I would like to thank Karen, Caroline Williams twin sister, for presenting her story, of how OOKP has encroached on her life. This is a very interesting view of how OOKP not only affects the patient, but also has an impact on those close to patients.
So, take it away Karen.
My name is Karen, I am the twin sister of Caroline Williams (non-identiical), who underwent OOKP in 2019/2020. This is my story from a sibling/family perspective.
Both my older brother, Ian, (who sadly passed away in 2013) and Caroline, were born with a rare genetic eye problem – Peters Anomaly. This had never been seen in the family prior to Ian and Caroline, it started with them. I was fortunate, in that I was born with perfect eyesight.
Our parents brought us up to be extremely independent and no favouritism was given to either Ian or Caroline, just because they had problems with their eyes. We were brought up in a loving home, with loving parents, who allowed us to experience our early life , as children should, encouraging us to do the things we wanted to do and were interested in.
Prior to Caroline having to have the OOKP procedure, she went through many, many eye operations and these experiences obviously came with highs and lows, depending on the situation. Caroline and I were and remain, extremely close and so have a very close and trusting relationship. I was somebody that Caroline could rely on, to listen and give advice or opinions if asked.
When it came to having the OOKP, this was a huge decision and one that we looked in to, thought about and talked about a lot. This was very important, not only to Caroline, but to me and the family at large. This was because this was something that meant an awful lot to us all, in what we hoped and expected out of it, but also keeping in mind, the potential pit-falls and how this would affect us if things did not work out.
The decision to have the OOKP, was ultimately Caroline’s in the end, but I know that she took our feelings on it on board also and so it inevitably became a decision that Caroline made, that would involve myself and the rest of the family, in life changing aspects of our daily lives.
I have willingly and gladly been there to help Caroline getting to and from hospital admissions and appointments, which is a big commitment. I was there when she had both stage s of her OOKP, when she was upset, worried, happy, sad, all the emotions, not only does Caroline experience, but myself also, as well as the family. I was able to help and guide Caroline’s decision to apply for a guide dog (David), after the OOKP, which was initially successful, became less so, after a retinal detachment.
Caroline remains fiercely independent, but still leans on me for support, advice and encouragement. I am proud to be able to support her in every aspect of her life that I can, even though sometimes, I can be both emotionally and physically drained by the struggles she faces at times, which obviously hits me sometimes harder than her.
I enthusiastically feel compelled to let people know about the OOK procedure and people with visual impairment in general, as I know from first-hand experience, how life changing a successful operation can be, but also, able to have empathy for those who have not had such a success story.
What I have learnt, is that whatever way the operation goes, life does not have to end for either the person going through it, or the close family members. By providing love, support, encouragement and understanding, both sides can end up having a positive experience and learn so much about life’s experience and people in general.
I encourage all patients and families, to be as open and honest with each other as possible and stay close and grounded. For those who perhaps don’t have a close family member, perhaps a close friend would be a great support and also, the other people, who have gone through the OOKP themselves and are able to give vital encouragement and advice.
I wish you all the very best for the future.
Karen
Caroline’s Sister
EDITORS NOTES.
What a fantastic story. As often occurs with OOKP patients, they will always require varying degrees of assistance. However, I think Karen recognises, allow the person to determine the amount of assistance they require, then provide this without question.
Thanks Karen and I hope others gain from this story. If you have a story of your journey, please submit it. You never know, it may be just a single sentence in your story, which changes the life of another.