What inspired you to start writing these letters? 

   

I work at a public library and a few years ago one of my co-workers explained what “fan fiction” is to me. I really liked the idea of people writing their own stories about something they love like a t.v. show or a band and self-publishing them on the internet.

 

I joked at the time that maybe one day I’d write some fan fiction about one of my favorite bands, Tigers Jaw. I laughed, but I also realized that there is a story there that I would love to actually write down one day. 

   

I was also very much inspired by the book and film “The Perks of Being a Wallflower,” written and directed by Stephen Chbosky.  The book is entirely written in letter format which gives it a very personal and heartfelt voice that I strived to emulate. 

​

Are the letters true-to-life or partly fictional? 

 

They are true-to-life almost entirely. I just added a few small fictional details, but all of the major events and people are real. This is very much a memoir, but it was healing to imagine what a friend would say to me who has passed away. The process of writing about my life was very therapeutic.

 

What do you wish that medical providers and the world understood about ME/CFS?

 

It is enough suffering to be this sick, but there is another layer of suffering when there is a lack of understanding and invalidation about the illness. I hope education about ME increases for doctors, that research is better funded, and that there can be healing within families that are trying to make sense of their loved one’s suffering. 

 

Have you found something that has helped you as a caregiver? 

 

#MEAction has a monthly Partner Caregiver Support Call that includes a short presentation of a topic relevant to caregivers, followed by breakout rooms of 2-3 people to give everyone a chance to connect on a more personal level. I especially like the breakout rooms as an opportunity to connect with others who really get what this is like. 

 

My friend, Kim Moy, has volunteered to lead this call for the last 7+ years. She is a caregiver for her husband who has ME, and is a certified health and wellness coach. Kim also offers courses on caregiving at Caregiver Wisdom. These courses have been transformational for me and connected me with other caregivers who have become close friends and supports. 

 

If your wife is able to communicate and wishes to, please share anything she would like to share with our community? 

 

It means so much to share our story with the broader ME community this year. This illness can be so isolating and make you feel invisible. My hope is that this piece will help folks feel a little bit less alone. And my heart is with everyone fighting unimaginable battles. Thank you so much to #MEAction for giving us often overlooked patients a voice. 

 

Lastly, who created that cover illustration for your story and how was it created? 

 

In late March, I met our new friend, Jess, in the chat of a Zoom being facilitated by #MEAction and Solve ME for advocacy week. As people introduced where they were from, I saw Jess lived in the same city as us. I shared my email in the chat saying I would be open to connecting with others local to me, and we got in touch by e-mail and I shared this story with her. 

 

She was deeply touched and asked if she could connect us with Holly at #MEAction to share our story more broadly. Jess helped to champion this story and volunteered to bring another medium of art to add to its beauty. This illustration is digital but uses no AI. My wife and I love the image and are so grateful for the time and effort of Jess’ artistry!