Tag: keratoconus

Seeing Life Differently: Never Take Life or Your Vision for Granted

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Life is complex for most people. If you are fortunate and grateful to reach my age you never take life or anything for granted. You live, truly live life to the best of your ability.

Seeing Change as an Adventure

When I first started having vision issues, I felt like I was stumbling through a foggy maze. It was scary, frustrating, and honestly, pretty overwhelming. I remember coming back from the ophthalmologist and thinking if I eventually need a seeing-eye dog, so be it. The reality of that is something different.

Over time, I realized that this new chapter wasn’t the end of my story—it was just a plot twist. Embracing change is what I attempt to do on a daily basis. I have keratoconus – specifically pellucid marginal degeneration. I also have herpes eye disease , and cataracts and have had posterior vitreous detachments in both eyes (very common in those of us past 60 years of age).

I wear sclerals which have been life-changing for me, glasses do not work anymore (except for readers). I will eventually need a corneal transplant, but for now, if the eye herpes stays at bay my corneas will be ok.

What Has Helped Me

I have always had an optimistic mindset, so that has helped tremendously, but connecting with others who also have the same eye condition has really helped. I belong to an online support group for keratoconus and have a good friend with the exact same eye condition. You are not alone. It seems there is a support group for almost every condition out there. Of course, having a great optometrist and an ophthalmologist helps. I am fortunate to have both of those.

Be My Eyes  Be My AI

If you haven’t heard of it, the BE MY EYES app, Be My AI is a must.

As an optimist, I am hopeful that technology will help us live our best life. 

Who knows what is next? We live in a different world than we did ten years ago. Hope is what keeps me going every day. If you know of any great resources that can assist people who are blind or have low vision feel free to share them.

Lean on Your People

Here’s the thing: you don’t have to go through this journey alone. Seriously, reach out to your friends, your family, and those who get you. As a psychologist, I know it is a strength to reach out. We all need support at some time in our lives.

It’s amazing how much love and support you’ll find when you let people in.

Finding Silver Linings

Okay, let’s keep it real. Losing your sight sucks. There’s no sugarcoating it. But you know what? Even in the darkest moments, there’s a flicker of light. Maybe it’s finally learning to slow down and savor life’s simple pleasures. Or discovering a newfound appreciation for the beauty of sound, touch, and smell. It’s all about finding those silver linings and holding onto them for dear life. Sometimes it’s easier said than done, but if you take each day and savour as many moments as possible, it makes life easier.

Losing your sight might feel like the end of the world for you, and no one truly understands unless they have been through it in some form or another, but trust me, you can cope and live a fulfilling life no matter what life throws at you.

I am so grateful that I wake up each day and can embrace the good around me and hope you too can connect with others that help make life better. 

So as you navigate the twists and turns of life, seize as many moments as possible, love those around you, spend as much time with friends and family that lift you up as you can and never take your life or your vision for granted.

Optimism is Opportunity

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Art by @sspellmancann

I am an optimist and for the most part it seems I have always been that way. It is possible that 25-35% of optimistic traits may be inherited. William Chopik PhD. associate professor of psychology and director of the Close Relationships Lab at Michigan State University found in his twin studies that 25% of optimism is inherited. That said environmental factors do indeed matter. 

So what have I done in my life to remain optimistic?

  1. I work hard at starting my day in a positive way with a positive mindset. It’s not always easy, but living life finding the many ways to be more positive matters to me.
  2. Friendships are essential to my well being. I mostly surround myself with people who look on the brighter side of life.
  3. I recognize that what I say and do is up to me.
  4. I accept and feel my emotions as much as possible. Reframing and refocusing when necessary. I use self-talk to shift my attitude when needed.
  5. I support others paying it forward as often as possible. I reach out for support to assist me in life.
  6. I recognize and focus on all the things I am grateful for on a regular basis.
  7. I focus on living each day to the fullest as best I can. Truly living life one day at a time makes life so much easier allowing me to let go of so many things.
  8. I don’t dwell on the negative possibilities, I find ways to see the positive in most situations.
  9. I appreciate the people around me and let them know. I take the time to write a post card or letter, send a note or tell someones boss what a difference they make as often as possible.
  10. I hang on to hope at every given moment.

Has life always been easy? No, like most people I have experienced many challenges of life, but I choose to find ways to look for what I can learn from every experience. 

I remember when I was first diagnosed with keratoconus and my ophthalmologist at the time said I could go blind (a more pessimistic view as there are so many developments to assist people with pellucid marginal degeneration as I was later diagnosed with and could be more in the future) and I thought to myself well if I need a seeing eye dog and that’s the worst that happens I can live with that. That was over ten years ago and I am not blind. I have had many eye challenges. I had a year where I could not drive, I have had many moments where seeing was a real challenge, but for today I can see well with sclerals. I know I will need a corneal transplant, but life is full of twists and turns and I choose to find ways to make the most of life.

If you want to find out where you fit on the optimism scale you can check out the LOT- R. What is the Life Orientation Test and How to Use It? (LOT-R)

My wish for all of you in this ever changing world is that you cultivate a little more optimism in your life so that you have an opportunity to live longer and more positively right up to the end no matter what life challenges you have to face.

Just for today I plan on heading for the beach no matter how sunny it is.

These Eyes Have Many Stories

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Photo by Michael Morse on Pexels.com

This year has been challenging for so many reasons, but one personal reason is the loss of my eyesight and independence.

I started the year off great and then slowly I started noticing my vision was becoming blurry. More blurry than usual. I have pellucid marginal degeneration. In November of 2017 I had crosslinking and limited PRK. Afterwards I had amazing vision even without glasses for a year, Then I needed glasses again which was no big deal, but in December of 2020 , I noticed something was wrong.

My optometrist who I respected moved away and my surgeon and opthamologist was no longer seeing patients. So I had to find a new optometrist and opthamologist, no easy feat during covid.

Long story short over two months later, I got in to see a new opthamologist who diagnosed me with eye herpes. Who knew you could get herpes in your eyes? Not me or most people I knew. So began the treatments.

Then another twist I had to go to Nova Scotia unexpectedly and find another opthamologist and optometrist who could treat me there. Luckily that all worked out. I have been unable to drive since January and to say that has been difficult for me is an understatement.

Fast forward to today and I am getting closer and closer to better vision. I just got fitted for sclerals and I am feeling very hopeful, not only that I will see better ,but that I will drive and get my independence back.

I don’t always make a big deal about my vision loss so often people forget and think I can see things that I can’t like menus in fast food places,misspelling words in emails. I worked all throughout this time and luckily I work with very compassionate people.

I sometimes feel overwhelmed in big stores because of the lights and can’t find what I am looking for. Of course when I ask for help it looks like I can see so instead of telling my story I just manage as best as possible.

I continue to wear my glasses for now even though they don’t help one little bit , I just feel more comfortable with them on. It’s hard to admit to myself that I am visually impaired, but it is even more difficult to admit to others. I cannot see people or things at a distance and actually you have to be pretty close up for me to recognize you these days.

I end up paying for a lot of things related to my sight because it is not covered by my insurance. I am hoping in the future this is not so.

I am hopeful that this invisible disability I have will be more understood in time.. It is my responsibility to try and educate others as best as I can and do what I can to advocate for others.

Loss of sight affects more than 1.5 million Canadians. Awareness around the issue is still relatively small. You’ve got to speak up if you want to be heard. Not that doing so is easy, but I will do my part. My eyes matter and so do yours. I am hopeful that I will gain new eye sight and independence in the near future. I am hopeful technology will change things for me in my lifetime (it already has) and I know it will for the youth that are newly diagnosed with keratoconus and corneal related issues.

There is a wonderful website I have found during this time, hadley edu and if you need assistance with your vision they are amazing. More websites should use their contrast feature. Check it out , it is so helpful.

I remain very optimistic even though I cannot presently see clearly.

These eyes they have many stories to tell.Feel free to just ask me , and you may start to see things differently yourself.

I Can See Clearly Now

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Often times to fully understand what someone else might feel we have to go through the similar experience.  Sometimes it just takes for us to go through an experience that is tough to have compassion for others who have experienced a painful situation. Sometimes we just don’t get it , but we can still have empathy and be kind and helpful to others.

Over the past three months I have been recovering from surgery on my eyes. I had crosslinking and limited PRK. I have keratoconus.

I think I took my eyesight for granted even though I had keratoconus. After surgery I had limited eye vision. I could not drive for almost three months even though I was legally able to . I knew I was a danger on the road.

I had a blind day which really scared me. I had many days where my vision was not good. I needed adaptations to assist me to see. A big screen , huge font and even then some days where I could not see well even with adaptations.

Today , I feel extremely happy and emotional. Sometimes when I am happy I cry. Today I feel like doing a lot of that. I read and enjoyed reading my first book yesterday in a long, long time. I love books. I love reading them. I love feeling them in my hands as I savour the words. Books have healed me and today I feel like I am healing again!

I don’t think I ‘ll be the same. I could see , then I couldn’t and now I see again. I am changed, on a new journey in a new chapter of my life. I know you don’t really know how I feel. I don’t expect you to. I wish I had the words to explain.

Today, I can see clearly and I think there are a few things I need to see more clearly so I am going to open my eyes bigger than they have ever been before and see , yes see really others and myself more clearly. I will be open to many new wonders that maybe I took for granted before.

I am overwhelmed with emotion today and that is OK . I often don’t let people in on my deepest emotions, but just for today I am because if you can relate to this it may help you too. Thanks to all the people who have helped me through this . You know who you are. We all need a little help now and then.

I can see clearly now and I hope it makes me more open to new experiences , more open to the recovery of others, more open to life itself.

Focusing On What I Can Do … Instead Of What I Can’t

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This is my first blog post in a long time, I had eye surgery ( crosslinking  plus limited PRK I have keratoconus ) on November 23rd and I realized I have been focussing way too much on what I can’t do instead of what I can. So as 2018 begins, I am going to focus on what I can do instead of what I can’t!

I can ask for help when I need it ( this is so hard for a helper especially for me who is used to helping others).

I can learn to use the accessibility keys on my computer and phone.

I can write more , paint more, sing more dance more , be more ...

I can exercise more, eat healthier more, do more …

I can live more and spend more time focussing on what I can do!!!!!!!!

I can be kinder , more loving , more helpful!

I can elicit the help of others to do more of what I want to do and can do.

I need to stop that voice in my head that says I can’t drive ( for now) , I can’t see as well as I would like ( for now) , I can’t …  I can’t …

Oh yes I can, I just need to figure out how and do it. Just like how I figured out how to fix my computer at school and at home with bigger fonts. At work I asked for help, at home I googled how for my Mac system and did it! I asked for a bigger screen at work and can now easily use the scroll to increase font size to see my email. I am using the accessibility keys on my phone and computer to help me do lots of things. I can and do access online support through a keratoconus Facebook group. I am very grateful . This group and my friends and family have helped me a tremendous amount in my recovery process.

This is the first time in my life that I have lost my independence , but with help and support I can and will do lots of things … sometimes I just have to ask (even when it isn’t easy to do).

There are so many things I can do if I stay focussed on the I can! I can choose healthier options psychologically and physically. Not only can I … I will!