{"id":6222,"date":"2026-02-26T17:27:25","date_gmt":"2026-02-26T16:27:25","guid":{"rendered":"https:\/\/ver-ooginoog.nl\/bibliotheek\/the-shame-remains\/"},"modified":"2026-09-09T17:08:58","modified_gmt":"2026-09-09T15:08:58","slug":"the-shame-remains","status":"publish","type":"library_pt","link":"https:\/\/ver-ooginoog.nl\/en\/library\/personal-stories\/the-shame-remains\/","title":{"rendered":"\u201cThe shame remains\u201d"},"content":{"rendered":"<div class=\"wp-block-post-date\"><time datetime=\"2025-11-06T17:26:00\">06 November 2025<\/time><\/div>\n<p class=\"wp-block-paragraph\"><strong>Name:<\/strong> Soraya <br \/><strong>Age:<\/strong> 47<br \/><strong>City:<\/strong> Belgium<br \/><strong>Condition:<\/strong> retinoblastoma<\/p>\n<h2 class=\"wp-block-heading\"><strong>Who are you?<\/strong><\/h2>\n<p class=\"wp-block-paragraph\">I have four children and two grandsons. Unfortunately, my first husband passed away shortly after the birth of our youngest daughter; I later remarried Wim. Together with my husband, I run a construction company. I go line dancing one evening a week. I also volunteer with the patient organization Spierziekten Vlaanderen and the Red Cross.      <\/p>\n<h2 class=\"wp-block-heading\"><strong>Why can you only see out of one eye?<\/strong><\/h2>\n<p class=\"wp-block-paragraph\">At a very young age, I was diagnosed with a retinal blastoma in my right eye. I was a year and a half old. I\u2019ve had a prosthetic eye ever since. From what I\u2019ve always been told, not much was known about this disease back then. My eye was removed immediately. I didn\u2019t undergo any chemotherapy or radiation treatment at the time.       <\/p>\n<h2 class=\"wp-block-heading\"><strong>How do you like the ocular prosthesis?<\/strong><\/h2>\n<p class=\"wp-block-paragraph\">Of course, I\u2019m used to it. I don\u2019t know what it\u2019s like to be able to see with two eyes. My ocular prosthesis comes from an ocularist in Germany, the Institut Trester. I\u2019ve always tolerated the glass prosthesis fairly well. I also call it my personal \u201cbarometer.\u201d I always know a few days in advance that I\u2019m going to get sick. That\u2019s when I get an infection behind the prosthesis, with green pus. Once the illness or virus has taken hold, the inflammation goes away immediately. Another thing I find strange about the prosthesis is that when, for example, there\u2019s a candle on the table at a restaurant, my prosthesis reacts to it quite quickly\u2014it starts to irritate me right away. So I always blow out the candle right away when I arrive. I also notice it when I work on my laptop or tablet for a long time without my glasses. I think my prosthesis itself is very beautiful. It never ceases to amaze me how skillfully the ocularist crafts it and how identical the color is to my own eye.            <\/p>\n<h2 class=\"wp-block-heading\"><strong>That sounds like you&#8217;re really happy about it?<\/strong><\/h2>\n<p class=\"wp-block-paragraph\">That\u2019s not really true. I still find it hard to deal with having an eye prosthesis. I was bullied a lot when I was younger because of my eye prosthesis. That really took a toll on me. For example, I really like it when the sun is shining, because then I can put on sunglasses and nobody can see it.      <\/p>\n<p class=\"wp-block-paragraph\">I still find it really uncomfortable to talk to people who look me straight in the eyes. My prosthetic eye also doesn\u2019t move with my eyes\u2014it only moves a tiny bit. I\u2019m still embarrassed by that. Especially when I\u2019m tired, the difference is very noticeable. My eyes don\u2019t open to the same extent anymore.      <\/p>\n<p class=\"wp-block-paragraph\">Or when people take photos of me, I always want to see the photos first before they\u2019re allowed to use them. I always check my eyes. Sometimes photos really have to be retaken a lot of times before I\u2019m satisfied with the result. That\u2019s why I find the photo for this interview the hardest part.     <\/p>\n<h2 class=\"wp-block-heading\"><strong>How are you doing now?<\/strong><\/h2>\n<p class=\"wp-block-paragraph\">Things are going pretty well, though the shame will never go away. In recent years, my good eye has also been getting worse. It gets tired very quickly, and I have trouble focusing because of another condition. That does worry me. I often think about the future\u2014what if I\u2019m old and can no longer put my prosthetic eye in or take it out by myself? Will it become even more noticeable as I get older?     <\/p>\n<h2 class=\"wp-block-heading\"><strong>Why did you become a member of the OOG in OOG Association?  <\/strong><\/h2>\n<p class=\"wp-block-paragraph\">I happened to discover the organization on social media. I was looking for information about a prosthesis that can move with me. I was surprised by the information and the stories from others in the same situation on the site. It\u2019s a shame I\u2019ve had to miss out on this my whole life. That\u2019s why I became a member right away.   <\/p>\n","protected":false},"excerpt":{"rendered":"<p>Meet Soraya from Flanders.<\/p>\n","protected":false},"featured_media":6223,"template":"","meta":{"_acf_changed":false,"_daextauttol_enable_tooltips":""},"library_cat":[113],"class_list":["post-6222","library_pt","type-library_pt","status-publish","has-post-thumbnail","hentry","library_cat-personal-stories"],"acf":[],"_links":{"self":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt\/6222","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_pt"}],"about":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/types\/library_pt"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media\/6223"}],"wp:attachment":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media?parent=6222"}],"wp:term":[{"taxonomy":"library_cat","embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_cat?post=6222"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}