My Journey as a PhD- Visual Snow Syndrome

Today I am going to talk about something personal again. Last year I’ve been diagnosed with Visual Snow Syndrome (VSS) and I wanted to share my experiences.

First of all, what is VSS?

“Visual snow (VS) is a recently identified neurologic condition consisting of a constant positive visual disturbance described as uncountable tiny dots over the entire visual field. In addition to the static, patients very often report visual symptoms such as palinopsia, entoptic phenomena, photophobia, and nyctalopia”. (Puledda et al., 2020)

How I found out:

In retrospect I cannot pinpoint when exactly I GOT the symptoms of VSS, I might have had them all my life but I all of a sudden noticed them. I think I started to notice the symptoms after a quite stressful period when it became really difficult to read a certain book. Difficult is an understatement, it became impossible. The book used a particularly small, narrow font and basically no line spacing. What I saw was kind of a nervous picture, the lines and letter were kind of wobbling around and there was some sense of erratic movement that I could not pinpoint. In addition to this, things felt as if they were “burnt” into my retina. We all know this when we look at the sun too long and then look at something else, but I had it with everything that was slightly darker and in front of a mono-coloured surface. Moreover, these afterimages did not last 2-3 seconds but 30ish. I also noticed that looking at screens became difficult as if there was always something “in the way” and I tried to blink and squint but it did not help. Also, it was present 24/7, I COULD NEVER REST EVEN WHEN I CLOSED MY EYES!!


Symptoms:

So, my symptoms are very typical and include:

  • Visual snow (i.e. dynamic, continuous, tiny dots in their entire visual field)
  • Palinopsia (afterimages or trailing),
  • Enhanced entoptic phenomena (blue-field entoptic phenomena, self-light of the eye or spontaneous photopsia)
  • Photophobia (light sensitivity), and

In addition to this, migraine, as well as tinnitus, have been found in numerous VSS patients, suggesting that there might be a connection.

I think of VSS as tinnitus of the eyes…

This picture visualizes it quite nicely, but only shows half of what I see…

However, there is also an online page that lets you play around to visualize your symptoms. Unfortunately, I cannot layer e.g. VSS and the blurry vision, but this one comes quite close I would say:

http://VisionSimulations.com/visual-snow.htm?background=office1.png&density=0.67&speed=100&grainsize=1


Finding professional help:

But to continue with my story: Once I noticed the symptoms I stopped working and tried to relax, and thought it might be stress-related. I also called a doctor’s office about it but they also told me to stay put and wait a couple of days and to call them back if it did not get better, which it did not. So I went into the doctor’s office and we did a couple of tests, which were inconclusive. When I went back to the doctor the next day to get my blood tested he immediately sent me to the Eye Emergency unit at the hospital, where I spent my day going through tests, which, again, were inconclusive. My eyes seemed healthy. Based on my description I got the preliminary diagnosis: Visual Snow Syndrome. I had googled my symptoms the day before and I came across VSS before and TBH I was wishing for the doctors to tell me “Well, you’re going to be on sick leave for 2 weeks and then it is going to be fine”….but, unfortunately, they did not. I can tell you I was devastated. I did not want to have this.

Since it was just a preliminary diagnosis I was called in again a couple of weeks later, to see an ophthalmologist. He took quite some time to ask me questions and he also did some additional tests, again my eyes seemed healthy- everything pointed towards VSS. Luckily, he was one of the few that actually knew about VSS! After I had joined some of the Facebook groups, I later found out that it is not that common. He also ordered an MRI, because sometimes the symptoms point towards MS….uff…that was scary to know, but luckily it was not MS.

What was positive about this was that I knew what I had (most likely) but at the same time the ophthalmologist also told me that there is basically no help he could offer me, no treatment, no cure. He said that the VSS won’t get worse but he cannot really help me. He mentioned one medication, lamotrigine, which had shown SOME effects in individual cases. Lamotrigine is primarily a treatment for epilepsy and I decided to do some research into the trials that were done as well as into lamotrigine itself. After a couple of hours reading scientific articles I decided not to take lamotrigine, but to try to handle the VSS by myself- however, I do feel good that there might be an option in the future.


Back to my PhD…

As I said, after I got the VSS diagnosis, I was shattered and scared. I was ½ into my PhD and then this….I was hopeless because I already had tinnitus and had learned to live with it. I can tell you that it takes energy to not focus on it…or ignore it. But usually, I’ve become quite good at it. However, having something BESIDES that I also have to ignore all the time felt too much for me. HOW on earth was I going to do that?!* Doing a PhD is difficult enough….in addition to that, I just panicked because I thought my whole academic career was in danger…it basically IS reading stuff right?! After the initial breakdown and crying, I was entering the stage of denial, so I just stayed away from all screens for 5 days (which was a nice detox!) to test if it might just be stress. Yeah, it wasn’t that.

What gave me hope was my supervisor, who told me that there are people that are blind and have an academic career. I did not want to talk to him initially, because I was scared I could get fired or something (here in Sweden a PhD is treated as a job) because I could not fulfil my job requirements. However, I also had to accept that I could not work in the same way as before, so I decided to talk to him. I am really glad I did because he calmed me down tremendously. He even told me, that he knows of people that are blind and still have an academic career. That sounds a bit extreme, but it did calm me down and helped me realize that my career might not be lost. In addition to that, he also helped me to get a process going to get my workplace adapted to my symptoms. I am still amazed and grateful for how smooth that process went. However, since no one really knew what to do or to help me I had to find out myself what helped me and whatnot. I have to say that my workplace supported me incredibly much.

*I’ve talked so much about work and my PhD! However, I also wanted to point out that I am an avid gamer and was really worried about a potential end to the day-long gaming sessions….


Tried and tested remedies:

  • Coloured sheets: I ordered coloured plastic sheets from amazon ( https://www.amazon.de/gp/product/B07BGXXFC4/ref=ppx_yo_dt_b_asin_title_o09_s02?ie=UTF8&psc=1 ). I read somewhere that it had helped some people, but that it really was an individual preference. For me, the dark blue ones work best. I still use it for some days on my computer screen and they help me a lot. The only down-side is that I haven’t found fitting ones for my desktop screen, so I still see where the two sheets overlap, so I am still looking for the perfect solution!
  • Glasses: There is a specific version of glasses or glass colour that helps migraine patients quite a lot, since they reduce light in a certain wavelength (I think?!). They are pinkish, at least the ones that I tried (FL 41). I just used them for a couple of minutes, and they did not really have an effect but could help if worn for a longer time. At the moment I do not feel the need to buy them, but I might do it at some point.
  • Sunglasses: When my eyes are strained, my sunglasses gave me some relief. I have “normal” brown sunglasses, but I’ve tested polarized sunglasses as well. I am not sure why but they seem to help me even more. Might get some polarized ones when summer comes here in Sweden J In general, I can say that summer is more difficult for me, because of all the light…good that the winters are that long here in Sweden 😀
  • Meditation: My VSS is always there, day or night, but how stressed I am or tense DOES highly influence how much I NOTICE it. So sometimes, when I feel too nervous or restless inside it helps me to meditate
  • Podcasts/Videos: Before I noticed VSS that much, I used to read A LOT- don’t get me wrong, I still do, but I’ve started to look for alternative sources. Instead of reading a chapter on a certain theory, I try to find a video or podcast. Specifically for philosophy/ontology/epistemology, I found a couple of brilliant podcasts, that actually got me interested in philosophy altogether (e.g. Philosophize this! On Spotify)
  • Static Videos: There are a couple of videos on youtube that helped some people. It is basically static and if you watch it for ½ hour it might help with the VSS. Some VSS sufferers even claim that they’ve cured their VSS with it. For me, however, it only helped for a couple of minutes, well, my static stood still but got moving again after that. So I did not continue.
  • VSI: The Visual Snow Initiative (https://www.visualsnowinitiative.org/) is an active community that also cooperates with a research group in Australia. In 2020, they’ve released a VSS remedy program, however, I have not yet gone through with it.
  • PDF: There is actually a feature in Adobe’s program to READ the PDF’s. Sometimes it works excellent, sometimes it is just utter BS. I think it has to do with HOW the PDF is formatted, unfortunately. For me, it was more work to get it going that it was of actual use, but there might be more sophisticated programs out there.
  • Blue Light Filter: I’ve changed the settings on all my devices and have activated a blue light filter. In addition to that, I’ve installed LUX on my Laptop, so that my screen is constantly yellowy/orangy. Works GREAT!
  • Colours: Colors in general play a huge role for me. Specifically in more office settings. For me, “nervous background” is great, if there are different colours and textures mixed together I do not see my visual snow, but a plain white wall…uff…please kill me..or my eyes. However, what works for me is grey. At my home office, my wall is grey, my desk, my laptop, the sides of the screen, all of it has kind of the same colour, which is great. At work, my table is now dark too, and I get dark sides everywhere around it, so I basically have a dark box 😀 It sounds depressing, but for me, it is just perfect, because there is not BRIGHT wall anywhere close to my eyesight!
  • ReMarkable 2: I think what made the biggest difference was when I could order this e-ink tablet through work. When I finally got it was like a revelation…My god, I could finally READ pdf and books again! I could continue to write a page about this marvellous thing, but in a nutshell: It feels like it has saved my life.

Current Situation:

Some days I just cannot continue to work and then that’s just it. I try to not be angry with me, disappointed or sad, it is just what it is. I will finish my PhD. It shook me quite much, to the core and it took a couple of months for me to enjoy life again and just feel like “yeah I can do it!”. There are still days that feel awful, some days I just wake up and the visual noise is more present than others, depending on how I’ve slept, my mood and all that…

However, on the positive side, I can tell you that I’ve started to read actual paper-based books again. Most of them work, especially the ones that have bigger font size and spacing. I’ve noticed that I should buy books in-store or check them before I buy them, I think I bought a book recently that I just opened and thought, well NOPE! But then I can still use the blue plastic sheets which make my life a bit easier.

It does suck to have a neurological disease that cannot be cured or treated or ANYTHING, but the human brain is also very flexible. For me, it took around 9 months to get used to it, to not wake up every morning, checking if it got better or not. Now, I just wake up and do what I gotta do. Some days are bad, and I cannot use the screen, but I have found my workarounds, and most days I barely notice it. Of course, there is a whole spectrum of VSS intensity, but for me, it just took time to accept and adapt! For now, I feel good and the VSS does not hinder me from doing my PhD…or playing games 🙂

Reference:

Puledda, F., Schankin, C., & Goadsby, P. J. (2020). Visual snow syndrome: A clinical and phenotypical description of 1,100 cases. Neurology, 94(6), e564–e574. https://doi.org/10.1212/WNL.0000000000008909

My Journey as a PhD- Reflection 1st year

I’ve talked a bit about my background in the last post…or got it out of my system 😀 I mean there is a reason why some people claim that journaling helps so, let’s see about that J Moving on to my reflections on my first year as a PhD, which basically consisted of exclusively negative EVERYTHING!

However, let me start from the beginning:

Well, the first warning sign should have been how I reacted to getting a PhD position. I do not know why, it had been the goal I have been working towards for a long time, but when I got the news it was a very short-lived “Yayy!”, but it felt more as if it was more of a “ticking the box” moment of achieving something, that anything else. Like, ok did that, what is next now? I do not want to sound ungrateful here. Believe me, I know what incredible achievement it is, or at least I know how I should feel about it but I kind of keep this…hidden? A bit as if I think, meh, anyone could have done it. It is not REALLY an achievement. You HAVE to do MORE! PUSH yourself…

I’ve read quite about the initial feelings online and how other PhDs felt, and what I usually come across is this motivation diagram, which shows how PhD students feel about their thesis kind of. In addition to this a lot of people talk about the initial HIGH and EXCITEMENT they felt when they started their PhD…well, I can tell you I WAITED but it never came for me. Instead, I was terrified, all the time and doubting myself…CONSTANTLY! So in a way, I started with the valley of shit…

While I was waiting for the excitement boost, I also started to beat myself up for things I did not know (concepts, philosophers, traditions…) and tried to catch up and read more and more and more and more. MY “personality” kind of changed when I was at work/ a PhD environment: I would describe myself as a very confident, extrovert person, but I just switched completely, became super quiet, asked no questions and felt overall uncomfortable all the time. Reading seminars or anything where someone could ask me a question became moments of torture and massive inner stress…and I do not mean only the official seminars and lectures, but also lunch in the lunchroom. I never really felt like as if I found my place…or even DESERVED my place. I did not know how to talk to people what is the SMALLTALK you’re supposed to have during lunch?! I was just so tense ALL THE TIME!!!

Plus I felt like as if I was behind all the time, other PhD SAID they knew what they wanted to do and how, and I was just..ehm…IDK…I mean had an idea from the beginning, but others had an EXACT plan…So yeah. I was terrified and stressed.

I mean I know that it was not good to feel that way, so I started to google about this and came across forums and blog posts about other PhD students feeling similar and imposter syndrome. I read about it, not just online but even books…and even though some of it applied to me…I always thought yeah…this applies to others…but not to ME because I am worse…I’ve tried to tell myself the common things you should tell yourself, like; other have decided that you’re good enough to do this PhD, it is not your job to question that or every PhD project is different, you cannot compare yourself to others, compare yourself to yourself from a couple of months ago blablabla. You’re learning, view EVERYTHING as a learning experience. FUCK THIS!

Nothing helped. Some days and weeks I still felt like the worst failure in history, I cried and felt miserable and some days I could not get out of bed to do anything. I got so stressed about everything, and I also always felt bad…I questioned this whole PhD and the toll it was taking on my mental health.

I cannot really explain the desperate feelings I actually had…and I cannot say that I’ve completely overcome this…

I think pushing yourself is a good thing, but I’ve always done it in a really mean way. I am not kind to myself, quite the opposite, I am very self-critical, I expect so much from myself and I do not celebrate when I’ve finished sth or achieved something. Do not get me wrong, I appreciate the small things in life, and I would say that I am in general a very positive, optimistic person. I am happy when I catch the bus or if it snows outside 😀 But when it comes to ME, I am such a bad critic.

Weird thing is, that I EXCLUSIVELY got more than excellent feedback from my supervisors or comments on my assignment in courses…so why the bad feeling?!?!?!!?! I just could not stop it or help myself! Problem was/is that I simply do not believe them when they say something positive…or I think…why is this just a great text, not an EXCELLENT text, what could I have done more and BETTER?! Yeah, indeed, perfectionism is not really healthy, but it got me so far, what can I do now that it does hinder me instead of pushing me further?!

During my bachelor/masters, I always worked to push myself. To go the extra mile, to be mean and all this, but that was always during specific periods, just for an assignment and such, but now it is there CONSTANTLY! I guess this is the issue; well the issue is that I DO this, but I probably would have continued like this if the pressure was unbearable for just a short amount of time. However, this requires some action, and I know this. I am working on it and trying some things, but I will explain that in another blog post.

My Journey as a PhD- Starting Point and Background

Alright, I planned to start a blog a year ago…when I actually started my PhD, but it took my nearly one year to create one. Nevertheless, I want to talk about my experiences and feelings about different stages during my PhD so far. It might help others to see that they are not alone but is also thought to help me reflect on my path during this experience.

First off; how I experience my PhD highly depends on my background and the context I am in. I have recently listened to an interesting podcast about identity which raised many questions and also got me thinking. Let’s get started!

Last week marked 1 ½ year into my PhD, and I thought I would write a bit about my experiences during the first year, specifically about the start of my PhD. I know, kind of late, but yeah…time flies right? So, this is more of a personal blogpost…maybe also for me to read in a couple of years to see and reflect on what has happened since then. Well, I hope things have happened, especially with me feeling like an imposter (SPOILER!).

I think I have to start with yet another spoiler, I am not kind to myself, and that has proven to be incredibly difficult during my PhD so far. While it has helped me to push myself previously it has now become an obstacle, but I am getting ahead of myself here, so let’s start kind of at the beginning to give you some context.

I come from a non-academic, working-class family. No one in my family speaks a foreign language or has finished the Gymnasium*, attended university or graduated from one. My parents luckily were interested in education and we went to museums and libraries and watched tons of documentaries.

I do not want to blow my own trumpet (yeah maybe a bit) but I started school a year early and was always the youngest in school, but that was ok. I always felt good and had loads of friends. Things however changed a bit when I started the Gymnasium in 7th grade. The majority of my classmates now had parents with an academic background, who could help them, at least to a certain extent, whereas I kind of had to struggle through the subjects myself. I had one particular teacher, kind of old school, traditional, and she absolutely detested the thought of having working –class children at the Gymnasium, which she openly said on several occasions. One example was during a literature class; we talked about a book that we were supposed to read. She just went through the names of and to the students with an academic background she said, “Ah your parents will have it at home, no worries”. Then, she turned to me and said with a derogatory voice “Well, I guess you have to buy it then”…She also disturbed newspaper articles about the decline of the Gymnasium since more and more working class students are accepted. Well, one outcome was that I was very aware of my background…

So fast forward; I finished school with excellent grades and started studying, but there was always this nagging in the back of my head about me not belonging. This is basically where problems started. I had no idea where to go, what certain terms meant (what the HELL is an immatrikulation?! I had to practice that word a couple of times..), how to behave or whatever…It took me a LONG time to get used to the new environment….I think that my whole undergrad was just me feeling LOST…but somehow I also made it with good grades.

I never really reflected on HOW difficult that was, how much energy it costs to adapt and learn certain things, skills and competencies that might be normal for others, that come from a more academic background…

However, I always kind of felt like an outcast, as if I did not truly belong. I could handle the feeling during my bachelor and my master degrees. Yeah, I have two…probably also some kind of compensation, a proof to the world… that I am worth SOMETHING? (Well, this thought about worthiness/outside approval is a different topic I might talk about another time…).

When I learned Swedish, we read a book by Theodor Kallifatides, called “Ett nytt land utanför mitt fönster”. In the book, the author explores his origins and who he has become after thirty-six years in a new country. It is a thoughtful and deeply personal book about language and belonging, about memory, love and identity and depicts the conditions and possibilities of alienation. While the book certainly touched me concerning my feelings living in a foreign country, it also resembles my feelings of “in-betweenness” of my working-class family background and my academic career as well. I never truly feel as if I belong anywhere anymore. Sometimes I do not get what my family is worried about, what they talk about at academic reading seminars, I do not get some cultural references that Swedes share that grew up in the same social context, and I do not get things that my friends refer to when they talk about current things when they talk about in Germany.

I know, when I write this now it sounds like an absolute crisis…but I do not want to talk about that here. I am not even sure I view it as a crisis…anyway, what I really wanted to talk about was this feeling of alienation in both areas, my background and the academic area, and my struggle to reach that in a way. If I only study harder, if I only know more, if I wear the specific clothes, if I learned the discourses…if only…that was basically my motto, but whenever I felt I reached it, it was not really that, it was something else that I needed to improve to finally reach the feeling of belonging. (When I started listening to Linkin Park, Somewhere I belong was definitely NOT one of my favorites, but I can tell you I listen to it regularly now :D)

You know how the majority of people say that education is the way forward, also to “escape” or move between social “classes” (if you want to you that word)…or…well….are made to BELIEVE that it is the way to go. I think I’ve also always thought that way, study harder and you will get a good job, you have a better, easier life, you’ll be an academic. Therefore, I kind of studied like a maniac, not sure for whom.

At some point, I came across Bourdieu and his theory of capital, theory of field and habitus. Well, long story short, digging into this (structuralist) theory was kind of a revelation for me.

Based on this it became quite obvious, that it is so much more than education- but it also became obvious how difficult it is to change “one’s social class”. I also realized, how much energy all this costs, and this is something I have underestimated for a really long time, well forever. I mean it is not JUST your cultural capital (such as education), but also the social aspects, economic and finally the symbolic aspects which together stand in kind of co-evolution of the habitus, the norms rules and dispositions. The habitus includes e.g. lifestyle and taste and the individual’s habitus is characterized by the predominant habitus in the group to which the individual belongs. Habitus creates common ways of looking at the outside world and oneself. It is also a means of differentiating oneself from other groups, by the denial/rejection of other groups’ taste or lifestyle. This is all quite deeply ingrained and somewhere I heard (in a pod I think) that according to Bourdieu it is incredibly difficult to change one’s social class, given the given dimensions that it takes. So, it is not just education…I think I always knew it but I still put in so much energy into it, not thinking about the other parts that ALSO cost energy…Now I am not longer surprised that I am constantly tired and exhausted 😉

I am not sure if it is the same for other (PhD-) students coming from a non-academic background, but DO NOT UNDERESTIMATE the EXTRA work that you have had to put into to reach this point. All the extra stress, self-doubt and energy…be more proud of yourself and cut yourself some slack. I am trying to do that too!


*When I was a kid the German school system was organised like this:

  1. Elementary school (obligatory, age 6-10) –> everyone proceeded to –>
  2. “Orientierungsstufe” (orientation stage 10-12) –> teachers decided on–>
  3. One of the three options: Hauptschule, Realschule, Gymnasium

Hauptschule, Realschule, Gymnasium could be translated with “secondary” school, however Hauptschule is the lowest level, Realschule is the middle level and Gymnasium the highest level in the educational system. Finishing Haupt and Realschule would allow an apprenticeship, while Gymnasium would certify the student to proceed to study at a university.