social lights and darks

Melanie De Fazio

I’ve admitted before that when I get invited out for coffee, for tea, for a dinner, party or gathering, one part of my heart sinks. 

I am in the bizarre category of being too unwell for the very activities which rejuvenate most people and bring them life balance. Unforgettable is my first ‘holiday’ with this illness. The very premise of a holiday is to leave your regular work behind and rest your body. I swiftly learned that my regular work is dwelling in my own body, and that most parts of going on holiday added to my suffering: travelling by plane or car, strange bed, going to see the sights, eating out, expectation of having fun resulting in guilt at not having any fun at all.

Don’t even mention holidays-to-visit-friends. How does that even work?

Sometimes I sit in my lounge and feel like a miserable social outcast, when I have an invitation in my hand. The pain has so marred what are supposed to be the happiest times.

And right alongside my desire to minimise my pain, is my sense that relationships are one of the most beautiful and important aspects of being human. I realise that sharing times with people is my work not my leisure. But am I not insanely privileged to be alive to be able to do that, pain or no pain?

Enter my beautiful friend’s upcoming wedding. I was all mentally and physically prepared for the pain-work aspect of the wedding. I cleaned up the house and Ben stocked the fridge so that on my return, I could lie until the nastiness subsided. I was all psyched up to live second by second, and in my bag was a stash of white pills for when I needed their powers. My praying friends were praying.

I woke on the day with zero pain, despite almost no sleep and the long journey the day before. The surging adrenalin gave me a crisp lively feeling. Intoxicating. I wondered if it would wear off before the ceremony, or just after. Drenched in warm sunshine outside the church, I was able to feel unadulterated joy and excitement. I stood without dizziness through the ceremony, and sang without faintness. At the photos, I still hadn’t reached for the pills or longed to lie down, and the day was passing in a happy blurr. I wondered why. Why am I functioning? I don’t do functioning.

In the evening, I began to fade but not to such a degree that I had to go out or be carried to the car. As we drove home, me in a delirious state of bliss, I wasn't sure whether I was going to pay severely for the day, or whether it truly had been a gift.

In the end, it was a gift. Unexpected and sweet, to remind me of wellness and freedom. On returning home, I didn’t have to sleep my days away or sip soups and cry. No wonder my friends love to spend time with others, when there is so much gain, and so little cost. I have this warm feeling that I am the same as the rest of mankind when my body works. And when it doesn’t function, I am the same as all the beautiful people who strive for a meaningful life through pain. 

But right now, I'm just happy.