Choosing My Recovery (part 3/3)

Melanie Sio and her whānau

Melanie Sio and her whānau

I looked around the room. None of the patients there were as young as me and it was at that moment I decided I did not belong there. I was going to get well and get out. I asked for the catheter to be removed. I would practise moving my feet one after another, with the physio and a granny zimmer frame, my bum exposed through the back of the gown.

The lady across from me had family visit her often. Once, I overheard her telling her visitors she needed to go to the toilet but she was just going to wet her bed because it was too hard to get up. Her family thought that was ok, saying “well that’s what the nurses are for. They will clean it up.  That’s their job.” So, she wet the bed and continued the conversation like everything was normal, letting the nurses know later on. Yes, it is true nurses clean up wet beds, but that is not what they are there for.

I held tight to my manta, “I don’t belong here. I will not wet the bed or be amongst people who think it is ok to do so.”

The other lady was from Rotorua. She kept telling me about the poor soul in the bed next to her that was having seizures. “I couldn’t see her, but man I felt bad for her. She was doing it tough, poor thing in so much pain having such a bad time.” Suddenly, I realised I was the girl she was describing. I do not belong here.

I worried about the effect of my illness on my kids and my husband. A friend came in and burst into tears when she saw me. I told her I was ok. It was nothing. I was going to be fine. This was something I found myself doing. Making sure everyone else felt ok about my illness. My friends and whānau were hurting and I did not want to be the reason they felt sad. But instead of allowing people to take care of me and make sure I was ok, I used my energy to make sure they were ok.

This is common for mothers and in my opinion women in general. Selflessly worrying and taking care of others first. The downside of this is we don’t allow ourselves time to deal with what is happening to us, our own bodies.

A week after the surgery, I was home with 40 staples in my head.  But I was home. I spent a week resting and adapting to my left side. The doctors indicated that I would be off work for 6 months but I was the sole income earner with only 5 days sick leave, and because it wasn’t an accident, there was no ACC. They recommended I go to WINZ.

So, I decided, blow that. I was going to be well and get on with it. And I did. Two weeks after brain surgery I went back to work. I started with a week of half days and was back full time thereafter. Not recommended but it was what I wanted. I was going to choose my own path to recovery.

Three years later, I went to see a friend. She’d had breast cancer and a double mastectomy and as part of her presentation, she talked about her recovery. This speech reminded me so much of my own journey. Tears flowed down my cheeks. I thought I had dealt with my experience, so was surprised. I shared these emotions with another friend who had also recovered from major surgery. She admitted to me that she had broken down in tears for two days straight years afterwards.

She had not grieved for her own losses from her illness.

On reflection, I think about what advice I would give others about any kind of major illness or surgery experience. I would say that your illness doesn’t define you. It’s how you handle it and recover. I am not my brain tumour. I am how I chose to recover from that. You decide your own journey. You can be the one who thinks its ok to sit in a bed soaked with piss, or you can decide to be back at work in two weeks.

I would say get together with your friends and have a laugh about the Reuben’s who looked at your hairy bush. Later on, it’s easier to see the funny side of the situation and express it, share it, tell I and most importantly laugh about it. It’s is only natural to care about how others have been affected by your illness but remember to take care of yourself too.

If you need to cry, cry. Let that grief out. Otherwise, it will catch up you eventually. Let it out so you can process and recover. Finally, you are not your illness. You are so, so much more.