How our lives started was, that I was born in Poland and with ca. 1,5 years, my parents decided to move to Germany, by that time my mom was pregnant with my sister. So it was our first international travel together!

Many more followed, because the rest of our family stayed in Poland so when we were old enough, my parents would send us to Poland via a Bus travel agency in our summer vacations. In these days it was common to do that instead of flying and we always had a Lady who assisted us & took care of us on the trip. Back then, we did not have mobile phones, so if our parents wanted to reach us, they had to call the bus driver.

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I was always very aware of my responsibility of being the older sister, I felt protective over my sister & never wanted anything to happen to her. So when we were on these bus tours, I would always sit next to the aisle, she would sit by the window. Like that I would always know if she needs to stand up, go to the toilette or whatever else. I was fine in compromising on a less good sleeping position by not having the window to lean my head on.

Apart from these bus trips, I also always felt protective over her in our everyday life. Whenever I witnessed someone being mean to her or saying something mean about her, I would be very upset & defend her, I did not like that at all. She was not the easiest person to deal with, also not for me, but I never accepted that anyone would hurt her in any way.

It is funny, because I used to be the super shy, quiet & calm daughter, while my sister would be more rebellious, loud & would not take shit. Our mom joked many times that it would be good if we got a bit of each other sometimes to balance out our rather extreme differences.

I also remember that we fought a lot, we also played & got along, but there were always fights between us and we did not manage to clear them out properly somehow. We always got back to play & do things together, until the next explosion & fight which felt awful.

I know that many siblings fight, its nothing uncommon, yet I knew of some examples that didn’t & I always wished for a more harmonious relationship with my sister. After all, it is just the two of us, so how amazing would it have been to get along!

…fast forward: BÄM! We live close by in the Arctic! And we have a better relationship that I would have ever imagined! Its beyond average as to what I can observe and I cannot even explain how happy it makes me. Such a miraculous occurrence! Living together abroad would not have been a possibility just five years ago & now it feels as natural as it could be!

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This is what I meant in the beginning, that now my big-sister hat is activated more, cos we live close by. And I need to be aware when I overstep and get into protection mode, cos I don’t want her to be harmed.

By now we are grown-ups, we are responsible for our own lifes & life choices. Of course I do everything to help with fixing things, registering her etc & I am always there for support & such. Yet I need to be careful to not overstep and get into big-sister- mode, or even worse: mom-mode.

How do I do that? By being as aware as possible, by communicating openly, by also listening to her reactions to what I say & do & reflect upon them. Also take her words & impressions in, as a reflection of my behavior. And if it is necessary: I apologize for my misjudgments & misbehaviors to her. Explain & share my thoughts & just say that I am sorry.

I also tell her that she is allowed to tell me when I overstep a certain line, that when she feels not treated okay, she should openly tell me. Otherwise I might not notice & miss out on an opportunity to grow & make our relationship even stronger.

It takes some courage to do that & I know in the past this was very difficult for me to do, to admit that I did something wrong, especially towards her. It was not so difficult to apologize to others, but with her it was different.

I am happy that this changed because I am convinced that for relationships to work out, there needs to be open, honest & vulnerable conversations and a type of repair-process needs to be in place too. Especially because disagreements and even fights will occur either way and after intense periods, trust might get broken and to reconnect, the relationship needs to be repaired.

I have had friendships & relationships degrade and break because of a lack of open and honest communication and no repair process in place and I do not want this to be repeated with my sister. So I better keep on being open, honest & vulnerable & challenge myself as much as possible :)

What are your experiences with big-or-small-sibling hats?

Love,

Daria

It started in high school, when I picked the subjects or my majors that I was drawn to and it continued when choosing to study biology and focus on plant science. I also picked the labs I worked in, based on how well I connected to the people, as this always has been something important to me.

After my Masters, I decided to continue to do a PhD. Why? Again, because I felt drawn to it. Mainly cos I loved science, doing experiments, solving riddles, I loved to read and write and I also felt it would be an extension of my youth somehow, cos it did feel that I would postpone my entry into adulthood with this.

Did I care about the title? Nope, not once did I feel that this was the reason to do a PhD, neither did I feel entitled or better than other people having a PhD. If I am honest, I often forget it these days, this title is not a conscious part of me, it is basically a batch I earned, that’s it :-).

What I identify more with, is what I learned on the way. About science, academia, plant mitochondria and senescence, and also about myself! THAT is a big deal for me. My supervisor back then told me before I started with my PhD, that it will be a learning and discovering about who I am as a person, much more so than the science itself. Back then, I had no idea what he meant. But he was 150% right about it.

Me saying that I do not care about the title doesn’t mean that I dismiss it, on the contrary. I am very grateful for the experience and I know that doing a PhD is not easy.

It has taught me who I am as a person more and more. I learned resilience, dealing with frustration, setting boundaries, I learned that I do not like to be told all the time what to do, be dependent on someone else’s ideas and just execute.

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I learned about how academia and the science-world works and that I am totally not a fit for it. I realized that most people get seriously broken during a PhD, mentally and emotionally. I have experienced scientists that care more about their plant model species than about any other human being.

I realized that the strong, and almost sole focus on the mind and the brain is just NOT what is healthy for me, neither do I believe that it is healthy for any other human being.

We humans are more than our mind and brain. We are made of a whole beautiful body below our head! Disregarding our heart and soul, our feelings, emotions, our gut hunches and intuitive hints is harmful to our well-being.

Doing my PhD taught me the one-sidedness we see ourselves is not what I align with, at all.

It also taught me, that being myself is the only way to go. From the beginning I shared with my supervisors and co-referees, that I don’t want to work on the weekend, that I also want to enjoy my life outside of my PhD. They agreed.

I introduced “Karneval” to the institute, by one day showing up in a lemon-costume & spreading candies to the people. Even though I was “The new PhD”.

I wore all the colors & crazy earrings & dresses that I wanted to wear. I openly shared how I felt about all kinds of things with my supervisors. Even if it was things like “I dont care how brilliant of a scientist he is, he is a terrible human being, misbehaves towards people, so I respect him less & don’t want to work together.”

It was not always easy, especially things like the last example, where I shared my views and values of the world, people & what I deem is appropriate and also unacceptable for me. At the same time, I also wanted to make a difference and help, so I engaged myself in different positions like being the PhD representative etc.

Along the lines of being me and becoming more me, my scientific journey and my PhD made it possible that I found back my love for art! I realized Science needs Art and I started to illustrate Science for myself and others. This led to my decision of starting my own company after my PhD and become a scientific illustrator.

I would have NEVER imagined starting my own company! I am the least business-person there is, or maybe I “was” that person in the past. Without my PhD, who knows where I would have ended up, so I am eternally grateful for this journey!

So overall my PhD time taught me a lot. It surely made me who I am today and I am happy I took this route in my life!

And I know, even if I don’t care about the title per se, other people do; so who knows, if it does me a favor of being taken more seriously in this world: why not ;-), even though I never had the feeling I am not taken seriously, that can’t possibly harm me!

Love,
Daria

First of all, I would like to clarify that I won’t go into details of books, authors, specific religions or when I read what, found out how, and talked to who etc.

I have written scientific articles and pieces in my life before and I am currently exploring a more intuitive and explorative writing style, without restricting myself by the burden of proof, citations or references.

Instead, I would like to share parts of my life and experiences with you, and if you feel like wanting to know more about parts of it from me, ask away. If you want to learn more about it from others, I encourage you to find the literature and references that fits your specific interest the best yourself :-).

Of course, you can also ask me, I might know some good pieces, but I am also very bad in remembering authors and titles, so it will be a lucky shot for you to try ;-). and lastly: maybe no external material is needed: how do you feel yourself about all this?

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Here we go:

While having written several of my hat-posts now, something comes up that I am wondering about...

Cos I have some hats I describe as not being chosen by me, rather my parents or society: l like my Daughter-hat or Sister-hat; hats that are determined by biology: like my Girl-hat, or other hats I clearly picked myself, like my Scientist-hat.

However, is this really true? Haven’t I actually picked all of my hats? In agreement with the closest people in my life?

Let me elaborate on that, I can promise you it will become a bit unconventional, so if you feel like its too weird, feel free to jump off this exploration train now ;-)

I grew up catholic, so what we were told is, that when we die we go to heaven or to hell, depending on how ‘good’ or ‘bad’ we were in our life. I personally always liked the idea that I will go to another place when I die. I imagined, I will float around like angels do and look at all the people living their lives on earth, just like my ancestors agree floating around in heaven and looking at me all the time. It was a given for me.

It's also not really that church or a priest told me that scenario. In my child-like mind and with my very strong imaginatation, I loved the idea of different creatures like angels, trolls, elves, aliens and whatever else is out there, floating around us. I took it as set that they existed and that I will become one of them when I die. I also never even thought of the option to end up in hell. Why would I? I am a good person so hell is not the place I will go to. Is there even something like hell?

The older I got, the more I was exposed to other belief systems and cultures and the more I moved away from catholic church. Becoming a scientist made me not think about religion and faith too much, at least not consciously. At home my mom would often speak about the “Universe” and its powers, the fact that it will always balance out the good and the bad. For me this was something I believed in as well, it included all the creatures I knew existed around us, they are part of the universe as well, just like us. We live together in parallel worlds.

I used to say that there is something more to our existence than only what we can assess with science and scientific methods, I still strongly believe that. For me it doesn’t matter so much if it’s called “God”, or “Allah” or “Buddha” or “Krishna” or whoever else. Maybe it’s all the same? Or maybe they all live together in respectful peace & freedom up there in heaven? Who knows.

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I met several scientists that were strongly against religion & believes and just thought if we can’t prove it, it’s not there. They often felt proud of how logical and rational they were, after all, it’s all about objectivity, data and numbers in science. I wondered, and sometimes I mentioned that too: usually, even the strongest non-believers, when facing a tragedy in their lives, they start to ask for help to someone out there, who is not a doctor or scientist. Speaking to “something”, asking for support & healing of the beloved is a type of prayer. To a type of god. Or the universe.

Is it logical? No.

Does it sooth our painful, hurting heart? Yes.

To me that means, there is something more than our logical and rational minds and something that our hearts & souls connect to, crave for.

When I learned more about other religions, I came across the concepts of past and future lives. Something I have not heard of before, but clearly something that immediately resonated with me. Even more so, I loved the idea of having had past lives as other personalities, in other settings, with other people and also the option to enter a new life after this one!

How exciting is this to think about? That my current adventure of life will end one day & another one will start! I can’t imagine something more awesome than that. I feel that these believes also help me to not fear my own death, but that’s for another time to explore ;-)

So now that I admitted that I believe in past and future lives, what does this mean?

I assume that I am not the only one that has past and future lives, and that I was able to be many different personas, which means that its my soul that is the one that gets transferred into those lives and bodies.

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This again means, that other people’s souls do the same & we basically travel around in different timelines, sometimes together, sometimes not. I also believe that souls can build friendships, there might be some souls that like each other more than others, they get along super well and they decide to travel together into several different lifes.

And because that is fun to do, why to not mix it up sometimes? “Let us be friends in this life!” “How about we incarnate as partners the next time?” Or “What about I will be your grandma & you will be my grandchild, then I can spoil you as much as I want!  We have had a pretty rough time last time, now I want our relationship to be pleasant!”

To me, this makes soooo much sense! I truly love this idea! I also think our souls and soul friends pick challenges that we want to face and difficulties we want to learn from. They basically come up with a plan on what to do, how to do it, where, who else is involved, how they look… basically working out all the details & then “Puufff” the souls get transferred into a little human embryo and the adventure begins!

Now, what does that mean for me and my hats?

Very simply put, it means I choose ALL of them myself, together with those souls that are closest to me, that I like the most, who are enow my family & friends. We came up with me looking like I do, with my blond hair & my disability, with the family dynamics that I grew up with, with the friendships and relationships I had, and still will have in my life… all was thought through about me and my loved souls in my past life and now the adventure is to live it, without knowing what and who will come next, simply enjoy the ride & make the best of it.

If I before said that wearing my Woman-Hat and Disabled-Hat was decided by biology, that is still true, because the biology of human beings is based on certain principles. My soul did her plan before that, and biology executed it basically.

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Maybe you wonder, how can she say that? Especially being a scientist, it doesn’t make sense!

Well, to that I say: I am still a scientist, I am a biologist & can trust & believe in the laws of nature, molecular biology, biochemistry, genetics & all other sciences. AND I can at the same time hold space for everything that is not scientifically proven, yet ;-). To me, both can coexist. And trust me, I have troubles sometimes to hold space for seemingly contradictory feelings, but somehow I managed to be a scientist and an artist as well, so it’s possible to throw in religion & spirituality on that too ;-).

The most important thing here is: do these believes harm me or others? They clearly don’t. What I believe in affects firstly me, and believing in past and future lives is a relief for me, on many levels. As I mentioned before, it makes me not fear my own death… while I still fear the death of my closest loved people immensely.

It also makes me feel grateful knowing that I chose this life path, it was not random, it was not cruel to take away fingers and toes from me, but there were lessons to be learned from it, and I wanted them myself. It also means, my family and friends and other human-to-human interactions were decided before. It brings an overall ease to my life, my thoughts & my emotions and the general feeling I carry inside of me.

It also contributes to my curiosity of exploring all kinds of ideas, concepts and keep being interested in different ways of living life and doing things.

In the end, I have to admit that I love to be many things at once, to wear all those different hats & integrate into the Daria that I currently am! And I am excited which other hats my soul has planned for me to wear in this lifetime!

Love,

Daria

Wonderings:

Do you believe in past & future lives?

Is there more than science can explain?

What brings ease to your life?

An expat, or expatriate, is a person who does not live in their original home country anymore, where all their family lives in. I was born in Poland and while my mom was pregnant with my sister, we moved to Germany when I was 1.5 years old. I grew up in Cologne, moved to the US for half a year and then with 26 I moved to Sweden for my PhD. Ten years later I still live in the North of Sweden in Umeå and to be honest, I feel that I will die here :-), and it makes me very happy.

What does it mean to wear the expat-hat?

First of all, it means that I did not grew up with my grandma, grandpa, uncles and aunts or cousins in close proximity. My parents did not have easy-access babysitters when needed and I wasn’t constantly spoiled by my grandma ;-).

It also meant that we spend the majority of our summers in Poland. We went there for six weeks at once regularly and it was always a great adventure to spend such a long time on the farm of my grandma. She had chickens, ducks, turkeys, rabbits, dogs, cats, fruit trees, a tomato greenhouse, fields of wheat surrounding the house and neighbor kids in the same age than we were. It meant constant play, exploring, adventures and all of that without our parents. We had my mom’s sister who in a way became our second-mom, as she did not have children yet at that time.

It also meant to learn how to travel alone very early on. We often traveled with the bus, my parents sat me and my sister into a traveling-bus who collected people in Germany and drove them to Poland. When kids were on board, they would sit in the front, the closest to the drivers and a co-pilot, who was usually a lady, always took care of us. Whenever the bus stopped, she went go with us to the restaurants or the toilettes and made sure we were safe. In those days, flying with planes was not a common way to travel yet.

My sister and me also had our rules, the one I felt most strongly about was that she was supposed to sit at the window & I was sitting next to the aisle. Like that I would always know if she got up to the toilette or tea and my Big-Sister Hat and the responsibility I felt was taken care of. I always felt very protective over her and didn’t want anything to happen to her. On those trips we also never fought, which was a rather uncommon occurrence, as we were fighting a lot when we were younger ;-).

Now being a double-expat, it means that I have two “home countries” with family to visit. You can imagine that a lot of vacation time is spend in either Poland or Germany and it can become exhausting, because if I live abroad and come for a visit, everyone wants to see me and spend time with me and vice versa.

So its often tightly scheduled vacations to make sure we all make the best of it and spend time with each other. It is quite normal to feel a bit exhausted after those vacations and I used to become very tired and even sick afterwards. Energetically speaking it was draining me, cos I did not have much me-time.

However, with time I got better, now I know when enough is enough, I dont put too much pressure on me and I plan for breaks and easy activities, so I can make sure that I get the rest I need. I love to visit my families in both countries because I feel that this time with them is extra precious. And we keep very good contact with each other, I get plenty of visits here in Umeå too :-)!

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What I also realized is, that I needed to move away from my family for my own personal growth and development. This doesn’t mean that I don’t love them, but living far away means that I was not bound to social conventions so much, I was more free to do what I truly wanted, without feeling bad about potentially others who could be hurt by it. Not that I want to hurt them, but often people take things personally and I am a very considerate and empathetic person, so I used to rather compromise on myself than others.

This changed since I live in Sweden. The spacial distance helped with all that and now I am better at setting boundaries when I am with my family and friends and I feel that I became the person who I was supposed to become through living abroad.

It also makes my friends here in Sweden feel like family and I also have the feeling that my relationship with my family overall improved. It’s not that it was bad, but a different type of appreciation exist when you don’t see each other all the time. It is less likely that we take each other for granted and special occasions like round birthdays become even more special when everyone gets together!

All my family members and friends from anywhere in the world also have a vacation location to visit here in Umeå. The arctic is an exotic place to be and I can tell you that I have at least 1-2 visits every year, either from my family or my friends.

It is truly possible to build and maintain very strong family bonds and relationships even though living in three different countries as a family. What it needs is a strong base, care and love, respect and appreciation, an open mind and willingness to make it work.

Love,
Daria

Art is much more vast than just painting: its music, its play, its sculptures, its dance, its words, its buildings, its books, its movies, its videos, its thinking, its troubleshooting, its even science… its basically everything and everywhere, its creativity in any imaginable format there is. It’s life.

I deeply believe that every human being born on earth is an artist, just like each one of us is a scientist from the get-go.

My observations of young children in my family or from my friends show me that each of these kids is an artist; some love to draw and paint, others love to make figurines, others express themselves through making sticker-books, some love to write, others can build great blanket caves with super-duper high coziness levels, others again love to play with toys and come up with amazing storylines… and if one thing doesn’t work, another way is explored, or a collaborative effort is set up & if everything fails, you can always ask a grown up for help :-). All that is art too.

The list goes on and on, there is no end to children’s creativity and artistic expressions… well, maybe that’s not really true, because as soon as we get into kindergarden or school, we are taught very specific things… ( attention: short discourse coming in… :-D)

There is only ONE solution to this math problem, there is only ONE way to interpret the poem, there is only ONE meaning with the analogy the author came up with, there is only ONE possible interpretation of the scenario the artist painted in his surrealistic painting… thinking different, feeling and perceiving different in school is not always encouraged.

We are also all supposed to be good at the same subjects, often those are Math, English and our native language. Because those are the topics that count, who cares about music or art? No one, these are not real subjects, not even pedagogy is important, religion or philosophy? Pah, unnecessary too… Biology is not important either, cos we have math for that… yeah right…

I went to school in Germany, additionally I practiced my polish on the side with a friend of the family & I went to different arts classes, cos I loved art & to paint & to draw.

If we had the chance to pick a new subject at school, I would always pick the one I liked the most, the one I was drawn to. So when we had to choose our majors, guess what I picked? Biology and Art ;-), and Spanish and Pedagogy as secondary subjects.

Why? Because I loved them all! I loved nature and biology, I loved to paint and to be creative, I loved the sound of Spanish, and I loved pedagogy because I love people, psychology and human-human interactions. For me, these subjects represented exactly the perfect mix of who I was & what I loved.

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I was the only one with this combination, there were very few with an art major. I once had a friend in my master’s studies who was super surprised about my choice, because it was so untypical, he even questioned, why would I do that? I mean: why not? Why would I pick something that everyone picks, even though I don’t like it? Pointless. To me, these decisions are an expression of my artistic & creative mind, cos I did what I felt was best for me, no matter what everyone else chose.

But school does that to the minds of children, it forms them to be, think and do in the same way, even though we are all different. There is no room for creativity, for art in its purest form, which is the same as science: curiosity, questioning and wondering and creating upon that.

Being an artist and being curious spans into all the aspects of our life!

It shows in our thinking processes: how easily can we adapt, come up with a new, different, maybe unconventional approach?

It shows in our relationships: how do we interact with each other, with who, in which settings, how do we speak to one another?

It shows in our cooking: how and what do we cook, the same all the time or do we mix it up?

It shows in our hobbies: do we have hobbies, or do we only work?

It shows in our work environment: who are we at the workplace, how do we relate to others, they to us, what is our role in a social setting?

All these need creativity and art! Is any of these taught in school? Nope.

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We don’t learn how to think flexible, because there is just one right answer.

We dont learn how to deal with failure, cos if you have many F’s, you are supposedly dumb and worthless & wont be able to make a living.

We dont learn how to cook, how to keep a household, how to deal with money, how to deal with emotions, other people, social settings… we don’t learn who we are at school.

We are all pressed into one mold.

School does not prepare us for life, it often takes away the most important aspects for making a great life happening: keeping our inner child-like artist & creativity alive is one of these essential aspects that I wish to never die out in anyone of us.

Cos creating a fulfilling life is an act of true artistry & creativity.

To me, an artist is a person who manages to artistically & creatively go through life and create a fulfilling life for themselves and their loved ones.

Writing all this down, makes me realize that it’s the first time I express what I think about the word “artist” in a healthy way… because until recently, I did not have a healthy view of what it means to wear the “Artist” hat…

I grew up with a talent for the visual arts, I might one day write about the word talent & what I think about it, now I would just deviate again :-D

Most likely I got that practical talent from my dad, he was a brilliant artist, barely any other ten-fingered person I know is as great as my dad when it comes to artistic skills.

However, my dad was the typical plagued, deeply hurt & traumatized artist, that would go about life in a bit of a troublesome way. That is what he lived, how he lived and how I experienced and saw him, forming my view of the “typical artist”, therefore also never really being able to identify with the word “Artist”.

I surely got my artistic creativity for life from my mom, cos she was and is highly creative and she managed to apply artistry & creativity throughout our family life, all the time. She was the driving force behind what went well, she steered our family ship, no matter the bricks & cliffs that would be throw her way, my mom always found a way to not make us all crash.

THIS for me is being a true Artist, an artist of life, who makes it work no matter the circumstances, does the best she or he can and keeps on going.

That is a definition of “Artist” I gladly identify with, cos I feel I am trying my best to create a happy & fulfilling life for myself and my closest loved ones. I am facing challenges with my most open mindset, trying to apply whatever it needs to face those challenges and at the same time, I am also a “typical” artsy artist, who loves to create and paint and craft and just express my artistic side into physical reality.

Love,
Daria

Wonderings:

What do you think about the word “Artist”?

Do you also wear the hat of an artist?

And: I actually don’t believe that having a PhD in a natural science field makes you automatically be a good scientist.

Sooo the question is:

What does it actually mean to be a scientist & wear this hat?

For me personally, being a scientist is all about curiosity, it is wondering, questioning, trying to find answers and explore the world around us. On all kinds of levels, with all kinds of methods and all available senses. It’s a full-body experience.

This means to me, that every human being born on earth is a scientist from the get-go. We are actually trained-out of this innate trait of ours…

The youngest of our species are often the most curious, fearless and limitless beings there are. Most children naturally ask a lot all the time, they wonder, question, explore and learn by actively interacting with their surroundings: be it people, the blanket they lay on, animals, nature, the food they eat: everything is inspected. Depending on the developmental stage, there are different approaches that they use.

Also, depending on how we grow up, how others approach us, we either keep our curiosity & innate scientist within us, or we lose it. If I would constantly hear “Dont ask, stay quiet, it doesn’t matter…” I naturally might rather lose my curiosity. While reactions like: “Oh, that’s an interesting question, it’s because….” or “I dont know, let’s explore together!” might keep my curiosity growing and expanding with time.

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I am lucky to have grown up in a family setting where curiosity was valued, sometimes my mom would have to push a little bit because I was very shy, so finding out what I wanted to do was not always easy. She always encouraged me to pursue all kinds of art classes, all hobbies I wanted & she used to say that I should do whatever I feel I like the most.

We would go for nature explorations, in the forest, to the sea, my dad would show me what is what, I was able to explore nature, plants and animals and generally speaking, I feel that I never lost my curiosity and my wonderings, to this day, being 36 years old.

You might still find me walking around and inspecting my surrounding, I will always stop for any animal that crosses my path, I will smell flowers and touch whatever I find interesting to experience it directly.

Luckily, I have many grown-ups in my life that have a similar curiosity inside them, and not all of them are studied and Phd-ed scientists. Because curiosity is essential and not only about biology, plants or human sciences, physics or chemistry, languages or history: it is about everything!

Its about asking and wondering about oneself: who am I? Why am I like that?

Or about others: Who are you? Why do you react the way you do? Why do I react the way I do when I am with you? To me, this is basic, human, scientific curiosity.

It is also about being curious to find solutions to challenges we face. Let’s say, I am stressed all the time: why is it? How can I change it? What are tools I could try? How can I explore them, in which setting, with which teacher or guide or friend?

It continues to: What do I want in my life? Why do I want it? What makes me feel joy? What are work settings that I thrive in? What are my gifts? What are aspects of myself that I could work on, so I become a better me & therefore a better coworker/friend/partner/parent etc?

This basic curiosity enhances our life, and those of others around us. If we don’t ask ourselves those questions, if we don’t self-reflect and know who we are, it is easy to get drowned into a victim-mentality, blaming others for their effects on us and become what others make of us.

Cos here is the important thing to mention: asking those curious self-reflective, scientific questions to ourselves is not egoistic either. If we are not curious about ourselves, why would we be curious about someone else? If we don’t care how we truly feel, why would we care how someone else feels?

On the opposite: if we only care about how others feel, what they do & why, and we try to comply blindly & accept all they say, do & how they behave, even though we don’t agree: we will end up being miserable.

So, not knowing our own basic value system, our morals & our boundaries will lead to a path of unhappiness.

And all that, just because we were not curious and scientific enough to ask ourselves: who am I, what do I want?

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The best academic scientists that I know, are not just those who publish tons of scientific papers and are academically smart, but those that also care about other people. Those scientists who truly found their calling to be scientists AND support every person that comes along their way & care about their well-being and development.

The best academic scientists are also those, that never lost their child-like curiosity and can apply it to science and the rest of the world we live in, in the same way.

The best non-academic scientists I know are curious about life, explore all its factettes, ask and care about more than their own little bubble, without having a PhD.

The best non-academic scientists I know also have many practical skills and know many theoretical concepts and thrive experiencing life to their fullest, with an open mind, heart and soul.

I have decided to leave the academic sciences, because I felt that there is not enough of this scientific curiosity when it comes to other people, other humans & our innate human-ness.

I often asked myself: “How come plant scientists care so much about a small weed, but they don’t care about humans as biological systems & disregard their natural needs?”

For me, being a scientist is something innately present in every human being. It is also very easy to recognize whether this underlying natural, scientific curiosity is present in another human being: oftentimes, those humans have a very direct and open gaze, strong presence and groundedness, they ask a lot, they listen deeply and make others feel seen and heard.

Have you meet such curious human beings yet? And what do you think it means to wear the hat of a scientist?

Love,
Daria

What did it mean for me?

It meant christening, it meant communion & confirmation, it meant going to church on Sundays, but only with my mom & sister, my dad refused church; it meant being part of the kids choir, it meant singing, sitting on wooden benches, kneeling on un-polstered wooden, hurtful boards, “eating” Christ’s bread, sometimes going to confession & listening to different priests telling us various things about life, the bible, God, Jesus & everyone else involved. And dressing nicely as well. And meeting friends too.

Did I like it?

Well, sometimes yes, parts of it. I liked the singing, especially when I saw the white books lying on the church benches when entering. This meant more fun & child-friendly, happy songs and a younger, more modern priest, vs the black old books, with mostly sad, draining & serious songs. Funny if I think about the color-coding and meaning of these church singing-books... I also liked to meet my friends, the community-feeling I got.

I did not like the smell of church incense, I did not like priests telling me how to live my life, being intrusive. I did not like the sad songs, I did not like when in polish church mess the priests would tell us to “Fear God!”, talk about the devil & spread unease, judgment & fear.

Somehow, I could never understand why God should want us to fear him, it didn’t make sense to me. It often also felt boring to sit still & listen to someone talking & preaching to us, or me. Who is this person, that doesn’t even know me, but tells me things?

And: why does a priest care about the “confessions” of a little child? I was sooo nervous before my first one, I didn’t even know what I should say. I fought with my sister, yaayy. What kind of sins can a young kid have? The shame of admitting it to a stranger? Ummm… And do grown-ups really share their deepest worries, sins or fears with priests these days? I certainly didn’t and still don’t.

I had a very interesting conversation with my 18 year-old cousin this summer. He lives in Poland & because he grew up like that, he still goes to church. He said something along the lines “Confessions are pointless, they were used by priests to be sneaky & know all kinds of gossips that were going on in their parish, keep being at the source, updated & all. And to guilt-trip people, judge them & spread even more fear and gossip.” I do think he was partly right & I have myself not experienced an eye-opening moment around confessions with a priest.

Some of the stories I heard from family members were:

My uncle told me that back then, he & his now-wife had to find a priest to give them a signed paper & officially allow them to get married, knowing that she was pregnant. It took them a while to find such a priest.

My dad told us several stories on how he saw priests groping the girls in his class when he was a younger, how he was condemned to draw naked bodies during school lessons & got punished for it, while seeing that behind his back the priest took his anatomically correct drawings with him… I guess we can imagine what for. Understandable that my dad condemned church.

The older I got, the more critical I became towards catholic church myself. At some point we stopped going to church, only on special occasions like Christmas & Easter. I found out about all kinds of terrible things specifically catholic church was and is doing, so I didn’t want to engage with them.

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I also experienced protestant church & loved the freedom & ease that I felt there. & the fact that there were female priests & they were allowed to have a family! Why is that even something forbidden in catholic church?!

I met two female, protestant priests here in Sweden. Every time I was blown away by finding out what it is they do, how they see things, how they interact with people, children and what immense and strong support they are for their community. Its such a relieve to hear that priests exist that are supportive, helpful, non-judgmental & in service to other human beings! And not condemning aspects of life and judging decisions and personal circumstances & choices. AND not threatening people with fear!

I love it! I had no idea that this existed. Mind-blowing and certainly bringing ease to my damaged catholic-infused soul.

All these experiences around church when growing up, made me avoid the word “God” and “Jesus”, and it also made me refuse to see myself as a “Sinner” and feel fear by someone else telling me to feel fear, just because they say so. No, thank you.

However, I always believed that there is something more to our existence. My mom called it the Universe & the powers of it and I liked that idea. I always felt the universe around me, and I felt angels & creatures and I felt protected & guided. Don’t ask me how, why or in which way, I just did. It gave me an ease I liked & I could avoid the charged words that reminded me of catholic church.

I also never understood why at school we were assigned to the class ‘religion’ based on the hat our parents made us wear. I could only go to catholic class. Why wasn’t ‘religion’ including all the religions in the world?! Why did I never learn about Islam, Judaism, Buddhism, Hinduism and whatever else? Especially because we had different cultures in our school. Such a big, missed opportunity.

At the age of 34, I started with classes of mantra meditation. Several other occurrences in my life lead to the point that I finally managed to meditate regularly. I got to know my first teacher Elizabeth & I immediately felt a connection to her. Mantra classes were twice or three times per week & we would sing Hindu mantras, Sufi mantras, Christian and Arabic ones and also sing/prey to God, Jesus, Mother Mary & all kinds of other saints, gods & goddesses. It was and still is very religiously-inclusive, exactly what I wished for in school.

And guess what?! It took me quite a while to be able to sing to these three catholic characters: God, Jesus and Mother Mary. It brought unease, disgust, pain & feelings of dislike in my body. I refused to sing those mantras & use these words in the beginning.

It got better after a while of being exposed to it, speaking about our catholic backgrounds & history & how it shaped us & our generations before us, the pain & terror that was experienced, that still sits deep down in each of us. Yeah, even scientifically spoken, on genetic & epigenetic levels traumata get carried on from generation to generation, also religious traumata.

By now I am fine with using these words, singing the mantras & I don’t feel unease anymore. But also only in certain settings with certain people. Because I won’t share all that with someone who wants to fight me on faith, believe & trust, the Universe and God. It’s pointless. I didn’t want any priest to tell me those things either, so I won’t push it on anyone else. To each their own :-).

What I learned being in my mid-thirties now is, that the institution of church and priests have not much to do with religion, believe, faith & God. It’s mainly man-made institutions, run by normal humans and not representing the potential deep connection & ease that comes with believing that each one of us can choose to have, or not.

I still feel my deep connection to the Universe, this has never changed & I am grateful that I found a way & got some help from Elizabeth to heal some of those wounds that I got along the way wearing my Catholic-Hat. I feel that my connection to the Universe & God is going to continue & deepen even more with time. I am glad I found mantra meditation & that it made it possible to integrate my not-self-chosen-catholic-hat better into who I am as a person.

And I will continue wearing it together with my science-hat, which will be another exploration I will dive into in the future ;-)!

Love,

Daria

Wonderings:

Do you have a religious hat that was put on you?

How are you feeling about it?

Can you embody it or not yet?

Well, yes,… and also no.

Just like dad-jokes exist, blondie-jokes existed when I grew up. And they were specifically targeted to blond woman. And guess what one of the main characteristics of those blond women is? They were very dumb and stupid. Somehow never the brunettes were stupid, or the red-haired woman, only those with blond hair.

We used to have, also still have it maybe, the typical stereotype of a blond woman, in a pink dress, nice makeup, being portrayed as superficial, and again: stupid. Barbies used to look like that too, till now that changed a bit, but the stereotype of a blond, dumb, well-dressed woman, with long hair still persists somehow.

For me, being a long-haired blond woman my whole life, I never cared about these jokes, they were ridiculous, not even funny and honestly very stupid. I would love to know who came up with those? I never felt attacked or hurt by these jokes cos I knew they were not true, I was certainly not stupid and I knew many blond girls that were not stupid either.

And yet, I was always very aware of the attention I drew on me, and it often seemed to have been because of my hair...

Maybe good for you to know, I always had very light-blond hair, I still have, even now in my mid-thirties, it never got darker. I never colored it either, its still its natural virgin color it always had :-D. The sun does its due diligence in changing its hue throughout the year.

When I was younger, my auntie would always point out that people looked at me when we were walking the streets in my hometown in Poland. I was drawing attention without even doing anything. I did not particularly like it, I felt embarrassed & I never liked to be in the center of attention. Her theory was that they were doing that because of my hair.

When I was travelling in Mexico with my then-boyfriend and his family, I stood out so much, just because phenotypically I was obviously not local, people would look at me as well. I kept on ignoring it. However, by then I developed a strategy that I still noticed their looks, but I would actively not pay attention to it.

My peripheral vision and awareness became quite good. Also good to have in Mexico City, which one never knows what could happen on any random street. On one occasion, a car passed us & my boyfriend was asked if I was a prostitute. While standing there in shorts and t-shirt, with a family! Insanity! I immediately covered myself up.

When I went to India the first time, I stopped counting how many times people would ask me to take a picture with them. Again, I was obviously looking different. My teacher told me that for her blond daughter, it was like this all her life as well. Another confirmation I collected that somehow blond hair seems to draw attention. She explained, it’s a shiny glow that surrounds us because of the light color of the hair. In a way, that makes sense to me. Bright things often get attention, so does light hair.

The fact that this occurrence was not only something I experienced, and it happened in many different social and societal surroundings, makes me wonder why that is? It also seems to be a beauty-ideal. In many countries women color their hair blond regularly. Why is it like that?

I have to be honest, I am happy with my haircolor & I don’t feel like changing it, cos the time & effort doing that would annoy me. At the same time, I know through experience that I get attention, no matter what, at least partly because of my light hair. This is why I used to avoid to dress a certain way, to not draw even more attention towards me. It was a bit restrictive I have to be honest and I admire when woman do it anyways.

I was always happy that as a scientist, I was surrounded by other scientists who did not pay too much attention to clothes, no fancy shirt-&-tie attire needed. Being a blond woman in a male dominated field dressing nicely when people knew I was smart, was maybe even a bit of extra fun to do ;-), just to break the stereotype. Uh, that’s generally something I like to do! Breaking stereotypes!

…But honestly, I am a bit surprised how much time and text this Blondie-Hat took till now… I didn’t expect that and I am not sure why that is…maybe it is not that superficial, maybe there is something more important & worthy to think about here…

There is this thing that floats around in society, of victims and perpetrators, of woman and men and assaults that happen; if they could have been avoided, why, how, by who etc. It’s a sensitive topic and there is NO JUSTIFICATION for anyone doing harm to another person, be it a woman, a man, a child, a grown-up, a blond person, a brunette, in a dress or in pants. It is never okay!

At the same time, what does that mean for me now? With all the observations and experiences I just described to you? I was never the victim of any assault, I was never even a victim of bullying, even though I am a blond, disabled woman.

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Me knowing that these terrible things exist and that my hair draws attention to myself, should I still walk dressed up into an area of a city where I know criminal activity is high? No, I don’t want to do that. Should I color my hair and dress in potato sacks? No, I don’t want to do that either. Does all that I have described here mean, IF something happened to me, that it’s my fault? No, I dont think so. 

The only think I can do is, to be who I am, how I am, don’t cause harm, be aware of my surrounding and try to keep myself as safe as possible. Does this mean that I play into the hands of agreeing to perpetrators that its my fault if something happens to me, by trying to keep myself safe? I dont think so.

Its a confusing topic... Should I be offended if someone wants to protect me, especially a man, because I can’t protect myself? No, I don’t think so either. I would feel honored if a man feels like he wants to protect me, I would not be offended at all & blame him of believing I can’t protect myself; cos physically speaking: I am weaker than most men. For me it is a great gesture of safety, trust & care.

Does this then mean that I am not a strong woman, that I agree that women are weak? Nooo, of course not! I am both, I am a strong person and I am also a weak person, on different levels, and being both of that is totally okay.

Just like I am a blond woman, with a PhD in Plant Science and my own company, clearly not stupid. Therefore, if you see me walking around in a pink dress, it's because I love it and like to dress up sometimes, even if I will look like a stereotypical Barbie. I dont care.

I didn’t expect to end up with such tough topics when writing about my Blondie-Hat. This just shows that everything is connected and relevant to explore.

I feel that the important thing is to be aware as much as possible what is going on in our surroundings and within ourselves and why, and then decide what is the best way to operate, without compromising on our safety and truest self.

Love,

Daria

Wonderings:

If you are a blondie too, what are your experiences?

Does it matter to you how people look?

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It was a dark Saturday. Mainly because we had a storm roaring, dark clouds, rain, it was in the afternoon & my parents were taking a nap.

I felt a bit of pain in my lower abdomen, went to pee in the bathroom & noticed my red pee. “Did I eat red beets?” I wondered; no I didn’t.

After further examination, I realized I was bleeding. Welcome Hat of Womanhood!

I didn’t want to wake up my mom, so I decided to look into her period-stuffs & picked a pad that I stuffed in my panties. I felt weird to use a tampon, how would I even put that thing up my secret parts? No thanks.

It also felt weird to wear a pad, like a diaper, even though I clearly had no conscious memories of my baby- or toddler-hat at that time anymore.

Well, that’s that, I was a woman now. I talked to my mom later on & from then on, it was a monthly reoccurrence.

I quickly realized, that having a period seemed to be something not pleasant for most woman, something annoying, an occurrence that would rather be avoided, something disgusting even!

If I think about all this now, it’s truly a tragedy! How come such a special occasion is seen as a burden, as something shameful & disgusting? Society clearly failed here.

No wonder I was super surprised when my first boyfriend told me: “I don’t mind, it’s okay for me either way. We can also just hang out & watch a movie” when I told him one day, that I am on my period, feeling ashamed cos I thought he wouldn’t want to have sex with me. My relief! You can’t even imagine.

Other than that, after my Womanhood-Hat appeared, not much changed for me. Sure, puberty came, pimples came, sometimes really badly and I was very un-womanly, as I was not interested in boys for a long time. I had plenty of boy-friends, they were awesome to play with, hang out & go on adventures. I also had many girl-friends, it didn’t matter to me so much if my friend was a boy or a girl.

I sometimes even doubted, if I would ever have a boyfriend, because who knows? Maybe no one would like me cos I was also wearing a disabled-hat, more about that hat of mine in my first two posts :-). But I got a first boyfriend with 19 & it was a great one, I am truly happy about our almost three years together. He will always have a special place in my heart!

Oh yeah, one other thing changed! I got another doctor! I was officially allowed to go to this specialized medical professional: my very own gynecologist! Not only mine of course, he was my moms as well ;-)!

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And guess what: I liked him a lot! I didn’t even mind to go there, no matter the general check-ups, the more specialized ones, or the emergency cases: I enjoyed my visits to him.

Why, you might wonder? Cos he made it feel normal. We talked about all kinds of other things, everyday things, school, studies, life & on the side he checked on me & my woman-parts & all was good. I can’t stress enough how important a great gynecologist is! HUGELY important!

Other than that, being in my mid-thirties now, my Woman-Hat has become a normal thing to me. I still notice the dislike about periods in some of my fellow women.

However, I clearly see a difference when it comes to reproduction, it is quite important in our age group & it suddenly becomes a more present topic, or at least its consequences of young, new humans popping up here and there. But also, the devastating effects, if this part of our womanhood does not work as it should. We suddenly seem to see and feel its importance much more than when we were younger.

I wish we would be taught differently as girls, from the beginning, the very day we get our period.

I wish we would grow up knowing how special it is to have our period, what a beautiful & miraculous occurrence, one that should be honored, loved & appreciated.

After all, we carry the possibility to bring other humans onto this earth, be it boys or girls, it’s a huge honor & I wish all parts of it would be celebrated more.

Love,

Daria

Wonderings:

Do you remember the appearance of your Womanhood-Hat?

How have you felt about your period?

Did it change over time?

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Yes, newest research shows that it’s the egg that chooses the sperm. Either way, my mom picked a sperm that made me, me, the girl Daria with two X-chromosomes :-).

Now what does it actually mean? What’s the deal with this girl-hat?

First of all, I have a vagina & a vulva, I have a uterus & the potential to create other human beings, I also got into a female hormonal cycle when I got to a certain age & I developed breasts. Those are some of the biological features that make a girl a girl, or a woman in the future.

There are also some societal features that come with it. Depending on the generation, the attitudes of the parents & the little girls’ preferences, that can look very different.

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In my case, I liked dresses, skirts, I loved colors, I enjoyed playing with plushtoys, I also loved to be outside & climb trees & go on scavenger hunts with my friends. I never liked horses, so I didn’t go for horseback riding, I liked to paint & to draw, to read & do riddles… hach, I liked so much, I dont even know if any of it was specific to me being a girl, or me being Daria & just liking & doing those activities. I had boy-friends that liked those things too… So who knows…

I surely know that I did not wear open sandals for very long time. It was always closed shoes or sneakers, mainly cos I was ashamed of my differently looking feet that were caused by my disabled-hat. If you are interested to know more about that hat, have a look at my last post :-) :

But I do remember some things I was told to do, or not to do, because supposedly “girls don’t do that.”

Swearing was one of the things. I shouldn’t do that because its not nice for girls to swear.

I also should never walk home alone, especially at nights, always with someone I know, just to make sure nothing happens to me.

I also remember that I used to be rather shameful & hiding my body, not really sure why & to which extent, if it was general body-shame or something sexual. I dont know, but I know my parents told me later, that they were joking amongst each other saying that they hope this stays like that until I am older. I guess with the hope of me being protected from harm. It didn’t stay, I surely still have some insecurities, but I don’t hide myself like I did when I was little.

Also, it shows a bit of something sad when it comes to girl-bodies. Something that indicates we might need to hide ourselves to be accepted or be extra careful nothing happens to us. There seems to exist something shameful about our bodies, which it actually is clearly not true, or shouldn’t be true.

I used to also go to saunas together with my mom. In Germany, they are all-in with nudity in saunas, so I still have a rather open mind & accepting attitude towards naked bodies.

Now being a woman, I can however see how this general shame spreads a loonggg way till womanhood in some of my surroundings, with all kinds of issues & insecurities coupled to that. Again, such a shame we don’t honor all our bodies appropriately.

I also had a bit of other special circumstances growing up.

My dad is an artist, a bit of a special one… or let’s say, he partly painted special things. He was great at all kinds of artistic skills: sculptures, wood carvings, paintings, drawings, landscapes & surrealism. He was also very inspired by humans and human bodies, both male & female bodies & he was very anatomically correct & realistic in his artistic depictions.

Many of his paintings were very tasteful representations, but there were also many surrealistic & twisted pieces, most of which were hanging in the bedroom of my parents, which outsiders would never enter. We as kids would of course be allowed to enter, but I have to admit that as a child I felt shame about those paintings. I had no idea about what they meant. I knew that they were showing anatomical parts of our bodies that are usually hidden, shamed & sexualized.

Now as a grown up I find those paintings fascinating because they are an entry point to my dads mind. He was and is a very troubled & closed person, we barely had emotional access to him & looking at his art from the past, I can recreate some of the things and pain & sufferings he must have gone through.

They are like a gateway to another dimension, of another person, someone who created me, who I am 50% made of. We are and will always be connected, so will his past & the generations before him.

I have no idea how exactly these experiences of his paintings made me wear my girl-hat, but now I treasure those paintings & also know that there are certain times and ages to see and deal with specific topics and parts of our human experience.

Love,

Daria

Wonderings:

What does it mean to be a girl to you? Or a boy?

How do you relate to nakedness?

Do you feel shame about the physical body you are in?

Leave a comment

With all the medical and scientific parts covered last week, I’ll come to the more human and social aspects of growing up with a disability-hat.

For me having 8.3 fingers and only four toes is a normal state to be with. I mean, I don’t get what you are doing with ten fingers, isn’t that a few too many ;-)?

I have always been very aware about my hands and feet, aware that I look different than most other people and interestingly enough, I felt more at unease with my feet than my hands. I cannot tell you why, but I disliked the fact that my feet were always smaller compared to other kids feet.

When going shoe shopping with my mom, I would deliberately buy larger shoes and then stuff them with kitchen paper to fill out the space that my toes couldn’t reach. I guess that was one way to put up an illusion of normal feet. Even though my feet were also shaped differently, I always call them banana-feet as I find that they are shaped like bananas.

It went so far that I did not want to go to swimming classes in elementary school. We came up with a chlorine-allergy so I didn’t have to go swimming. I also learned swimming very late and when I finally decided to participate in those classes, I would wear socks. Either white ones or skin-colored ones. Yes, I know that this made them look even more different & might have added to potential attention, but somehow that felt better than showing my four toes.

Generally, I did not feel so much shame around my hands and fingers. I also was always the kid that could paint and draw the best. In high school I would sometimes do the art home works of others and my friends “ordered” posters or paintings from me.

You must know, I was born in 1987, I grew up without phones, computers, printers and the internet. So when one of my friends had a postcard of a band cover or something else and they wanted to have it as a bigger poster, they asked me to replicate it on a larger format.

Maybe this made me feel fine with my hands, I dont know. By now, in my mid-thirties I can say that I am not bothered with either my feet or my hands. I walk barefoot, I wear open sandals, no socks, I swim and do whatever I want to do without hiding these parts of my body.

I also have to say that I was fortunate to not really have been bullied in my life. I remember one situation in the school bus, when I entered and a group of three boys I knew and went to school with every day sat there already. They looked at me and one of them spread out his finger and said “E.T calling home”. I felt a bit embarrassed, didn’t say anything and it only happened once. That’s it.

I never felt bullied, I never felt disliked, disrespected or not taken serious or lesser than others. And I went to normal kindergarden, elementary school, highschool, university etc., so I met ‘normal’ people, from all kinds of different cultures, being well aware that bullying happens everywhere, in all kinds of forms and extents, to all kinds of people. Just not to me somehow.

Up until now I cannot explain to you 100% why it did not really occur to me, neither my sister. My feeling is that we both had something in us that made us immune towards it, others didn’t feel the need or wish to attack or bully us about our disability hats.

Maybe it was the effort my mom put into our education and how she raised us. She never made me feel worse or different, she did always ensure me how valuable and worthy I am, I seemed to have gained some kind of deep and basic trust when it came to this aspect of my body.

It would simply not define me, it still doesn’t, until now, even though I am officially 50% disabled. A friend of mine who lost his whole foot in an accident joked with me of being jealous of my 50% as he only had 20% and was much more impaired in his life than I ever would be.

When I was a teenager, I sometimes wondered if I would ever have a boyfriend, if someone else would like or love me with my hands and feet. And surprise, surprise: it turned out that I did have several boyfriends and there was no problem at all. I remember my first boyfriend took some time until he introduced me to his parents, most likely because he didn’t know how they would react. They loved me :-).

There are some things I observed over time, one of them is that children are way more open to ask about my fingers than grown-ups. They are more openly curious and wonder about things that are different. The older they get, I assume the more conditioned they become, the more shy and reserved they are about it. The younger ones openly look, wonder, start moving their own fingers to try to replicate it, sometimes they ask if it hurts, sometimes they just want to touch it and that’s that, moving on. There is no shame in them about their curiosity with regards to another person.

Grown-ups behave differently. I found three categories: those that see my fingers and immediately ask; very, very few fall in this category, honestly, barely anyone.

Then there are those that notice it & immediately look away, feeling clearly ashamed, afterwards trying to avoid the trap of looking again; I often manage to catch these moments because of the irregularity in their movements. Not many fall into this category either because surprisingly: most grown-ups just don’t notice my fingers, third category.

Don’t ask me why, I have no clue about how this works. My theory is that we only see what we know that exist or: I move and behave so normally, I don’t hide my hands, so its just normal for people. Finally, there are those that notice super late after interacting with me, be it working together, doing a hobby or any other situation. I find out further down the line that they were super surprised they didn’t notice before and felt awkward to ask so late. And they realized it doesn’t matter anyways.

It usually is me who opens the topic about it cos it fits the situation, I make a joke or such, and then they might ask: “Yeah, by the way, how come?” The fewest grown-ups ask to touch my hands, so far I only had two doing it. I didn’t mind as it was not intrusive.

I used to get a bit disappointed or upset, especially when my boyfriends didn’t ask me about it. I thought it shows no interest or care, but now I know that’s not true. It has simply never been a big deal for them, no point to ask about it unless it comes up naturally.

However, one boyfriend told me in a conversation, that he spoke with his mom about it, around the topic of children. I was shocked, cos we haven’t discussed it ourselves and they were guessing that surgeries could be an option. Honestly speaking, that was one of the red flags, cos instead of asking me & my experience, he would rather talk with his mom about it, both not knowing anything.

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Surgeries are another big topic when being disabled! Yes or no? What type of surgeries? I had my long-term dancing partner asking me once, if I would consider prosthetics. He is a highly intelligent person and I was very surprised about this question, because to me it was pointless. For my hands it wouldn’t make a difference, its not that I am missing an arm or part of my leg, where a prosthetic can do wonders!

Also: the surgery aim for hands like mine should never be to take the standard 10-finger-hand as an ideal goal. It’s impossible to recreate such a complex part of the human body and make them fully functional like a ‘normal’ hand. What is crucial is, to work with what is there and see what and IF something can be improved when it comes to functionality. No unnecessary cosmetical interventions.

There is actually so much more to say about surgeries, I will keep it for another post in the future :-).

Overall, growing up and living with my disability-hat never really had any bigger implications for me. I went through the standard education, I lived abroad and did my PhD abroad as well, I started my own company. I never felt limited in anything I did. I also never felt that I was not taken serious or mistreated as a disabled woman in science.

When working in the lab, I was often even more efficient and handy than my 10-fingered-human fellows, even though I had to stuff in the additional fingers of the lab gloves, so they were not in my way :-D. Somehow I had kind of a normal, standard life, at least if I compare it to people that have been bullied, mistreated and made felt bad because of maybe a bigger nose, their height or their freckles.

Funny enough, I dislike my crooked nose and huge forehead way more than my hands and feet, and I actually really like my differently looking fingers and toes. I think it’s interesting to notice that I get bothered more about aspects of my face than my extremely differently looking limbs. Human psychology, what a mystery ;-)

With this post I hope I opened up a space to freely ask me anything around this topic. I would like that fewer shame and an open curiosity around disabilities exist. While I am aware that non-disabled people will never know how a disabled person reacts, I want to be one of those disabled people that you an come and ask about it :-)

Love,

Daria

Wonderings:

If you also wear a disability-hat, how has it affected you?

Do you maybe know someone with a disability & how was it for you interacting with this person?

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To start off this series, I decided to begin with my disability-hat. This hat is a bit of a special hat, mainly because it’s not a very common one and most people dont dare to ask about it, so I decided I take the first step ;-).

It’s a hat that I did not choose myself, but it was given to me by biology, mother nature if you want so. In a way, I think that sounds beautiful: it was a 50% chance for me to get this gift of nature, inherited through my dad.

Let me start with the medical specifications first.

What I have is a form of ectrodactyly, a limb dissability, it’s also called Split-Hand and -Foot Malformation (SHFM). And in my family’s case it concerns hand and feet, we have differently shaped fingers and toes. For me that means I have five differently looking fingers on my left hand and 3.3 differently looking fingers on my right hand. My sister & dad have three fingers on each hand and we all have only two toes, a big toe and a small toe on each foot. Just because it might be difficult for you to imagine that, I share with you pictures of my hands here:

Now let’s dive more into the scientific part, which is quite an interesting story of my life. As I mentioned before, there was a 50% chance to get it, meaning it is a dominant mutation: if you get the mutated gene, its healthy copy cannot rebalance it & the disease is expressed, or like in my case: I get differently shaped fingers like my dad, instead of 10 normally shaped fingers like my mom.

That could be it for the science, but it’s not ;-).

Jumping to highschool times, I choose to have advanced biology and art classes in my last years. We were supposed to compile a more extensive exam work and I picked my biology class for that. We had the option to do a theoretical piece or a practical one. I choose to do something practical as I was generally more drawn to that.

Then was the question, what should I do? I didn’t really want to grow fruit flies and do experiments on them, so I asked my biology teacher if I could use myself as the experimental object & investigate the disability that runs in my family. She agreed to it & I got going, made all kinds of huge plans, the biggest one was to find out which mutation on our DNA causes the disability we have!

I started with my research going through all kinds of old family files of x-rays, pre- and post-OP pictures, asked my mom & read stuffs on the internet. In my efforts I found a lab that worked on this disability and it was located in Cologne, where I was living! You can’t imagine how happy that made me! I immediately thought I will go there & ask the researchers for help in solving this riddle of my disability-hat.

I contacted them & we agreed to a meeting & my mom helped me to get there as she was working at the same location in the university clinics. Otherwise, having a super nervous 17-year old teenager walking the halls of a university clinics, to find a research lab to discover the reason for her disability-hat could have ended funny :-D.

To not make it too exciting for you: my plans and dreams got completely shattered in that meeting :-(.

The professor made it clear to me that within the timeframe & possibilities I had, it was impossible to find out the exact mutation running in my family. I was super sad & disappointed, I had such big hopes! But he was so great, gave me all kinds of materials and brochures that I incorporated & worked into my mini-highschool thesis.

I actually also made my first scientific illustrations by tracing mine and my sisters x-ray pictures on the windows of my childhood bedroom. Overall, I delivered a great thesis, I got an A+, the best grade I could get & it made me so happy, mainly because it was so close to my heart.

Plot-twist is coming soon ;-).

When finishing highscool, I thought about what to do afterwards. I loved art and I loved biology & science. It was impossible for me to imagine myself drawing digitally (…funny enough thats what I earn my living with now :-D)… & I had a rather doomy-gloomy view of what it meant to be an artist, so I choose to wear the biologist-hat instead. Before studies started, I had some time for vacations and another special plan…

I had kept in mind what the professor told me was needed to solve the riddle of my family’s disability-hat and now that I got into my biology studies, I thought it would be great to do an internship in a lab, to see if I enjoy labwork. Sooo, I contacted them & asked if they would take me in as an intern for seven weeks & if I could work on the disability running in my family. They said YES!!! I was beyond happy & excited! You cannot even imagine!

They gave me all the materials I needed, as it was necessary to get blood samples from my family members and when we went for vacations to Poland, I took everything with me. I also talked to my family members before & explained my plan to them & whose blood samples I would need.

Obviously mine, my sisters, my parents, my grandparents, also my aunts and those of another farther related aunt and her daughter who also had the same disability-hat. I needed people from my family with it and also those without it, so I had a genetic comparison to make a proper analysis and phylogenetic tree. Luckily one of my aunts was a paramedic, so she drew all the blood from my family members for me & I just took the samples back to Germany.

All but one family member agreed to participate in this experiment. Even my grandpa and my grandma were okay to join, only my dad refused to give his blood to be analyzed. Quite a crucial sample missing, but as I had mine and my sisters blood & our grandpas, who we inherited it from through my dad, it was not such a big deal, at least scientifically speaking.

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It actually meant much more on a non-scientific level. Several people tried to convince my dad, made jokes about it or ridiculed his decision, trying to guilt-trip him into agreeing to it, as me, his daughter, was doing this great experiment & how dared he did not want to participate in it. I accepted it & didn’t blame him.

My dad has always had a problem with the fact that he is disabled, he also had a very bad conscience that he passed it on to my sister and me. Even though we did never mind, and we still have no issues with it. We mainly don’t care about it. But for him its different, he still feels embarrassed about his hands and feet, he can’t handle well when my sister and me are barefoot & other people see it… all kinds of things.

So, of course he wouldn’t participate in this experiment to give his blood & have it analyzed to prove even more so, that he is the one to be blamed for this misery… obviously, this is me paraphrasing now what might have been happening in his mind about this topic. Cos I love my dad, no matter what and how he thinks, I know he loves me too :-).

Interestingly enough, my dad always was the most artistic person ever. He was the main set designer in the opera in Cologne, he painted, sculpted, carved, formed, drew and whatever else was needed, better than any ten-fingered person could do it.

Did it matter that everyone admired his skills? No. Whatever was sitting inside of him had the power over any achievement he could have ever accomplished. It’s a lesson I learned and still have to actively work on: what is inside of me will always overrule what others think, no matter what.

In any way, I got side-tracked :D… I got my blood samples, I went back to the lab, learned to extract DNA from blood, how to conserve it, design primers, do PCRs, run polymerase gels, analyze sequencing results and finally find the deletion on Chromosome three that lead to this special hat I am wearing now, my disability-hat.

I finally solved my highschool dream and learned that I truly loved to work in the lab, solving riddles and getting excited about science and nature, all at once!

These days, its not uncommon to just order a kit from a company and get your genome analyzed, but when I was doing these experiments, it was almost 20 years ago and these technologies we're not available for everyone to access back then. It’s fascinating what and how science and technology develops.

This was the first part of the story around my disability-hat and it turned out so long, that I felt to split it up into two parts. There is much more to it than all the medical definitions and the scientific groundwork I described today:

we are people, human beings, with emotions and feelings, growing up in a society with hundreds of thousands of other people around us and being disabled brings many more other challenges with it. If you want to know more, stay tuned for the second part next week :)

Love,
Daria

Wonderings:

Do you wear a disability-hat or know someone who does?

How do you feel about it?

Leave a comment

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I always disliked labels, I still do. I don’t like to be put in boxes & I try my best to avoid putting other people or myself in boxes.

At the same time, I am well aware that there are certain categories that exist, some of them I fall into as well, and I decided that it’s pointless to fight those categories, cos they are nothing bad per se.

I think it’s critical how we relate to them, how much importance we put on them and how strongly we identify with them that makes the whole difference. Also, if we use them as excuses, I don’t feel it’s a healthy way to approach them either.

The best way for me to deal with categories and boxes is, with a bit of humor, taking away their seriousness and just simply describe my experiences around those categories, so I decided to set up a little series about them all here.

During the time I was in a startup incubator, I met with many job coaches and professionals and one of the ladies used a perfect analogy describing what it means to have your own company: “You are wearing many different hats at once: you are the founder, the CEO, you are the scientist, the artist, the illustrator, the marketing person, the sales person, you do the bookkeeping and the billing and have plenty of more hats. It’s just important to know which one to wear when & then you will be fine.”

I loved this metaphor, because to me it basically represented life & described my business and me as a living organism, which we truly are!

For example: in my life, I was a girl and now I am a woman, these are biology-defined categories or hats; I am also wearing a daughter- and a sister-hat, defined by my family constellation; I also wear a scientist hat, because I decided to study biology & do a PhD; at the same time I have an Artist hat I put on when I do art. And so on, and so forth…

To me, I love the idea to wear those different hats, the fact that I can choose when to wear them, and I also love to be able to pick future hats. Like that, I am filling up my closet with plenty of hats AND at the same time I don’t feel restricted by them. Because they are basically just accessories.

At my core I am still Daria, not much changes and I don’t have to define myself by which hat I wear, its rather something temporary that I choose to be.

YesYes, I know some hats are of biological nature and rather fixed, as an example: I won’t be able to get rid of my physical disability hat, it’s always with me; but I don’t define myself over it, its just a bit of a more permanent feature of the vessel I choose to come to earth in :).

I liked this idea of the hats so much, that I decided to start this series about my hats, looking and describing all kinds of hats I have in my closet, coming up with funny stories, serious thoughts & interesting life experiences around them.

If you feel like sharing any of your hat experiences, I would be happy to hear from you :)!

Love,

Daria

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