Sometime ago, we received a wonderful handcrafted postcard from Noa (aka Chenoah) in Germany. On it, she mentioned the struggles of living with Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome), a debilitating chronic illness. She also mentioned how Postcrossing is an outlet for her creativity and helps her connect with the world while being housebound.
Over the years, we’ve heard from several postcrossers with similarly serious conditions, about how important this activity is for them — sometimes on aspects that hadn’t even crossed our minds. So, in an effort to raise awareness about these realities and understand them a bit better, we’ve asked Noa a few questions about her life and her interaction with the world through Postcrossing.
- For someone who doesn’t know, what is it like to live with chronic fatigue? What are some of the challenges that you face?
When they stumble upon the word “fatigue”, healthy folks think of being tired… but clinical fatigue is more like an overwhelming exhaustion that healthy people don‘t experience. You’re so exhausted that you might be unable not just to move (thus leading to muscle weakness) but also unable to even grasp your own thoughts or speak. It’s not something that can be relieved by a couple of good nights of sleep or even a few weeks’ long holiday. It’s an exhaustion without a cause, that leaves you totally drained.
For instance, when I brush my teeth, I need to rest for a while afterwards, so that I can then attempt to slowly eat breakfast. And when I don‘t let myself have a break afterwards, digestion won‘t work well or even temporarily stop entirely. So it’s the little things that most people won’t even consider tiresome, which wipe me out entirely.
It’s hard to be taken seriously by doctors (especially as a twenty-something female), and it took me 8 years to arrive at an accurate diagnosis and to find a physician willing to treat me. And naturally, until your condition has been diagnosed, it’s hard to get health insurance companies to help. Besides these more technical things, are the very personal ones. I‘m relatively isolated. My regulars are my husband, my substitute carer friend, who lets him off duty for two hours each Friday, and my physiotherapist who does house calls.
Nevertheless, I am still fascinated that I have someone by my side. The more ill you are, the less opportunities of meeting people there are. Visits are a rare highlight, because they exhaust me terribly, and the same goes for phone calls. One friend is allowed to call on a regular basis. She‘s a “spoonie” too — which means, someone with illness that comes with extremely raised fatigability and difficulty in recovering energy. It‘s a whispered call with long pauses and lots of muffled laughter. Sometimes we cry together, which is a good thing. And then we laugh some more, because her jealous borderline-narcissistic cat Romi is screaming like an infant to get her attention.
- How does Postcrossing work for you? What can you do yourself and on what parts do you help with?
Everything I do is slow and there are lots of interruptions, because I need some rest, but I am glad that the website is very well structured and I‘ve never lost my way so far.
Picking a card is a long process. I start with reading the profile and getting a feel for the recipient, sometimes looking into the favorites. I obviously can’t go out and shop for postcards, which I loved to do. I do have a huge stash, but walking to the boxes can be “iffy” and involve some help. Usually I end up in bed again, with 3 cards and the final decision postponed for after a break.
A concept or decoration will be thought up and I very consciously give my love, my time and my precious energy to the postcard. Art and creativity is totally my thing. I have found materials and ways to draw and paint in bed (I love water soluble crayons!), and I‘ve sent out some original artwork before or crafted cards using a print. My first two professional cards are in print at the moment, which is really exciting. They are published by a cooperative supporting initiatives helping people in all kinds of disadvantages, locally and globally.
Writing the Postcard IDs can be a little tricky, as my short-time memory is very impaired. My solution: I rap or sing them. This way, I manage to write four digits at once and the rest in a second go. Same goes for when I need to register the cards I receive.
My postcards are brought to the postbox by my husband, or the other two regulars. Even the physiotherapist has been my Postcrossing assistant a couple of times.
- How does postcard writing help with some of the challenges?
I‘ve always been pretty active and busy… but no longer being sure that you can finish a certain task in time, is definitely not a good feeling. In this sense, a postcard can be quite therapeutic: it‘s just a piece of cardboard with an empty space, that even on not so good days looks manageable. I am able to take a postcard, hold onto it, focus my attention on the task of sending someone else a greeting. Though that might not sound like much, it actually is.
I‘d been studying psychology, when illness struck, and I am well aware of how easily chronic illness can lead to depression. Helplessness and desperation together are a really dangerous mixture. Being active changes your perception of the situation. You’re not as much at the mercy of your illness, but a human being doing something.
There are even some growth opportunities in Postcrossing. I don’t like profiles that are very demanding or defining what "real postcards“ are, or those that are mainly about collecting. As I have no way, to fulfill all those demands, in the beginning, I felt horribly cornered and was quite close to throwing in the towel. Now I am able to send them something made with love, time and more effort, he or she can imagine. Who knows when they last have been properly loved on. And of course I learned to let go, once I‘m done. I am not responsible for the happiness or contentment of another person. I try to do something for my recipients, the rest is entirely up to them.
- What is your favorite part of the Postcrossing process?
I love how it allows me to re-enter the world. In average years, I leave the house like five times a year, mostly to go to doctor’s offices or clinics. I‘m no longer able to watch TV, listen to radio, or be on social media, so the world I formerly felt part of, seems now very much disconnected. I‘m 42 years old now, but do often feel a culture shock not unlike someone who has been imprisoned for a long time when I am confronted with developments, topics, … I have no knowledge of or experience with. And I do have an urge to know about the world and it‘s people, as well as be part of the world.
I‘m scared of disappearing from the public eye so entirely, that I‘m kind of buried before I am actually dead. And despite my limitations and my little overall energy, the quality of this energy is very much alive and I am not planning of changing something about it. It just feels warm and fuzzy, to be able to share it with some random stranger friends. I‘ve been blessed with a few even becoming friends. We communicate per mail and email.
The postcards I get are like colorful specks of the world I miss so badly. We Germans even have words for it, “Fernweh” and “Weltschmerz”. I think, self perception happens almost always in the context of the world or groups of people you chose to surround yourself with. Isolation is a bummer and has you redefine yourself without the world… but I wanted a context, structure, a frame. And there came a welcoming rectangle, called postcard and invited me, to fill it with whatever makes me me.
And so the world, even though still very pixelated, is becoming perceivable again. Which makes me feel very grateful. Thanks a lot Postcrossing!
- Do you have other hobbies or causes that you are passionate about?
I want the world to become a fairer and more peaceful place. And of course, to keep the world inhabitable, so I always try to not rush into decisions, but to be conscious and make as many healthy choices as possible. Anyone can help. I’ve got a small amount of money invested as Kiva loans, and I think of it as a human investment. My gain is, that I helped getting someone come closer to safety and being able to support a family.
I love animals so much that I am the godmother of Frederik, a teenager pig, growing at light speed. He has done the unthinkable and jumped off a pig transporter, only a few hours old. And he survived. I’m still completely in awe. I support Hof Butenland, the sanctuary at which he is at home now. (It’s a senior facility for former dairy cows, but they do have some other animals too). I am vegan, as best as I can under my given circumstances.
Then there is music. I’ve always been a musician and my wonderful husband and I formed a bond over immediately clicking musically, grooving and improvising including vocal harmonies, as if we had done this for ages. He is now my main carer and burdened by my illness as well. We still attempt to do one concert per year, and I sing and play strapped to my wheelchair, with my legs propped up onto a piano stool, to minimize the risk of losing consciousness. Of course, health-wise it’s a tremendously costly passion, but for my soul, it is sheer bliss because it really is my husband‘s and my favorite way of being a close unit. And we always transport messages and support causes with our concerts. So this is not just music: it is speaking out, being heard, contributing to a world and global society that is more just and fair than it is currently.
I am also an ME (Myalgic Encephalomyelitis) advocate, and I became a crochet artist when I became bedbound. And I‘ve made about 130 small dolls, called MEmis for fellow ME sufferers and a few others in need of some comfort, love and connection. Each doll is one of a kind and was made especially for this person. This project is coming slowly to an end, as I‘m no longer able to use Facebook, where many MEmi recipients are connected and where I received most requests. But as some even have their own blogs or social media, it seems to live on. Most “live” in Germany, but about a dozen is scattered all over the world.
This is still just a fraction of my interests and passions, as I am easily inflammable when it comes to enthusiasm and joy. And my dedication, once formed, doesn’t just go away.
Thank you Noa, for putting so much of your precious energy into this interview! ❤️ If you have some minutes to learn more about ME/CFS, we recommend this TED talk.