As you are all too aware, living with M.E. blows big time. When Louise Sargent asked if I would write an article for M.E. Support, I wasn’t sure where to begin. I had just published a book about my life as a potter that delved into my experience of M.E. and didn’t want to repeat a lot of what was written there. I could hardly say no though, as I have a great deal of respect for Louise’s dedication to helping M.E. sufferers find their way through the myriad hardships this disease throws at you.
Where do you find hope when the life that you have known slips away and a new reality takes over? I recall all too well my frustration in the first decade of dealing with M.E. when I would hear of people who got better. I often thought either they didn’t have M.E. or they had a very mild version of it, as I didn’t know anyone with this disease who had recovered to their old self. Not a very uplifting thought to share with you, but it’s how I felt, and to be honest I still don’t believe that one ‘recovers’ from this disease. I believe that some of us are lucky enough to improve to the level where we can have a more ‘normal’ life and pass as healthy – as long as we live within our limitations.
So, how do you have hope when the years go by and you are increasingly isolated by the illness, and small improvements come so slowly? All I can offer as an answer is my own experience. I am sometimes still amazed to realize that at age 62, I have now lived more than half my life with this condition. Eventually acceptance starts to creep in and that is usually a turning point in adapting to a new reality.
My story with this disease is unusual as my wife, Heather, and I both became ill at the same time. It was 1989 and we were living in Vancouver, British Columbia. A few months later we were diagnosed at St. Paul’s Hospital with Myalgic Encephalomyelitis. Then the frantic search for what might help us began. Trips to different alternative health practitioners ensued as did trying different supplements they suggested, but nothing helped. Our life as we knew it was over.
Heather was much sicker than me; she had severe M.E. and was house/bedbound for 18 years before succumbing to the disease. I wasn’t as severely affected as Heather but still I was very ill and pretty much confined to the house for the first years. The whole experience was heart-breaking, and it would be five years before I slowly started working at pottery again part-time, while also caring for Heather.
I experienced slow improvements over the years, but sadly Heather’s suffering only increased and she died in 2007. Then my life changed again as I no longer had the constant demands of care giving while also trying to work. My health slowly started coming back to me and now I am one of those people who can ‘pass’.
Heather Vaughan & Mary Fox
I know my story isn’t the easiest for you to read as my struggle has gone on for years and Heather didn’t make it, but still there is hope in it. Since Heather died, I have rebuilt my house where I have a Pottery Studio and Gallery that is open to the public. This has worked very well for me as I can sell the majority of my work from home and if I am having a flare or bad days, I can easily cut back on activities and rest more. I have learnt through the years that working to my energy level and not pushing it pays off big time, so when those nasty days come, I couch myself and wait for things to get easier again.
Years ago, before getting ill, I had the thought that one day I might write a book about my work. Little did I know then how M.E. would alter how my life unfolded. Writing the part of the book that dealt with this illness was gut-wrenching for me and almost stopped me from finishing the project. The last thing I wanted to do was relive those years by writing about them, and I was reticent about sharing this private part of my life with the world. But I am very glad I did, as many people have told me how inspiring they found my story.
‘Beautiful vessels to enrich and inspire.’
When we are in the midst of hardship and suffering, it is challenging to keep going and believe in the possibility of joy and meaning, but believe we must. Heather was a remarkable example of this. Even though she experienced serious pain and many limitations, she still managed to be part of a writing group where the members supported each other’s creativity. When she couldn’t do that any more, she found small ways to be there for others, even if it was limited to being a listening ear for her home-care workers. I learned much from her – she was kind, gracious and loving, even though she suffered immensely. Without her guidance and strength, I would never have grown into the person I am today, and my book is, in many ways, a tribute to her.
I think of the many M.E. sufferers trying to make sense of what is happening to their bodies and figure out how to manage the realities of living with M.E. How to keep hope and carry on? This is an ongoing challenge for anyone living with disability, so pat yourself on the back for managing as well as you do and go easy on yourself. Life with M.E. is hard. But every moment of finding joy, meaning, or appreciation is a victory and every small improvement is a gift. I used to dream of the day when I could walk out of my front door without worrying about whether my legs would give out on me before I made it back home, and I haven’t had that thought for a long time now. Though my walks may be shorter than they were before the illness, I don’t have that underlying fear any more, and that is huge!
My book, Mary Fox: My Life as a Potter, Stories and Techniques, is published by Harbor Publishing and is available worldwide.
Beautiful. All of it-heartwrenching, sad, uplifting and inspiring. Thank you for writing this.
I have recently been diagnosed with ME/CFS and so have begun the task of trying to accept that my reduced energy capacity and chronic pain is permanent—fatigue and pain will be ever present. For years I thought, “if I just do this thing [insert remedy here], or after I retire I will
be able to focus on getting better and get my energy and strength back.” Turns out it’s not something I can fix and can only reduce the symptoms with a large set of self-management techniques. Or so it seems. Maybe one day they will actually be able to understand and treat ME, until then I am so grateful for those who have gone before and articulated the difficulties of living with it and show us ways to manage it and still live full lives. Thank you for your book and this blog. And to Heather. All the best.
Wow Mary, I found you on IG as a potter looking at beautiful work, found your website to see how you use your pug mill for simplified reclaim, and now I read your personal story. I too suffer from ME and POTS (just became ill 1 year ago after a vaccination), and completely relate to your story. I pray and hope that my story unfolds more like yours and I am able to “pass” in time. I’m so sorry for the loss of your partner Heather, and the countless other losses you’ve had along the way. Thank you for sharing your story. Wishing you all of the best! And if you could send me a link the pug mill post, I’d be grateful!