Q and A

Last month, I had to deliver a ten minute talk …about me.  My story.  It was part of the block weekend for the Leadership Programme I am doing.  The programme is about leadership in social change and it is challenging my thinking in lots of ways. I really prefer writing to talking (I know some of you will find that hard to believe!) and speech making isn’t really my cuppa tea.    But I started doodling, as you do. I doodled lots of question marks.  And then I made a real cuppa.

www.rachelfaithcox.com(11)

When I returned to my doodles, I stared at those question marks for a long time.  And it occurred to me that the best way to tell my story, was to do it using the defining questions of my life. There have been so many things I have wondered, but I pared them down to the bare minimum.
So! Here is what I came up with.

My Life, in Fourteen Questions:

I am a kiwi girl, born just after my parents completed bible college in Australia. My parents felt moved to work on the mission field in a third world country. So I was raised in Papua New Guinea, then I went to boarding school in Australia and soon after that, they went to China. These were the locations of my upbringing. In total, I attended 13 schools, four tertiary institutions and eventually moved back to New Zealand when I was 23 years old.

There were lots of things about my childhood that made me think.  And one of the first big questions I remember thinking, was:

"What makes us think our religion is more right than theirs?"

I liked to think about things as a kid.  And I started to notice other odd things about our world.  I noticed that when I was at the international school in PNG, there were more than forty nationalities of kids and everyone played together. Where we were from wasn’t even a factor in the forging of friendships.  But when I went home to New Zealand on furlough, people teased me for coming from a place where the women wore grass skirts and showed their boobs.
I was an outsider in my own country.
I began to think,

"Why do people have to be the same to be accepted?"

In my teens I became deeply philosophical, the way some teens do! The questions came thick and fast:

“What is the origin of thought?” “Are we inherently good… or evil?” “Is all this real, or just a figment of my imagination?” “Is life governed by fate, or are we self determined?” “Why are we here?” (and you kids from the seventies and eighties will relate to this one) 
“Are they gonna drop the bomb, or not?”
But these deep questions were all overwhelmed by a far more pressing issue:

“How do you pash?”

(Note to teenage self:  Mum’s historial romance novels were not the place to search for this information.  “She explored his mouth with her tongue” was a stylistic interpretation, not an instruction).

By this time, I’d been given the nickname Falling Tree because I was fainting a lot.
No… not because of boys (but there was plenty of swooning, too… I’m looking at you Morten Harket)!  I made it through my final year of high school and got into a competitive Journalism degree at a Sydney University.  I was ecstatic!

My well meaning Dad thought journalism would corrupt me, so I wasn’t allowed to do that course.  But a year later, when I reframed my University ambitions to encompass a career path ‘better suited for a woman’ I was allowed to go.  I embarked on a degree in Education and Teacher Librarianship.  Instead of writing words, I planned to surround myself with them.
But I wondered,

"Why does being a girl have anything to do with it?"

It took me seven years to get that degree (it was a bit boring).  Across that decade, I moved countries, got married, and divorced, and valiantly embarked on Project: Find a compatible Handsome Prince. There were quite a lot of frogs to kiss, so I used my knowledge of pashing with great determination.  Surely one of those frogs would be him…?!  And all of a sudden three wonderful things happened in a short space of time.  I found my man, we bought our first house and had Bee and Little Zed. All my dreams were coming true.

Then one day I got the flu, and I never recovered. Can you imagine that?  I was constantly dizzy and fainting a lot. But the faints were actually my heart stopping. I was fitted with a pacemaker to keep me ticking.

I asked a lot of questions during those early days of sickness, but the biggest one was

"How Long will this Last?"

No one knew.   Other parts of me starting going wrong: digestion, bladder and bowel function, temperature regulation, cognitive function, I couldn’t sweat properly, my pupils were not reacting properly to light, I had constant nausea and dizziness every time I moved to stand.  My blood pressure and heart rate were all over the place. I began to experience burning, tingling and numbness in my hands and feet, I struggled through daily chores. I had to quit teaching and we had to take in home stay students to cover my loss of income. The fatigue swamped me. My gait and mobility started to change. Every day was an exercise in pushing through. Pacing. Planning ahead.

I ended up in front of a neurologist who explained that I have a progressive form of autonomic nervous system dysfunction called Pan-dys-autonomia.  That covers all the automatic things your body does.  I know some of you here might relate to that. What made my problem odd was that I had it without a primary diagnosis. Dysautonomia is common in late stage MS and Parkinsons, aspects of autonomic dysfunction affect people with spinal cord injury too.  But the cause of mine was elusive. Six years of watching the progression, endless tests, treating the symptoms and fearing the decline and fall of my future led me to this desperate question:

“Can’t something be done?”

That question was met with averted eyes and shaking heads. Do what you can with your family now, I was told. Before you can’t anymore. I didn’t like that scenario. We embarked on a proactive memory-making schedule. A family holiday, the prioritising of togetherness. And I researched. My research led me to other patients overseas.  I listened to their stories, finally finding people who understood. I began to think deeply about the issues that face people like me.  People with ‘invisible’ illnesses, disability and accessibility issues that aren’t immediately evident. People with rare diseases or poorly understood diagnoses. I wanted to know what could be done for them, too. The injustices of all those lives lived beneath the radar began to burn my brain.
It led to this question:

“What can I do?”

I was offered some work writing for an overseas blog. And I remembered that I like to write.  So I started to write for more people, and even for myself. Blogging led me to ask many more questions, but for the first time I was beginning to see that it was leading me to answers too.  About me, about my purpose, and the beautiful, simple idea, that I could do what I do best.
I could write about it!

One day, I found a Youtube video by a specialist overseas who was treating patients like me, and getting results.  My general physician didn’t want to know. So I pushed and I fought and I learned to use my voice with sometimes, quite intimidating doctors! I kept writing for The Invisible and they began to respond. I wrote for me and began to take action. Until finally, I found a specialist who had read the same papers as me, who had seen the same video. He started me on a new treatment regime in January and it is so far looking really promising.
Fingers crossed!

And here I am, feeling better than I have in six years, embarking on the Be.Leadership Programme, and wondering

“Where will this lead?"

I know first hand that while we are all, to some degree,
defined by what our bodies can do and not do;
more powerfully, we are defined by
what we think,
by how we feel,
and by what we can do about that.

I think we have a responsibility to
help people understand
that our common humanity
is bigger than religion,
it is deeper than culture or race,
it is more practical than philosophy,
it’s broader than gender
and more timeless than life spans,
it’s our world’s biggest learning challenge
and it even transcends our physical abilities.

Those questions of mine have taken forty years to percolate. And I am just beginning to understand that they all point to the same thing.
That we, at the heart of things, have more in common than we don’t.

I am so grateful to have found an authentic way to connect my heart for social change, to society.

“How did I get so lucky, to have my heart awakened
to others and their suffering?”

Pema Chodron

Q and A
Q and A
Questions and Answers

Julia: ‘P’s Get Degrees

 

It’s Meet My Peeps time again!
When I was at University, back in the Nineties, we used to say “Cs get degrees”.  It was our way of reassuring ourselves that we didn’t have to ace everything to get the piece of paper we were working towards.  It is a useful sentiment for socially distracted students, but quite a necessary mindset if you are ill.   Julia lives in Melbourne.  Her tenacious efforts mean that she is getting really close to finishing her degree; not long now!  This is such a huge achievement because she has done it all juggling study with the daily challenges of Postural Orthostatic Tachycardia Syndrome.
These days, in Australia, the old fashioned C grade has been replaced with a more politically palatable ‘P’ for ‘pass’.  Hence, ‘P’s Get Degrees.  🙂 Today she is sharing with us her story and her top tips for chronically ill High School and University students.  Take it away Julia:

______________________________________________________________

With chronic illness come many sacrifices. Many people have to give up the world of study, just like others would have to give up full time work. I am one of the lucky few who, although my methods may not be conventional, has been able to continue studying while sick.

I began doing 2 or 3 subjects at a time,(3)

It all began back in year nine with the onset of chronic and complex migraines. They started as a horrible one-sided headache once every few weeks and eventually became more and more frequent and complex. By the time I entered year 11 I was experiencing episodes of dizziness and paralysis with these weekly migraines. With my final year of school approaching I remembered thinking, ‘well, it can’t get any worse than this.’ Boy, was I wrong!

It was year 12 retreat, a 3 day trip to Toolangi with half the year level. I had been feeling a bit rubbish over the holidays leading up to the school year, but had put it down to jet lag after coming back from an overseas trip. It was the afternoon session and 36 degrees Celsius. There were no fans, no air con. All of a sudden, my head was in my friend’s lap. I have no memory of how it got there, only the clamminess, mild nausea, head feeling like my brain had been replaced with helium and that familiar feeling of a migraine creeping in.

Of course, being in the middle of nowhere, calling home and getting picked up because of a migraine was not an option, so instead I was directed to have a lie down in the teacher’s cabin. I remember taking my medication and being knocked out pretty soon after. I woke to a student teacher staring at me. This was not the end of my ‘adventures’ on retreat. The next day was just as hot and I passed out again. I was given permission to go and sit in another room with a few of my friends while they waited for my mum to drive up and pick me up. After passing out again while sitting on the ground and struggling to get back up, an ambulance was called.

This was the clearest beginning on my POTS (Postural Orthostatic Tachycardia Syndrome), despite hints of it following through my life.

As you can imagine, fainting multiple times a day and feeling so unbelievably fatigued and dizzy doesn’t go to well with your final year of high school. My official attendance for that year ended up being about 50%, not to mention the classes I ended up leaving early.

My determination to finish high school was enough to keep me going. I was not going to spend another year there! I learnt early on, that teachers were always willing to help as long as you showed them you were willing to learn. Every class I missed or left early was followed up by a simple ‘copy and paste’ email asking for the stuff that I missed. Luckily mild insomnia came in handy allowing me the hours to remain mostly up to date. Most of my studying was done in bed with my laptop on my belly.

As term 3 crept up, I realised POTS was here to stay, and the difficult decision was made to drop one of my favourite (but worst) subjects, French. The head of VCE (Victorian Certificate of Education = High School Diploma equivalent) subjects was keen for me to keep the subject because of the mark up in score that came with it. The reality though was my concentration was completely shot so, concentrating in another language was never going to happen that would mean I wouldn’t even get a mark that would warrant any sort of a mark up.

It was a difficult decision, but I don’t regret it at all. My French teacher was amazing though, she understood my love for the subject and the limitations that came with being so unwell and went on to invite me back for the fun lessons like watching the Lion King in French. I never properly thanked her for everything she did for me.

Once I finally got through year 12 there was always the fear I wouldn’t get a mark that would get me into what I wanted. Luckily though, when university offers came out I got my second preference, which was a Bachelor of Science (my first preference being a Bachelor of Biomedicine). At the time I did not realise that this was a blessing in disguise. The biomedicine course was structured so much that it would actually have been quite difficult to do part time, as I have been able to do.

My first semester was a full 4-subject load and was indented by many trips to the hospital and constant rescheduling of assessments. It was from that that I learnt a full load was not for me. I began doing 2 or 3 subjects at a time, and in my worst semesters even just doing one subject.

I’m a perfectionist and wanted to get the best marks and subsequently, best average. I worked as hard as I could and quickly learnt that this was not going to happen with attendance just as bad as high school. I adapted my study skills and would only going to non-recorded classes and the ones that were recorded would be done in the comfort of my college room.

Living on campus was an absolute blessing! This allowed me to have some sort of a social life as well as maintain my study life. Friends that I met at my college have always been super understanding and I can never thank them enough for that. In fact, I would not be still studying if it wasn’t for all their support and help.

Of course, studying part time isn’t always ideal. There have been so many times where I’ve wanted to give up and just become a professional sleeper! The frustration of my situation really started to settle in when my friends started graduating. I felt like I was falling behind in life. The reality of a never seemingly ending degree would result in many tears, but eventually I’d get over it and just suck it up. Every semester I had to drop a subject would tear my heart apart, knowing that it was then going to be an extra semester, or even an extra year. 
I’m now in my final semester, and even though I am going through another rough period, that drive to finally get that piece of paper is keeping me going.

This is my advice to those of you who are studying with a chronic illness:

Don’t feel you need to finish with the people you started with, through my epically long degree I have met so many amazing people that I wouldn’t have met if I hadn’t taken so long.

Don’t be afraid to ask for help. The number of teachers, lecturers and tutors that have gone out of their way to help me has been ridiculous. I can never thank these people enough.

If you’re at university, don’t allow your own stereotypes and judgements stop you from seeking help from student services. Register, because the people are there to help you get through and do everything possible to make your time through uni as seamless as possible,

Pace yourself. This is probably my most hypocritical advice, because I fail at this one on a daily basis. Take your time, don’t be afraid to say no to things and don’t listen to people who call you ‘lazy’ or ‘not a morning person’ when you reveal how long you’ve slept in. Those sleep-ins may be the difference between quitting or getting through!

Just remember, you don’t need to get 100% on every test, P’s get degrees!

And to those who have been there for me and helped me at any point through school or university, thank you! Thank you for absolutely everything you have done for me, whether it be sharing notes, driving me places to save my ‘spoons’ from public transport, dropping work off at home, keeping me included in social activities and understanding the weird things I’ve had to do to get myself through.

-Julia

Meet My Peeps