Happy New Year… to me!

I can’t quite believe that it’s been one whole year since my life was turned around, spun on its head, righted, brought back from the brink of whatever. And what a year of discovery it’s been!

It all started back in June 2008, when a suspected virulent gastric bug turned out to be something more sinister, with a name all to itself, Ulcerative Colitis, a name that would come to spell the end of life as I knew it.

Unbeknownst to me, I was about to embark on an 8-year odyssey that would, among other things, see me choosing restaurants based on their toilets, completely forgetting what the inside of a theatre/cinema/bar looked like, never going to the playground with my young son, and spending night upon night doubled up in the bathroom in agony, losing blood by the minute.

It was also, however, a real journey of self-discovery during which my limits were pushed, I learnt to relinquish control, I truly understood what was important and what wasn’t, I appreciated that even the finest appearance can mask terrible suffering.

I came to adore our national health service, finding out that the medicines which I was given free of charge cost other sufferers in distant lands thousands of dollars.

2016-03-05 19.40.10
One dose of Humira costs around 500EUR and a basic dose is needed on a fortnightly basis.

I got to meet one of the most thorough, professional and yet, kind doctors of all. Yes, they exist!

My son (still only 4) developed an incredible sense of empathy through this all.

My husband became an incredible father, never letting our son want for anything.

I saw who the really supportive people were in my life, with a few pleasant surprises along the way.

I got to really not bother about the extra weight I was carrying, the result of 8 years of steroid use, forced total inactivity and a diet that necessarily came to consist of practically solely carbs!

It all came to a head in December 2015, when it became apparent that, despite the steroids, heavy medication and chemotheraphy, nothing was working and so, the only way forward for me was major surgery to have my colon removed and replaced by a permanent ileostomy.

With several twists and turns along the way, D-Day was April 25, 2017, aptly the Italian day of liberation.

So today, I celebrate 365 days without a diseased colon (for the most part, that is), and with a protruding stoma which I chose to call Hope which acts as the outlet to my body’s waste.

I’ve had to learn so much in this time. From the practical – taking care of my stoma, figuring out how the paraphernalia that see a bag attached to my stomach to catch the outflow work; to the emotional – will the stoma work properly; to the psychological – does it show, does it smell, do I have everything I could possibly need with me?

There have been tears – such as the weekend in Gozo when out of a whole box of 6 wafers, necessary to affix the bag to my stomach, only 1 worked, and of course it was the last one I tried; or the first day in a new job when I had a massive leak (thankfully a very rare occurrence).

But there’s also been so much joy. From finally being able to do what I want with my family, to attending the Malta Jazz Festival again after years, to enjoying a plethora of cultural events once again, to being able to choose a restaurant for its sublime food and superb service, to finally exploring every nook and cranny when abroad!

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Picnicking with my 4-year old, one of the joys I’ve rediscovered.

There have also been many lessons, not least of which, I am truly blessed to have had an excellent surgeon thus resulting in a fully functional stoma with little to no side effects (there are some horror stories out there).

It’s also been a humbling experience. I had to accept, for the first few weeks, that I couldn’t be the usually active person I once was. I had to practically learn to walk and sit up again. I had to let the nurses wash me for the first few days. My bed at home, low and modern with a comfortable latex mattress, turned out to be the worst kind as it offered no support to me when I tried to get up for the first few weeks. I had to rediscover my body and also change my whole wardrobe!

Perhaps, the biggest lesson of all through all this has truly been to love myself for who I am, truly, deeply, because after all, we get one life and if we can’t come to terms with who we are, the biggest losers in all this would be our own selves.

So happy New Year to me and Hope! I’m looking forward to continuing to enjoy life.

And the light sparkles on.

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