It’s been twenty-four years. Twenty-four years since the morning I woke up with a sore throat, went to work, and got so sick I could barely walk home. Twenty-four years since I became incurable.
And this year, I hardly noticed.
Over the years, I have marked my sickaversary in different ways (including a cake, of course). I’ve approached the day with sadness or trepidation or determination. Yet this year, I didn’t even think of it when we made our plans for the day. Even after I remembered the occasion, I didn’t feel sad, or even mention it to anyone.
We spent the day with dear friends who have known me for all of these twenty-four years. It was our third Saturday together, watching the Lord of the Rings trilogy in sequence. These are my absolute favorite films, based on some of my favorite books, and I’ve seen them dozens of times. For the first time I watched them with our friends’ bright, clever, funny, talented and creative teenage daughter, who shares my deep love of the films.
We both identify with the character of Eowyn, the shield maiden who slays the Witch King. What does Eowyn fear?
A cage. To stay behind bars, until use and old age accept them, and all chance of doing great deeds is gone beyond recall or desire.
ME is my cage, “a hutch to trammel some wild thing in.” Like Eowyn, I have feared staying behind bars, until use and old age accept them. I have feared losing my chance to do something great.
But what does “great” mean? Artist Austin Kleon wrote a blog post, “Knitting at the end of the world,” in which he quotes Paul Kingsnorth on the dichotomy between fighting and giving up: “Small actions were not actions at all: if you couldn’t ‘change the world’ there seemed little point in changing anything.”
I used to think this way. ME was a cage, and among other things it has stolen my ability to do large things to fight and change the world. I can’t lead an organization or a protest march. I can’t get out into the world in person, to speak and change people’s minds. I thought this meant I would never do great deeds. I was trapped.
But there are other kinds of great deeds, and other kinds of greatness. Kleon quotes George Orwell’s essay England Your England:
We are a nation of flower-lovers, but also a nation of stamp-collectors, pigeon-fanciers, amateur carpenters, coupon-snippers, darts-players, crossword-puzzle fans. All the culture that is most truly native centres round things which even when they are communal are not official – the pub, the football match, the back garden, the fireside and the ‘nice cup of tea’. The liberty of the individual is still believed in, almost as in the nineteenth century. . . It is the liberty to have a home of your own, to do what you like in your spare time, to choose your own amusements instead of having them chosen for you from above.
Enjoying a homely afternoon does not slay the Witch King, but it can reclaim freedom. Choosing my amusements, as Orwell says, is an exercise of personal liberty. Encouraging our friends’ daughter in her own writing and thinking is a great deed. Sharing food and laughs with dear friends is another.
Surviving ME for twenty-four years is not a string of great triumphs. It is a series of smaller choices, and finding contentment amidst the troubles. Building this new life and finding happiness has taken time. It has required courage. I hope that the choices have helped me redefine the bars of the cage, rather than accept them.
After twenty-four years, I have come to reject the false dichotomy that says you change the world or throw in the towel. There is value and meaning in living one’s life and tending one’s own little square of earth. After all, as Bilbo Baggins says in the film version of the Fellowship of the Ring:
It is no bad thing to celebrate a simple life.
This was exactly what I needed to read today. So another ‘great thing’ you have done for me.
Love you, Mary.
Perfect, perfect, perfect. Thanks, Jennie. You are a seer.
Love you, Amy.
Oh Jennie, you made me weep. The further failure of my body recently has been stunning and terrifying, thus I relate entirely to the cage Eowyn fears:“But who knows what she spoke to the darkness, alone, in the bitter watches of the night, when all her life seemed shrinking, and the walls of her bower closing in about her, a hutch to trammel some wild thing in?“ Lord of the Rings has been a shelter, solace, call to action and genuine part of my life since I first discovered them in the 60s. I reread them periodically and adore the films (OK, with one exception of character alteration, purist that I am!) As much as I always wished I was one of the brave bold characters who lived a large life, I related to the “simple “ life of the hobbits more. Thank you for reaffirming that small things are not so small and matter.
I know exactly what you mean, Nancy. I have always identified with “I feel thin, like butter scraped over too much bread.” It has been a slow process to make something fulfilling out of my hobbit hole.
ALeary’s a work in progress….
That did say, a work in progress, but damn AutoCorrect changed it to the wrong thing, grrrrr. Yesterday autocorrect kept throwing in swearwords in perfectly innocuous emails. Maybe it’s reading my mind…
I write. That is how I cope with the losses of 28, almost 29 years.
I think I would have written anyway – that was the plan for retirement – but getting that first book out was a huge lift, and having an ME/CFS main character try to do the same thing and have a life, was somehow very important. I hope I get to finish the trilogy.
Just needed to tell you how much I appreciated this. I will have to revisit Lord of the Rings as I read it in the early 70’s well before I got the flu in 1982 and never recovered.
For too many years I have been struggling to come to terms with the life I have been dealt ( ME/CFS). I have just in the last six months come to appreciate that this life is better than no life (having gone thru cardiac surgery).
I love Bilbo Baggins’ quote, “It is no bad thing to celebrate a simple life”
thanks again………
Thank you, Dee. Be well.
Thank you Jennie!
You’re very welcome!
Hitting my 29 year mark soon. This resonates. Grateful for you!
And I for you, Rivka.
Hitting year 16 in 3 weeks, and had been dreading it…until I read your post. Thank you for putting a different spin on it, for reframing the situation we face. You’ve given great comfort to me today and I’m very grateful. Thank you.
Oh thank you, Aggie. I am so glad you found it helpful.
Thank you for this post.
Time and again your posts resonate with me, but today it feels like strings continuing to vibrate long after I initially read this one.
Love you, Denise. You helped me learn this.
Thanks for your inspiration, Jennie. I’m just beginning my eight year with an undiagnosed “illness” that, for some years, became my life. Along the way, I realized that first, we are not separate minds, bodies and spirits, and second, we can’t always change what comes our way, but we can choose how we respond.
At some point, I can’t remember when, I began receiving this as a gift to take me further on my journey, and not a life sentence. I followed its guidance to unexplored inner territory that otherwise I might not have ever discovered.
When I awoke and felt just awful, I found myself saying that I felt awful and I could be freaked out, like I often was. Or I could feel awful and be happy. I was going to feel awful either way. Which would I choose? That simple realization, which I always knew in theory, has become a constant in my life.
When I tell some people about my experience, they tell me I’m out of touch with reality. I thank them profusely for noticing. My life has become ever more simple, receiving each day with appreciation. You reminded me of that again and I am grateful.
I agree. We can choose how we respond to the many many things in life we do not control. It sounds like you would really enjoy How To Be Sick by Toni Bernhard, if you have not already read it.
Thanks for a great post. I also “celebrated” 24 years recently. Also hardly noticed the day any longer.
But you are achieving great things and influencing the world for good! You are not leading a silent and small life. You are indeed leading protests! I am so thankful for everyone who uses their time, talents and minimal energy to help us all. Thanks a million! Anja from Sweden
Thank you, Anja!
I understand what you are saying. However, severe M.E prevents me from saying friends, watching movies or going out for dinner. Sitting up is hard. It is a cage. So let’s not get carried away into accepting M.E can allow for a good life. In many cases it doesn’t allow that.
Eimear, you have read my blog long enough to know that I do not ignore or dismiss the situation that people with severe ME face. In this post, I was writing about my personal experiences. These were my personal reflections on hitting my 24th sickaversary. That’s all.
Meant seeing friends
I know that Jennifer. I think fear drove my response more than anything. I am glad you had a good day and wish you many more.
Thank you for this beautiful essay, Jennie. It seems I’m not the only one who needed to read it just at this moment in my life. You are doing tremendous work to help find a cause and cure for this illness. Big things…and then small things, like this piece, which reminds us to treasure the life we have…even as we try to make things better.
Absolutely beautiful. And true. Illness is a teacher in itself often bringing us someplace deeper. Not easy for sure, but I’ve learned so much in the 30 years I’ve had CFS. Of course, I would rather not have it and I still fight the many limitations it brings. Thank you for your writing.
Thank you for reading and sharing your thoughts, Beth.
Jennie, count this as just one more “great thing” you have done. You and I have been ill with CFS/ME for the same length of time. We’ve shared similar devastating struggles and small triumphs. Your grace and courage is inspiring to me and so many others, and the beauty with which you describe our reality means more than you can grasp. There is much to celebrate!
Thank you, Lisa! I did not realize we had been sick the same amount of time.
Yes, and we’re close to the same age!
Jennie,
Thank you for this post and for all you do for ME/CFS patients.
I have just passed the 10 year mark and can’t really remember how I felt before. I often feel I’m not doing enough to help, but I’m spending my time with family and friends doing as much as I can now in case I get worse. Working the Hill really wipes me out but that is where I have the most to offer. I cannot write as you do so well.
Thank you Jenny
Chris Williams
Wow, ten years, Chris. That’s hard. I know this really changed your life.
Jennie, your life is very meaningful and you make a major contribution in advocacy for people with ME/CFS. I can’t even count the number of times that I’ve recommended your blog for information on the actual NIH funding and analysis and more.
I’m not one inclined to philosophize about illness. But someone once said to me when I complained about what I couldn’t do, “Just live.” That was good advice.
We only get one time on the planet and we have to live our lives as well as we can. I feel terrible for anyone with ME/CFS who is very limited, those with the severe form of the disease. Those people are never far from my mind.
So, I cherish even more what I am able to do, even though I have limitations.
Wonderful blog. Massive LOTR fan here too. I’m so pleased that you have found some peace.
Your words made me cry because i had also gotten to a point where i had grieved what i’d lost & was able to celebrate a simple life. But unfortunately the last few yrs things deteriorated a lot, & life has now become so shit that it’s simply an exercise in endurance, in every regard. Dont mean to moan or bring people down but i just really need to say this ‘out loud’ to someone who will understand….
“I can’t recall the taste of food, nor the sound of water, nor the touch of grass. I’m naked in the dark. There’s nothing–no veil between me and the wheel of fire.”
But
” A day may come when the courage of men fails, when we forsake our friends and break all bonds of fellowship, but it is not this day! An hour of wolves and shattered shields when the age of men comes crashing down, but it is not this day! This day we fight!”
I’m not giving up yet
Those are two of the most poignant moments, I think. The first breaks my heart, and the second glues it back together. I have been through years of just enduring, just hanging on and hoping it will get just a little easier some day. Sometimes, it took a supreme act of will to do it because I didn’t really believe it would get better. Life is full of dreadful tests, but we fight.
Yes
It sounds like it did get a little better? in order for you to be in the place you’re in now?
That’s encouraging to me because after the 1st 9yrs of being ill (which i thought were pretty bad at the time) things took a radical downturn in all areas of my life & every day has been that supreme act of will for the last 7yrs. Every yr has been worse than the one before.
But it’s good to know that other people do come out the other side… & that means i can too. I think a consistent downward trajectory has sapped all my optimism. All my hope.
But then that’s part of what LOTR is huh? that even against incredibly poor odds, even when all hope is, as far as we can tell, clearly lost…. we can still fight.
…
” I can’t do this, Sam”.
” I know. It’s all wrong. By rights we shouldn’t even be here. But we are. It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn’t want to know the end. Because how could the end be happy? … Folk in those stories had lots of chances of turning back, only they didn’t. They kept going”.
The first 2 + years of this illness I was bedridden. I then gradually improved to the point where I had 40% of my prior energy. But life events including the deaths of my husband and mother within 10 months of one another and multiple surgeries caused me to backslide for a number of years, and I almost felt like I was ready to enter an assisted living facility. Slowly, however, I regained a bit of what I had lost. Yet thyroid surgery which was soon followed by a second open heart surgery 3 years ago knocked me for a loop, once again. Then I moved and collapsed after that enormous undertaking and the great sense of loneliness which can appear after moving to a new state with no friends on hand. Presently, I have my base-line CFS days where I can run an errand or two and prepare a very easy meal or do a laundry. Then I have my “bad” CFS days where I have to stay in bed for hours/days until the pain, exhaustion, brain freeze, etc. subside. It’s not easy, as you well know, but I try to stay positive and hope for the best. “Hope springs eternal” as they say. I wish you all the very best on your journey! CFS is not for the faint of heart!
I value your posts and appreciate all of your efforts on behalf of CFS patients tremendously. I’ve been sick for over 26 years now and stopped thinking of the “number” over ten years ago because it became too heartbreaking to digest that over 1/3 of my life has been spent with severe limitations and the resulting losses, including an academic career which I loved. The loss of income also forced me to move to leave my beloved home state and move to a state with a cheaper COL. However, like you, I try to appreciate the small things in life, and the fact that I am the survivor of many operations, including 2 open heart surgeries. I try to think of my body as strong rather than weak after having endured so many different health crises and living with CFS! I am grateful that this illness allowed me to spend time with my beloved mother before she died which I wouldn’t have been able to do if I was a full time professional. Simple things like enjoying nature when I can is to be treasured, and I am grateful for the days when I am able to sit by a lake or stream for a bit and sense the vital world around me. When my energy allows it, to read a familiar book or see a favorite film is a gift. I’m living a life, not the one I had envisioned but a life, nonetheless. Thank you, once again, Jennie, for your heartfelt insight!
What beautiful and poignant posts are written here. All to be savored and thought about frequently. Yes, we endure, sometimes not a day at a time, but an hour at a time. And we try to find something enjoyable or meaningful or both.
I now look forward to my favorite daytime/nightime news panels shows, talk shows, anchor repartee, my favorite book review blogs, any humor I can find.
It’s still my life and even when I’m exhausted making some food or rinsing out clothes, I think of the moment and that I’m living in it.
Love the quote, I am remind of Poirot https://www.youtube.com/watch?v=ZLCmcvpauUI the desire for the old pursuits & profession is still there no matter how much I try hurling myself into new sedated ones.