{"id":6587,"date":"2022-12-30T09:02:00","date_gmt":"2022-12-30T08:02:00","guid":{"rendered":"https:\/\/ver-ooginoog.nl\/bibliotheek\/despite-having-macular-degeneration-she-has-always-remained-positive\/"},"modified":"2026-09-15T17:37:09","modified_gmt":"2026-09-15T15:37:09","slug":"despite-having-macular-degeneration-she-has-always-remained-positive","status":"publish","type":"library_pt","link":"https:\/\/ver-ooginoog.nl\/en\/library\/personal-stories\/despite-having-macular-degeneration-she-has-always-remained-positive\/","title":{"rendered":"Despite having macular degeneration, she has always remained positive"},"content":{"rendered":"<div class=\"wp-block-post-date\"><time datetime=\"2022-12-30T09:02:00+01:00\">30 December 2022<\/time><\/div>\n<p class=\"wp-block-paragraph\">My eye problems began in March 2021. Suddenly, while on the ferry, I could no longer read the \u201cgiant letters\u201d on the other side of the Lek River. After visiting the optician in the village, it became clear that I had a macular hole in my right eye. This was followed by my first visit to the Eye Hospital in Rotterdam. After two postponements, I had surgery on May 6, 2021\u2014three days after my granddaughter was born.    <\/p>\n<h2 class=\"wp-block-heading\">Another surgery<\/h2>\n<p class=\"wp-block-paragraph\">Of course, I had hoped and expected that after the surgery I\u2019d quickly be back to my old self and able to get my life back on track. Unfortunately, things turned out differently, and I\u2019m still not there yet. I\u2019ll try to briefly outline what happened.  <\/p>\n<p class=\"wp-block-paragraph\">During the surgery, my vocal cords were damaged while I was being put under anesthesia, and I had to cough because they were irritated. This caused bleeding in my eye, and a second surgery was necessary three days later. Eleven days later, I underwent another surgery because I still had no vision. After the third surgery, I had \u201csome\u201d vague vision, but partly because the gauze behind my eye had been replaced with oil, that vision was minimal.   <\/p>\n<p class=\"wp-block-paragraph\">Of course, I was hoping once again that things would work out this time\u2026 but unfortunately, after months of checkups\u2014during which I always remained positive, as described by Marianne de Zwart\u2014the pressure in my eye just wouldn\u2019t go up, and the oil couldn\u2019t be removed from behind it. In my daily life, light bothered me a lot, and my good eye got tired quickly\u2014and that\u2019s still the case.<\/p>\n<p class=\"wp-block-paragraph\">Meanwhile, the problems with my vocal cords hadn\u2019t been resolved. Through the ENT doctor, I found out that my vocal cords had fused together (laryngeal web). I was put on the waiting list for surgery, but it was during the COVID-19 pandemic, so it was just wait, wait, and wait\u2026 In the meantime, I started speech therapy, and I\u2019m still receiving it now.  <\/p>\n<p class=\"wp-block-paragraph\">Although I find it a little strange to say this about myself, I always try to look on the bright side. Amid all the misery, I just want to say that my grandchildren have truly been a ray of hope for me these past few months. <\/p>\n<h2 class=\"wp-block-heading\">For the fourth time<\/h2>\n<p class=\"wp-block-paragraph\">In November 2021, I finally underwent my fourth eye surgery. This one was to save my eye, not to restore my vision. During this time, there had already been a lot of talk about an ocular prosthesis. Around that time, I discovered the OOG in OOG Association\u2014through a brochure at the Eye Hospital. I got in touch with Huub Scholten, who helped me weigh the pros and cons of an evisceration surgery. In April 2022, my husband and I attended the OOG in OOG Open House. I had some wonderful, informative conversations there, and I felt right at home. I enjoy attending the online meetings\u2014when the topic is relevant to me.       <\/p>\n<p class=\"wp-block-paragraph\">In the end, I was able to keep my own eye, but in June 2022 I did start wearing a shell prosthesis over it. This felt good; it felt as if it gave my eye peace and a sense of security. I was no longer bothered by light, and my eye stayed open. But just when I thought, \u201cI\u2019m there\u2026,\u201d it turned out that wasn\u2019t the case. Wearing the prosthesis had damaged my cornea, leading to weeks of trips to the Eye Hospital and, ultimately, a fifth eye surgery in September 2022. This time, I had a mucosal graft so that I could start wearing a prosthesis again.     <\/p>\n<p class=\"wp-block-paragraph\">In the meantime, I had surgery on my vocal cords in February. For me, not being able to talk for a whole week is soooo hard. But I managed. Unfortunately, my voice still isn\u2019t what it used to be, and it\u2019s unclear whether it will ever get any better.   <\/p>\n<p class=\"wp-block-paragraph\">The next step will be to start wearing an ocular prosthesis again, and this time one that\u2019s customized for me. I still have some questions about this as well, including: should I choose glass or plastic? And I\u2019m finding information about this at the OOG in OOG Association.  <\/p>\n<h2 class=\"wp-block-heading\">Future<\/h2>\n<p class=\"wp-block-paragraph\">I still feel uncertain about my future. Work has always been my biggest passion, but because of all the problems I\u2019ve been facing, I\u2019m unfortunately only working a few hours a week as part of an occupational therapy program. Right now, it\u2019s still unclear whether I\u2019ll be able to keep my job. That feels like a failure! I really need to rediscover what\u2019s achievable for me and try not to set the bar too high. I still find it difficult to live in the here and now. I have a hard time letting go of the past, but that\u2019s necessary to move forward. I sometimes say, \u201cI miss the carefree, cheerful version of myself.\u201d       <\/p>\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:33.33%\">\n<figure class=\"wp-block-image size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"529\" height=\"705\" src=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marianne-lotgenoten-3-529x705-1.jpg\" alt=\"\" class=\"wp-image-2262\" style=\"width:204px;height:auto\" srcset=\"https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marianne-lotgenoten-3-529x705-1.jpg 529w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marianne-lotgenoten-3-529x705-1-225x300.jpg 225w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marianne-lotgenoten-3-529x705-1-360x480.jpg 360w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marianne-lotgenoten-3-529x705-1-270x360.jpg 270w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marianne-lotgenoten-3-529x705-1-124x165.jpg 124w, https:\/\/ver-ooginoog.nl\/wp-content\/uploads\/2024\/11\/Marianne-lotgenoten-3-529x705-1-55x73.jpg 55w\" sizes=\"auto, (max-width: 529px) 100vw, 529px\" \/><\/figure>\n<\/div>\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\" style=\"flex-basis:66.66%\">\n<p class=\"wp-block-paragraph\">As you can see, I\u2019m still in the middle of a process of coming to terms with things, accepting them, and finding a new way forward. Over the past two years, we\u2019ve been on vacation in Zeeland and on Texel so we could take lovely walks along the beach. That was good for my fitness and helped take my mind off things. That\u2019s what I hope to do more of. Go for more walks and just get out and do things. For example, I\u2019ve already discovered audiobooks and started taking Qigong (a Chinese movement practice) classes. My main goal is to once again be able to enjoy everything that comes my way \u201cfreely\u201d and without worry.      <\/p>\n<\/div>\n<\/div>\n<div class=\"wp-block-group is-nowrap is-layout-flex wp-container-core-group-is-layout-8f761849 wp-block-group-is-layout-flex\">\n<p class=\"wp-block-paragraph\">Who knows\u2014maybe we\u2019ll see you at the next meeting of the OOG in OOG Association!<\/p>\n<\/div>\n<p class=\"wp-block-paragraph\"><em>By Marianne de Zwart<\/em><\/p>\n<p class=\"wp-block-paragraph\">\n","protected":false},"excerpt":{"rendered":"<p>My name is Marianne de Zwart-Vogelenzang de Jong. I\u2019m 59 years old and live in Alblasserdam, with a view of the windmills at Kinderdijk. I am married, have an adult son and daughter, and am the proud grandmother of a five-year-old grandson and a one-and-a-half-year-old granddaughter. I work as an activities coordinator at a nursing home.  <\/p>\n","protected":false},"featured_media":6588,"template":"","meta":{"_acf_changed":false,"_daextauttol_enable_tooltips":""},"library_cat":[113],"class_list":["post-6587","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\/6587","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\/6588"}],"wp:attachment":[{"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/media?parent=6587"}],"wp:term":[{"taxonomy":"library_cat","embeddable":true,"href":"https:\/\/ver-ooginoog.nl\/en\/wp-json\/wp\/v2\/library_cat?post=6587"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}