How I Learned to Embrace My Health Conditions
My journey
I never wanted to have health issues. But I have. For most of my life.
I never wanted to be different. Or at least not too different. Yes, I wanted to be unique to my family and friends. But in general, I tried to fit in, and be like everyone else. And, at first sight, it might seem like I was.
But after a second glance it would become apparent that I wasn’t. I was sure that people thought I was just being picky about my food (I imagined them thinking: Is she a fitness freak?); I couldn’t see properly but didn’t wear either glasses or contact lenses (Picky about that too?) since I got migraines from wearing glasses (Really?); I frequently had a runny nose (She must have some kind of virus!); and never participated in sports (My thoughts: I wish I could! Why am I not able to?). I hated it when people started looking at me as if they liked me, talking to me, or spending time with me, but then were dumbfounded when these strange tendencies became apparent, and I felt I needed to explain them.
Today there is a term for such unseen differences between us.
It is “neurodiversity,” which “refers to variation in the human brain regarding sociability, learning, attention, mood and other mental functions in a non-pathological sense.” — Wikipedia
Today, many great activists are working toward including everyone in our societies, whatever challenges or conditions they might face. One such activist is Will Wheeler, who has many followers on LinkedIn and through his company The Dyslexic Evolution, which uses the brilliant tagline “Embracing Difference” on its website.
But that is today. In the years between the start of my “health issues” story and the very recent past, such a term either didn’t exist or wasn’t widely known.
So, if I was supposedly different, then why wasn’t it visibly? That would’ve been easier, right? Then people would avoid me at first glance, rather than doing so only after getting to know me, and then with disgust (as I thought) or strange looks, which I interpreted as them thinking me persnickety. Getting judged at first glance would be better than on the second, right? Now I realize how deluded such a belief was, but back then I could only see and feel my discomfort at being the way I was.
I guess my story of being different began long ago, with my predecessors and those things I inherited, but my particular medical conditions started as a toddler. I got very sick then, which moved a doctor to suspect rickets and prescribe treatment with radiation. Later, in school, I fainted more than once, and after some tests and blood analysis, I was diagnosed with anemia. My mom made it possible for me to go on summer vacation to a sanatorium. There, at least once, I had to stay in bed due to low body temperature, while everyone else went to the beach.
Then, in my late twenties, I got Bell’s palsy on my right side, and doctors couldn’t say why. Recently, my eye-doctor and optician discovered that Bell’s palsy might have been responsible for my current eye condition, which doesn’t permit me to wear either glasses or contact lenses for my short-sightedness. Until then I’d thought the only effect of the Bell’s palsy was to cause the corners of my mouth to move differently when I smiled. But it seems it also affected my eye movement. The muscles on the right seem to be considerably slower than those on the left.
My latest adventure is osteoarthritis. I became aware of it thanks to an aching left shoulder. It started with something just being off whenever I moved my arm forward, like a bit of wood peeled off a door and scratching on the frame, but then it developed into a sharp pain. That pain made me aware of the pain in other joints too. I had experienced a burning sensation in my knees before, but simply ignored it. I sit and walk with a slightly bent back due to lower back pain, but I always thought I was just too lazy to maintain better posture. The joint on my right wrist hurt for quite a while, and I can’t hold anything in my right hand for too long, especially if it is heavy. But I thought it was just repetitive strain from crafting. It surely wasn’t a chronic condition requiring painkillers. I had vowed not to take medicine anymore. Well, OK, OK, I was fine with food supplements, but painkillers?!
And then, I talked to my mom, and complained to her about my joint-ache discovery. I knew she had problems with her joints too, but what she told me was a shock. “I’ve had it since before you were born. I remember the doctors trying all kinds of treatments, with salts and heating, but nothing helped. You learn to live with it.”
I Googled arthritis, and it can certainly be hereditary.
But this pain sucks! I now understand why I gradually stopped doing my beloved workout and yoga, which I practiced for over half a year and enjoyed enormously. All that joint ache stopped enticing me to get down on the floor and do the exercises.
My mom is very mobile in her eighties, so she’s living proof that you can live with arthritis — and in her case quite a few other conditions — comparatively well. But to experience pain so often? I didn’t want to. I tried really hard to be pain-free and normal. Others were normal, but not me. Why?
But it looked like I was in a vicious circle.
As soon as I thought I had got one thing under control, another strange thing appeared. There always seemed to be something about me that was different from other people. Until recently, I hated the need to explain these differences with all my heart.
Besides wishing I had the full range of movement in my eyes and my entire body, I also always wanted to be able to eat anything I wanted. But I couldn’t. I now realize this has been the case for most of my life, but most acutely in the last third.
For a long time I thought my stomach aches could only be cured with medicine. Wasn’t there a pill for everything? Apparently not.
For me, dieting was only about weight-loss, not for use in regaining health and well-being, or to reduce pain.
Just before my husband and I moved from Germany to Denmark in 2008, a doctor suggested I try a specific and entirely new nutrition plan. He sent me to one of the local healthy grocery stores, where I could buy gluten and lactose-free bread. It was an out-of-this-world experience.
I still remember how the shop looked inside, or rather how the shelves with various kinds of gluten-free bread looked, and how the light flooded the interior through the windows. I also remember not knowing what to choose: corn, buckwheat, millet, or rice bread? They all looked so different from what I was used to. If I remember correctly, I bought several — some made from just one gluten-free flour, others from a mixture — so that I could taste them all. Despite having eaten buckwheat as a child, knowing what rice tasted like, and enjoying Mamaliga, a traditional Moldovan and Romanian polenta dish made of cornflour, I still couldn’t fathom that there was bread made out of all these. And millet was so far removed from my world that I couldn’t think of it at all.
The experience of eating differently was even more amazing when the pain almost magically receded, without the need for antacids or other stomach medicine. I also began losing the extra weight I had gained in the previous decade, without even trying.
Over ten years have passed since then. I have learned a lot; I’ve read many books and articles, joined celiac communities in Germany and Denmark, and started explaining food intolerances and sensitivities to others.
Over those ten plus years, people told me again and again, “You seem to know so much; you know, you could write a book about your experiences. It could help other people in a similar situation.”
But I resisted, because I thought I didn’t want to write about such a heavy topic. Today, as I approach my whole life gamefully, I am aware that my health situation was hard because I resented it instead of wholeheartedly embracing it as a part of me.
I don’t know how long this resistance might have continued. But I know that at the end of 2018, things changed, and quite drastically.
First, I had the idea to write fiction that incorporated challenging health conditions. I was intrigued and started planning, first a romantic short story, and later a whole novel.
Then I started reading modern parables about how to have success in business and life, as well as how to become financially independent. I loved the idea of writing fiction that featured true feelings and experiences, and that taught life lessons.
At the same time, I realized for whom I wanted to write such a book in the first place: my children, Niklas and Emma. If they ever have to face similar challenges — and I’ve learned that food intolerances can “erupt” in a person’s thirties or forties (they did for me; I am forty-seven at the time of writing) — then I want them to have access to my experiences, so they have something to relate to and can feel supported as they navigate such health issues.
After several failed attempts to write the first chapters of the parable — in which I tried to squeeze in my whole story so far — I became aware that what I needed to write was a memoir. A memoir could take any shape and be whatever length I liked, allowing me to share my adventure and what I had learned through it.
However, the style of a parable offered the brilliant possibility to summarize lessons learned into a story.
On top of all that, I currently can’t stop reading many books in parallel, combining fiction with non-fiction.
And since what is fun for us is the best compass, then that is what Gameful Healing is: a memoir featuring a parable. Although the style is a mixture of two genres, it is basically about how to navigate health surely, securely, and with a light, kind, gameful, and simultaneously honest and courageous attitude.
Lessons learned
After having written Gameful Healing, which I call “almost” memoir and not quite a parable in the subtitle, I feel like the hero of my own parable, who has met and learned from so many amazing mentors. These mentors are my family, friends, doctors, nutrition and physiotherapy specialists, authors, fellow “intolerants” and “joint-achers,” and many others. They are also the designers and players of their lives’ games, and they design and play them in their own ways. I can learn so much by “looking over their shoulders.” And then I can do what the legendary Bruce Lee famously suggested.
Adapt what is useful, reject what is useless, and add what is specifically your own. — Bruce Lee
Below are the key lessons I have learned so far in my parable, while turning my life and the healing processes I choose and live through into fun games. I chose not to list them as bullet points, but instead write them down as paragraphs of flowing text as they come to me in waves of recognition and awareness. A list form feels like singular drops of a starting rain or jumping from one stepping stone to another while crossing a river. Let’s follow the flow instead and start with the biggest wave.
Life is too precious and too short to be too serious about it. Smiles, the genuine ones that I feel not only on my face but also in my whole body, including my gut, are not serious. They are playful and gameful.
To turn my life into games, I need to be and do three things, or in other words, practice three skill sets: first, be here, then move one small step at a time, and finally, be and do both in a light, fun, and gameful way.
No, I don’t always manage to turn my life into fun games.
There is an occasional pity party when I eat what I am not supposed to or either skip a wellness exercise or do too much physically in one go and cause myself pain.
Sometimes I forget to be here and start considering what I have not good enough, and comparing what I can and cannot do with others. That leads to even greater pity parties, alright. But they are fortunately not as wild and dramatic as before.
Gluten is relatively easy to avoid because of how sick I get, and the occasional accidental contamination reminds me of this. Luckily this happens much less often than before.
Occasional pity parties result in me eating some milk products, chocolate, berries, fruits, or nuts. Shortly before Christmas 2019, I had some chocolate with nuts on several days in a row, and a half glass of white wine on a few of those days. What for others would go unnoticed resulted in a voice you’d get after a drunken party (not that I’ve had many of those in my life), a heavy and inflamed stomach, a bloated gut making me look several months pregnant (or a beer belly, as a friend once pointed out), constipation that made the bloating harder to cope with, restless nights waking up drenched in unpleasantly smelling sweat and needing increasingly frequent trips to the bathroom, more cramps in my feet and legs, and difficulty breathing through my nose. And to add to all that, my teeth and gums again became sensitive (sometimes with sores) to changes of temperature and hot or cold drinks.
I continue to learn that judging myself for these indulgences doesn’t help me or the situation I am in. Being kind, honest, and caring while being fully here where I am with my mind and body, does.
I was inspired when I found a definition of the word “health” by the acclaimed and super-prolific author Kristine Kathryn Rusch in her brilliant book Writing with Chronic Illness. Here it is:
When I talk about health, I am talking about self-care, in all of its permutations. — Kristine Kathryn Rusch
So, in the spirit of taking good care of myself, I try to allow myself some indulgences without irritating my system. These indulgences don’t have to be something sweet, in terms of confectionery. It can be an activity I am passionate about, such as writing or reading, or something that feels sweet and rejuvenating, be it spending time with my husband, playing a game with my children, or meeting with friends, in person or online. All I need to do is to test various options.
Looking at it all as an experiment feels like playing with those chemistry, physics, and weather-making sets for children.
If I look at it in a gameful and playful way, my life becomes such an exciting discovery set with endless opportunities to learn something new. Just like in the best game ever that has an endless number of levels to reach, but when you reach one, you feel like an all-time winner.
The same applies to all the other challenges that could be seen as fun challenges, including my eye condition and osteoarthritis. I can experiment with various types of exercises and movements and see what’s fun for me and what doesn’t irritate my body. Recently, I had this idea to do an eye exercise while also doing squats. So I took a little colorful crystal, held it in my hand, and brought it closer or farther away from my eyes while at the same time bending my knees and holding it for a few seconds. I had a lot of fun with this “double” exercise and experimenting with its different variants.
[A side-note added during the revision of Gameful Healing: I have changed my “Well-Being” game design again. I separated eye gymnastics from body exercises once again. Who knows, I might find a way to bring them together once or many more times again. Here lies the brilliance of turning one’s life into games. I don’t ever have to stop playing with the designs of these games.]
I also discovered that I could look forward to the “games” suggested by others and try them out with an open and curious mind. That is how I feel about the physiotherapy for my left shoulder that my physician has referred me to. And I am hugely curious about the eye-test I have at the hospital in a couple of months.
Experimenting with how I record my awards (points, stars, donuts, and various types of badges) is enormous fun too. I change the colors, the names or number of the areas of my life I want to turn into games. Right now, I have three of these areas defined in the weekly calendar I call “Points, Stars, and Badges Gamebook.” They are: “Creativity and Gratitude,” “Well-Being,” and “Sleep.”
Everything I need to do for work, family, or home is “Creativity and Gratitude,” and there are certain projects and activities I decide will get stars when worked on. I call this area of my life, which is connected to what I want and need to do (excepting those that contribute directly to my well-being, as below), “Creativity” because I can be creative in whatever I am up to. It was also its name before I added “Gratitude” to the title. I added “Gratitude” because at the end of the day, or during the day, I choose five areas I’ve been active in, of which I am particularly proud, and which deserve a star.
Along with this game, I sometimes play the “Appreciation Game,” which is just a page in my project book (notebook) where I record each little step I accomplish during the day. That way, I make sure that I move in small steps and not in big jumps. After writing down what I just did, I immediately cross it out. For me, it closes the move, and I can then go to the next one.
This game is of big help on those days when my joints hurt most, my metabolism is off balance, or I am simply feeling down. All these recordings help me to become aware of everything I manage from day to day, from which I can choose some to win a star. Right now, I award five stars for five different activities I’m glad I did on that day. So you could say that I play a “Creative Game of Gratitude and Appreciation.”
“Well-Being” (“the state of being comfortable, healthy, or happy” — Lexico) is another “game” I play. It embraces various exercises for my eyes and body, as well as a place for a star if I don’t consume any added sugar, fruits, nuts, or sugar alcohols (such as in wine, for example). And “Sleep” stands for getting enough sleep at night and from occasional daytime naps, where I get a star for at least seven hours in total. Lately, I have been experimenting with recording the nap time only if I had it before three in the afternoon. I read about this recommendation on Bill Gates’ blog. So I am incorporating best practices and “testing” them for myself in my Self-Motivational Game Designs.
[An update: I recently merged the “Well-Being” and “Sleep” areas into one “Well-Being” area. You would agree that enough sleep contributes to our well-being. So, this move was natural. The rewards I get when I do something for my well-being are donuts. I draw and color them; each day gets a different color. Thus, the “Creativity and Gratitude” games bring me stars of appreciation (for myself by myself), and in the “Well-Being” games, I get donuts. For now, I collect (recorded here in alphabetical order) “Bouncing Donuts,” “Eye Gymnastics Donuts,” “No Sugar Donuts,” “Sitting and Standing Donuts,” “Sleeping Donuts,” “Straight Posture Donuts,” and “Walking Donuts.” I’m curious about what other well-being games I will come up with in the future and what other quirky names for my rewards come out of that.]
Sometimes, the experiment can go “wrong,” and my body’s alarms go off. Or in other words, I lose the game, or I perceive it as having been lost. In truth, I never lose. Even my upsets are part of my daily games. In many games, like Tetris, losing is a major part of the design, and they are still loved by many. The players of these games don’t feel like losers. They notice the number of points they gathered and try again.
I can view my daily experiences with my conditions the same way. I don’t lose when I don’t level up. My body’s reactions are part of the game called life.
All I have to do when I “fail” is recover and repeat the experiment with adjusted parameters. Or, in game terms, you might say start the game again and try different moves than before to achieve the level. Or even re-design and then play it again.
Through all these experiences, I have learned that to live a happy life doesn’t mean to live a constantly blissful life. That is impossible, and would be utterly dull if it was. To live a happy life is to experience ups and downs, like on a fun roller coaster. There, we don’t feel like our lives are at stake or out of control, even if we don’t know what the next curve will be like. We appreciate the surprising and sharp turns on a roller coaster. And the same is true of games. We appreciate the challenges games pose because we learn something new with each one.
We often perceive real-life situations as burdens, rather than something fun and exciting. We put too much drama on them instead of being open to experience them and discover something new.
A gameful life can lighten and brighten the real-life occurrences and help us to see them as a collection of brilliant games.
Yes, my life is a collection of many fun games. Each day is such an exciting collection.
Another beautiful thing happened along the way. I learned to trust my body. Trust that the experiences I have had so far are valid. Trust my body, my sanity. Trust myself. I forget that sometimes, but I recall it more often than before. That was one of the most important lessons on this journey.
My body does communicate with me a lot, including the bodily sensations of cold and heat and so on. Also, the possibly crazy thoughts my brain generates are signals that I (or my brain) need to interpret.
I am aware now of my delusion when I believed if I only overcame one challenge, I would never have another again. Now I see the colorful cocktail of my health conditions and challenges and remind myself that at any time another surprising ingredient might appear that I need to learn to incorporate so that the mixture works together. That might mean deliberately adding something of my own, like a new exercise or a new self-motivational game, or the same ones with a new name and adjusted design.
I will also need to make sure I have a constant supply of fun, so my Fun Detecting Antenna needs to be around and switched on as long and as often as possible.
[A side-note: The Fun Detecting Antenna is an extraordinary device, which is nothing else but an awareness of what is or can be fun for us in whatever we are up to.]
I hope I will never stop looking for analogies and parallels between what I have to deal with and anything gameful and playful — and live my life as if it is a game. With that, I will serve not only myself and improve the quality of my life, but also the lives of others around me, especially my loved ones.
I am immensely happy and grateful to have seen and experienced many times that there are infinite ways to apply and test the tools (components) of Self-Gamification: awareness (anthropology), small steps (kaizen), and gamefulness (gamification).
Will I have more challenges to master, more levels to reach? Surely!
But it is up to me to make this process a fun game. The best thing about it is that I get all the freedom here, because:
I am both the designer and the player of the great collection of games called my life.
From Gameful Healing: Almost a Memoir; Not Quite a Parable (Gameful Life Book 2).
Thank you for reading!
How do you master your health conditions and what are your lessons learned? I’d love to hear from you in the comments.
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About the author:
Victoria is a writer, instructor, and consultant with a background in semiconductor physics, electronic engineering (with a Ph.D.), information technology, and business development. While being a non-gamer, Victoria came up with the term Self-Gamification, a gameful and playful self-help approach bringing anthropology, kaizen, and gamification-based methods together to increase the quality of life. She approaches all areas of her life this way. Due to the fun she has, while turning everything in her life into games, she intends never to stop designing and playing them.