Duane's posterous

Days 11-14: Airports Are Scary Places!

Sorry for the tardy update everyone.  We arrived in Ontario late on Sunday night, and yesterday was filled with visiting with family and friends.

 

If you've been following my journey, you'll know that Sunday evening was officially the end of my two weeks with limited vision.  I was certainly ready to have the glasses off and be able to live life with my peripheral vision.  Surprisingly, near the end I was getting used to things with tunnel vision, even when I was out and about.  For example, on Sunday I was in Calgary at my brother's place and helped him move 16 full-sized kayaks from a delivery truck into his garage without slowing down too much.

 

In the 14 days of wearing the glasses, I had to break the rules twice and take off the glasses outside of work.  We had a little car trouble on Friday and it required a trip to and from the shop to have it looked at.  Unfortunately the parts were not available to completely repair our car, and we had to take a friend's car to Calgary on Saturday.  Since it's a manual transmission, Karyn wasn't comfortable driving it, and I had to break the rules for that trip as well.

 

I have to write a little about my experience in crowds.  On Sunday we flew out of Calgary to Ontario for Christmas, and I realized that the airport is a scary place for limited vision!  When Karyn and I entered the airport, I almost took a guy out who was cutting around the corner.  Thankfully I saw him at the last second.  When we were trying to get to the ticket counter, I saw what I can only describe as a mob of people coming toward us.  I thought I was going to have to try and pick my way through them but thankfully Karyn was in front of me and got us out of the way before they reached us!

 

I was a little concerned about going through security with the glasses on, but nobody asked me any questions or gave me a hard time.  Same with the flight itself.  While I'm sure I got a few sideways looks walking down the aisle on the airplane, not even the flight attendants asked me anything about why I was wearing them.  Reading on the plane was out of the question (too dark) and I'm not really a sleeper while traveling so I was really thankful for the TV in the back of the seat on our flight.  My field of view was just wide enough that I could see the entire screen, though nothing else around it.  

 

When we arrived in Toronto and were waiting for our bags, I experienced a similar feeling to when we were going for the ticket counter in Calgary.  Just a mass of people moving about and everyone going their own way.  Again, I did not run into anyone, but I wouldn't want to try and navigate the crowds myself.  Thank goodness for Karyn!

 

Throughout the experience I didn't trip over anything or really hurt myself (something Lowell told me might happen!).  There were two times where I accidentally hit / bumped people because I couldn't see them, both being family members!  The first was Karyn while we were shopping, and I think I put an elbow lightly into the side of her head.  The second instance happened about an hour before I was done wearing the glasses.  We were in the kitchen at my parent's place and I was on my way to the fridge.  Apparently my Mom was moving in that direction as well.  I got Mom a little harder than Karyn, but nothing too serious and we all laughed about it since Mom forgot that I couldn't see her!  :)

 

As I mentioned at the beginning of this update, I'm really glad to have the glasses off, and I think Karyn is too.  It's nice to be able to move around again without being slowed down or impeded by not being able to see.  Karyn was excited to be able to see my eyes again (and not to lead me around!).  I sound like a broken record, but I am really thankful to her for doing this with me and being there to help me out for the past couple weeks.  On the same note, I have an even greater respect for Lowell and Julie and how they make life work on a regular basis with Lowell's condition.  

 

Again, I wanted to express my gratitude to everyone who supported me through comments, prayers, and donations over the past couple weeks.  While we still haven't achieved our goal of being able to pay for a treatment for Lowell, we have currently raised just over $1,800!  I'm going to be collecting donations until the end of December if you would still like to help out.  Again, donations can be made either by Email Money Transfer to donationsforlowell@gmail.com or by cheque, made out to Duane Clemens, with Donation for Lowell in the memo, and sent to Box 2733, Fernie, BC  V0B 1M0.

 

Have a Merry Christmas everyone and thanks once again!

 

Duane 

Days 8-10: Finally People Start Asking!

After a week and a half of wearing the glasses, I am almost getting used to them.  That said, I think my linear personality has been beneficial, with things that I normally did with full-vision helping me cope with a loss of vision.  Things like always putting certain things in the same spot (my wallet, items in the kitchen, etc.) makes it easier on a day-to-day basis because I don't have to search around for them.  My experience with limited vision is that trying to find things can take a lot of extra time.  Knowing where things are on a consistent basis is also very helpful just in moving about our house - we don't usually have things laying about so I can move around pretty quickly and freely in our home, something I can't really do when I'm out.

 

I'm going to change things up a little and talk about things in reverse this time.  Part of it is those things are fresh in my head, mostly though, the last few days have been rather uneventful!  :)

 

Today Karyn and I spend part of the afternoon out running errands.  I needed to go get some bindings mounted on skis, I needed to go to the bank to deposit some donations that have come in (thanks everyone!), and I needed a coffee!  While we were out, I'm sure I got quite a few looks, but I was also able to share why I was wearing the glasses, and got a lot of positive responses from people.  There were even random people that I didn't know who were willing to make a donation, so that was really encouraging!  The one conversation I had that really stuck out though was with a lady who owns one of the restaurants here in town.  While we were talking, we found out that her daughter has an eye condition which sounds like the exact opposite of Retinitis Pigmentosa.  Unfortunately I can't seem to remember the name but the difference is her centre vision has been lost, and her peripheral is intact.  She's 12 years old and legally blind, and they don't know of any treatments for it.  I passed along the name of the clinic that Lowell goes to, and it would be awesome if this experience was a catalyst to help this family out as well.

 

Moving through stores today made me extremely dependant on Karyn.  If she were not there, I would have tripped over so many things and had a hard time finding what I was looking for.  While walking around I learned that some aisles really weren't made for two people to walk side-by-side and it got a little tight at times!  As hinted on in my last update, I think it was a little frustrating for her to have to lead me everywhere and be able to see everyone staring at me.  On the flip-side, she was quick to add to conversations when people asked why I was wearing the glasses and excited to share what we were doing.  

 

Tuesday and Monday were fairly uneventful days and nothing (visually speaking) out of the ordinary happened.  Bible study last night and floor hockey on Monday night.  As mentioned at the start of this update, I am getting a little better at seeing with the glasses on, and was able to follow the hockey game much better than the week before.  I still don't think that I would try to play with my visual limitations, but at least I was able to enjoy the hockey from the sidelines.

 

One thing I forgot to mention that happened on Sunday was our experience shovelling the driveway.  We received an inch or two overnight, and when Karyn and I got home from church, we cleared the driveway.  I worked on my half, and Karyn worked on hers.  At one point while shovelling, a truck went around the corner and I thought it was a little close to me, and at that point I realized that I was part way out on the road and didn't even realize it.  I think if I were to continue with the limited vision for a longer period of time, I would probably hurt myself quite badly simply because I wan't spatially aware of where I was!

 

On a more generalized note, I have started to experience some flashing.  Lowell told me that he gets this, though I'm not sure what I'm experiencing is the same.  In the blacked-out parts of my vision, and usually at night, I'm seeing blobs of light and colour, and they appear as if they are being reflected in water.  It doesn't bother me too much, and I can control it if I really focus on what I'm looking at instead of relaxing my eyes.  I'm also starting to get headaches by the end of the day from wearing the glasses and I think that's a result of not being able to focus properly on things that are too close because I cannot move the position of my eye.  

 

While I'm still committed to this experience, I'm going to be honest - I'm definitely looking forward to the end of this week when I get to stop wearing the glasses.  The novelty of wearing them lasted about an hour, and now it's just gotten old!  What's kept me going through all of this is the support and encouragement  that I've received from people over the past ten days and the blessings in the form of donations that have come in for Lowell.  I can't thank everyone enough!

 

Duane

PS - I totally forgot to add, if you would like to make a donation, you can send an email money transfer to donationsforlowell@gmail.com or send a cheque, made out to Duane Clemens, and mail it to Box 2733, Fernie, BC  V0B 1M0.  Just put "Donation for Lowell" in the memo.

Days 5-7: Apparently People Stare

I suppose the statement, "ignorance is bliss" would apply in this situation since I can't see it, but Karyn has told me that people stare at me when we're out.

 

Over the course of the week we didn't venture out of house too much.  On Monday I went to floor hockey in Elkford and the next major outing was on Friday night.  Karyn and I decided to go out for dinner to Boston Pizza, and I guess I got a few strange looks.  I suppose it's not every day that you see a guy walking around in strange glasses, so people were doing a double-take when they looked at me.  It happened at dinner and it happened at Extra Foods when we went in to buy a few things before going home.  Surprisingly enough, not a single person approached me to ask why I was wearing the glasses.

 

Walking around the store was interesting.  I had to be deliberate about taking in my surroundings so I didn't walk over a display or run into someone.  I relied quite a bit on Karyn to guide me around the store, and I think we both felt kind of silly for having do to that.  It was difficult to find items on the shelf as I'm used to scanning and focusing in on what I want to buy.  With limited vision, I had to do spend a lot more time what each thing was prior to choosing.

 

The walk from the store was my most difficult walk with the glasses on.  After leaving the grocery store (a 10-minute walk from our house), we decided to walk home on the "path" that led behind a huge snow pile from clearing out the parking lot.  It was dark, and walking on the path with assistance from Karyn was tricky, so I had her walk a few feet in front of me and I just followed her.  A few times I lost my balance a bit and wobbled, but no spills.  Once we got to the back side of the pile it became apparent to Karyn (I couldn't see!) that we were going to have to go OVER the snow pile.  The way up wasn't so bad, but the way down took me a little bit to navigate since I couldn't see my next step.  Again, thankfully only a few wobbles but no falls.

 

Today I wore the glasses to church and the reaction from people was a little better.  There were a few that actually came over to ask why I was wearing them instead of just staring and moving on.  I even managed to stop the sermon when Pastor Shawn was scanning the congregation and his gaze stopped on me.  I'm not sure if he was expecting to see me wearing them, and it threw him off!  I got a good chuckle out of it if nothing else!  :)

 

I held baby Peta today in church for a little, and while doing so, had a sadness for Lowell.  While I was holding her, I was trying to look at her and found that really hard with my vision.  She's such a small baby, and yet I could barely see more than her face.  I had to ask Karyn whether or not I was supporting her neck / head well enough because I simply couldn't see.  I realized that this is probably something Lowell will struggle with when they have kids and I don't envy it at all.

 

I'm beginning to realize that limited vision changes the way I interact with people. Talking with multiple people at once is challenging because I want to make sure I'm looking at everyone involved on a regular basis to acknowledge their participation in the conversation.  I've been surprised a few times when people have walked away from the conversation without my knowing.  On the flip-side, I have noticed I'm more engaged in conversations one-on-one because I am strictly focused on them and not being distracted by what's happening around me (which in itself can be freeing and disorienting at the same time!).

 

One of the difficulties Karyn is having with all this, and something that is starting to wear on her a little, is the fact that she can't see my eyes while we're talking.  Of all the things I thought she might struggle with, this never really entered my mind as an issue.  Karyn has been great so far through this experience.  She's been extremely supportive and helping me out when I need it.  She walks over to me and hold my hand / arm when we're walking around, warns me of obstacles I might trip over, etc.  Julie hinted that this is what she has to do on a regular basis, and I think we both have a much greater respect for her knowing how much involvement she has in everyday life.

 

I've been really encouraged by people who have commented on the original blog post I did announcing this idea and my updates.  I also wanted to thank everyone again for their donations to Lowell, and after a week of fundraising, we've been able to raise close to $900, with more coming in!  That's about 15% of the way to our goal of being able to pay for a treatment for Lowell.  If you haven't donated already and would like to, I would really appreciate your support.  Donations can be made by Email Money Transfer to donationsforlowell@gmail.com or by cheque, made out to Duane Clemens (with Donation for Lowell in the memo) and mailed to Box 2733, Fernie, BC  V0B 1M0.

 

Thanks for reading!

Duane 

Days 2-4: My Kitchen is Dark!

On Tuesday night we had our weekly Bible Study at our house.  The host couple normally makes dinner for everyone and, since Karyn's working later on Tuesdays now, that left the dinner responsibility in my hands.  I was looking forward to this to see whether or not I could actually handle making a full meal for nine.

 

The menu was BBQ chicken, rice, and steamed veggies.  For the most part, the meal was a success, but I did have a little trouble making it!  I would not describe our kitchen as well-lit at the best of times, and with the addition of some tinted glasses and tiny field-of-view, I found certain things to be a challenge.  Moving away from the stove with the strongest lights (on one side of an extremely long kitchen) to the sink, cupboards, etc. on the other side of the kitchen mean going from light to darkness.  During prep, knowing how much water was in the pot and measuring out the right amount of rice were tough.  Outside at the BBQ, being able to see how the chicken was cooking and spreading the sauce on them were hard to do as well.  Add this to the fact that the kitchen table was moved around, there were twice as many chairs in the room to dodge, and extra bodies, and all of a sudden moving around took a lot of time.  In the end, I had to get someone else to finish the BBQing because I just couldn't do it all (not normal for me).

 

On the topic of dinner, eating has proven to be a bit more difficult than I thought it would be too.  With limited vision and the inability to move my pupils, I can't see my fork / spoon when it gets close to my mouth.  As a result, I have to slow things down quite a bit and concentrate on where I'm aiming!  It's a little embarrassing when eating around people, but I can see the humour in it from their end! 

 

On Tuesday night during Bible Study I started to experience a pulse in my vision.  It is a strange experience and (nerd alert!) the closest thing I can relate it to is a when a camera is trying to focus but can't quite get it.  It freaked me out a little on Tuesday, but now that I know what's going on it doesn't really bother me.

 

One of the last things that has struck me is that I find using my computer hard to do with the glasses on.  I never thought I would say it, but 27" of iMac and a second screen are too much for no peripheral vision.  When sitting at my computer, I can see about 1/2 the screen at any time.  Typing this message isn't all that difficult because it stays within my field of view, but trying to navigate around on my computer, use different programs, or even find out where my mouse is pointing can be tough sometimes!  I've found that using Karyn's laptop is much easier!

 

Thanks again to everyone who's following along!  I appreciate your encouragement and support.  Don't forget, if you want to make a donation to Lowell, you can either send an Email Money Transfer to donationsforlowell@gmail.com or send a cheque, made out in my name, to Box 2733, Fernie, BC  V0B 1M0.

 

Duane

Day 1: Getting Used to Seeing Less

Yesterday was the first day I donned my fancy glasses that reduce my peripheral vision to under 20 degrees.  I instantly realized how much I take my vision for granted.

 

It was simple things yesterday that provided some challenges.  Things like making sure I wasn't over-filling my coffee mug and concentrating more on my surroundings and where I was in a room so I didn't stumble over anything.

 

While wearing the glasses, I had a strange experience of not feeling totally connected to my body.  It is like looking at what I'm doing through a view-finder and remotely telling my body what to do.  Like I said, it was a strange experience.

 

I took it easy yesterday, easing myself into this experience.  I made my breakfast / lunch / dinner and that was OK, though it took me much longer than usual.  I went out and shovelled off our deck yesterday and, while I didn't have any mishaps, I did find out that my depth perception and balance are off.

 

Monday nights I usually go to Elkford, about 45 minutes from Fernie, to play floor hockey with a bunch of people.  I decided before I left that playing was out of the question, and I think it was the right call.  On the drive up, while I could see most of the road from the back seat of the car I, I had a hard time picking out details within the beam of the headlight, and everything else was completely black.  Once we arrived at the gym, I sat in the bleachers and watched the game and had a difficult time following it.  Trying to track the ball when it was moving fast and seeing the play unfold was hard and sometimes I was completely lost as to what was going on.  Walking around in the gym was also difficult, something I didn't really experience at home because I'm used to my surroundings.  I will need to remember that over the next couple weeks when I'm out.

 

I also learned a little about one of the advantages Lowell has over me.  While his vision is less than 20 degrees, he is able to move his eyes around and survey the scene.  When I want to do that, I have to move my entire head around since I'm looking through two tiny holes in my glasses.  This also becomes a problem when I try to focus on things close to me (like reading a book) because normally the eye would cross a little in this process.  For me that's not really an option since the hoes are fixed.  I think if I want to read on any regular basis over the next few weeks, I'm going to have to block out one eye completely and read with one eye.

 

Tonight I'm going to try something a little more challenging than yesterday.  I'm about ready to cook for nine people by myself (Karyn is at work).  The menu this evening is BBQ chicken, steamed veggies, and rice.  We'll see how things go with getting this entire meal together!Thanks again for your support!

 

Duane

 

PS - Fundraiser update!  As of yesterday night, we received just over 10% of the donations to meet the goal of paying for one treatment for Lowell.  Thank you very much to everyone who has made a donation so far! 

A Funny Story Passed Along By A Friend

This one is true - if you know Matt and can picture what he went though you'll probably end up like me - falling to the floor in a fit of laughter.

Click here to download:
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A funny incident that happened to me last night, I thought I would share with the rest of you hopefully you can get a laugh at my expense.  Pictured above is a wax sealed bottle.  I will be referring to the above bottle throughout the story for those visual thinkers in the crowd.  Recently I was given a bottle of special vinegar.  My bottle, while differently shaped than the one above is similar enough to draw parallels.  The bottle in my story is clear glass and filled with white vinegar and with what looks to be a red pepper and a pine tree floating around inside.  While I would never buy such a bottle of vinegar I like vinegar and I like peppers so why wouldn’t I like the two together.  The said bottle is capped with a bright red red wax seal (similar to above) and no instructions on how to use.  First you have to understand my feelings towards this bottle.  It intimidated me.  It stared at me constantly taunting me from its perch on my shelf.  Completely out of place, a full class level above its shelf cohabiters.  Sitting there smugly superior, surrounded by my extra virgin olive oil and cheap $2 bottle of balsamic vinegar.  In quite times it would whisper to me…”You can’t handle the wax seal; you’re not good enough for me.”  It was right of course.  Even if I could manoeuvre around the bright red wax seal I had no idea if you’re actually supposed to use this type on vinegar.  Day and night it taunted me, eroding my confidence like waves beating on a shore line.  The mere sight of the bottle and beads of sweat would sweep across my forehead.   I avoided its gaze and soon I had become a prisoner in my own home.  

Then, on this fateful day of December 10, 2009 I had enough.  With my, oh-so-tasty chicken strips sizzling in the oven I decided today was the day (everyone knows the best thing to ever happen to chicken strips was vinegar).  Not only would I rise above my fears and conquer my adversary I would shame this hoity-toity product of insanity (seriously who grows a tree in a bottle of vinegar).  The bottle, sensing my momentary power, quaked as I seized it from its perch.  With surgical precision I began my attack and the battle had begun.  Soon, powered by my fervor, I had succeeded in carving away the area surrounding the spout.  Tipping the conquered bottle to reveal the fruits of my labour……nothing.  Sensing the moment of stunned indecision the nefarious bottle began its taunts anew.  Wave after wave of cruel insults pounded away at my confidence while I gathered myself for another assault.  Knowing I may not have the energy for a third attack I decided this had to be it.  I had to crush my enemy now before he fed off my fear propelling him to a level of superiority never before seen on this earth.  An unattainable level at which I would never again be able to summon the strength to challenge his position.  Seize this moment now or forever dwell in the depth of despair knowing that your best wasn’t as good as your adversaries.  Seizing the moment I carved away the entire top of the seal effectively decapitating my adversary.  Triumph lit my eyes as the last of the wax fell to the ground revealing the opening at last.  The taste of my long awaited victory first like a sweet fruit soon turned to ash in my mouth.  My previous sense of triumph soaring at the highest of highs soon plummeted to the depths of insanity.  The bottle laughed.  Sitting there in the mouth of the bottle was a cork stopper.  Wax seals, cork stoppers, an unassailable wit….how many layers of defences did my adversary have?  However victory was now within my grasp.  “Cork stopper??? Is that all you have??” I roared.  Seizing my trusty knife I lunged, stabbing the stopper at the heart.  Knowing his demise was at hand the bottle executed his last defence, suicide.  Like the spineless coward he is the cork abandoned his will to live, breaking in half, leaving his withered corpse behind to block the entrance.  Something changes with the bottle.  Having spent his last mode of defence it now lies broken and defeated in my hands.  

Wishing to savour my moment of triumph I move the field of battle to one of comfort.  Cradling my enemy I position myself on my couch, place the bottle between my legs and looking down at the cork.  Gingerly I position the knife to administer the killing blow.  Slowly the knife lowered until contact with the enemy is made.  Suddenly my world explodes into flashing white pain.  Treachery of all treacheries!!! The bottle wasn’t defeated, it was lying in wait.  Gathering the last of its strength and waiting for the moment where my confidence overtook my sensibility.  Waiting for the moment where I exposed the tender un-armoured portion of my body.  Waiting till it could strike the area it knew would cause me the most damage, my eyes.  The cork sucked back into the bottle and in its place a rushing stream of white hot vinegar struck me in the face.  A direct blow, striking me at the core of my venerability, a streaking arrow straight to the centre of my heart.  The pain and terror overwhelmed me as fireworks reverberated in the space between my ears.  All sense of reason left me and I was left with one singular purpose.  Water…..my eyes…..pain…..I had to relieve the pain.  Blindly I bolted for the bathroom where I knew sweet relief awaited me.  Blind to all forms of harm the bottle had struck wisely and I ran directly into my island.  The rock island struck me directly below the ribs effectively knocking all wind out of me.  No site in my eyes, no breath in my lungs I collapsed to the kitchen floor a defeated shell of a man.  On top of the shame in defeat the bottle cast one final killing blow.  Tipping itself onto the ground it spilled the last of its contents onto the floor.  

Cliff Notes:  There must have been some pressure in the bottle so when I popped the cork a stream of vinegar shot up into my eyes (much like opening a bottle of wine).  Vinegar in the eyes does not, I might add, feel as good as you think it might.  To top it off I ran squarely into my island trying to make it to the bathroom.  I wished I had a phone or the internet or something last night so I could have made sure I wasn’t going to go blind.  Turns out that vinegar in the eyes does cause blindness…..just pain…lots and lots of pain.