How are you feeling? About being back in the Netherlands

Where to go? Guiding lines on the floor of the hospital.

A blank document is staring at me from the screen of my MacBook. I’ve written down “How are you feeling?”. Since I returned to the Netherlands I’ve been asked this question many times. But I’m still not able to answer it to my own satisfaction. When I try to form a response my brain is telling me something like “Help. Error”, while my stomach clenches and probably gives the truest of all available answers. Since I can’t let people experience how my body reacts to their question I have to find words. But my brain keeps on reporting “Error”.

The short-term solution to my part-time paralysis is to smile after a moment of silence that feels really awkward to me, and respond “I still don’t know how to answer this question, it’s getting better with the pain in my foot, but I’m still sad about the whole situation”. This is a true answer, but never do I feel like it’s the whole story. I’ve decided to try and split up the answer to ‘how I’m feeling’ in different chapters and write them down. Before you read on, a warning: you’re in for quite a (personal) story. But in a way you’ve been asking for it ;-)

Part 1: Atraumatic avascular necrosis in the head of the talus bone of my left foot

The orthopedic doctor in the academic hospital of Rotterdam confirmed what the podiatrist in Beijing already told us: I suffer from avascular necrosis in the talus of my left foot. The necrosis has a mysterious cause, since in most cases it is a result of a broken bone or sickle cell disease. I have neither, which leaves both the doctor and me guessing about treatment and prognosis. I keep asking “What can I expect? When can I walk without pain again? Will I be able to carry weight soon? I’m a photographer, when do you think I’ll be able to work again? Will I be able to climb a mountain in the future?” The doctor keeps saying “I don’t know, we’ll have to wait and see”, or “There’s almost no statistics on your case, so I can’t tell you anything that might make things clearer for you”, and, the worst of all “I can’t tell you if your bone is making progress, we’ll only monitor if things get worse”.

The logic behind monitoring degression instead of progression is as follows: my body needs to grow back bone marrow after some of it died off after a period of limited blood supply. This regrowing process will take two or three (!) years. On an MRI, you can see which parts of the bone contain less bone marrow, and is therefore the test on which you might see progress. However, an MRI, at least in the Netherlands, is considered expensive, and is, according to the doctor, not as interesting as me just telling him it’s getting better with the pain.

So, the doctor does not monitor progress.

Instead, he monitors whether my talus bone deforms or collapses. This might happen when the bone marrow doesn’t grow back or dies off even further, and I over-use my left foot. This ‘deformation of bone’ is monitored by taking x-rays every few weeks. Those x-rays don’t show anything (an x-ray does not show the necrosis itself), it just shows something when things get really bad. And since really bad means I’ll probably be screaming from pain anyway, I don’t see any point in his method. What I do want to know is if the bone is getting better. A regrown bone means I know I can travel, work, climb mountains again. Right now I can only guess if that’s the case.

So, how do I feel? Frustrated by the lack of information I get from my doctor, insecure about the healing progress and extremely disappointed in the medical ‘go home and we’ll see‘ system.

Where to go? Guiding lines on the floor of the hospital.
Which path to follow. Stripes on the floor of the hospital.

Part 2: No more travelling? A house? A job?

Not knowing makes me feel indecisive. How do you plan a future without a time path? The first weeks of being back in the Netherlands I was hoping for (and expecting) a clear treatment path and timeline in which I would get better. As you might remember, in China I had a doctor who told me he wanted to try to recover the talus by using bone from my hip combined with stem cells. Two weeks in a Chinese hospital and three to six months of revalidation. It didn’t sound like an easy path, but it was an actual plan, and now, with a doctor who just tells me ‘the bone could grow back in two or three years’ that plan starts to sound better and better to me.

Of course, one reason for feeling indecisive is I still haven’t fully accepted being back from my dream journey yet. I should be playing with my camera on beaches in the Philippines right now, after a month of travelling through gorgeous China. A journey of eight months has been in my head for over a year, with all the dreams and practicalities. This is not something you forget about in a few weeks. But I’ll have to accept my situation before I’m able to find a new job or assignment, settle in a house, think about stuff like salary and wallpaper again.

Until I reach that point, the same thoughts repeat in my head: If my foot gets better soon I want to travel again. Therefore, let’s not find a job or a house yet. If my foot doesn’t get better I need to get money and a house. Therefore, let’s find a job and a house. If my foot gets better, but only after a few months, will I regret having taken a job and spending money on a house? Because that’s time and money I wanted to spend on travelling. But well, maybe my foot gets better soon. Or wait, no, maybe it takes another three years…

So, how do I feel? Indecisive, stuck in a place I wanted to leave behind for quite a few months, insecure about how to plan the future.

Where to go? Guiding lines on the floor of the hospital.
Where to go? Guiding lines on the floor of the hospital.

Part 3: Having a body, loving your body

If you’ve made it this far in my blog post you might be ready to get an even more personal answer. Because, in all honesty, at this moment I’m not on good terms with my own body. That’s not an easy thing to say out loud. But I’m really not liking my body right now.

Since I can remember, I have physical challenges. I’ve tried to write down a list, per year, starting at the age of 14, of stuff that caused me pain somewhere in my body. I can’t even recall my own history. What I do know is I certainly can’t remember a year in which I did not experience any major pains. A few items on the list are:

  • Foot pains during my teenage years which caused me to get bad grades at school gym.
  • Lower back pains which led to wearing a corset in order to be able to make my exams or, later in life, not being able to work more than three days behind a desk.
  • Patellofemoral Pain Syndrome (cartilage pain in the knee), which took about a year to revalidate from, but never completely healed.
  • Symphysis Pubis Dysfunction (a problem with the pelvis), while not even being pregnant. This one I perceived as worse than pain. It feels like your never standing up straight, even though you stand up perfectly straight.
  • Severe daily head aches for more than a year which made me decide to quit my full-time job.

So it’s a different source of pain every year, and that means dealing with something anew every year. You try to figure out what’s wrong, find the right therapist to help you get better, and if it won’t get better, make a life change in one way or the other.

But after about 15 years of falling down, getting up and ‘going on’, I’m a bit tired. After solving the previous ‘big issue’, the year long headaches, I actually thought I was ‘finished’ for a while. I did physical therapy, went to a trusted osteopath, got less and less headaches, and even found a new therapist who learned me to walk straight again. This felt like a ‘reset’, a perfect starting point for a big adventure. “Right now”, I told myself, “I’m strong and ready to go pain-free on a journey of a lifetime, with nothing to hold me back. And deservedly so.” But here I am, temporarily living in a house that’s not mine, writing down a blog about the thing that’s keeping me from living my life. Again.

So, how do I feel? Disappointed that again I’m being called back to work on my body and not living the life that I chose to live.

Where to go? Guiding lines on the floor of the hospital.
The path to follow. Stripes on the floor of the hospital.

Part 4: From feeling depressed to feeling manic

The first weeks in the Netherlands Cathal and I were welcomed with open arms by two friends, who gave us a place to sleep, eat, laugh, recover and make up our minds about the next steps to take. This was an extremely happy place to be in a situation like this. But apart from that I felt deprived of everything. My dream journey was gone. I couldn’t use my foot without pain killers or crutches. I had no income, so I even did not feel independent. Oh, and don’t forget I could not get to my personal stuff. Everything we own is stored in storage boxes that are packed in such a way that we can’t reach any of it without the help of two big muscled professional movers. (I love them. They helped us find some of our winter clothes.)

There were days I did not know why I should come out of bed. I was mad at and disappointed in my body. I was not able to go very far from the house. I read a book, watched Netflix, and went to bed again. I couldn’t do what I love most: go outside to walk around and take pictures. I wanted to cry, but did not know how to start crying. I wanted to be strong, but had no energy to be strong.

But here I am, in the middle of the night, 01:40 AM. I couldn’t sleep the past few nights. I had some pain the last few nights, which didn’t help. But more importantly: my head was spinning. My head was spinning with things I want to do.

  • A dear friend of mine gave me lots of inspiration and tools to create stuff with my hands. I can do these things from the couch or kitchen table.
  • I made my first cold brew coffee, which made me realise how much fun it is to experiment in the kitchen. I even as an impulse registered a name for my own coffee brand, even though this might be a temporary craze.
  • I bought a new special lens that makes it possible to get creative with photography close to home, so the pain in my foot doesn’t prevent me that much from doing what I love.
  • I’ve subscribed as a volunteer to a service that makes sure immigrants can learn Dutch with a language coach. I want to make sure people fleeing to the Netherlands feel welcome.
  • I have big plans for the professional collective I’ve helped build from the ground up.
  • I’m printing pictures, going through my photo archive, updating my website. I have plans to create art from photographs and paint.

Guess I’m bouncing back from a depressed state to a bit of manic phase. I’m sure I’ll find the middle ground soon.

Part 5: Let’s publish this blog

I started writing this blog weeks ago. It’s been a hard one to write, since I don’t find it easy to share my struggles, let alone on this weblog that was supposed to be filled exclusively with awesome travel stories. Plus, every day I feel different, which means if I would finish this blog tomorrow instead of today it would probably have a different ending.

So, how do I feel? Sad, disappointed, frustrated, in short: all of the above. But also: energised by new ideas, grateful for friendships, inspired and creative, and relieved that I’ve finished one of the hardest (oh, and longest!) blog posts I ever wrote.

13 Comments

  1. Remember, your talent will always win. Isn’t it sooner, than later. Focus on it, you’re good at photografy. Let others do the refugees ;-) You are young, you are not in a hurry, so maybe you should put your focus point further away in time, maybe you will make your most important journeys in 10 years from now, not at this moment. Give it time. Discover new worlds under your macro-lense. My English is not as good as yours, but you get my meaning. ;-) Good luck and keep us posted. :-)

    • Thanks for your nice and wise words Arnoud! That always helps. Focussing on what I’m good at should indeed be my primary focus. And it will be :-) (Have by the way been thinking about photography workshops for refugee children, so I can share my talent with people who could use a little distraction and art in their lives.)

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