We always carry on, and sometimes it gets easier.

First of all, I want to thank each and every one of you for all of your support. It seems so strange to think about how many people took the time to read it or share it on Facebook – I’ve never had that happen with such a personal post before and I really appreciate the response.

By Jeremy Taylor
Things have been easier since my last post. Of course they aren’t perfectly okay, but I’ve been coping really, really well. I feel much more hopeful about things than I have since everything happened. We’ve been waiting to hear back from my regular surgeon for the past two days but were told to call him today if he hadn’t gotten back to us yet. I’m really hoping that he’s taking the time to read thoroughly through my novel-sized records of eye history so that he can figure out what the best course of action is. Besides all of the surgeries themselves there’s so many incidents here and there throughout the past 10 years or so that could have an impact on how things need to be handled. I’m a bit nervous about what he has to say, but we’re basically waiting to find out whether or not we need to head to Vancouver to see him now, or if we could maybe just wait until it fully lets go.

Both of the above options have their pros and cons. While I want nothing more than to just wait and watch it for now, it’s a lot harder when it becomes an emergency and everything now needs to be done immediately, instead of in a way where things can be planned out – especially since we are 8 hours away and can’t drive there ourselves. I have to go to Vancouver for my cardiology appointments in March and it would be best if somehow the lens managed to hang on until then. To be honest, what I really hope is that it’ll just hang on like this forever. I know that’s very unlikely, especially with my history, but it’s still not impossible, and it’s the only thing that I’m able to grasp at right now.

Under normal circumstances the new visual change would be really disheartening, but I can honestly say that I could live like this for the rest of my life – and to be honest, I’d be incredibly grateful to do so at this point. My brain is adjusting to the vision change surprisingly well – I realized the night before last that I had been able to spend the entire day without using my eye patch. And I did so again yesterday. I’ve even been drawing sometimes, which makes me happier than I could ever say. The thought of losing that incredibly important piece of my life terrifies me more than almost anything, and to have it right now, when I wasn’t sure that I would, has meant a lot.

It also puts my mind at ease to know that my usual ophthalmologist is at his practice and in the country right now, because he’s often gone for weeks or more and we weren’t sure if we’d be dealing with him or someone we’ve never met. I do worry that he’s going to be leaving again soon and that he’ll want us to go down there to have things looked at regardless of whether or not he’ll be doing surgery at this point. I can understand why he would want to do that though, if he knows that he’ll be out of the country soon I imagine that he would want to check on things himself. Let’s just hope that’s not going to be a problem. It would be so, so much easier if we lived closer. I know it’s not the end of the world, but the travel and being away from home is definitely hard financially, emotionally and physically, on my mom and I both.

My family doctor phoned me today, wondering what was going on with my eye and wanting us to let them know as soon as we’ve talked to the specialist. It hadn’t even crossed my mind to phone and let her know what was going on and I was surprised to hear from her. Usually when anything happens with my eyes my other family doctors haven’t been involved at all. But, she told me to let them know immediately if I needed to make an appointment with them and that they’d fit me in whenever. I’m glad that they phoned, it’ll be good to be able to talk through everything with her and let her know a bit about what we might be looking at. Often when you hear that someone might need eye surgery you assume that it’s no big deal, and that is the way the first 5 were for me too. The pain was really minimal, to the point that I just remember the stitches being a little sore, and I healed unbelievably quickly. But the last two operations were riddled with complication after complication, and more pain than all of the other ones put together. I took 6 months to heal and my vision was never the same after. All in all, I really appreciate her support and interest in what’s going on, it makes me feel a lot more secure with everything.

That’s about all that I have to update everyone on for now. Again, I want to thank all of you for your incredible support and kind words. It makes such a difference in my life and makes me feel so much less alone. I know that I’m unbelievably lucky for it and to also have such a caring supportive mom by my side.

Big hugs to you all. xx
– Katie

It’s hard to go through it again.

On Saturday something fairly heartbreaking happened to me medically. I wasn’t sure whether to post anything about it until I have some more answers, but I found it fairly therapeutic to vent about at the time and would like to post it. This is from the day that it happened. I’m sorry that it’s not the most positive of posts, but this has been really hard and it’s how I sincerely feel about what’s been happening.

It’s 5:30 am when she decides that she can’t fall back asleep anymore. She finally got a decent night’s sleep though, so she’s happy to get up today. She turns on the light and immediately realizes that something is wrong – out of the corner of her eye she notices the edge of her lens implant has come largely into view. Every time she moves her eye her entire visual field bounces and distorts along with it. Her heart rate shoots up and all she can think about is how badly she doesn’t want to go through this again. She’s been here before. She knows how this works and largely what’s coming next.

The day ahead of her now consists of ER and emergency optometry visits.  And she knows that the next few days will be filled with wait and worry. These are the things that she must now face, but it’s the uncertainties that frighten her the most. She will need surgery again, that is all but guaranteed and she knows that this time they may not be able to fix her eye. They have to be smart about this decision because anything they do to her eyes now would result in further damage – her tissue is weak to begin with and it’s been significantly further weakened with every lens subluxation she’s suffered. She’s only 21 and her vision is the most important thing in the world to her – and now the future of it is up in the air yet again. Every option they have is filled with uncertainty and potentially devastating consequences. She hates to be afraid but she is. The last two eye surgeries she had were filled with so many complications. They were far more painful than anything else she’s been through and instead of taking a month or two to heal it took 6 months. Her vision hasn’t been the same since – never nearly as good. But she’d give anything to have that vision back right now.

On Monday they will begin to put a plan into place of when she will likely need surgery. It would be so much easier if she didn’t have to travel so far for them, and during the holidays too. The surgeon that she’s had since she was 4 might not even be in the country right now, and she fears ending up with someone different with her complicated disorder and history. Her other eye concerns her too – if history repeats itself the lens in this eye could also dislocate within the next few months, just as it did last time. She tries not to dwell on those what ifs right now, they do her no good. So instead she puts one foot in front of the other, no matter how desperately she wishes she didn’t have to. She’s thankful that she’s not going through it alone and has her mom by her side. She’s coping fairly well, but it’s hard not to think about because it’s in her vision every second of the day reminding her. Eventually she starts covering it with a patch – it aches and makes her dizzy and the patch eases those issues and lets her think about something else.

The lens is still hanging on for now – last time it took a week to fully let go. She’s not even sure what she wants at this point – part of her just wants to get it over with, the other part of her is hoping beyond hope that it keeps hanging on just a little while longer. She worries that leaving the lens to pull through the tissue where it’s still attached is a bad thing to do and will cause a lot more damage in the end. But, she knows that her surgeon wouldn’t risk operating on her while it’s still attached. There are no good options, she feels suspended and numb, like she fell asleep and is just now waiting to wake back up. If only she could.