“Take care of each other.”
Those were the closing words in Anne Ortegren’s suicide letter. Anne’s death came as a shock to many of us, myself included. Anne was a friend and long-time supporter of my work. She made a final request to me (and others) to publish her last letter. I took a long time to write this post because I wanted to do right by Anne, but also do right by my fellow people with ME.
Let’s start here: If you are in crisis, please reach out for help. In the United States, consider reaching out to the National Suicide Prevention Lifeline: 1-800-273-8255 or the Crisis Text Line: text START to 741-741. International readers can find country-specific resources in this list of crisis lines organized by country.
Anne is not the first person with ME to end her life, and there are far too many who went before her. We all feel the blow when this happens. Yet, most of us are not surprised that this is an issue for our community, and research backs us up on that. A study from last year found that there was an increased risk of suicide in 17 of the 19 health conditions examined. Beyond the risk associated with being sick, author Johann Hari recently wrote, “if a community feels it has no control over the big decisions affecting it, the suicide rate will shoot up.” Between the fact that ME is a serious disease and the fact that people with ME feel they have no control, it is not at all surprising that we are at an increased risk for suicide.
We need hope, and I see two different kinds of hope. First, there is hope at the institutional or systems level. In her final letter, Anne made a plea for this:
To allow ME/CFS patients some hope on the horizon, key people in all countries must step up and act. . . . I want a number of people from these agencies, and equivalent agencies in Sweden and all other countries, to stand up and take responsibility. To say: “ME! I am going to change things because that is my job.”
There is a second kind of hope, and that is the personal or private sense of hope everyone needs regardless of health status. It is the hope that, no matter how awful things are in one moment, there is the possibility that another moment can be better. Bruce Campbell calls this “realistic hope,” a combination of “acceptance and belief that improvement is possible.” While Campbell is referring to improvement in physical health, I interpret the hope of improvement more broadly.
One lesson I learned from Toni Bernhard’s books is impermanence. No matter how I feel in one moment, it will not always be so. This is a comfort to me when I am in pain, whether it be physical or emotional or spiritual. Toni calls this “weather practice,” and I have relied upon it to get through the last three years. In the depths of my grieving for my Mom, and my fear about my husband’s health, I have drawn comfort from the reminder that I will not always feel as bad as I do in a particular moment. And when the change comes, and I experience something wonderful, I embrace it as a gift (knowing that it too will not be permanent).
This is the essence of hope: that regardless of the pile of shit you are in right now, you believe there is the possibility of a moment of beauty or love or relief or comfort, even if you cannot catch a glimmer of that moment right now. I wish it were easy to sustain this kind of hope, but it is not. We need supportive people in our lives. We need a basic level of economic security and healthcare. We need to find meaning, even in our suffering.
I keep coming back to how Anne closed her letter: “Take care of each other.” How can we do that when, by its very nature, ME restricts our ability to take action and interact with the world? Those of us who are able to advocate for systemic change can do so, as Anne did. But I think Anne was also asking us to take care of one another in an individual way. Here are my suggestions, as a starting point.
We can take care of ourselves. Self-care is an enormous topic unto itself, and it is cliche to say that we have to take care of ourselves in order to take care of others. That doesn’t change how important it is, though. Anne wrote about the coping techniques that helped her. I know that if I consistently took her advice, I would be in a better place physically and emotionally.
We can be honest, good and bad. It is important to be honest about how we feel. Sometimes, expressing our pain can be a relief, especially when people respond with support. Sharing good news is great too. And sometimes, being silly or outrageous can lift your own and others’ spirits.
We can listen. I find myself skimming people’s lives on social media. Read a status, hit the like button, move on. It is better to slow down, and hear what someone really wants or needs to say. Maybe you can do this through an email or phone call, or maybe it means reading a social media post more carefully. Maybe it means asking a question. Regardless of the communication method, we can give each other the gift of listening.
We can believe each other. How many times have you read a comment from a person with ME about a treatment they tried or something they did and thought to yourself, “That’s not true. That treatment worked/didn’t work for me. I can/can’t do that thing they did.” I’ve done it, and people have done that to me. But measuring other people by our own personal, individual yardsticks rarely works out well for anyone. Instead, I try to hear the comment as being true for the person who made it. We’re not a collective judge and jury. We’re a community of people who happen to share an awful disease. It actually doesn’t matter (on the person-to-person level) if someone takes an approach that doesn’t fit mine. I choose to believe their experiences are true, and I appreciate it when others believe me.
We can encourage each other. Anne was unfailingly kind and encouraging to me. As I reviewed the messages we had exchanged over the years, I was struck by how many times Anne reminded me that my work was important and that it had an impact. She wanted me to keep going. A few years ago, she wrote to me: “Just know that – if you do have the energy and possibility to keep on going – you and what you are doing are important to a huge number of people. Those you hear from, like me – we are only the inner circle. The effect then goes on to many, many layers beyond that.” These messages meant so much to me when she sent them, and mean more to me now. I will strive to be encouraging to others as well, both in advocacy and in friendships.
We can reach out. Did someone cross your mind today? Tell them! I am always so grateful when someone messages me out of the blue with a virtual hug or funny meme. My friend Barb surprises me with occasional pictures of her pet lizard, to which I usually respond “KITTY!” Joey and I sometimes end up conducting conversations exclusively in gifs. Last month, I received a most generous and unexpected gift from my new friend Nancy. The reality is that we are so isolated by ME. A surprise “I thought of you today” feels really good! Pro tip: it feels just as good to surprise someone as it does to receive the surprise.
At the end of her life, Anne wrote: “If, hypothetically, the physical suffering could be taken out of the equation, I would have been able to live contentedly even though my life continued to be restricted to my small apartment and include very little activity. Unlike most people I could find such a tiny life bearable and even happy.” But Anne’s life was not tiny. She achieved more within her restricted circumstances than most people could. I am so sad that she is gone. Everyone who loved Anne is in my thoughts, and I hope that people with ME will remember her. She shared so much of her “tiny” life with us, and tried to make our lives better.
What I am slowly coming to understand is that our lives are beautiful, painful, scary, comforting, and loving. The truth is that no one is spared suffering. The truth is that our lives, whether tiny or large, are a mixture of pain, pleasure, and monotony. My friend Josie writes about her “small, slow life that covers an area of less than a square mile” too, and she says this better than I ever could:
We are very rarely prepared to let anything be boring, to be ordinary. How easy it is instead to shade our experiences, to plump them, maybe in the hope that today or one day soon, they will better prove how much we overcame, how hard we tried, how deeply we lived, and how much we deserve care and love and success and all the rest. And who can blame us: we are all just trying to get by and life can be so horribly hard. . . .
The sparrows in the beach hedge call, “Can we not be enough? Can we not be enough meaning for your life today?” and the twist of my son’s hair at the nape of his neck says the same, and I want to say yes, yes, yes, you are enough today and every day and this is a good life.
My hope for all of us is that we can let our lives be tiny or boring sometimes, and that we also realize that each of us is not tiny at all. Like Anne, we live large, and we leave a mark.
Think Emmy! Think James! I do…a lot! And I ..Think Jennie! Love you and I need you?
Sorry, need you,!!!
Dearest Jenny, many thanks for this. You just reached out right into my heart and gave me that little extra to care for my daughter Manon. Too much for her to read but I can drip drip your caring thoughts on this awful illness. You are right in saying that the ripples spread far and touch many. Manon has found ways to fill her restricted space with tiny efforts which reap huge rewards. Many a time just a word or two, even when you don’t know the person, can mean the world. Your writing is important. Thanks.
Thank you, Helen. Sending my best to you and Manon.
Beautifully written, thank you x
Another wonderful terrible post that leaves me devastated and hopeful
Such a beautiful post. Thank you Jenny. We are alive and we struggle every day. So do many others, with and without, CFS. It is important to remember that our lives, though different than we had assumed them to be, have meaning and value. Thank you for reaching out to all of us and reminding us.
It took me a long time to realize that our lives still have meaning and value. It helps me to remember that.
Me too. I imagine there are lots of us like that.
This is so beautifully laid out Jennie. I can’t begin to express how valuable it is to remember that we are community even if we feel alone. That tomorrow might be a better day. That the next hour may bring an unexpected ray of sunshine, some small joy.
You’ve brought something very special into my life with your insight and clarity. Thank you.
I was racking my very foggy brain to remember a quote I had recently heard that kept tickling the back my mind when I was reading your post. Found it:
“Because if you don’t even believe in the possibility of magic you will never ever find it.”
Even when I’m at my worst, you remind me that I need to remember this.
Oh and funny enough when I looked up where this quote originated, I found that it’s from the TV show Castle. It made me laugh out loud because I was expecting some deep philosophical read as the source (or Harry Potter).
Sending hugs with the possibility of magic to everybody!
Oh I love that quote. I think it applies to possibilities for so many good things – beauty, love, happiness. And you made me laugh because I would have guessed Harry Potter too!
Thank you for these lovely words Jennie. I have read them with care and feel as though I have absorbed the message within them. Mary
A more beautiful final call to action could not be written.
Thank you for writing this piece. It is timely and sheds light on a dark place for very ill people. It is a conversation that needs to be aired.
Jennie, I’m one of the people you so often touch with your words without even knowing it. I have occasionally thanked you for your activism on behalf of all of us ME/CFS patients, but I haven’t thanked you for the many times you’ve put into words something I’ve thought but didn’t know how to express, or for the times when you’ve brought a fresh perspective to one of the many perplexities of living with this disease. But your post today touched me on so many levels that I couldn’t let it go without expressing my thanks.
What you do matters not only on the large, global level of ME/CFS politics, but also on a personal level of the individual human heart.
Thank you so much for saying so. <3
Thankyou for being one of my voices. Especially for our unique situation, a disease left dangling without specialty in the past continues today. Researchers leary about getting involved because of ME contentious scandals. Patients portrayed as angry, difficult and demanding when we just want to be heard and believed. Equality really, instead we have been treated like leprosy patients – shunned from society. That undersrtandable final treatment of Suicide when treatment is too far off. We all have a threshold. I like the name someone suggested “Living Dead Disease”. Jennie, please persist if your health allows, you have been an important cog in the wheel for ME justice. You are an ME Angel.
I will persist!! A few years ago, I told Anne that when it gets so hard that I want to give up advocacy, I hang on because I won’t let the other side win.
Thank you. Rest up. 🙂
Thanks, Jenny.
Some days seeing sunshine out of the kitchen window or birds or reading a good book or having a nice conversation with a friend or exchanging kind words with an acquaintanceor giving a homeless person some food or money — those can all uplift one’s day.
I say this as I have to come to grips with the fact that my 29-year-old nephew ended his life in December. He did not have ME/CFS or another physically debilitating disease, but he suffered from depression. And he was alone across the country with no support network nor job with co-workers. He had lost hope, I think. He was a beautiful, sensitive, smart, witty, kind and generous person.
So, what I say here is reach out to people when you need to and be kind and good to yourself. Find ways to have a good day, even if it’s only a small event. And find ways to connect with people to avoid total isolation.
Enjoy humorous books and TV comedians. Humor helps to deal with despair.
We only have one chance on this planet. We have to care about each other and ourselves. We have to appreciate the everyday events, but we have to appreciate each other however we can.
I am so sorry for the loss of your nephew, Kathy. Your advice is very wise.
Beautiful, Jennie. You have inspired me with your love.
Thank you so much, Sue.
Thank you Jennie! For everything you expressed so well in this post, I had my M.E. officially diagnosed ten years after getting ill with it, my GP hasn’t even got time to read up about it, some members of my family and community don’t even think I’m ill, because I am at home all day some think I should be able to get more things done. Recently I have had to deal with a family drama and they cant understand why I haven’t been able to cope with it. People can be cruel to M.E. sufferers, their ignorance is enough to make one feel like killing oneself sometimes. I hope that Anne’s letter will shed some light on how M.E. patients are feeling, and once and for all dispel the cruel myth that we are just being lazy.
I hope the people who doubt you will come to understand.
Really try not to let those who doubt you get to you. Ignore them, put them aside. Don’t listen to them. Know that you feel how you feel; your own health and stamina are known only to you. And they don’t know it. But you have to validate yourself. Give yourself a break. Give yourself pats on the back for getting through another day, for whatever you do.
And you do have the entire ME/CFS community in the U.S. and worldwide to validate you.
Poignant and uplifting post. I’m really sorry about your friend. I didn’t know her but just hearing you talk about her (er, write about her) conveys the playfulness and simultaneous depth/meaning in it. Keep up the good work.. Anne would obviously be proud. Xoxo
Jennie,
Thank you for telling us about Anne and your comments about “institutional hope” and “personal hope.”
Anne’s plea for key people in all countries to say “ME! I am going to change things because that is my job” is certainly what should be occurring. Collectively we have to carry on Anne’s fight.
I’m so glad that you are going to “persist” and “hang on” because you “won’t let the other side win.”
You and Anne are both role models who inspire others to “persist” and “hang on” so the other side does not win!
Dear Jennie,
Thanks for your post. I think of you often and your words on your blog and social media help me. And your Twitter likes cheer me.
I knew Anne just a little, and I am sad, too.
She was right to tell us to take care of each other. And you wrote a lovely post explaining this.
((hug))
Thank you so much for what you do Jennie. I have moderate ME but still pretty much live in an almost square mile at a senior facility. I am very lucky that my pain is moderate and I have meds that help – not only with ME/FM, degenerative disc disease, neuropathy, and arthritis. So many cannot tolerate meds. For a long time I was editor of a newsletter here in N. Carolina but it became too much when my husband became ill and then died and I had to take care of a house and me until I could sell and move here. I was depressed for a while but then I had a good talk with myself because here there are so many who are living in that same square mile with a variety of illnesses and disabilities.
I am but one and compared to those who suffer so severely from ME, I am one lucky gal. I’m still unpacking and packing boxes for Good Will since moving out of my house in 2015. Its taking me a month of Sundays but God has kept me keeping on at 78. I was lucky to have Dr. Lapp as my specialist only a few miles away so again I was one lucky gal in spades. I used to be an encourager to many with ME by helping them understand the illness when they either hadn’t been offically diagnosed or were newly diagnosed.
Many cannot believe this has been around for so long and so few research dollars are set aside for us. After watching “Unrest” I wish I could afford copies to send to members of Congress to help them rethink what is spent to research this and ensure that its taught in medical schools. We can only take care of us so we can take care of others. No matter what we are able to do, its doing our personal best. I wish I’d known Anne as I can tell she made a different.
Thank you Jennie for introducing me to Anne.
Thank you for recognizing that Anne made a difference!
As I read this e mail and Anne’s letter tears come to my eyes. I am a mother who is nursing my son with ME/CFS. He is very ill and bedridden. When will our society start paying proper attention that this illness requires?
I feel for all who have this disease!!
My best thoughts to you and your son, Helen.
I just read this post and comments.
Is there any way to post the link to it on this website so we can easily
find it in the future?
I can do that! I’ll add it to the menu bar as soon as I have a chance.
Thank you. I’ve read this three times.