The Lighter Side of: Nearsightedness

Who knew that being nearsighted could be ultimately beneficial in the realm of Macular Degeneration?

As you may know, I was diagnosed with Macular Degeneration when I was 21 years old. Lucky for me, the disease has progressed slowly enough.
With that said, if you look at my OCT scans from 2007 to my scans taken a month or so ago, the differences are apparent.

I went to see my Ophthalmologist recently, just for a follow-up appointment, and I wanted to ask him a particular question.
I have always been near-sighted. I cannot see anything clearly without contacts or glasses unless it is directly in front of my face. My prescriptions are -4 and -4.5, with Astigmatism in both eyes, PLUS the AMD.
I really don't enjoy wearing glasses. I tend to wear them at home or when I am going to appointments, so (naturally) I feel kind of sloppy when I wear them outside the house. Putting in contacts just makes me feel more put-together. I know that it is a mind-over-matter thing, but I can't quite shake it.
Now, with Macular Degeneration, most people lose their central vision but are able to keep some or all peripheral vision. This is a huge advantage. It is still legal blindness, but there is a lot we can see with only our peripheral vision. However, the idea of me being legally blind but still having to wear *and pay for* contacts and glasses had me a little irked. So I asked my specialist if lasik could be an option for me.

Careful not to dissuade me or offer any specific opinions, what was expressed is that nearsightedness will become an asset once I lose my central vision. Using my peripheral vision to read, write, watch tv, or play music will be much easier for me if my eyes have already learned to focus on items close to my face. Those who have 20/20 vision and then lose their central vision have a much tougher time adjusting to the change.
Who knew?

'[Mother Nature] loves disguising her strengths as weaknesses' - World War Z.

In addition to that, a lovely nurse pulled me aside. She asked me to look around the office and notice all of the people working in vision care who still wear glasses. Many of these employees have free or nearly free access to lasik, but still choose to wear glasses or contacts.
These two small - but effective - little tidbits of information were all I needed to hear.

I had, essentially, gone in wanting to be talked out of it. Before I knew of my AMD, I had been saving to have my eyes fixed. I was told then that it would be dangerous with my medical history and, after telling me I had signs of AMD, pointless with a disease that would result in blindness. I simply needed to be reminded of all of the reasons not to get it done. 

The Lighter Side of nearsightedness is that it will eventually help me see better in my periphery when I lose my central vision.

Behind Blue Eyes

For Rare Disease Day I wanted to share a bit about my rare disease: Hereditary Angioedema. However, there is another disease that I suffer from that is considered a rare occurrence.
I suffer from Age-Related Macular Degeneration.
What?
Early Onset Age-Related Macular Degeneration.

My eyes, on the inside, look like they are over 70 years old. The drusen were visibly forming by the time I was 18 and the disease was diagnosed when I was 21. My optometrist noticed some drusen at age 18 but thought it was due to Prednisone, inflammation, or due to another condition. By the time I was 21 (and had been saving for Lasik) is when he realized it was more than just an unfortunate side effect. I was told I would eventually go blind, and that because they had never seen this in someone so young, they did not know how quickly or slowly it would progress.
I have been lucky up to this point in the sense that it has progressed slowly. I was warned this year, however, that that may change sooner rather than later.

It is a tough thing. I have always been so proud of my blue eyes. It has always been one of my best features, and a very clear sign of my dad. So it is an odd thing to feel both proud and resentful of something. Now, when someone compliments me on my eyes, or says 'I wish I had your eyes', there is a little pang behind my sincere 'thank you'. I love my eyes - regardless of the disease behind them.

Rare is beautiful.

Optometry Appointment

Why is it that even when I have a good appointment it is still not only good... and I always end up in tears anyways??
Chronic illness of any kind is complicated.

So I have early onset Age Related Macular Degeneration.
Already confused?
So was I.
I was first diagnosed at age 21 by a team of ophthalmologists because it was previously considered impossible to get this disease unless you were over the age of 65 (hence 'age related'). But there I sat, young 21 year old, with a bunch of drusen in my macula and fighting to retain my sight. My eyes, at age 21, looked as though they were already 70 years old. (So I'm more 'old eyes' than 'old soul').

Fast-forward 11 years and it has progressed extremely slowly. (I would also like to point out a particular oddity that my father-in-law suffers from the same disease, and was diagnosed in his 20s as well). Bonkers.

Today I had a basic checkup to see the progression of the drusen and check my eyesight.

The good news is that my eye prescription has not changed. In fact, with contacts or glasses, I currently still have 20/20 vision.
Super exciting!

Until he explains.

He said, very clearly, that if you look at the scans, there is no way that I should have 20/20 vision. He said that my brain has been particularly good at adapting to my changing eyesight. When I use both of my eyes, my brain is very adeptly filling in the literal holes in my sight. (Hooray for being able to adapt consciously AND subconsciously. How fascinating!).

So even though today was all very good news, there is still this very serious and very daunting undertone.

If my scans are basically saying that I should NOT be able to see 20/20, there is that very real possibility that I may wake up one day - soon - unable to see.
I have already mentioned the specks in my vision - which I mostly only notice when looking at a solid-coloured wall, a bright clear sky, or a field of snow. Some of those are normal average-person floaters, but many of those are from the drusen in my vision.

I have been a little more nervous about driving lately. Not for any noticeable reason... my sight is fine and once I am driving I don't feel nervous at all. Nothing feels any different. Nothing looks differently. Yet perhaps my mind is telling me that I may lose that very important privilege of independence sooner than I would expect. Maybe my brain is beginning to have a tougher time filling in those holes - even though my vision (with contacts or glasses) is still technically perfect.

Or maybe I am just overthinking everything.

Either way - I wish I could just put away that daunting undertone and forget its existence by hiding it in my back pocket.
Unfortunately, it really brought it all home again today. I have been at risk for losing my eyesight for over 11 years. I could wake up at any point and be legally blind. Although I try not to dwell on that, on eye appointment days it is difficult to ignore.

Fingers crossed that there will be a new treatment available by the time it starts affecting my daily life.

Can Advanced AMD be Reversed

Age-Related Macular Degeneration is widely considered to be an illness of the elderly. The 'Age-Related' description essentially means people over the age of 65 years with this particular disease.
Though, as we often forget, just because a disease is common or well-known among a specific group of people, that does not mean that they have an easier time with the disease itself.
Plus, as we have seen, however, people can experience early onset (like myself).
Sure it may be more tragic to hear of young children and young adults becoming blind, blindness is tragic at any age.

Another 'Ask me Anything' question was "Can advanced AMD be reversed?"

Not exactly.

There is no known cure for AMD.
There has been information about how to prevent the development of AMD, but that is shoddy as well. With that said, it doesn't hurt to try. Being a non-smoker, keeping your overall cholesterol down, eating leafy greens and adding fish oils to your diet, plus taking a specific vitamin called Vitalux are all ways that could help prevent or slow down the progression of the disease.

I have been told by my ophthalmologist that there is a new medication/treatment coming down the pipeline that is currently going through clinical trials. It has not only been shown to slow down the progression of AMD, but for people with Dry AMD, it has even shown signs of shrinking the drusen that obstruct vision.
Last I heard it was approximately five years out from being approved for the general public.
This is great news for people with Dry Macular Degeneration.

So in theory, Dry AMD could potentially be partially reversed. The likelihood of entirely reversing advanced disease is, seemingly, out of reach at this point.

For those who don't understand, click the following link for a brief overview of Wet AMD. Click the next link for an overview of Dry AMD.
And here is a basic link discussing treatment options and another link here discussing prevention ideas.

Macular Degeneration, to sum it up, is the loss of one's central vision. Most people with AMD will eventually lose all of their central vision but retain their peripheral vision. Most sufferers are diagnosed over the age of 65 years, and many continue with a relatively normal life - learning to rely on peripheral vision. There is, however, a severe loss of independence that goes hand-in-hand with any vision loss.
Learning that there are new treatments in clinical trials is extremely good news, and it also means that there are people working tirelessly to better understand this disease and to find better treatment options.

I, personally, was diagnosed when I was 21 years old. My ophthalmologist explained that my eyes looked as though they were 70 years old. I have been lucky though. My disease has progressed very slowly, and I only experience a few little spots in my vision that are negligible. The only time I even notice is when I am looking at a bright solid surface - like snow or a bright blue sky.
We are not sure if it was exacerbated by medications I was taking at that time or if it s related to my Hereditary Angioedema (a defect in my Complement system).
Either way - after getting second, third, fourth, and fifth opinions (since it was deemed impossible for me to have it), I have been solidly diagnosed with Early Onset Age-Related Macular Degeneration.

I wish I had better answers and better news for the question asked - but three years ago the answer would have been an undisputed no. So having a potential partial yes hope is a good progression.

Dark Table

So RJ and I had this gift voucher for the restaurant Dark Table, which expires May 12th, so we decided to go last night, despite how weak I was feeling.

If you haven't heard of Dark Table, it is a restaurant concept based on experiencing what it would be like to be blind. The entire dining room is pitch black, save for a faint 'EXIT' sign. The idea is to dispel ignorance by allowing people who are not visually challenged to have a completely different experience: to remove all distractions, to focus on our other senses, and to eat food in a way where you are focused only on the taste, texture, smell, and other senses that aren't as heightened as our vision.

To be honest, I wasn't too sure how I felt about it or how I would react. I have been diagnosed with Early Onset Macular Degeneration, so there has always been this impending doom lurking over me, knowing that I will one day lose my vision. I also wasn't sure how I felt about using a disability as entertainment - but the restaurant itself did a phenomenal job - it was more my own guilt about enjoying a night out 'pretending' to be blind.

So, we walked into the lobby area, and we got to choose our drink and our main course if we wanted, and then there was a set of lockers for our belongings; purses, jackets, and anything that would provide illumination (like a phone or glowing watch). Then you meet your waitress - all of the waitresses have visual impairment - and she leads you through a couple of blackout curtains into the dining room. You can hear people - the dining room was loud - but you can easily become disoriented. Walking with my cane proved to be both a hindrance and a benefit. I could feel furniture with my cane before I ran into it, but without seeing where I was walking, it made me feel clunky and clumsy. The waitress leads you to your table and helps you find your seat.
I found myself feeling the entire table to get an idea of size and shape, and kept my hands on my cutlery so that I did not knock them onto the floor.

Then comes the food!!
Surprise munchies, surprise appetizers, your pre-ordered entrée (unless you chose a surprise one), and a surprise dessert.
The food was incredible... and we found it strange to be eating food that had pieces in it that we couldn't quite place. Delicious. And all about the flavours. And conversation.

Of course, I approached it from a very analytical perspective, while RJ just enjoyed the peaceful nature of not having an overload of senses.
We tried to map out the dining room based on voices we could hear around us, and noticed that each waitress had a specific word or phrase that she used to distinguish themselves from each other.

It was definitely a memorable experience.
I came away thinking a few things:

1. I am REALLY glad that I have not had severe urgency while out in a while - if I needed to RUN to the washroom, I would either be stumbling about running into people, or I would simply not make it.

2. The experience could be peaceful like it was for us, but it could also trigger major anxiety or panic attacks in other people.
(When we were silent, I was always wondering if RJ was still there, since I could not see him - it was weird). I also heard a couple of people exclaim that they were 'freaking out' quite a bit...

3. I learned several aspects of blindness that I had not previously thought of, like how difficult it can be to know whether food is actually on your spoon or not. (I definitely tried blowing on food that was not actually on my fork, or taking a spoonful of food - with no food on it - more than once). I also would bring my bowl right up to my face to try and avoid spilling anything... not like I would truly know if I had anyways.

4. It made me ponder the difference between losing your vision slowly, over time, versus being immediately thrust into complete darkness with no warning, and how panicked it would make one feel. Panicked and angry and unsettling.

5. In a strange way it also made me feel hopeful... that there are benefits to every disability if you can make yourself aware of them. Understanding another's illness gives a new perspective, and allows us to see that people can live full and satisfying lives, even with the loss of something so central to what we consider valuable.

It is safe to say that it was an interesting and 'eye-opening' experience, followed by mixed emotions about the entire concept. The service was amazing, the food was amazing, and the concept is ingenius.
Memorable.