Thursday, July 11, 2019

My journey into scleral lenses - part 1 - up to present day

I'm recording this because I'm hopeful that I'll be able to provide something I have struggled to find as I've embarked on this journey - a user story, some honest feedback and some useful hints and tips. 

Part 1 - My history with Keratoconus

Diagnosis & Hard Lenses
I have keratoconus.  An ophthalmologist suspected  I had this when I was about 12.  But didn't mention it until I went back 2 years later and said 'ah yes, as I suspected 2 years ago, you have keratoconus".  I kind of wish he'd shared his suspicions earlier or at least insisted I return sooner than 2 years later.  But that's several decades ago now!  I don't actually recall when I started wearing RGP (rigid gas permeable) - or Hard lenses, but I do remember buying new glasses frames during a school trip at about 15, and then losing my right hard lens on another school trip just before I turned 17 (end of 1991) - so somewhere around those ages, about 27+ years ago now.  I went through a variety of lenses as the technology changed, including having to have a tiny hole pierced in my lens to allow for tear flow, and eventually a piggy back system for my left eye - more on that below. 

Right eye transplant
I had a corneal transplant in my right eye in 1997 - I have a vague recollection that some point prior to that we (my optometrist & I) had largely given up on my ungrafted right eye being useful and with glasses I only had a prescription in my left eye.  These days, it is my right eye that does all the work and my ungrafted left eye gets enough correction to give me distance judgement, but no focal point.  Without lenses even basic objects are unrecognisable.  Even basic shapes for that matter!

Current Day System & Challenges
My most recent setup has been a piggy back system on my left eye, with a soft lens of minimal power to act as a bandage and protect my very pointy and very thin cornea (which also has scar tissue from a hydrops event), and a Rose-K (I believe!) lens on top to do as much vision correction and distortion reduction as possible.  And a rose-k (again, I believe) in my right eye - which is one that Paul Rose himself made me for back when I lived in Hamilton - early 2000s!!!  Any new lenses made for that eye just don't seem to work for me, resulting in severe ghosting to the point of converging double vision, or awful starring in the outer region of my vision - like a halo of sun rays surrounding a clearer center - not workable! 

I'm comfortable with this system, though I have become very adept at catching falling lenses, especially out of my left eye, and if I cry with them in.  As mentioned, that left eye is very pointy, the bandage lens can't help but bubble at the edges, and the hard lens is basically teetering on the tip - so instability is to be expected.

Why I'm exploring options
The last time I had a "Oh my word!!! THAT'S what the world looks like in focus!!!" moment was when I lived in Hamilton.  I have good enough vision, however, over the last couple or so years, I have noticed that the fine work I do - book binding, zen tangling, calligraphy, drawing - have all become difficult to sometimes just too hard due to lack of ability to see the fine details.  Even reading the computer screen at work had become more taxing than I let myself admit to, and if I had a lot to read I would typically print and read from paper.  And I do remember that feeling of having a new lens in my eye and discovering the richness of sharp lines and crisp shapes.  And I miss that.  And I work in technology, so I actually have pretty high expectations on what technology ought to be able to help us with these days (sadly I'm frequently disappointed and horrified, but that's another story entirely).  Fortunately my optometrist was keen to get creative and see what else we could do to problem-solve and hopefully improve my vision.

Next options include having my left eye grafted - something my optometrist has used the term "game-changer" about, and that does make it mighty tempting, but part of me still feels a gut instinct to keep as much of my own cellular material as I possibly can for as long as I possibly can.

I've had a consultation with a surgeon this year regarding grafting my left eye, but he also enlightened me on a bunch of things I never knew about my right eye -

  • my graft is off center - so if/when I need a 2nd graft in that eye, there's not a whole host of room at the bottom to widen the graft site
  • there is an option to surgically thin parts of that graft, which apparently would make lens fitting easier
  • my native cornea at the base of the graft is showing continued progress of the characteristic keratoconus thinning and buckling - which I suspect is why I get that halo of rays at the outside of my vision with some lenses (and possibly even with the current one sometimes, but I think I put it down to tiredness or dry eyes.
The other option, not to be considered as an either/or to grafting, is something I thought I'd have to go overseas for, but fortunately now I only need go as far as Christchurch - which I love, so win win!  And that is to have a laser-fit custom lens made.  What I hadn't realised, is that this is a fitting for a scleral lens, not just a more accurate approach to fitting what I'm already using. (Maybe it is that too, but I'm unaware of that). 

In part 2 I'll explain what a scleral lens is in comparison to my current system, and how the fitting process went, and my initial (actually current, not just initial!) challenges - which I hope to have hints for in the weeks to come!!! For my own sanity as much as your edification. :D

Friday, May 15, 2015

Wisdom from a friend

This helped today and I don't want to lose it in my myriad media repositories.

...."sometimes the hurt you receive is not reflective of the person you are but more so an indication of how much energy you're investing in the act of trusting or learning to."

Thank you dear friend. This is freeing insight.

Friday, July 12, 2013

The Door

Imagine you stand before a door, a door that you very deeply yearn  to see beyond, a door that you sense holds behind it an entire world of opportunities, of freedom, of refreshment, of life itself.  But you’re not sure.  The sense is there, but certainty is not.  Do you knock? Or do you linger, hoping for courage, or perhaps for assurance; but then, you know assurance for your hesitation will lead only to a new caution, a new thought that holds you back.  Yet still you linger, and your longing gnaws at you silently, but your ifs, buts, maybes and anxieties clamour in your head, and the silent gnawing seems to fade to a dull ache.

Breathe a moment.  Consider where you stand.  Feel your heart beat in your chest.  Listen to the flow of your breath. Be still.

Look again, as you stand before the door.  And see the tiny seed of courage, of hope, of faith in your heart. It is tiny, but it is enough.  You reach forward to knock, still tentative, but you reach forward, anticipating that after you knock you will hear the sound of muted footsteps as the occupant approaches to open the door.  But, there is no nervous waiting, no time for anxiety as your mind roars “run away, it was a mistake, there’ll be no welcome for me”.  No. As your tightly clenched fist falls upon the surface before you, it lands, not to make a hollow doleful tone, but rather on warmth, on a yielding, welcoming chest, and you feel the love in the heart beneath your fingers, as your hand is covered by that of the one who welcomes you. You are greeted, before you’ve even completed the act of knocking, by the warm, gentle, welcoming and loving embrace of the Father.  

From the tiniest grain of faith, as you reach to knock, in that instant He is there. In that instant you stand in His embrace. Cherished, beloved, safe.

Little did you realise, as you approached to knock, that He stands waiting, knocking on the door of your heart, anticipating your faith, and longing for you to know the unconditional love he has always had for you, and always will.

Saturday, May 25, 2013

Not Made for Here

I’m not convinced I’m made for this place.  It hurts.  When I live as I believe I am best to live, it really  hurts. I think I scare people.  I think my friends find me hard work and far too intense. Yes, I am intense.  But no longer will I think of myself as being too intense. I am as intense as I am. Yes, I insist on living incredibly authentically, with belligerent commitment to integrity, honesty and loving & connecting deeply.  This is not normal. Or at least, it is not usual.  And it’s lonely.  I asked a trusted confidante the other day if this was an unhealthy way to think. She reminded me of the bell curve.  I’m still normal, but it seems I sit at a tail on many things, and thus, yes, it is lonely.  That’s not an arrogant statement, not in the slightest, I say it with the greatest humility and a deep desire to understand why I find this place so hard, why I seem to face much opposition to simply being me.  Perhaps opposition is too active a word.  Me being me can tend to make people uncomfortable.  However, how else do we explore new possibilities unless we are challenged, unless we move out of our comfort zones? Me causing discomfort is not something I want to shy away from.  It’s not something I actively seek to do – my desire is not to hurt or cause pain, but I do like to challenge and provoke and open windows to new thoughts and possibilities and new ways of thinking and seeing.  And let’s face it, new things, whilst exciting, still involve change, and change is rarely comfortable.

I love too deeply for most people’s comfort; I do things to try and help people discover they are as wonderful as I see them to be, and I do it relentlessly.  Because being told “I love you” in an instant of time does not sustain you.  Love is an ongoing action.  We all need to hear and feel and receive active love. Not occasionally, but consistently. So yes, I’ll send encouraging, loving texts daily, yes, I’ll remind you that are you splendid and wonderful with great frequency, yes, i will hold on even when I am hurting and bleeding inside, because I know most of you don’t know how wonderful you are.  Not that I necessarily know that about myself, but I know it a lot better now than I used to. Today I know my God gazes on me with the deepest and most intense love.  My intensity is but a whisper compared to the way He loves me, and you.  My desired depth of connection is but an arcing circuit compared to how deeply He longs to be connected to me, and you. This at least I know.  Human love I find a little more fleeting, a little more difficult to trust and hold on to, but trust I do, though it pains me. Yes, I panic too.  Yes, sometimes the waves seem too big and I lose sight of my God and I cry out in desperation to be saved.  Thankfully, He is unflinchingly faithful and always ready to reach out His hand when I falter.  For my friends, for those I love, my stumblings are harder to understand, harder to weather.  I trust my God has them too.  I trust that somehow He will sustain their love for me through my intensity and my clinging and my soft, sensitive and often bloody heart wounds. 

I’m not sure I’m made for this place.  But I am grateful for those who walk by my side, near and far. Those who love me through my stumbling, through my elations, through my laughter and through my tears.  Those for whom I cry anguished tears and pray desperate prayers as I long for you to know how wonderfully splendid you are, that you might be free to love, to live abundantly, joyfully and playfully.  Thank you for loving me and holding on even when I’m hard to be with, even when I’m messy and panicking and uncomfortable for you to be with.  You keep me anchored. Thank God for you.

Friday, February 3, 2012

Love & Grace and Forgiveness

My obsession with love and grace continues.  As I remarked on facebook the other day to those who are wondering if I've completely weirded out - "there simply can't be too much love in the world! So I'm sharing it. :)"

On the vulnerability of loving...

When you care about someone, when you dare to love a person (and I'm talking the love of friendship here, not just 'significant other'), there is a cost involved.  You cannot love without making yourself vulnerable.  For in loving, you have opened your heart to a person.  Which means you have trusted them.  You have removed your protections.  For you can only love from a place of giving, of vulnerability.  Otherwise I would challenge if it is really love.  So the person you love has easy access to the soft, fleshy parts of your heart.  And we are all human, with our own foibles, our own mountains to climb, our own challenges, our own failings, strengths, weaknesses, blindspots.  So inevitably, the one you love will hurt you.  Most often it will not be intentional, and the ability to forgive, to show them grace, will be called upon.  It is well worth having people in your life who you love and who you have honoured by trusting them enough to allow them to hurt you.  Embrace that. And be ready and willing to forgive when the place they are in results in your own pain.  Because as they can hurt you, so too can you hurt them.  Grace.  It is a wonderful thing.  Somehow I don't think you can truly love without grace.  That perhaps is a thought for another post.

Tuesday, December 13, 2011


Oh my goodness, I'm so freaking excited I'm fair bouncing!!! I think I need to leave work really quickly because I'm beginning to scare people! 

I am soooo glad I finally decided I'd regret not going to the Foo Fighters concert tonight (with the incredible bonus of Tenacious D!)  Bounce bounce bounce! 

(There's no one to bounce to, so I'm blogging it, deal with it blogosphere).

Ok, way too early, but I'm going to leave anyway.  Yay yay yay! Wheeeeeee!  (Grief, I'm like a kid in snow for the first time).

Wednesday, December 7, 2011

Waxing lyrical on love again

I'm in one of those "I really want to write" moods.  But all the things I want to write about are perhaps not for public consumption.  Private musings on the journey of life, of love, of God, of growth.

There was a lovely quote an acquaintance posted on her Facebook page the other day - "It's going to hurt anyway. So if you're going to love, give it everything.".  That, dear friends, is a motto to live by. And, I think sometimes we read or think about love and we confine thoughts of love to 'significant' others in our lives.  Our partners, our parents, our children, our siblings, our most cherished friends, our source of being.  But love is bigger than that, if you'll but allow it to be.  Love can (and by definition ought to!) extend to the random stranger on the street who looks so troubled, until they receive your heartfelt smile or greeting and they light up (surely you've been on the receiving end of this too? I certainly have), or to the workmate who is having an appalling day and you gift them with a genuine comment of concern, care, or an action of practical support.  Or to the person you observe struggling at the supermarket and you abandon your own fear of standing out to offer them help, or a comment of sympathy. Or the acquaintance (or again colleague) who you can see is having a rough time and you find the courage to be vulnerable and actively offer them your ear, or your support, or at the very least, your understanding.  And can I say, it is sometimes scarey to reach out to someone you wouldn't normally reach out to, it can raise all your own insecurities, your vulnerability, but really, is that not the mandate of love? To be bigger than your insecurities, to be bolder than your fears, to be open to receive love and in turn to be willing to give it.  And the more you offer it, the more you find you have in your own life - to draw on yourself, and also to give out to others.  

And YES - loving really does hurt!  Empathy is not a passive point of view, it is an active identifying with people and allowing your heart to feel what they feel.  That is NOT a comfortable thing!  But is your ultimate goal to be comfortable?  It certainly isn't mine.  Yes, I want to live with peace of mind, but I also value growth and I'm here for the journey, to truly experience life.  To experience love.  As a receiver, but also abundantly as a giver.   It's a poignant ache, but what a way to know you are alive.  Of course, love is not just painful, it is beautiful, but I do think an emotion as strong as love is always a mix of pleasure and pain - of ache and of joy, of vulnerability and of elation.  Embrace it.  Dare to feel.  Risk love.