The emotional toll of living with Locked in Syndrome

Thanks to everyone who read my first blog. I read your comments with friends there to support me. We had lots of hugs and shed many tears.

Here is my next one.

By Tracey

After my stroke my Mum and I tried to come to terms with what happened, however at the time there was very little information available about Locked in Syndrome (LIS). 

Isolation set in for both of us. I was a nineteen year old girl who was dealing with the trauma of being trapped in her body with tubes to help me to breathe, and take in food and water.

My Mum was traumatised by nearly losing me and the fear of what my life was going to be from now on. How were we both going to cope, financially, physically and emotionally?

Well cope we did, and it was a hard slog of facing micro moments, the minutes stretching out before us. All the while we were both searching for answers.

In 1994 a Doctor called Dr Ted Freeman came to talk to me at Julia Farr, now called the Centre for Disability Health - Highgate Park. He had written a book about LIS. I had been locked-in my body for 18 months and he wanted to meet me. 

Dr Freeman was impressed with my recovery. This felt good as I had not had anything to benchmark myself against. Who do you compare yourself with? This is the tyranny of having a rare stroke resulting in a rare syndrome - 23 years ago.

I asked Dr Freeman “is there anyone like me, anyone whose stroke was caused by an abscess on the pons?” He knew of only one woman in the UK. She couldn’t communicate at all, and was not fully conscious. That poor woman, I felt relieved for myself. 

I had set myself three goals during those early days. To get the ‘trachie’ out, to get the feeding tube out, and get out of hospital.

I felt ugly and in pain, and wanted those hideous shackles keeping me alive gone. I wanted to eat and breathe on my own. Unfortunately it was not to be. 

Over a long period of time I came to terms with what happened and incrementally my mindset changed. Doors opened and I made the decision to go through them. My friends and family embraced me, life embraced me, and I it.

Now I have a rich social life, to balance my rich inner life. And finally I am going to leave hospital to branch out on my own in an independent care home. I will have the support that I need, and the freedom to pull some all-nighters at the clubs. 

Woohoo!