Hi friends,
It's been a roller-coaster of emotion for me this week. After spending years planning fun retirement full of adventure and joy I find myself facing crushing disappointment. I'm struggling to re-gain my emotional balance and figure out how I can salvage a dire situation.
I began having eye problems in February around Valentine's Day. I thought they were temporary and would get better. They didn't. I spoke to friend who's an optometrist and she assured me it was a condition that isn't serious (cataracts) for which there's an easy remedy (cataract-surgery which replaces your eye's lens with a new plastic one). She referred me to an ophthalmologist who, Wednesday morning, delivered devastating news -- I don't have cataracts; instead, I have a horrible disease that usually leads to total blindness. Called "neo-vascular glaucoma" the disease causes the eye to create visual obstructions that can't be fixed and raise the eye's pressure to dangerous levels. (I didn't know our eyes have pressure but they do.) When I went in and was being tested, the doctor was greatly alarmed: normal eye pressure is 10-20 mmHg; mine was over 60. After checking the pressure three times he gave me medication and made me wait an hour to see if it helped. He was getting ready to conduct emergency eye surgery if it didn't.
Fortunately the medication worked and my eye pressure lowered. Bad news is damage to my left eye (which I thought was a cataract that could be fixed) is irreversible. That eye is now gone; its vision is permanently destroyed. We fighting to save the right eye from being lost the same way.
I believe and hope we'll win this battle. If so, I'll be able to salvage some of my future plans. I can't imagine life being totally blind. I can live with one eye; I can't conceive of living with no eyes. Vision is essential to almost everything we do and necessary for most activities and pleasures.
I want to ride my motorcycles, walk in nature, take photographs and appreciate fine art. I want to read great books and think about ideas. I want to be free and mobile, able to visit friends and travel. At bare minimum I want to look into people's faces and see if they're smiling or frowning. I don't want to be pitied or ignored.
If you have empathy and want to offer support, now is the time. I'm in the battle of my life. I've never felt as threatened and sad.
I am so sorry to hear about your condition. The senses we have, they put us in the world as you illude to.
ReplyDeleteWhen changes happen to us, rather than by us, it is hard, feeling cruel, even. We may need time to mourn for what we had, coming to terms with what was and now is. It is okay to feel what you feel. There is no right way to grieve. I will add, that people are amazingly resilient and even after life changing events, their happiness changes to fit their circumstances. Plus, there is always hope. I will not lie to you that a magical cure is around the corner, but science is capable of incredible things.
There is nothing I can write here that will make the pain and the worry go away. The best I can offer is a friendly ear if you wish to talk to a stranger on the Internet.
Wishing you good luck wherever this takes you 💜
Thanks, pal. Wise words that resonate. Yes, it's the change that's disturbing me and the analogy to death is appropriate. I'm mourning the death of the future I expected. Your analysis is spot-on. I appreciate you thoughtful comment.
DeleteYou are very welcome, my dear. If you feel the need to talk, react, or even rant, my inbox is always open.
DeleteTake care. X
Oh Ally, I'm so sorry. I'm thinking of you and hoping that with answers and treatment you can keep your remaining sight.
ReplyDeleteIt's a very frightening thing when your body does things unexpected that change the trajectory of your life, but Lynn is right. There are new advances every day in medical science, but also a whole host of people out here who love you and will be here if you need us. Never lose your adventurous spirit, we'll help you look at the world in new ways.
Thank you, Megan. You're one of my closest friends and have already, repeatedly lifted me up when I was down. I may need more support from friends than I was expecting in the future. It's hard for me to ask for help; my instinct is to give, not take. But when you can't see the salt shaker, you need to seek assistance. :)
DeleteAsking for help is definitely one of the hardest things when you've been so independent for so long. It's hard, even emotionally, to lean on others.
DeleteOne thing I have learned in the last few years is that many people are content to take, but many are also content to share. It's sharing that gets us through.
So sorry to hear about your eye issues Ally. I so wish there was something we could all do to help you get the sight back in your left eye.
ReplyDeleteI will however keep my fingers crossed for you and dearly hope and pray that you're able to win the battle with your right eye so you're able to carry on doing some of the things that you truly love.
It's fully understandable that you're feeling threatened and sad given your situation. I'm always here Ally if you need someone to chat with x
So wish there was more I could say or do.
Take care Ally, sincere Best Wishes Lotte x
Thank you, Lotte. Simply feeling my friends care (as you are doing) has a huge impact. At times like this we feel adrift in an insensitive universe, unmoored from the reality we once trusted. Being reassured that others care has a magnified effect and I'll never forget it. Thank you.
DeleteOh, Ally, I am so saddened and devastated for the loss of your eyesight in one eye, and that Definitely Not Good News about your eyesight in general. This doesn't feel fair! It's just f**king wrong - you don't deserve this. Apparently I am in the Anger stage, here.
ReplyDeleteAs Lynn said above, you need to take the time to talk this out, process this and deal with your grief, as loss of sight IS like a death. This is not the end - there are ways for you to still enjoy being on a motorcycle or to interact with art (in a more tactile way, for example). I've been watching my mom deal with these types of losses as her own disease progresses. "It's okay to let go of things," she says, "As long as you make changes to do new things." It's an adjustment, a HUGE one, for you. Focusing on what you CAN do vs. what you can't do.
I'm here - you have my number, you have my email, hon. *hug*
Thank you, Sheila. I feel too young and vital to be forced to give up something as basic as sight but here I am. I passed through and shared your anger stage. Raging didn't change anything or help me. And I'm not finding alternatives to vision. I'm at a loss here, literally and figuratively, and hoping friends can help me forward. Thank you for your support.
DeleteOh Ally!!!!! I'm sending you all my love. It's, excuse my language, absolutely crap that you are facing this situation!!! It seems unbelievable. I'm so sad for you. You are one of the most beautiful-hearted people I know and I wish I could come right over and give you a big hug. I know there's nothing I can say right now to help but know that I care and I will pray for you, my friend, and if there is anything I can do, please do tell me.
ReplyDeletexxxxxx
Thank you, Kezzie. Yes, it's unbelievable; when I wake up in the morning I think it was a bad dream. Then I open my eyes and see it wasn't. Aaarrrggghhh. I appreciate your compassionate words which are exactly what helps. Feeling my friends care makes up for the universe's utter insensitivity to my needs. You remind me there's a point to staying around. Thank you for that.
DeleteThank you, Karen. That's kind of you. What people who aren't going through this don't understand is you feel like the universe has turned its back on you; that your life has been rendered meaningless. So when nice people like you push back against that and say simply, "We care," it means a tremendous amount. The impact is magnified to a big degree. Good luck to you.
ReplyDeleteSorry to hear about the bad news. All I can say is to follow your doctor's advice, you still have one eye and a long life to live after retirement.
ReplyDeleteThanks, buddy. You're right.
DeleteDear Ally,
ReplyDeleteThis whole thing is terribly unfair and I am so so sorry to hear about it. It really saddens me to know that something like this is happening to a good, kind, thoughtful and stylish person like you. However, based on everything I know about you, I am confident that you will power through this insanely difficult time and one way or another, you will come out on top eventually. No matter what, do not doubt yourself, and stay strong! I'm thinking of you and sending only the best vibes over the Atlantic.
Thank you, pal. i hope you're right.
DeleteI'm terribly sorry, Ally. If you wish (but only if you wish - I respect your feelings) we will pray for you. Rev. Ed Trevors is a very liberal Anglican priest. (An example - agnostics and atheists feel welcome!) By 'pray' often means that you will find the right doctor. In any case, I wish you nothing but the best.
ReplyDeleteEmily I can use ALL the help I can get. So thank you.
DeleteI am so sorry to hear this. Sending positive energy and best wishes to you!
DeleteThank you. I appreciate that.
DeleteOh gosh Ally, life is playing a cruel trick on you. I know the disease. As we are getting older, we all get something nasty, but yours is really nasty. I so hope they can save you other eye. You have so much time left to enjoy life.
ReplyDeleteHang in there.
Greetje
Thank you, Greetje. I was thinking the same thing.
DeleteUpon visiting your blog after a long absence, I didn’t expect to read such devastating news. Blindness is one of my worst nightmares, for the same reasons as you. I will hope and pray for the best, and for that left eye to be saved from further damage.
ReplyDelete