New Year, New Me, Living with Myelopathy
Hi All,
Happy New Year to everyone!
I hope you all enjoyed the festive period and your myelopathy didn’t stop you from getting together with family and friends. I wanted to take some time to reflect back on my journey.
So far, it has been a difficult path. I have felt lost and lonely many times. In the beginning, I really struggled with losing my identity. I found it so hard to admit that in my 40’s, I was no longer able to work. Nobody would employ me with this condition, and I couldn’t offer anyone what they wanted as an employee. I hated going to the hospital and each consultant asking, ‘what do you do for a living?’ And for me to have to reply, ‘I’m unemployed due to this condition’. Or if I was with friends or family and someone asked, ‘do you work?’ Again I felt ashamed, depressed, thinking I had no place in this world. Listening to other people’s stories about what’s happened at work, or about them getting a promotion at work, was soul-breaking. But I sat, listened, and smiled in all the right places until I could leave and sink back into my world of pain, medication, sleep, and repeat.
This condition hadn’t taken me away. I could still hold a conversation. I was still able to come up with ideas and able to plan things. But I could only do it a little at a time. But then I made a New Year’s resolution last year – to do something for me and to feel part of this world again.
I knew I couldn’t do a properly employed job, but I still had skills that could be used. So I joined as a volunteer for Myelopathy.org in January 2022. This was perfect for me. I could do as much as I could, when I could. I’m using skills from my old work life in many different ways. People think if you are a volunteer for a charity, you don’t get to do any exciting projects. This is so not true. I am now involved in many projects with the charity, and I am excited to see all the end results. OK, I’m not getting paid, but the feeling of self-worth is priceless. ANYONE can be a volunteer. We all have different skills. And charities need a wide range of skills to make things happen. It’s not all about raising funds for the charity and getting people to donate. (But if you have done this kind of work before, the charity needs help in this area).
Currently, I’m helping a research group with the charity. During the first Zoom meeting a few months ago, I sat there looking at all the consultants and experts on my screen. I felt scared and thought I couldn’t offer anything. But then I realised, I was part of it. The consultants and experts play a massive part in the research. But without people like myself coming forward and talking to them, and explaining how we have to live with this condition, they could not come up with better solutions or best practices. Not once in the Zoom meeting did I feel I shouldn’t be there.
So fast forward a year to Christmas 2022 at the family gathering. Everyone asks, ‘how they are, and what have they been up to’. Well, this year I have had something to say and I was able to join in the conversation. It was the best feeling I had felt in a long time. Oh and at hospital visits, if they ever ask the question, ‘what do you do for employment?’, I proudly say, ‘I’m a volunteer for a charity called Myelopathy.org.’ And the conversation starts flowing.
Not only does this help the charity, but it has also helped me. In so many ways, I am playing my part in this world. I am living with this condition, but I am not letting myelopathy stop me from being part of this world. Without volunteers, charities would not be able to complete their vital work. I feel very honoured to be part of this family/charity.
If you would like to become a volunteer please contact info@myelopathy.org. We need all kinds of people to help with research projects, social media, fundraising, support group help, and the list goes on.
If you want to discuss this more with me, please join in our Virtual Coffee Breaks. They started back up on the 5th of January, so here are the next dates you can come and say hello:
- 12th January at 2pm GMT
- 19th January at 6pm GMT
- 2nd February at 11am GMT
- 9th February at 2pm GMT
- 16th February at 6pm GMT
I hope to see you there!
Esther
