What would you think about if you thought you were going to die?
There is one thing and only one thing. To rise and greet the new day, to turn your face from the dark of night, to gaze at the white dawn.” (unknown)
This quote, given to me by my Dad (who always has a quote on the ready) was stuck on my wall, and in my mind, for many years while I was sick.
I came adrift in around 2008 with what, at the time, and for a few years thereafter, was an undiagnosed, unknown, yet crippling illness, now known and recognised as Cyclic Vomiting Syndrome (“CVS”).
There are four phases of an episode of CVS, also coined an “abdominal migraine”:
1. The prodrome phase. You feel that an episode of vomiting is about to start (often accompanied by severe nausea and intense sweating). This phase can last from a few minutes to several hours.
2. The vomiting phase, which consists of intense nausea, vomiting, and retching. Periods of vomiting and retching can last 20 to 30 minutes at a time. An episode can last from hours to days. During these times, I was generally immobile, incapacitated, couldn’t talk or walk and was in intense pain. Keeping water down was a struggle and the whole thing just wiped me out.
3. The recovery phase, which begins when the vomiting and retching stop and the nausea subsides somewhat. Improvement of symptoms during the recovery phase can vary. Healthy colour, appetite, and energy return gradually.
4. The well phase, which occurs between episodes when no symptoms are generally present, though I had an ever-present nausea.
How handy would all this information have been when I was actually suffering CVS? So handy! But unfortunately, it wasn’t available to me. CVS was not widely recognised at the time (it is still rare). I went undiagnosed (and therefore, untreated) for years.
Once that 4-step process goes on over a long period time, you lose a lot of things. Weight in particular (I lost over 12 kilos). Self-esteem. Your identity. Your faith, in thinking anyone could help you.
What would you think about if you thought you were going to die? I hit that point in 2011. Nobody had been able to really help me, and I just got sicker and sicker. I ended up in hospital at 44 kilos, with my mum showering me, on a drip, on a liquid diet (if I could keep anything down at all), having more and more tests with no results. Dad sleeping in the chair next to the hospital bed, piles of paperwork next to him, reading - looking for answers, options, and highlighting hope.
"It’s hard to say this on reflection, but there were times when I thought please just give me the brain tumour answer, give me the cancer answer. At least then I, and everyone around me, would know what to do and how to act."
I was so afraid of being alone, of dying, of not knowing, that nobody could help me and being with my own thoughts. I remember I always had to have noise constantly around me, day and night. I was so terrified of thinking about dying, or doing it I suppose and the noise (often Friends) gave me something to grip my thoughts on to so I could get through that next 5 minutes, hours or days. Another quote from Dad - “nothing in the world can take the place of persistence…” (Calvin Coolidge). Ain’t that the truth.
It’s hard to say this on reflection, but there were times when I thought please just give me the brain tumour answer, give me the cancer answer. At least then I, and everyone around me, would know what to do and how to act. I could say, this is what is wrong with me, and immediately be understood.
But lying in the scanning tubes occasion after occasion, contemplating whether I really did have whatever it was they were testing for, I changed my thinking. I thought, well, if whatever I have isn’t that easily identifiable, then maybe that was a good thing.
One day in 2011 (around April/May), Dad and his brother found information on CVS and possible treatments. We got one of the medications prescribed to me. Within weeks, I was better and have never had an episode of CVS again.
When I came out of hospital, I lived with my Auntie for a bit. I can’t remember why I lived there, but she was a miracle to me and I am grateful. One night I recall my auntie slept on the floor next to me when I felt so depressed that it frightened me further. She lay there and talked me through a visual meditation. She took me to a place I still remember clearly - it had hills, beautiful paddocks and of course, horses. I wondered how she knew so much about what would be a special place for me.
"As the CVS got better on the medication, I realised I didn’t want to live with this fear anymore. I decided I was going to “sink or swim”"
She introduced me to yoga and meditation with Heather, her beloved yoga teacher, in her home. I felt peace there in the first meditation I did and during the meditation, instead of being scared of my thoughts, I fell asleep, in the quiet.
As you can probably tell, I was living my life scared over these years, of so many things. It was the culmination and effect of years of illness, and not knowing. It felt to me as though my identity, my existence during those years, was about being sick. My life was so busy with being sick. I wonder how many tests I had.
As the CVS got better on the medication, I realised I didn’t want to live with this fear anymore. I decided I was going to “sink or swim” (and really, the only option was swim). I moved to London and went travelling to force myself into that swim. I went backpacking with my sister in Europe, and slowly started to heal. I got stronger and stronger on the trip, both mentally and physically. It really worked to take that control back, and take that plunge right into all my fears so that they were obliterated, rather than lingering forever. I remember one day sitting thinking to a higher power, “ok, fine, now I’m ready, you can take me.” But I’m still here though, and I’m pretty happy about that.
“Even the darkest night will end and the sun will rise.” (Victor Hugo). It is true. That dark night might last a while, but the light is there, always.
It has taken me a long time to write this, because the whole experience didn’t really fall into a nice linear story. Truth be told, I can’t remember the timeline, I just remember certain bits. I’ve had to dig through old records to remind myself of what happened. Which is a good thing, because what once scarred and scared me so much is now an old memory.