Robert Joyce explains how he found a new purpose after his dormant relapsing-remitting MS awoke and evolved into secondary progressive MS.
Over the past five years, my life has changed dramatically. Because of a simple low-speed car accident, I now live with a persistent headache that feels as though it has invaded every part of my being. It has robbed me of my ability to concentrate and left me unable to remember how to do the tasks I had once found simple.
This pain has also awoken my dormant relapsing-remitting multiple sclerosis. My taste, touch and hearing have suffered, and my mobility has almost wholly disappeared.
In this modern age of the Internet and high-speed communication, my ability to be part of an increasingly complex working world gradually deteriorated. I can no longer work in a world I once traversed with such confidence.
Suddenly I was disabled. Excluded. Cast out of employment. I found this very difficult to bear and have shed many tears for the old me, who is now lost. I've spent many dark days lying in bed, hiding from a world with its constant reminders of my old life. It was as easy, almost irresistible, to succumb to those feelings.
MS destroyed everything
With all this, I had started to wonder:
"Am I enough?"
"Has my ability to contribute to the world finished?"
"Should I just stop?"
Over the past five years, it was as though wildfire swept into my life and destroyed everything. While I've tried to nurture ideas of rising from the ashes, many failed to take root and survive in such a harsh environment. Thankfully, however, some thoughts did become stronger. And, after nourishing these saplings with determination and optimism, I feel like I now see a whole new world growing around me.
Refocusing my life with mindfulness and meditation
Nowadays, my focus is in the moment – meditation and journaling have helped me with this. I try to have 20 minutes of quiet time nearly every day, concentrating on my breath and using a body mapping technique to centre myself. After this, I journal, sharing what I'm grateful for and looking forward to with the blank pages.
Every day I use a different fountain pen and ink to scribe my thoughts into a hardbound volume. It's so simple, yet the act of moving the nib across the pages feels like a channel directly from my brain. All those thoughts about the past, present, and future flood out of my head onto the thick paper. It feels as if I'm being emptied of all unnecessary thoughts.
Then I start my day, free from worry.
Sharing my story and becoming an advocate
Throughout my experience of chronic illness, I have learned to live for the now instead of dwelling on the past. Through my thoughts and experiences on this platform, I hope anyone else going through similar will feel less alone.
Over the past two years, people have started to share their stories with me. I know that sharing my experiences has given others comfort in their time of need.
On top of blogging, I've also become a patient advocate and representative. This work has taken many different forms, from attending Multiple Sclerosis conferences to helping to find new technologies to assist patients. More recently, I have been involved with patient engagement and new therapies for many different illnesses, including MS.
Being part of this space has been both thrilling and frustrating. Despite my increased pain and fatigue, I still want to continue participating. After all, so many people living with this condition can benefit from the new concepts and ideas being developed nowadays.
Learning to pace myself
In taking on these extra responsibilities, the idea of pacing has become increasingly important for me and is a skill I must work on (it does not come naturally). Often I have pushed too far and have paid a steep price, spending many days recovering. Now, I'm slowly learning how to pace myself, but I must continue to find out where my limits are and stay within them - just like an Olympic athlete, except much slower.
These new tasks have become my work and a massive part of my life. Now I find reason in my written words and in patient advocacy. There are many times when I would love to work harder, speak longer, and shout louder, but sometimes this just isn't possible.
I've realised that what I do is enough and that the world is listening.
Is this a path for everyone with a chronic condition? Probably not. But the idea of finding a new purpose is powerful. Perhaps when you were young, you painted, wrote stories, or found joy in some other hobby? Who is to say you can't return to these pursuits after your diagnosis?
When you hit a barrier, acknowledge it, refocus and rebuild it again. Immerse yourself in what you can do and be open to all the other possibilities that come along with this.
NPS-IE-NP-00351 December 2021