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.

Lappy = Happy


Screen Shot 2014-11-14 at 9.51.44 am

So here I am in bed, but not my own.  My knees make twin mountains and I stare at the standard issue hospital curtains.  They are a kind of mustardy yellow abstract check.  The perfect vomit inducing shade of puce.

I’ve been a less than model patient this time around.  I’m too jaded, too familiar, too experienced with the ways of the ward to tolerate some things.  It all led to me packing my things in the middle of the night last night, buzzing the nurse and telling her she had to take out my IV and my stomach port so I could go home.  She said she couldn’t do that and I was so livid.  I nearly ripped them out myself but I am too much of a wuss.  Instead I curled up, fully dressed, on my horrid hospital bed and cried.  Who was I kidding anyway?  It’s not like I could have even walked to the cab rank with my bags in my state.  I felt impotent.  Angry.  Overwrought.

I came into hospital on my Gastroenterologist’s standing orders.  When I can no longer manage my pseudo-obstructive tummy, or when I go into bladder retention as well as bowel, things get nasty pretty quickly.  I come in, hand over my letter and get shunted up to a ward to begin the process.  The process is usually more of what I do at home, more suppositories, enemas, more oral laxatives and subcutaneous injections. Catheterisation.  Then one day some magical moment that defies determined effort will just occur.  Finally.  Things will move.

This time around I’ve been a less patient, patient.  I can’t really explain why, except that there’s so much going on at home and I know I need to be there.  And there’s a snorer in the bed next to me so my sleep deprivation is making me grumpy.  It’s not her fault, but sleeping next to her is like sleeping next to a cement truck. So not much sleeping actually happens.  And I don’t have the patience for these hospital time frames.  I can’t wrap my head around why it needs to take an entire day to make a decision about getting me some antibiotics for my urinary tract infection.  Even effervescent sachets have to be approved by a doctor.  At home, at least I would be able to go to my medicine cabinet and help myself.   I have wished, over and over that I didn’t come in.  That I kept pushing through at home.  I should have.  Or why didn’t I pack the whole medicine cabinet to bring with me? I could have sorted my own problems in no time. Maybe.

Some things are changing though.  The nurses during handover are saying ‘Dysautonomia’ correctly.  The gastroenterology registrars know what it is.

And my hubster showed me how to make my phone into a hotspot so I can blog.   I’ve missed my lappy.  Being able to write keeps me happy.  Sorry I haven’t written anything particularly profound, inspiration is thin on the ground here (or maybe it is just my grumpiness getting in the way) but I wanted to pop in and say that I’m here!

Thanks for your lovely wishes.  Here’s hoping that I will have a crap day!  🙂