In the Lyme light

A very close friend of mine has been battling chronic Lyme disease for five years now and even though I have always tried to be supportive, I am only just starting to understand her struggle.

In May of 2017 I accompanied her to a national awareness event, focused on Chronic Lyme disease, called So Strong. It was incredible, in every sense of the word. It’s hard to believe how much is still unknown.

What do you do when you are certain there is something very wrong inside you but doctors tell you it’s all in your mind?

What do you do when you finally receive a diagnosis that makes sense but also reveals there is a big chance you will never truly recover?

My dear friend broke down in tears when Jesse Ruben climbed the stage and played this song:

It helped her, the way crying sometimes does, and it helped me, the way a slap in the face sometimes does, I suppose…

So when we heard there would be a sponsor event the following year, to raise awareness and collect money for the treatment of Lyme patients, we agreed we should put a team together.

Fast forward to 2018 and here we are! I will be running to collect money and invite you to sponsor me and help my good friend Anneke to get better, as the chronic form of Lyme’s disease is still not fully recognized in regular medicine and therefore neither are the treatments she needs.

If you would like to contribute; here is the link to the sponsor event’s website. I’m afraid it’s all in Dutch, so feel free to contact me via the Facebook page if you need help navigating the website.

 

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Chuck the list!

bucketlist

This morning I stumbled upon a blogpost that made so much sense, that I can’t believe I hadn’t already written about it myself. The post is titled “Chuck that list“, describing the blogger’s feelings about her bucketlist.

bucket-list

And all though I love the idea of a bucketlist and am oddly attached to mine, I can totally relate to what Imadcap wrote about the limitations of such a list.

My bucketlist was supposed to inspire me. It was meant to motivate me to pursue these goals, even the ones that make me nervous or uncomfortable.

In hindsight, making the list public kind of messed it up. Or no, I think putting it into writing did that. Because then it became a to-do list and not striking anything off became failure. And that really wasn’t the point!

I suppose it’s like playing a video game, where you are actually doing great, passing level after level and gathering points and bonuses along the way. Striking an item of your bucketlist is like finding an easter egg. It’s not necessary, but it is cool!

And Imadcap puts it very well when she says: “a list always limits you into thinking these are the stuff you want to do.” That is so true! Some of the best experiences I’ve had were ones I hadn’t counted on having at all!

Imadcap adds: “Secondly, lists change. Or at least they should.”

Woman Reading Long List

Again, I couldn’t agree more… I always thought my bucketlist would continue growing; with more and more life goals being added on at the bottom, striking the goals that I achieved, as I went.

But as it turns out, I actually don’t demand as much from life as I used to or at least not the same things. There are things on the list that, deep down in my heart, I really couldn’t care less about now… And that’s OK!

All of this helps me pinpoint and eliminate the nagging feeling I’ve been having… You see, a dormant bucket list can lead one to believe that nothing is happening. That life has come to a standstill.

First of all, let me say that a quiet life is not necessarily a bad thing…

But second of all, the fact that I haven’t stumbled upon or pursued as many of the bucket list items, is merely proof of my lack of imagination. Life has so much to offer and if I had been more creative I may have made more room for the smaller ideas that ended up leaving the biggest impact.

On the other side, the fact that I put some life goals into writing, may have even prevented me from enjoying them as much as I would have if they had simply crept up on me out of nowhere.

Another thing that kind of bugs me when I look at my bucketlist, is that I feel it doesn’t represent me. When I put it together I really made an effort to think out of the box and include things that I didn’t necessarily think I would enjoy but that I felt I should do anyhow, either to broaden my horizon, to become a better person (whatever that means) or to be able to say “yes, as a matter of fact I DID try that and it sucked as much as I thought it would”.

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So, I guess what I am saying is that having a bucketlist is one thing, but it is not complete without a second list with all the unexpected stuff that actually meant something on the long run. Small anecdotes that have shaped who I am and reflect what matters to me.

Like the time I bumped into the homeless man that used to sleep on my porch but whom I hadn’t seen in many months (I moved and actually felt bad for some reason that I hadn’t been able to tell him that, since I was quite sure the new tenant would be less accepting of his midnight ramblings). It warmed my heart to see his face light up when he recognized me and seeing his toothless smile appear on his face as he exclaimed: “HEY! It’s you!”

Or the time my boyfriend and I decided to order takeout dinner last summer and eat it in the grass a couple of streets behind our new home and then sharing our food with an amazingly tame blackbird. And as he flew off, my boyfriend and I couldn’t believe our eyes as he flew away, over several houses and straight to our very roof, that we could (by chance) only just see the tip of from where we were sitting… and he’s been around ever since!

Awkward-White-People-Dance-Moves

And how about the love I have developed for Roskilde Festival? This year will be my third visit and my second time as a volunteer. I could never have foreseen how proud it makes me to be a part of that. More, I could never have imagined how welcome I have felt there, even as an only-slightly drinker, a not-at-all drug user, an awkward dancer and a very non convincing hippie.

These are all things that define me but in no way or form feature on my bucketlist. I suppose I could add them in very general terms and it wouldn’t even look like I was cheating. How about:

  • befriend a bum
  • bond with a bird, like a true Disney princess
  • Go to a music festival for free

This won’t do though. It defeats the purpose of the bucketlist and does no justice to the anecdotes…

So I did the only right thing and added “Chuck the list” to the list.

Prompt me

My blog and I are good friends.  Lately though, I’ve been behaving like the kind of friend that only shows up when life is shitty and I need a shoulder to cry on. I’m the type of friend that takes energy and gives little back. I’m not being a good friend to my blog-buddy and I apologize.

bad friend

Blogtober was too intense. Showing up because I have to is not how I want this to go. I want to want to be here. And I know I want to be here more often than I currently am, and maybe that starts with forcing myself to show up, at first(?). Inspiration is so hard to plan though….

And Daily Prompts aren’t inspiring me, either! I mean… Just one word? Why not set the scene a bit, like they you used to?

And what happened to the weekly Discover challenges?? I liked those!

Read Write Live‘s blog did inspire me though, especially when she (or he?? I don’t really know) asked her readers what she should write about. I’d like to be able to do that. The problem is that I don’t really have readers. I’m not even insulted. It is the way it is. I never really set out to have a following anyway, but for this specific experiment it would be nice…

But perhaps there is still a way to follow the same train of thought, but with just me, myself and I (and the handful of people that stumble upon my little corner of the interwebz).

How about writing what I want to read? And how about I base this on things I actually did read, like the blog I just mentioned? Instead of using the boring, standardized and uninspiring one-word-“you figure it out” Daily Prompts, I could pick a word or sentence from a fellow bloggers post and build on that… I’m sure they wouldn’t mind, right?

Yes, that’s what I will do. Now is the start, and it sounds like: Ladidada dada!

 

Three historic dinners

Who in history would you dine with?

This question was asked (and answered) in last week’s post on “Why evolution is true”-blog.

I started coming up with a couple of names, but got lost in semantics at some point. I mean, I think most people would answer that question by naming interesting characters they would like to have a chat with… right?

But the question is “who would you dine with?”

So then I ask myself, are there people with whom the specific setting of a dinner table would make the meeting more worthwhile? I suppose that would be the case with someone from the culinary world. But then again, I don’t care much for cooking myself, so I wouldn’t know what to ask a top chef or dietary guru anyway…

So then I turned it around: Are there people I would love to have a chat with, but would prefer not to do so over dinner?

And I guess there the answer would be yes.

gandhi eating

Take Mahatma Ghandi for example. I can imagine meeting him would be amazingly inspiring. Life changing maybe. But the guy hardly ate at all, and if the food is tasty and plentiful (like Indian food can be) I tend to eat like an absolute pig. The food would just make me look like a shitty individual and make me feel so self-conscious that any chances I had of saying something smart would’ve evaporated in seconds. Just like the food placed in front of me.

Or what about Stephen Hawking; super duper interesting guy, who I’d be super honored to meet. But over dinner?? I think I might have to pass on that one… Or actually no, I think he would have to.

And then there’s Donald Trump and his off putting dietary preferences. But I’m actually not really worried about this one, because I would never really consider putting his name on my dinner invitation…

I asked my boyfriend just now who he would invite and he actually didn’t have to think very long. His answers: Aleister Crowley, Copernicus and Michelangelo. He didn’t mind not speaking their exact languages and was sure he would find a way… He’s so much braver in these things than I am. 😛

So, I’ve probably given this way too much thought, but here goes:

 

Mary Magdalene

I was named after the very first woman, according to most mainstream Christian sources, Eve. A lot of women came and went after that but none has been so controversial as Mary Magdalene. I am not a religious person myself, but I do believe that many of the events described in the bible and other holy scriptures are based on true events and historical figures.

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I can imagine a visionary man named Jesus of Nazareth walked this earth at some point and I can imagine he did not stay single. I can imagine Mary Magdalene was his spouse and I can imagine that she was demonized after Jesus’ death for all sorts of reasons, earning her the title of “prostitute” in many tellings.

I would love to hear her side of the story. Break some bread, drink some wine, you know how it goes…

 

Sylvana Simons

Another demonized woman. I have written about Ms Simons and her tragic position in Dutch society in previous blogs. Cruel jokes and racist remarks are still part of her daily life, proving her point that Dutch society has something rotten at its core but not really getting her anywhere close to fixing it.

sylvanabuitenhof

She still fascinates me. Or rather, the fact that she has managed to get nearly every single Dutchman and -woman to dislike her, fascinates me. I have done my research and am no longer completely in the dark as to why and how this situation has come to be, but I would still love to look her in the eye and hear her out. Over dinner, sure.

 

Mercedes Sosa

La negra, which translates to “the black woman”. To most of us, she would not be considered to be black at all. It is actually a very common nickname given to those  friends and family members in not-so-black circles that have slightly darker or thicker hair or a slightly darker skin.

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I have written about Mercedes Sosa in several of my music related blog posts. Her voice just never ceases to amaze me. The chills she manages to send down my spine, every. single. time. can not be ignored. I love her.

Her death was a slow process that happened in plain sight. She suffered from a parasitic disease called Chagas; every backpacker’s worst nightmare. As her body lost its strength so did her voice, all though she sang and recorded until the very end.

I don’t know what I would say to her if I had the chance to raise her from the dead and enjoy a meal with her. I would just want her to feel my appreciation for her. I don’t really know that much about her nor feel I need to. She is not even human to me. She is just that voice.

Yeah I know, sitting at a table with her would be super awkward…

So there you have it. Three dinners. Three women. Two dead. I’m ready!