When you struggle to find the light in a situation, where do you go?
This combined situation of the loss of my donor role and the diagnosis of ET became increasingly explosive inside my head. Of course I had friends and family offering help. But imagine yourself on the edge of a chasm on a dark, winter’s night with a howling wind. On the other side a group of people shining what seem very dim lights, occasional shouted words whipped away by the wind. Across the chasm a rope ladder which they seem to be urging you to step on to. You gather all your courage together and take a step forward. The next blast of wind not only hurls you to the ground but dislodges the fastening of the rope ladder. Those on the other side of the chasm stand helpless to provide an alternative. You turn away and seek the best shelter you can within your own resources.
I wanted to scream across the chasm that I didn’t know what I needed. Not just from one week to the next, or one day to the next or even one hour to the next. I wanted to shout and smash things and swear. Anything to obliterate the pain I felt about letting someone down. Someone who’d depended on me to provide them with a chance of not just a better quality of life but life itself. In case you think I’m exaggerating, you don’t get onto the transplant list till your kidneys function below 10% efficiency. At that point there is no alternative long term treatment.
Why strangers can help more than friends or family
The promised appointments with the psychologist and holistic therapist became a beacon to me. The light I hoped at the end of a very long tunnel.
Come the day of the psychologist appointment, I met a woman, calm, smiling and as she explained quite accepting of whatever I wanted to bring up in that room. Confidential not only outside the hospital but to the main haematology team. Separate patient records, no shared knowledge, unless she judged after consent from me that I might need some form of medication.
So we began. With tears because at that stage I couldn’t string sentences together about the pain, without scalding tears. As I talked and cried, for the first time without having to assess and measure the effect of my words on others, the knot of pain inside lessened.
I was home. Not home and dry but home with someone who wouldn’t judge and offered me a measured way to tackle my view of what had happened. Someone practised in the skill of listening.
By the end of our first hour we’d decided that sessions with her would be helpful. That it was my choice what I shared or didn’t and that no time limit would be placed on how long it might take to find a place of healing. No promises of a back to normal because in the new landscape I'd been dumped in I no longer understood what normal might look like in the future for me.