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.

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.

Untitled design(15)

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.