PPP013 Passionate about organs
So why am I doing this to myself? Doubling the episodes per month? Well, I have so many guest lined up to interview, I don’t want you to wait too long between episodes! And besides that, I enjoy this tremendously – I ‘m like a child with a new toy!! If you enjoy it, please let me know, it keeps me motivated. And give me an idea of the type of episodes you like hearing, and I can serve you better.
Another change I am bringing in is to add some solo episodes in-between interviewing guests, like the one you are listening to today and my purpose for hat is to share with you some of the things I am passionate about. Today’s passionate topic focusses on organ donation. I must admit, I would probably not have been so passionate about this if I was not the recipient of an organ myself. Sometimes one forgets the things you went through in life, but it makes you stronger and more resilient.
Last year in the most unexpected place, I stumbled upon an Organ Donor Foundation cubicle, the least visited of all the others in that set-up. As I was talking to the lady, sharing a bit of my story, my eyes started to well up. Surprised by this emotion after 7 years, I spent the rest of 2018 reflecting back to that time in my life when I could not see and decided I have to do an episode about this in 2019.
At 20 something I was diagnosed with a degenerative eye disease called Keratoconus – one of THOSE word you only learn to pronounce when you are afflicted with it!! This disease can progress through its levels so slowly, that an individual could wear hard (or Scleral) contact lenses for the rest of their lives, without any other complications. Alternatively the disease can quickly degenerate to a point where a corneal transplant is the only solution to a life of vision. My eyes degenerated over 15 years to the state where I was unable to wear contact lenses.
To give you an idea of how a typical day in my life was at a stage, I am going down memory lane to sketch a picture for you.
I remember preparing the children for day school and getting ready for work in the mornings. I would do that without contact lenses (my reasoning for that will become clear later. My husband works far away from home and had to leave before we even woke up. I had some vision with glasses, but at that stage I was classified as technically blind without contact lenses. With lenses I had 100% vision. You know your eyesight is poor when the specialist does not try to test your eyes by giving you the well-known letter map, but revert to asking you how many fingers you can see and you are not sure if it is three or four fingers he is holding up.
In any way, I would get by without contacts, but would put them in just before leaving the house, grabbing the children to drop them off at day school on my way to work. Kissing them goodbye, I would notice the mess on their clothes for the first time – I did not pick it up at home wearing my glasses. Embarrassing. But from there I had to go to work. The whole trip took me about 20-25 minutes. At work I would immediately go to the bathroom to remove the lenses and put my glasses back on.
Then I would proceed doing my work. I think some of my colleagues who did not know me well, could have been convinced by my behaviour and looks that I was under the influence or suffering from a severe hangover. My eyes were bloodshot red. The hard lenses irritated my eyes so much, that it became unbearable and painful (after trying EVERY kind on the market). Half an hour of lenses and the white of my eyes were red. Another clue to the observer strengthening their opinion of my after hour habits could be the fact that I was bumping into furniture if I was trying to walk as normal as possible from one side of the office to the other, or if I was touching walls and groping about as I was walking to keep me from bumping into things. Not only could I not see well, but my sense of depth was totally messed up. I remember whenever I poured water into my coffee cup, I had to concentrate and allow both hands to meet each other to ensure I do not spill all over the place. I also had to focus on where exactly the table stops, in order not to break yet another mug by misjudging the edge of the counter. Another piece of evidence was the fact that I would get up from my chair during meetings to stand closer to the white screen where the presentation was projected on or maybe sitting forward in my office chair leaning towards the computer screen, my nose almost touching the screen to be able to read my e-mails.
After a hard day’s work, my eyes now only slightly red, I would put my lenses back in to be able to drive back home and pick up the children. At home my first priority would be to remove the lenses from my eyes. By this point I had to bite back the tears of pain and focus on spending time with the children, bumping against furniture in the process. My thighs were dappled with blue and purple marks due to all the bumping. What a relief it was to go to bed, knowing my eyes will rest and heal. So concluded a typical day in my life during that time.
At 24, when I was diagnosed, my biggest fear was a corneal transplant. At 34 my biggest fear was NOT to receive the two transplants. Now at 44 I can confidently say I don’t fear blindness any more. I can choose NOT to wear lenses and are able to see well enough through my glasses to drive around legally and not bump into things anymore!! AND my eyes are white…
I have my freedom back, pain free. I don’t have 100% vision, but half of the time I forget I had an eye disease or stitches in my eyes! My life has changed dramatically. I can see my children grow up and all due to two families who was willing to allow their deceased loved one’s corneas to be donated.
I was not in a life-threatening situation, the worst that could have happened to me was blindness, but the gift to me was priceless!! I get emotional thinking about this, it had a profound impact on my life. I am not scared anymore to stare blindness in the eyes, but I am forever thankful for quality of life! How much more must someone feel who had received an organ that saved their life!! I joke now that I see life through two different people’s eyes! Literally and figuratively.
I am an organ donor. My family knows this and don’t have to worry to make this decision one day when I pass away. All of my physical body can be used (except my corneas J )
I urge you. I plead with you. Have this discussion with your loved ones NOW. You cannot take your physical body with you after you die, but your soul can look down from heaven on the nine lives you have saved, two people who can see better and the hordes of people with quality of life from skin and other tissue transplants.
I hope my story have inspired you to become and organ donor. May our passions inspire others.
If you feel there are other people who must hear this story, please pass it on. I am also passionate to share this with ‘’real’’ audiences. I sometimes share how my spiritual eyes were opened through this journey. Contact me and I will gladly come to your meeting or gathering to share.
You can get hold of me on my website:
e-mail: Wilmien.firstname.lastname@example.org or
cell phone: +27 836339525
My favourite books, which I can highly recommend