction? Godly miracle? Alignment of planetary bodies? Karma?

 

picture of an oil painting by John William Waterhouse (1916) of a redheaded girl looking out to sea at a chip being wrecked on the rocks.
Oil Painting by John William Waterhouse 1916 “Miranda -The Tempest”

Why me?

Why not me..? Answers back. That small audacious whisper. I hush it back into it’s corner. How dare it speak up? The mirror in which I examine my value magnifies my insecurities.

It was easier to wonder why not me when I was sick. Worthier. It was easier to push, using all the survival drive my physiology could muster. Why not me? I tried and sought and searched and strived. I wanted to survive. And now that I am thriving?  I wonder if it is a monumental case of mistaken identity, was it meant for me?  I fear that I cannot do it justice. I exhaust myself with my desperate need to never take anything for granted; gripping on to the epiphanies of illness.  I prostrate myself into works of compensation, trying to redress the balance that tipped things into despair and took so much from the people I love. I burn the energy that has been gifted to me on the backlog of yearnings. The things I missed. The things I couldn’t be. The person I think I could be but maybe, will not.

I just want you to know, you who continue to suffer, I want you to know that I have not simply sailed off into the sunset. I struggle to write for you because I feel like my remission has given me something you don’t have, and that feels unfair, like a betrayal. I wonder if you find my words aggravating, or boastful, a reminder of all that you cannot do. Those among you that are close to me have assured me that my story brings you hope, but I worry that it also brings you pain. Because, see? There I go again. Doing the things you can’t do, living the life that eludes you. And I do want to live that life, because it is mine.  I even want to go sunset sailing, sometimes, though I have no sea faring vessel. I want to run away; I want to stay.

One of my favourite poems is by Christina Rosetti. There is a line that expresses the way this feels

“When I half turn to go… yet turning, stay.” 

I have never been a goodbye girl. I won’t do it. So I remain here, caught on the cusp of sick and well. My hand reaching out across the divide between our experiences, the distance between our hands growing every day.  I think I have that hated thing called ‘ableism’. Because I do believe, with all my heart, that there is a massive difference between being well and being disabled through illness. And I think it is better to be well.  I think most of you with Dysautonomias think that way too, but dwelling on that is too painful. When ‘well’ is out of reach, people make do, we find joy, we build meaning where we are. It is a triumph of psychology. By far, the hardest thing I have ever done, was staying afloat through all those years. I was not always successful. When I sank under, you lifted me.

And here I am, washed ashore; not drowned. Dry, standing at the edge of continental opportunity. I have caught my breath. But I stare back out to sea wondering if you are treading water in shark infested waters. Willing you to keep your heads above water, to find the flank of our ship wreck; to hang on. My soul flies across the deep but the winds and tides can’t hear me. I am impotent to ease your suffering. And I am sorry.

So sorry.

In Mortal Danger

We are all in mortal danger.  No exemptions, no alternatives, it doesn’t matter if you are sick or well, at some point it will happen to each one of us. Mortality is part of vitality; it’s just the part we studiously choose to ignore.

I’ve just put down a book that should be compulsory reading for every adult. And not just once, we should all re-read it every few years.  Have you read “Being Mortal” by Atul Gawande?  He is what is known as a physician-writer. It’s an entire genre!  Last year, I wrote briefly about something discussed in another physician writer’s book:  ‘One Doctor’. Brendan Reilly is another brilliant physician-writer who tackles the subject of the confounding American Medical System. Oh my, that was a great read too, so timely and thought provoking. Where are we going with our own medical system? I sincerely hope not to the same places… but there are some similarities.  Brendan Reilly’s book is a brilliant companion to Gawande’s ‘Being Mortal’. I think those two authors would have great conversations!

Somehow seems unfair that people gifted in medical ‘brainage’* can also be gifted writers, I suppose it follows that Gawande and Reilly are good at sports and incredibly good looking too (!) but I haven’t seen them so I can’t confirm. Some people just get it all!

Atul (I feel we are on a first-name-basis now I have read the book) writes about a very uncomfortable subject.  I’ve written about it here, but my words were inadequate in comparison to his excellent (and detailed) discussion. It’s difficult to convey in a blog post a message he has delivered so beautifully in his book. I love his writing style; fluid, easy.  He’s a compelling storyteller.  It’s through the stories in this book that he gets us to honestly look at the elephant in the room.  We are mortal. We never want to look at that, we never want to engage with what it might mean about our lives. Somehow, our brains slip away from the realities all the time. But Atul forces us to look, to think, to examine what our own wishes are for the inevitable. Not just the inevitability of death, but of old age. His book is a crucially important guide to the subject of both and an important criticism of the directions of gerontology in traditional western medicine.

picture of the cover of Atul Gawande's book 'Being Mortal'
Atul Gawande :: Being Mortal

Have you ever heard parents ask children to promise not to put them in a home in their old age? Or seen people refuse to use of mobility aides, or even prolong the lives of their loved ones with unnecessary medical interventions for their own reasons? I have often. We see and hear examples of people grappling with issues around mortality every day, but we don’t really examine how it could be better. It is very difficult for any family to make decisions about end-of-life issues when they are emotionally distraught, far better to engage with them long before the inevitable, to remove the burden of big decisions. We can all do this by making our wishes clearly known. And I don’t just mean “if I am brain dead turn off the machine”. There are a lot of statistically more likely scenarios to consider. Atul knows this, because he’s been in that position with his own Father, as well as countless patients. I know this, because I was with my Mum when she was going through her final days.

The older we get, the more often mortality will come and slap us in the face, that of others and eventually our own. But have we considered the type of death we might prefer if the choice were ours? Have you ever heard of Advance Directives? Even more importantly, have you discussed the curliest of questions with your family?  Atul provides us with four thought provoking questions to guide our discussions. I won’t tell you what they are, because I want you to read that book.

When my Mum was about two weeks from her death, she was distressingly uncomfortable. An enormous tumour had enveloped her abdomen and was pressing on her diaphragm. She didn’t want morphine, but eventually asked for it; the pain was too extreme. Hospice care was compassionate and careful but also generous; they helped her with pain and anxiety, they talked with us, and with her. Food was still being brought to her, and desperate for sensation, taste, life, she would try to eat. “I’d love x, y or z” she would say wistfully “…or just something… juicy”. We would race to meet every whim. But there was nowhere for the food to go, the tumour had encompassed her stomach. And her gag reflex had stopped. She knew eating was pointless, she knew she had to vomit or endure more pain and nausea. She was too weak to help herself out of the predicament, so she asked me if I could stick my fingers down her throat to help her relieve the situation. I would have done anything she asked me to do. My precious, frail Mumma. I helped her to vomit in the way she had helped me do countless things when I was little. With love.

Soon, she chose to not eat anymore. The hospice nurse, marvelling in a later conversation with me, remarked on my mother’s tenacity for life. She mused, just as an aside, that patients who continue to drink water last longer than those who don’t.  It is obvious really, isn’t it?  But when you’re there in that room, watching your loved one facing death, deep in the desert, it doesn’t seem so.  It was revelatory that death by an aggressive cancer would not be swift, but a long and painful process. That death would eventually be by starvation, or dehydration. It seemed so grotesquely cruel.

Mum’s final days passed in the torturous way they do at the sharp end. She drifted in and out of fitful sleep, her breathing ragged. She could barely talk but would turn her eyes to the straw in her cup and when we held it to her lips, she would drink like she was traversing a desert with no reprieve. We swabbed her mouth out with special sponges when she could no longer produce saliva. We watched her suffer, limp with inability to do anything that could really help.

One morning, awake and waiting for the next shot of pain relief, she croaked

“-tell me why I can’t just die?”

I thought about hwat the nurse had said. But I was afraid, because I knew my Mum. I knew her steely determined side, I knew if she wanted to go, she would make it happen. I looked into her face, taut with pain.

I confess that watching her suffer was the most agonising experience of my life.

I confess I hoped that there might be an end to the horror, for her and for me. And I whispered:
“Mum, the nurse said it’s not possible to live without water.”

For a long time, I felt guilt about telling her that. But her eyes shone up at me. She couldn’t talk. But she refused any more water. By the next day, she had drifted off into a coma. That was her only way out. A desperate, dry, gasping and rasping before a quiet coma. And I will forever feel responsible for my part in how it played out.  Did it save her from more suffering? Possibly. Did she want to go? Absolutely. We were extending her suffering with all the love our hearts and hands could muster. “Another sip Mum… come on, water is so good for you”.

I wish this book had existed when my Mum was sick.  I wish her faith in God’s healing had left some room for us to talk about such things. I wish that she could have had less chemo, and more good days.  But of course, more than all of that I just wish she was still here.  It is a regret that I have that I had pushed her to fight, to try, to hang in there, all because my own fears about life without her were so all-encompassing.

Atul Gawande’s book would have been useful back then, but it is still incredibly useful right now. Mum’s death was my first proper shock into the reality that death finds us all, but being sick for six years forced me to think about it even more. We are ageing, and so are our remaining parents. There are things to consider, things to discuss. I think about my own children and know that I never want them to be in the position of feeling responsible, or guilty, for any aspect of my wishes. I want to take that burden off their shoulders.

Have you had the discussion?

PLEASE read this book, there is far more to it than you might think. It is uplifting, not depressing. It could change your life, and your loved one’s lives for the better.  One thing I know for sure, we are all in mortal danger, and apathy could steal from you the things that will matter the most to you.

It’s time to talk.

 

*I know, ‘brainage’ isn’t a word, but it should be.

Finding Family

That particular time, I was admitted to hospital through the emergency room. I’d been battling a pseudo-obstruction, which is when my digestive system behaves like there is blockage, but there is none. Basically all the nerve messages that are supposed to make me poo, stop working. And the result is a painfully distended belly; a cocktail of treatments and medications. I have to go into hospital if the distention lasts more than four days. It’s all part of Dysautonomia, the diagnosis that seems to define so much of my life.

Apart from being painful and distressing, a pseudo-obstruction is mildly embarrassing. Firstly because I’m in for poo related reasons, so there’s a lot of discussion about bowels with the nurses and doctors, all within earshot of my ward-mates. Secondly, because I look like I missed my due date for delivering a hefty baby.  My belly gets so huge. So if I walk, I waddle. I rub that tummy a lot, because it is sore. And of course, people passing think it is cute to see a waddling pregnant lady pacing the hospital corridors.  I get lots of comments like ‘Not long now, love!’ and ‘hang in there!’.  If only they knew that the delivery I was so desperate for was poop baby!  I’m sure they wouldn’t find it so cute then.  Perhaps they’d run for cover!

This particular admission, the hospital was really short on beds. So because of a new policy, made in some administrator’s office, somewhere far from the ward, I was put in a room with three male patients. At first, I was too distressed to really notice.  I waddled my way off my bed as soon as possible and began to pace.  Locomotion is supposed to help, so I was getting mobile. Every time I passed by my neighbour’s bed, the old guy would make a low whistle, and wink.  I observed that he did this when any female was in the near vicinity, but somehow, that whistle just for me, made me feel the opposite of my big bellied waddle. I felt like someone could see the girl behind my diagnosis, the real me. It made me feel special.

That first night, lying in beds a few metres apart, a curtain between, we both tossed and turned.  I could tell he was in pain too, but I didn’t know why.  Then, around 4am, he whispered
“-are you awake?”
“Yes” I whispered back, “can I get you some help?”
“No,” he murmured “I just can’t sleep.  Want to talk?”.
So Tony and I talked until the nurses came to do change-over.  He had just had a tumour removed from his groin. He was worried. He was 68, his family were a long way away in Italy, and he was afraid of the future. I was half his age, supported by a loving family and dealing with a neurological condition that affected my autonomic nervous system.  He told me I was lucky. Lying there in pain as my abdomen continued to distend, I found it hard to agree.  But I said I did. It’s all relative, right?
I knew I was pleased that I didn’t have his problems to deal with. He sounded so sad and alone.

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In total, I spent a week in that room of men. There was snoring, wind passing, belching and cheerful enquiries as to whether my bowels had moved every time I returned from the bathroom. It had its ups and it’s downs, sharing a room with all those guys. And every night around 4am; chats with my friend Tony.  We talked about life.  We talked about being sick.  We talked about the things we loved and the lives we’d left outside the hospital, histories, regrets, the highlight reel. We became friends.

The next time he was in hospital was a few months later. He called me and asked me if I could come visit him there. He sounded fragile. I made my way up to the neurology ward. I arrived and within minutes his neurosurgeon walked into the room. He wanted to talk to Tony.
“Oh, good,” the surgeon said to me, “we’ve been waiting for you to get here”, I raised my eyebrows to Tony, ‘what for?’ I asked him with my eyes.
“Ah… you’re my support person” he said, looking down at his hands. I was shocked. I’d only met him in hospital recently… did he really not have anyone else in his life who knew him better than me?  Who cared for him more than I did? For the next ten minutes I held Tony’s hand and listened with horror as his neurosurgeon spelt out the awful truth.  They had not managed to remove the additional tumour they’d found in his head.  He had weeks, not months.  It was unlikely he’d manage an overseas trip to see his distant relatives. He should get his affairs in order.  The young neurosurgeon looked at me.  Nodded.  Held my gaze for a little longer than was comfortable, and asked Tony if he had any questions. When Tony had asked all he needed to, the surgeon turned toward me, saying to Tony, “…and your daughter?”.  I was floored. “I’m not-“ I began to say, but then I just shook my head.  “No questions”.

In the weeks that followed, Tony and I stayed in close contact. I visited him in the hospice as his time drew closer. It became clear to me that he truly had no real friends. He cried a lot. Cried that he wouldn’t be able to see his elderly mother one more time. Cried that his wealthy brother was too busy to fly over and see him. Cried with regrets for all the things in his life that hadn’t worked out. He asked me to write his life story, and so I did, sentence by painful sentence, as he rasped or slurred his words. The tumour was beginning to take his ease of speech; his fragmented final memories were pieced together by this random girl he’d met in the hospital.  I emailed it all to his brother, but got no reply.

The last time I saw him, I kissed him on the forehead as I said goodbye.
“Sleep well” I said.
“…wish you really had been my daughter”  he murmured back. I think I saw his good eye wink. I’m sure I heard a low whistle follow me out the door.  I smiled then.  And that night, he passed away.

I am lucky. He was right. Lucky our illnesses brought us together in the strangest of ways.  Lucky I had the chance to meet someone who made me feel like a girl who still had something to give, not just a sick person.  And lucky that I got to spend time with another human being through the darkest most dignified days of his waning life. I will never forget the things I learned from Tony.

Life is short. Luck is relative. And family can be found in the strangest of places.

Black and White

If only a certain book and movie hadn’t ruined the expression ‘shades of grey’… that might have been my title. But ‘Black and White’ is just as useful. It’s top of my mind because it was a photo prompt for today. I took this picture of the hands of John and Mary.

#photoaday #fatmumslimphotoaday …these two have been married for 61 years 🙂

A photo posted by Rachel Cox (@rachelfaithcox) on

I know people who are very black and white. They think in polarities, have pretty fixed views and don’t mind sharing them. I’m more of a shades of grey girl. I see things in their complexity. I feel differently about them the more I think about them. My opinion is often strong, but it changes the more I know about something. I don’t mind admitting to being wrong (eventually!) which somewhat diminishes the victory for the hubster when we fight and I concede! Of course, it’s VERY rare (!) but you know, it happens.

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Most of the time I think in shades of grey. But I felt very black and white about a few things in 2015. I held them tightly, more tightly than most things because they offended my sense of justice greatly. I kept them in my fists until the pressure turned them into dark stones, those offences I felt. I don’t always deal well with conflict, especially when I am conflicting with men I find arrogant. My usually broad mind strobes itself into sharp contrasts. Painful flashes of black and white. But time is useful to the wounded sensibility. Time brings perspective and a different way of looking at things. Time ameliorates the damage until the harsh difference between black and white softens into grey. Another way of seeing things. A whiter shade of pale.

And there I am at last, in the rain and wind. Fighting the elements on the edge of Mercury Bay. Shouting into the gale because it whips my words away and I can let the last vestiges of anger out. Let it out in the freedom of knowing that the expression of it is all I really need. All I ever needed. The tide is pulling the beach from under my feet, dragging the last year under. And I am ready to see it go. I let the hot stones of anger tumble out of my fists and away with the tide. I fill my lungs with cold, salty air. Spinning round and round in the blustery chaos, arms wide. Hands open to the air.

Then, the wind quiets enough so I can hear my own voice again. My feet slap out a regular rhythm on the hard sand. Lace scallops of foam edge the tide’s retreat. I notice that I am humming. The remnants of a Christmas carol, a song for Mary… breath of heaven… hold me together… light up my darkness… it has a pretty melody. I hum the words I don’t know. I think about the rhythm of the waves being the breath of life itself. Inhaling, exhaling. I think about the water, crashing onto the shore, or falling in raindrops from the clouds, rendering the sand into a carpet. I notice that the lace edge of sea is beaded with shells and seaweed. It is beautiful.

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I turn away from the breaking surf, away from the grievances. I turn my face upward to the rain, to the skies clouded with grey.

Catharsis.

Calm.

Hello 2016. I think I like you already.

Something Beautiful

When my kids were still really little, every night at bedtime, we’d sing a little song. It was always to the tune of one of my Mum’s old favourite church songs “Something Beautiful” but the words changed every night.  We’d take turns singing about what happened that day. Always the highlights.  It was a nice way to send them off into dreamland in a good frame of mind. It always started with “Something beautiful happened today…” and the rest would all depend on what loveliness had punctuated their day. I loved hearing their little voices sing about the things they appreciated most. It was often the little things.  “…I wore gumboots and splashed in the rain” or maybe “I got scratched by the cat, but I was really brave”.  Every line had to finish with the long ‘a’ sound, so words like ‘hooray’ and ‘play’ and ‘stay’ featured heavily.  If the syllables were too long for the melody, we’d race the words to fit them all in and collapse into giggles. Sweet moments.

Since my appointment with the Newro yesterday, I’ve been humming that little melody.  I feel happy and hopeful and positive.  Because something beautiful happened to me…

remission

The ‘Newro’ (new neurologist) was brilliant.  It was so nice to be welcomed into a doctor’s rooms by a person with a genuine smile and lovely nature.  He had read through my notes and proceeded to ask pertinent questions. We talked about the difference between then and now.  He was up to play with all the things the Immunology department have discussed with me. He explained that my response to the infusions was not a picture they had seen before with Autonomic Neuropathies, but it had been seen in other Neuropathies, like Guillian Barre Syndrome. So whatever the mystery-antibody  is that has been causing my problems was impairing my autonomic ganglia, but not killing them off. Which is why I have been able to regain normal bowel function and improved bladder function. It’s why my cardiac episodes have dropped off. Why I am feeling so much better. My nerves weren’t irreparably damaged, just interrupted… for a long, long time.

We don’t know if I will continue to feel well, or if my picture will be a typical auto-immune relapse/remission type cycle. But apparently the fact that I responded so rapidly to the Methylprednisolone  infusions (within days of my first dose I began to see a difference) is a tick in the box for a longer term remission! Oh my goodness I hope so! The Newro said we can’t crystal ball gaze, but if I begin to slump, and the slump lasts for weeks not days, I need to go back and see them. But in the meantime, no outpatient clinic!  I’m hoping that General Medicine and Urology will take the same view and I will begin a whole new letterbox experience.  No more appointment letters, confirmations, medical paperwork.  The thought makes me giddy (in the best kind of way, not the old way!).  I long for a calendar that is hospital appointment free!

Also The Newro has agreed to be my Neurologist if things go south again.  I am so happy about that, he seems a good sort to have in your corner when you need a super clever brain around.  He’s all things great doctors should be.  Compassionate, no hint of ego, thoughtful, responsive, kind, clever and thorough. It all makes a very impressive package. I hope there will be other neurologists who learn from him during his career, he has a wonderful approach and manner. I do wish I could bottle that and dose them all (well, doctors of every speciality) with the same qualities.  If that man ever ran for President of the World, he’d have my vote!

So my dear Dysautonomia friends, I don’t know if any of this will be helpful for you, but it has been for me. I feel like my battery is recharging. I am feeling better. The more I can do, the better it gets. In there among the good days there are still some crap days where I feel like I used to. It’s hard not to panic when that happens, but so far, every slump has been shortlived.  I wish I could tell you exactly what antibody and genetic disposition combined to give me the diagnosis I have had.  We haven’t been able to isolate or understand either. But for me, whacking the immune system with a sledgehammer has made a massive difference to my quality of life. I hope you find your answers too, whatever they may be. And if your picture is similar to mine, please get yourself to an immunologist!

Here is an instrumental of that melody. Something Beautiful, Something Good.

Fingers Crossed

At last.  I have a new neuro.  Henceforth referred to as The Newro. 
 Of course, I don’t currently need one. An irony not lost on me this morning!

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I am still full of the new-doc-jitters that some of you know all too well from first hand experience. You’re not sure how much info to take with you. You’re not sure if they will like you enough to want to help you. You’re not sure if you will be the tenth in their clinic, or the culmination of a very bad week. You do know they will be time poor, that goes with the territory.  You know they will be very very smart.  And that makes you a little trepidatious, because so few of the very very smart ones have social expertise. You steel yourself to answer all the questions without being extraneous or verbose. You hope that you’ll just be able to converse. Like humans.  You decide your plan is to just turn up and talk about things, because that seems the most sensible thing to do.

In addition to these new-doc-nerves, I feel a strange sense of illegitimacy.  It feels profoundly odd to be heading into The Newro’s rooms when I am feeling so well. I doubt if he has any well patients at all.  But if I don’t take this outpatient appointment with him, introduce myself and explain why I am hoping he’ll take me on, I may find myself sick again and without a neurologist. In our public system,  that will mean a long delay before I am on the neurology outpatient books again. I guess I am insuring myself against possible relapse, getting my ducks a row. I was first recommended this neurologist over a year ago, when we paid to see a private Rheumatologist, so we could rule some things out. He felt I needed a Neurologist who had an interest. And he knew one he thought would be a good fit.  Then six months after that, my neuro-immunologist asked me if I had a neurologist I would like to be referred to. I remembered the name of The Newro and the referral went in. So it’s been a convoluted journey.

I’m secretly hopeful he might have a fresh perspective on things and might be able to shed some light on why I have responded so beautifully to high dose steroids when it doesn’t seem to do the same for all Dysautonomia sufferers.  My immunologist and neuro-immunologist are at a loss about that. And I wonder if he has some theories about cause, and some ideas of what we should do if it all comes crashing down again.

I’ll write some more after the appointment. Right now, I’m off to my girl’s school assembly.  She’s in line for a certificate and I want to wave at her and see that shining face grinning back.  I’ll be walking to school, up the hill. I won’t take half an hour to do it, like I used to, with sitting stops staged along the way. I won’t need time to gather myself before the other parents arrive. I’ll leave with five minutes to spare, plonk myself down beside one of the mums I know, smile and chat and be the ‘normal’ person I am becoming. After that, it will be straight out to do chores before picking up the hubster on the way to the hospital. Me at the wheel. (Did I tell you I have new wheels?  So exciting! Even more so because we didn’t have to buy something mobility compatible.  We just bought a used car straight off the lot. It was lovely). So many things in one day. I remember how doing one thing in one day was sometimes too much. I’ve come a long way.

I will try to be mindful, today especially, of how it was before. I want the Newro to understand how vastly different things are to how they were. I want him to offer to help me if I start to slide back there. I hope it will go okay. Fingers crossed.