It was June 25th when I boarded the plane for Australia, where I had spent 30 years of my youth growing up. I hadn’t been there in 14  years. I hadn’t seen members of my family in 13 years (14 years in some cases).

I wanted to do this, but I had spent the last week crying copious amounts of tears (tears that had not been available to me in memory – except perhaps during the first years of my illness in my twenties when I felt all alone against the invisible thing that was unravelling my life). I didn’t even know I could truly cry with Sjogren’s (which is somewhat of a misconception). The tears were two-fold: tears about going “home” and tears about leaving my soul mate behind: the person who had been by my side constantly for the past 14 years; who had been with me through times of unimaginable pain; who had fetched me heat and painkillers when I was too immobilized by illness; who had understood intimately things that people don’t understand about autoimmune disease, depression, dissociation, lost trust and heartbreak; who had advocated for me against a uncaring wall of medical professionals; and who had understood when I just gave up on the world and retreated to an “easy” functioning shell. I was going to miss her. I just didn’t know how much.

We had booked the flight a mere 6 or so days in advance when the rare chance came for me to go. The short lead time was to reduce my being wracked by anxiety and fear and nights tossing about, wondering what was going to happen. The short lead time also meant that I couldn’t do the “right” thing by my part-time job and give adequate notice of the departure. It was a busy time at work – it was always a busy time at work. One frustrated boss fired a note intended for another to my inbox. It essentially said, “Has she f**king lost her mind?” That was part of the message I took with me as I boarded the plane. In fact, I had never been more in my mind – determined to see my family, revisit my past, and do it while I was chronically ill. That was the scary part. I loved my family and they loved me, but they couldn’t understand most of this invisible illness stuff – at least I don’t think so – because in 23 years, we never really talked about it much.

I had recently received a plausible diagnosis of the abdominal pain that had been tearing me apart for 2 and a half years: gallstones. My GP and other specialists had tried to write it off as neuropathic pain, and while I knew all about phantom pain so bad it had you at the ER at 2am in the morning, I didn’t want to believe that of this pain – a pain I was destined to live with all my life? I’m strong, but I don’t know I’m that strong. I had morphine (a classic sign of my doctor humouring me, or finally believing the haunted, shut-down look?) and Tylenol 3s for pain management. I also had my herbal antidepressants, and Ativan to cope with the anxiety. I’d been given them to help me sleep (which I rarely needed them for), but I suspected I’d need them for anxiety. I was right.

I had a more or less direct flight to Sydney via Auckland, so I didn’t have to worry about landfall in the U.S. I’d only travelled once post September 11, and that was in Canada. I’d heard horror stories about U.S. airports and TSA agents, and I didn’t know I could survive: a stranger in a strange land being interrogated about the pills I used to navigate life, or the bottles of eye drops and various other lotions I used to navigate Sjogren’s syndrome. (Some 17 years ago I had travelled in the U.S. by myself – post first marriage and the worst of my crazy, on a Greyhound bus for around 6 weeks. Perhaps then I was still crazy enough that the thought didn’t scare me, but rather, seemed like an adventure. I don’t know that I could do that now).

Yet this was an adventure. I was finally on the flight. My tears gone, and as expected, reaching for the water bottle, the eye drops, the pain killers, and the Ativan. I dozed enough at first that I shaved several hours off the 13 hour flight to Auckland. It’s still a long flight for a Sjoggie (Sjogren’s sufferer). I had an aisle seat so I felt free to walk to the onboard loo (necessary when drinking all that water) – not like that first trip when I’d begged for a window seat and spent the next 12 hours asking a stranger for permission to go to the washroom.

I remember landing at last in the daze that ensues from such a flight, into the arms of several members of my family – in fact, the same members who had visited in 2000 for our Holy Union ceremony. I was glad to see them. I stayed with my mother. My mother, at 76 years, puts me to shame with her energy, her restless get-up-and-go, her resilience in the face of pain, and her anxiety about problems she can’t fix (perhaps the apple didn’t fall too far from that tree).

I missed my wife terribly. I had packed carefully, but I hadn’t thought about the heat pad I used every night to soothe the abdominal pain. My mother had a little microwave pack that was like applying a band aid to a gushing wound. There were many things I forgot about growing up with pain in Australia. Like the fact that I just assumed I shouldn’t be. When I first had the blistering pelvic cramps in 1996 that foretold the eventual removal of every piece of my shattered female bits, I didn’t think about ambulances. I crawled to the shower, and let hot water pour over me, until the worst of the pain was gone. That was the first of many such episodes.

In Canada, I had learned about pain relief, heat pads, gravol for nausea, ginger ale (they don’t have freaking ginger ale in Australia – how could I have forgot that?). On the other side of the world, I doled out my pain medication, aware I had to make it last.

I did so much with my family. Like the visitor, the stranger in a strange land that I still knew so well (I saw flashes of me and my past everywhere, especially in the day I spent in the bush – the refuge of my childhood self), my family were kind to me and showed me around. In the mornings I cried in the shower because my mother didn’t like to see me cry, and I missed the one person who had always understood my fragile, broken, vulnerable self so easily. In a weak moment I even negotiated an early return. I didn’t know I could do without her much longer.

And yet as the second week came, I felt calmer in my exhaustion, inured by experience, and borrowed adrenaline as I had so many times in the youth. Unlike my younger self, however, I was jet-lagged for the 2 and a half weeks of the trip. I’d get up early with Mum to walk the dog, we’d have our adventures on trains and ferries to the sights that were necessarily no longer a part of my life now. Every night I’d be asleep on the couch by 7pm, and in the morning we’d get up and do it again.

By the last day, the pain in my gallbladder was excruciating. My Mum saw the Mersyndol I’d bought and the 3 tablets I took at once, and she worried (perhaps about an addiction to painkillers). What she didn’t know was that as she worried about that, I worried that I was close to an attack that would need hospitalization.

As it always does when travelling and healing, during the last days my tears reversed – grief that it was all over so soon, that I was leaving with (as it always felt to me, perhaps to no one else) so much left unsaid. The 14 hour direct flight from Sydney to Vancouver was a marathon. Although I managed to sleep again through the first hours with travel sickness pills, the last 10 hours was an eternity. There’s no way to make that comfortable. And given I was travelling next to a couple, there was no cosy conversation. They were inured in their couplehood, and I was just the polite stranger who anticipated when they needed to get up to use the loo.

I got home and brought a strange mix of relief, grief, homesickness, and pain with me. It’s now I finally write about it, and tears have poured through this entire entry. I miss and love my family, although the circumstances of my illnesses mean I’ve only spent weeks in the past 23 years in their company. I long to see them again, and I hope our finances mean it will be sooner rather than later. But I can’t imagine travelling so far across time and space – to the place that was once home and is now the strange land – without my soul mate by my side. So it will be.

Travelling can be an adventure. Travelling while ill can be as well, although it can change your life in ways you never imagined. I never imagined crossing bridges I thought had been demolished, and now I’m left open with a vulnerable mind and heart, again wondering how much to share is too much, and if I should even put it all out here on a blog for others to read about it.

In truth though, that’s the only reason I’m left with for my being. I’ve been to other lands. I’ve perhaps been crazy for too many years. I’ve been in pain for too many years. My only gift now is that I can come back to write about it.

Many blessings,
Jane