Life lessons and insights from eye problems

Retinoschisis: losing partial sight in one eye

Recently I suddenly lost a part of my vision in one eye. Part of my retina had detached. I had to find a solution in Italy since I was not allowed to not travel. I went to a local hospital where they proposed to laser my retina, to prevent it from detaching further; an experimental treatment. I decided to go for it and lost even a bit more vision. Now I am learning to live with compromised vision in one eye and the constant threat that it will happen again in this eye or the other eye. Not easy for a writer, writing coach and avid traveller…👀

The first part of this blog describes the events, my experiences, and my observations of the Italian healthcare system. The last part is dedicated to the inSIGHTS and life lessons I learned from this experience.

Light flashes

On a quiet Sunday afternoon, out of the blue, I started seeing ‘light flashes’ in my right eye. Every time I moved my eye or head I saw this ‘lightning’; always in the same place, in the periphery of my sight. Instinctively I felt this was not OK. I messaged my doctor friends in Holland and they told me I should go to an eye doctor first thing in the morning. I went to bed at 6 PM, trying not to move, not to put any pressure on my head. I was very worried because even in the dark I saw light flashes.
An eye problem is so different from anything I have ever experienced because it is literally IN my head. I wish it could have been a toe problem… 🙂

First observations of the Italian healthcare system

Monday morning I went to the hospital in the nearest village here in Puglia: Ceglie Messapica. At the reception, they told me that the eye doctor did not see ‘walk-in patients’ and that I had to go to the emergency room, just around the corner. At the emergency room, they told me to go to the hospital in Martina Franca, about 25 mins away. They did not even see me, ask me anything, or checked if I could drive… ;(

I drove there, one eye on the road, not to provoke more light flashes. Outside the emergency room, I was first  ‘processed’ in a tent. Documents, temperature check, covid test, and questionnaire.

After that, I was moved into the hospital, step by step. Interesting: I only got asked the same questions about residence over and over again (where were you born, where do you live?), none about insurance. I even offered to pay cash, but nobody seemed interested in that, only to get me correctly into the system. Italy offers free health care to its residents and apparently, they had no idea what to do with a non-resident. Finally, they took my ‘Codice Fiscale’ (fiscal number) and put that in the computer instead of the ‘tessera sanitaria’ which is the insurance card every Italian possesses.

Patients or food?

After about 45 mins I got assigned to an eye doctor. A nurse walked me to the third floor and told me to wait in the middle of a hallway. The doctor’s office was at the end of the hall. While I was waiting, for about 15 minutes, I heard the doctors talk in that room. About coffee and croissants. No hurry to see a patient. I was surprised that I was the only patient on this floor at all. Every now and then some nurse or doctor passed me in the hallway to have a look at me.

Finally, I was asked into the office. Everybody seemed to be impressed/confused to have a foreigner in the hospital. There was a big relief when they found out that I speak some Italian. The relief was followed by discussions about how difficult the language is.

Retinal detachment

Finally, the attention was turned to my eye. I got a very unpleasant examination, where they diluted my pupil to examine my eye, with a lens pressed on my eye and a light with a mirror that the doctor uses to look deep into my eye.

The doctor did not explain what he was doing, nor share any of his findings. In the end, he told me to come to another hospital tomorrow, where they have an echo machine, so he can make an echo of my eye. When the anesthesia in my eye got less active and I could see again, I studied the official-looking document he gave me. There! The doctor wrote that he suspected a ‘retinal detachment’…

Of course, I Googled. It did not look good. Risk of loss of eyesight. Probably needs a laser treatment or an operation. What I had could not be cured, we could only hope that the retina would not detach further. Laser treatment would burn some spots on my retina, which would then form scars, that might prevent the retina from detaching further. That sounded horrible! But reading about eye operations, made laser look like the best option. That operation looked really scary! And not only that, but during the operation, they would replace the liquid in my eye with oil or gas, which would make my lens cloudy, so they would have to replace my lens as well. The more I read about the operation, the more I was hoping that laser treatment would be enough. Could I, should I go to Holland to solve this?

I called a Dutch eye hospital and they told me that first, they have a waitlist, and second I should not fly in this condition. So my solution should be found here, in Italy.

Stuck in Italy 🇮🇹

After another night of trying to sleep with my head up, to avoid pressure on my eye, I went to the hospital in Taranto. Same doctor. He was in a foul mood, snapping at his assistants, and behaving like a tyrant. He kept telling them he was in a hurry, while there – again – were no other patients around. I was wondering: if an operation is necessary, do I want to be operated on by this doctor? But I did not seem to have too much choice. Treatment needs to be as fast as possible, according to Google, to avoid more damage and I did not have time to go ‘shopping around’.

The echo showed a clear picture of a detached retina. Doc gave me a print of the image and made me wait, without explaining anything. At some point, I asked: ‘This looks like a detached retina?’ He looked at me suspiciously: ‘How do you know this?’ ‘Google’, I answered with a smile.

Second opinion

While waiting for the same unpleasant examination as yesterday, I googled (again with one eye). Now retinal detachment was confirmed, I read again about the recommended operations. The laser was not an option anymore. There were three different operations possible to solve my issue, but none of them sounded pleasant. One is a rubber band around the eye, another is replacing the eye liquid with gas, which will result in the need for a lens replacement within a year or so, and the third is equally unpleasant.

Again the doc did not tell me anything after the examination. But I heard him ask a colleague for advice and he sent the picture of the echo to another colleague. Finally, I was told to go to yet another hospital tomorrow, where another doctor would examine me. Seems like I got my ‘second opinion’ and also a slightly bigger hospital.

Anthropological observations

Good things about Italy so far: no waitlist, immediate attention, weird enough no questions about insurance (health care is free in Italy).

Weird things:

  • All everybody seems to talk about is food. What they had for breakfast, what they will get with their coffee, what they will cook for Christmas. 😋
  • There seems to be a lot of irritation, and it is openly expressed.
  • Lack of toilet paper?!? I have been to 5 or 6 bathrooms in the three hospitals and nowhere there was any toilet paper. Not that the paper was finished, but there were not even facilities for toilet paper! Normally Italians use bidets or small showers next to the toilet. They were not available either. This is a mystery that I intend to solve as I continue this anthropological experience…

Retinoschisis

The next day I went to yet another hospital, in Masafra. To my surprise the eye doctor department there was super busy. Among these hundred patients or so, I got special treatment, it seemed. They invited me to the front of the queue and a new doctor saw me. He turned out to be the specialist the other doctor had consulted. He had given presentations and published scientific papers about this. He even spoke English very well. He told me that I don’t have retinal detachment, but ‘retinoschisis‘, which is a genetic disease. Nobody in my family has had eye problems and my eyes are very good: I don’t even have to wear reading glasses, so I was surprised. He explained that the retina gets very thin and can split into two layers, as had happened to me.

Laser treatment

There is not really a treatment. We could wait and see if it would progress any further, risking losing my sight completely. Or he could try to laser around the split retina, hoping that would stop further splitting, but that would take a bit extra off my eyesight, as he would have to laser on a healthy retina. The third option was an operation, but we both thought that would be too impactful, seeing that an operation would also just try to stop further detachment or splitting.

I decided to go for the laser treatment. Could he do it today? He said he would check, but he was busy, etc. Yet half an hour later a nurse came by, asking me to sign a disclaimer. apparently, the laser treatment was going to happen!

I was happy and scared at the same time. All this time I was in the ‘doing’ mode, trying to figure out what was happening and trying to find a solution. Now it was getting real. Somebody I did not know, in a remote corner of Italy, was going to burn a laser in the part of my retina that was still healthy… I did not think too much but took the intuitive decision to GO.

In the video below I describe the treatment, which was horrible. After that, while I was sitting in my car in the parking lot for 3,5 hours, unable to drive or even see, all the tension and emotions were released and I felt very vulnerable and alone. Luckily some friends were available for a call and some other friends drove 2 hours to pick me and my car up and take me home.

Update

A week after the laser surgery I had to go back to the hospital for a checkup, to see if they managed to stop the detachment. In this video, I share my update… 👀

Life lessons

As always, when something unexpected or unpleasant happens to me, I try to find the lessons. “When you are stuck in the ‘shit’, you better dive deep into that pile of shit, to find the ‘present’ hidden in it” I tend to say.

So these are some of the things I did and learned:

I looked for the symbolism of things happening in my life

  • For example, I was still trying to ‘detach’ myself from a previous relationship. I had literally told my friends repeatedly that I was trying to let go of our energetic connection, and I was ‘peeling him off, thread by thread’. Maybe I had ‘let go’ just a little too much and the ‘detachment’ had gone a bit too far? 
  • Also, in the past years, I had been trying to match my ethics and worldview to his explanation of the world. Our views and experiences were so opposite that it literally tore me up. Conclusion: I had to stick to my own worldview.
  • I booked a session with my somatic coach to see if I had missed anything. The learnings my body expressed were: ‘Trust your world vision’ and ‘learn to see with your heart’
  • Somebody sent me this link to the emotional and spiritual meaning of eye problems, which also gives interesting views.

Trying not to resist the situation

  • Pain is not suffering. It is part of life. RESISTANCE to pain is suffering. 
  • Not accepting a given situation is suffering. If you cannot change the situation, why fight it? All I could do was try to accept and deal with the situation. 
  • Accepting the emotions that present themselves in this uncertain situation. Like fear (what if it happens again? Or to my other eye?), doubt (can I trust my body, my vision?), anxiety (what will my life look like when my sight deteriorates further?) All I can do is be present, and be aware of my emotions. Breathe.

Asking for help 

  • Normally I am used to doing everything by myself. Now I asked friends to call me when I was feeling down and to pick me up when I could not drive. 
  • I even asked my clients to be patient when I could not respond to my emails or other screen-related things as fast as I normally would.
  • While being open to help, I also wanted to avoid letting myself be overwhelmed by advice/fear of others. Like: “Go back to Holland”, “settle in one place”, “prepare for complete blindness”, do this, don’t do this.

Adjusting to the new reality

  • Throughout all this, I have realized even more how strong my intuition is, and how it serves me to help others. Even when I cannot read as much as I used to, I can still help them with their energy, their book, and their business. I can still capture the essence of things. I can still make an analysis, and connect the dots. I can still find solutions. I can still help others to share their important message.
  • I constantly have to remind myself that I can’t go back to ‘how it was’. I will have to find new ways of being, of working, of traveling, of staying fit. I have to set new priorities. Fewer screens. No heavy exercise, and avoid anything that poses a risk to my eyes.

To be continued… 👀

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