Is it wrong that Chumbawamba is playing in my head? Because it is, but only in the best possible way. It's wonderful the route you've taken with all this, Chris. It is worth commemorating and celebrating. xo
Holy Smokes this was an epic read. I can feel the frustration and the anger when your body started to let you down. I had an experience with an old friend Erica that I used to work with that sounds very similar to what you'd gone through. One day in the office we worked in, we were having a group meeting, the whole team assembled and I was sitting next to her. As she was taking notes her hand writing began looking like she had gotten shit faced at lunch and tried to push through the day. Letters began to look like chicken scratch and then almost like the lines on a polygraph test no longer having relation to handwriting.
In the following days similar circumstances to yours had occurred. Her legs gave out on runs, stairs, couldn't ride her bike to work etc. Something serious was clearly going on. We all rallied around her and wouldn't take no for an answer. She was just as confused as we were. We helped with laundry, carrying her up stairs from time to time, even hand feeding her because her hands would sometimes not work. She went to the hospital that week, after she couldn't ignore the fact that something was definitely not right and it wasn't going away. Later that week she was diagnosed with MS.
I remember her going through similar stages of emotions that you had but even being so close to her I could never imagine what it was like being the person it was happening to. It's beautiful to have read this and to have such a clear lens to do so. It takes a lot of courage to write about this especially with such honesty and vulnerability. Doing so can only help others find the path to not allowing something like this to define them. It's beautiful how far you've come and how you've managed to live with your disease rather than let it extinguish your fire for life. What an inspiring story Chris. So glad my lady restocked this and I was able to get to know you more through reading this. You should be proud of the work your doing and the help/comfort your providing others with your courage, vulnerability and overall attitude. Cheers to you brother. 💗✊🏽🫡
Joe! Thank you so much for your thoughtful comment. This made my day. I really appreciate it! And I'm sorry to hear about your friend. I can definitely relate to a lot of what she went through.
Chris, I will forever be blown away by your story and how you've handled it. I am always so damn inspired!!! This was an INCREDIBLE read and I was on the edge of my seat. Thank you for sharing this with us. I am honored to call you a friend. 🫂💗
Wow Chris. I've read your story before and it still inspires me.
It makes me so thankful for our NHS, I can't imagine having to think about paying for medical treatment when going through a diagnosis like yours. There is always hope, so never give up, keep fighting and being an advocate for those who don't have a voice.
As always, sending love and deep gratitude for your words from Scotland.
You’re a beautiful human! Thank you for sharing this story. It made me sad to think of you sitting in a hospital with no support. I’ve been there - but with my daughter in a mental health crisis. Can’t imagine hearing that news and having no support. You are resilient!
Thanks Michelle! I really appreciate it. I had support but I told my parents they didn't need to come up that day, because I didn't expect the diagnosis to be as serious as it was. In retrospect, I should have invited them...
Thanks for sharing your story in its entirety again, Chris. It’s so helpful to others who share similar paths although our journeys unfold differently. Advocacy and sharing my story have been very helpful for me as well.
You've been through sooo much, Chris. Remember our 1:1 and your energy. I feel it in your post and I love the graphics with Day 1 and so on! Really cool. I raised awareness for rare diseases in Germany when I was working in health at Edelman. I'd love to feature a guest post, Chris, featuring how you're writing, when and the daily ups and downs you have to deal with. I just opened my spring guest post Chat thread. You can just pitch your idea there: https://substack.com/chat/443311/post/d216904d-3a8c-458b-a2ad-c10c08760fbf
Is it wrong that Chumbawamba is playing in my head? Because it is, but only in the best possible way. It's wonderful the route you've taken with all this, Chris. It is worth commemorating and celebrating. xo
Tubthumping or Amnesia?
Totally echo what Sandra says below. You're making such a difference here with everything you write and share.
Thanks Jackie!
Holy Smokes this was an epic read. I can feel the frustration and the anger when your body started to let you down. I had an experience with an old friend Erica that I used to work with that sounds very similar to what you'd gone through. One day in the office we worked in, we were having a group meeting, the whole team assembled and I was sitting next to her. As she was taking notes her hand writing began looking like she had gotten shit faced at lunch and tried to push through the day. Letters began to look like chicken scratch and then almost like the lines on a polygraph test no longer having relation to handwriting.
In the following days similar circumstances to yours had occurred. Her legs gave out on runs, stairs, couldn't ride her bike to work etc. Something serious was clearly going on. We all rallied around her and wouldn't take no for an answer. She was just as confused as we were. We helped with laundry, carrying her up stairs from time to time, even hand feeding her because her hands would sometimes not work. She went to the hospital that week, after she couldn't ignore the fact that something was definitely not right and it wasn't going away. Later that week she was diagnosed with MS.
I remember her going through similar stages of emotions that you had but even being so close to her I could never imagine what it was like being the person it was happening to. It's beautiful to have read this and to have such a clear lens to do so. It takes a lot of courage to write about this especially with such honesty and vulnerability. Doing so can only help others find the path to not allowing something like this to define them. It's beautiful how far you've come and how you've managed to live with your disease rather than let it extinguish your fire for life. What an inspiring story Chris. So glad my lady restocked this and I was able to get to know you more through reading this. You should be proud of the work your doing and the help/comfort your providing others with your courage, vulnerability and overall attitude. Cheers to you brother. 💗✊🏽🫡
Joe! Thank you so much for your thoughtful comment. This made my day. I really appreciate it! And I'm sorry to hear about your friend. I can definitely relate to a lot of what she went through.
Chris, I will forever be blown away by your story and how you've handled it. I am always so damn inspired!!! This was an INCREDIBLE read and I was on the edge of my seat. Thank you for sharing this with us. I am honored to call you a friend. 🫂💗
Thank you Jenovia! The feeling is mutual.
Wow Chris. I've read your story before and it still inspires me.
It makes me so thankful for our NHS, I can't imagine having to think about paying for medical treatment when going through a diagnosis like yours. There is always hope, so never give up, keep fighting and being an advocate for those who don't have a voice.
As always, sending love and deep gratitude for your words from Scotland.
Vivienne
Thanks Vivienne!
You’re a beautiful human! Thank you for sharing this story. It made me sad to think of you sitting in a hospital with no support. I’ve been there - but with my daughter in a mental health crisis. Can’t imagine hearing that news and having no support. You are resilient!
Thanks Michelle! I really appreciate it. I had support but I told my parents they didn't need to come up that day, because I didn't expect the diagnosis to be as serious as it was. In retrospect, I should have invited them...
Thanks for sharing. Inspiring awareness in every word. Also a lot of what you said applies to diseases that aren't rare.
Thanks Jerileewei, I really appreciate it!
Thanks for sharing your story in its entirety again, Chris. It’s so helpful to others who share similar paths although our journeys unfold differently. Advocacy and sharing my story have been very helpful for me as well.
Thanks Tracy! Means a lot coming from a fellow advocate! 🙏
You've been through sooo much, Chris. Remember our 1:1 and your energy. I feel it in your post and I love the graphics with Day 1 and so on! Really cool. I raised awareness for rare diseases in Germany when I was working in health at Edelman. I'd love to feature a guest post, Chris, featuring how you're writing, when and the daily ups and downs you have to deal with. I just opened my spring guest post Chat thread. You can just pitch your idea there: https://substack.com/chat/443311/post/d216904d-3a8c-458b-a2ad-c10c08760fbf
Thanks Kristina! I'll check out the thread. I'd love to guest post!