Art

As many of you know art is one of my happy places. My outlet when I have anxiety and heck when I’m bored I just do art. I don’t imagine myself as the best artist ever by any means but I enjoy it.

I do believe that art should drive conversion and be inclusive.

To that end I want to create art installations that will carter to those with little to no sight. So I am trying something different. I want to create universal constants for colours using everyday materials. I know that trying to describe colours to those who have never seen it is near impossible. So I’m ok not trying I want colour to be felt differently but the same across the board.

I will duplicate paintings I do using other materials. Each colour will have an assigned material that accurately depicts that colour. So those fully sighted will be like “yep that’s that colour” and if they are with someone who is low or no vision can “see” the same painting. They will be able to interact with the paintings. They will touch it and come to know that each colour has its own feeling. I will always use the same material to represent that colour.

If I’m ever lucky enough to have a showing I would provide a legend so that those who need it can learn the colours and go and feel the art which will be displayed with art for those who are fully sighted. Or at some point create full pieces or accessible art.

I’ve got some universal materials in mind but could use some help. It might be a bit crude and shades of colour might not be included but I’m sure my idea will evolve. Either that or fail miserably.

Here is my list thus far:

Black – Garbage bag

Silver – Aluminum Foil

White – Polly fill

Green – fake moss

Red – valour material (like that of Santa suit)

Orange – Safety Vest

Pink – faux leather

Blue – fake feathers

Yellow – fake sunflower petals

Brown – faux fur or cardboard

What are some ideas you have for colours I haven’t listed? Keeping in mind right now I’m not aiming for light shades or dark shades just want to see if this idea will fly.

Here is the first painting I’m going to try to duplicate.

The duplicate will be done shortly. Like with most ideas I think it’s a good one and looks amazing in my head but worried it won’t pan out. Thoughts?

A look in the past (part 2)

It’s been a while…(yep I hear the song in my head as I write this as well)! I’ve been busy with work but to be honest I’ve just been really tired and dealing with an asthma flare up. Still kind of dealing with that but it’s gotten a whole ton better.

 

We left off last post in 1981 with the only entry and now we move to 1982 were there are  a few more reports.

 

First up is the discharge report for the first surgery I’ve had. I was admitted on April 11th, 1982 and left the hospital on April 19th, 1982. The first  part of the report details “History of present illness” really just sums up what they are looking to do during this visit and doesn’t really talk about my history. They ensured that during my stay under general anesthesia that the ENT (Ear, Nose, Throat) team take a good look at my larynx.

 

According to this report my “Past History” is “otherwise unremarkable”. That’s a bit of a hit to the old ego!! Just joking, it’s good that there isn’t much to put here.

 

Next section is titled: “Physical Examination” and SURPRISE they just describe what they saw. I was described as “a tiny girl with abnormal facies.” Also the first mention of me being tongue-tied , this doesn’t wholey surprise me and makes an odd sense based on how my tongue is now.

 

The next section up is listed as “Course in Hospital” seems an odd name for a title but who am I to judge. This section is dedicated to describing the surgical interventions that were completed. I had surgery on April 12th, where they removed the 4 skin tags (3 by right ear and one on nose), they reconstructed the preauricular region to form a tragus. In other words that little blob at the opening to your ear that sits right in front of the opening wasn’t there so using what tissue was near by they created a little blob for me.

blob

They moved on to fixing my eyes where they repaired. My right one seems to have been easy they were able to get the two parts of the eyelid together without any issues. The left eyelid defect called a bilateral upper lid-coloboma extended to a cleft extended to the eyebrow. To this day my left eye brow is in two with a predominant spot where the eyebrow didn’t grow and where the eye was repaired. Because the left upper eye lid didn’t form or much of one formed they created one using a skin graft, it doesn’t say where they took the skin from but my mom once said they used the skin tags they removed to build the full thickness graft. Being able to create an eyelid so tiny has to be an art and I’m glad they did but my left eyelid is kind of thick and bumpy and makes using eye shadow on that eye annoying. The last thing they did was release the tongue-tie. As mentioned above they wanted to review my larynx which they did and found no abnormalities.

 

I had no postoperative complications and was released on April 19th with no medication or any other notes.

 

The next entry from 1982 is dated May 14th where I had a follow up as an out-patient. It’s a short entry so I will reproduce it here. “This child’s eyelids look really good. the only problem left is the left tragus which is not adequate. The ICD is 32mm, already and we are just going to have to follow her to make sure that she does not become too wide. I have already explained to the parents that we would have to do her hypertelorim when she is about 2 electively.” I did include a link to what hypertelorim is but in cause you want to skip that it just refers to the large distance between the eyes.

 

The final entry for 1982 is dated September 24th, just after my 1st birthday. It was again a out-patient visit for the surgery in April. Again it’s short and sweet so here is what it says. “This girl’s eyelids really look excellent today and we are going to get some new photographs. She does have an infection of the left larcimal sac and I’m sending her to back to Dr. Pashby to see about that. If Cr. Pashby is going to do anything at any time, I will re-align the eyebrow which has a step deformity. Otherwise I will see her in 6 months’ time, as she is going to need a hyperteloriam correction. I think probably around the age of 2 or 3. At the moment the ICD is 32mms..” No real surprises here but talking about fixing the distance between eyes still seems like it’s gone from something elective to something that they really want to get done. Looking at the only picture I have of myself at a young age it doesn’t appear that was actually done. I think the distance between my two eyes seem larger than the average person.

youth

Next up will be 1983 and might combine with 1984 we shall see!!

A look in the past (part 1)

Early May while in Toronto for an appointment I decided to pop in to The Hospital For Sick Children and request records relating to any medical conditions I have that I might be unaware of. A lot of times those with facial differences have other conditions that tend to be related to the facial condition and I became curious. As much as I love my mom she did a piss poor job of keeping records and as I grew older I wasn’t able to ask her questions relating to my time in the hospital as any attempt to engage in that type of conversation was met with either “I don’t know”, “I don’t remember” or just straight up silence.

So I got what are referred to as Clinic Letters and Discharge Summaries. I attempted to write a blog post before detailing these but it wasn’t working out the way I wanted and remains unfinished. My new approach will be to split them up in to years and dive in to what I remember and what on these really surprised me. The records span the years of 1981 to 2008. This entry along with the setup above will explore just 1981 as there is only one entry.

The following is a summery of the discharge report.

The first part tells that I was admitted on September 16th, 1981 and discharged October 22nd, 1981. This marks my first surprise. I was under the impression that I spent a lot of time in my local hospital before being flown to Sick Kids where I thought I spent another long stretch. This revelation makes me want to get my reports from my local hospital as I do know I spent time in the local NICU as I’ve had a conversation with a nurse who upon seeing me years ago remembered taking care of me for an extended period of time.

The next section talks about the Maternal History stating “Mother gravida IV, para III”, using good old Google I learned this means she had 4 live births but only has three living children. This wasn’t a shock as I learned of my sister’s passing from an early age. It also was no surprise that my mom went full term, having a normal delivery.

Next up is a sectioned titled “Neonatal History”, shows I weighed 2.190kg (4.8 pounds), this was a bit of a surprise thought I was 4.5 pounds. It mentions “dysmorphic features were noted at birth”. The mystery here is if my mom knew ahead of time to expect this, I’ve heard both that it was a surprise and expected. Guess both of those could be true but this one will remain a mystery.

The next section lists the problems as the doctor’s saw them so going to list them as they did.

Problem No. 1: Ophthalmology

There are two pretty big paragraphs in this section. Pretty much listing all that was wrong with my eyes and they are:

– A right upper lid mid-coloboma

– Total absence of the lower mid lid on the right side giving minimal exposure

– On the left there is almost a complete absence of left upper lid

– Incomplete development of the lateral canthus and left lower lid

– Exposure keratitis of the left eye with corneal ulcerations

– Absent left tear duct

What was surprising to me here is the fact that my right eye was also effected by my facial difference. I was only ever told that everything on my left was impacted. There is also no mention of the dermoid cyst that is present now and has been there for as long as I can remember. Essentially in this section they talked about taping my eyes partially shut to protect them from exposure and ulcerations. They used a few different ointments and eye drops. As I get older my eyes seem to be going down the crapper but there is no indication from this that it could have been prevented.

Problem No. 2: ENT

This second section is smaller, they go on to describe my abnormal feathers which are:

Bilateral accessory auricles and skin tags

– Small posteriorly-rotated ears

– Left external auditory meats ends blindly while right is normal (talking about the ear canal)

– Broad bifid nose with a skin tag

– Nares are present but appear small (meaning nostrils)

– Tongue deviates to the left

– High arched palate with sever micrognathia

– Left side defect of the mouth with macrostomia

Surprise here is that again the right side was impacted as this was where the bulk of the skin tags were. I knew I was born with them as my mom mentioned them but I assumed they were on the left side I also had no clue one was on my nose but that does explain the odd dimple like shape on the lower right side. I know my ears are not where they should be in relation to everyone else’s, it’s made finding ear phones every hard.

Problem No. 3: Plastics

Pretty small paragraph here, only a few sentences that talk about how the plastic surgeon would be co-ordinating my treatment. They expected to do my first surgery when I was two or three months old.

Problem No. 4: Neurology

Again a small section stating no neurological deficits found. However they did find a lipoma midline in the brain. I was shocked to read this I had NO idea that the brain tumour I thought was a recent discovery was in fact old news. They didn’t give dimensions so no clue if it has grown over time or if it’s always been 3cm x 1cm. This would have been handy to know growing up.

Problem No. 5: Genetics

This whole section was a surprise. To be honest I didn’t think they looked at genetics back in the early 80’s. This section reads “she has normal chromosomes, and the diagnosis is a combination of frontal nasal dysplasia and branchial arch problem.” From what I can tell this means what I was born with is in no way genetic but just poor luck. Genetics have come a long way since I was born so if I was ever about to think of having kids I’d like to have this confirmed so I know the risks of having a kid born with a similar condition.

Problem No. 6: Nutrition

Not a whole lot in this paragraph it goes in more detail about how I was fed. When I was first brought in I was fed via orogastric tube constantly however after a barium swallow test showed no issues with me being able to take food by mouth they thought they would try bottle feeds. This seems like it was a pretty big failure as I had a poor suck response and took next to no food via the bottle so they switched to a combo of bottle feeds and NG tube. They seemed pleased with my weight gain as I was 2.720kg (5.9 pounds) at the time of discharge. They seemed more concern that my head circumference was smaller than expected, went from 32.7 cm at birth to 34.7 cm at time of discharge. Not sure how much growth is normal in a newborn of just over a month old. Again not a lot of surprises here my mom told me that when she was home she fed me via eye dropper. However I’m not sure why that was and why she didn’t continue the NG tube feedings. My guess would be that the formula, tube, and other supplies cost money we didn’t have.

Problem No. 7: Other Systems:

This was the paragraph I was most interested in, this would really tell me if there were any other problems I need to be aware of. But according to the long winded paragraph everything tested came back normal, that includes my heart, lungs, gastrointestinal, everything. The major concerns were my feedings, my eyes and the rest of my face.

When discharged I was taking the following medications:

– Duratears ointment to each eye q.2.h (meaning every 2 hours)

– Sodium Sulamyd eye drops to left eye OD (this is confusing since they wrote out left eye and wrote OD which stands for right eye)

– Zinc Oxide to buttocks (every baby needs this)

– Normal saline drops to each nostril prior to feeds

It’s odd to read “talked to the Loker’s since my dad passed it mid 1983. I always wondered what his take was on all of this and what questions he asked.

That’s it for Part 1, I will try to get these written weekly if people are interested.

Ugly

According to dictionary.com the definition of the word ugly is

  1. Very unattractive or unpleasant to look at; offensive to the sense of beauty; displeasing in appearance.
  2. Disagreeable; unpleasant; objectionable.

Why am I starting a blog post with this? Well I’m glad you asked (it’s assumed that you did, if you didn’t go back and read the words before, ask the question….good all caught up) I’m about to share why.

I freely use the word ugly when discussing my appearance and I find people’s reactions odd. Just about everyone that knows me has at one point tried to point out to me that I’m in fact not ugly but far from it. They use my personality, my drive to help others, my advocate work, and overall comment on my inner traits that define me as a human being. They tell me I’m beautiful both inside and out. I often don’t respond or I just shrug them off. I don’t take compliments about my appearance easily if at all for the simple fact is I don’t know what to do with them.

My head is an interesting and scary place where my inner most thoughts not dare see the light of day. The one thought that has slipped out and often is how I view my own uniqueness. I think I’m ugly, I hate looking at myself and any comments or compliments that try to skew these thoughts tend to be instantly thrown away.

Don’t get me wrong, I do think I’m a fantastic person, I’ve got a lot to give, I’m witty, funny, sarcastic, and generous. My inner most traits are on full display and I’m thrilled that people seem to agree with me on those points and that they are so visible.

The inner most traits for which I cultivate and work hard to maintain are not the only things I’m judged on. All those who read this already have a volley of “OMG Penny you are not ugly….” comments ready to fling my way. I bet most didn’t even finish reading this post before sending me a text or a Facebook message telling me how great I am. I’m not fishing for compliments cause in case you didn’t read the above words I have no where to stick them. My brain can’t compute anything that you tell me, my brain thinks you are all lying to me simply to placate me even though I have no doubt you are telling your truth.

No one likes to be called ugly, it’s taboo in our society it’s uncalled for. They very word brings about this feeling of hurt, and shame. I’m not sure when we gave that word the power it has now but it’s used a lot to describe not only a persons appearance but their actions, behaviours, and thoughts. I’m also not trying to own the word or make it my shield. But the word does fit and it’s fascinating to me.

I’m freely able to admit that I’m a hypocrite (another not so nice word), I view myself as ugly but I don’t see that in others. We as a society deem that a person who is attractive is most likely going to be successful and those who are not find themselves at a disadvantage. In a Facebook singles group I’m in just about everyone talks about how being attractive is that first impression that is needed before more tends to happen. The thing is I don’t disagree, there are some guys in that group that when I first see them I admit that they don’t do anything for me. Hence me labelling myself a big ol’ hypocrite.

I struggle with that inner voice, I try to find a balance whereby I don’t judge a person simply by how they look and not settling. But also not wanting to be judged for how I look.

often times we hear “appearances can be deceiving” on the flip side “beauty is in the eye of the beholder” so many sayings and quips suggesting a complex relationship with looks. Even with food it’s often told “we eat with our eyes”and just in the last year Zehra (owned by Loblaws) became selling a line of “ugly” veggies, they sell them way cheaper simply because if they are put out alongside the rest of them they don’t get picked simply because they are “ugly”. I’m not ok with the label they gave but I buy them all the time.

I’m a great friend, sister, daughter, I will always love and support those around me. But my love and actions won’t change how I view myself, I am ugly.

Through their eyes

As I get older I’ve become more fascinated with my facial difference as it relates to those around me. When I’m alone and I’m out shopping or just getting to and from work I see my difference through the strangers that stare. It’s one of the ways that I’m faced with the concept of difference and it’s almost daily. What I’ve started to be come interested in is how my friends view my difference when we are out and about together. How it impact them, their experience and their lives. We always focus on the one dealing with the difference or illness but I find those around it are just as impacted. I know my difference impacted my sister a great deal although she doesn’t much like to talk about it. I know she felt left out, isolated in ways that I can’t understand. I wish she had been included more with my appointments as there were times mom and I were gone for a week at a time for various appointments and she was left in the care of our older sister.

It’s no surprise that I’ve about given up on being nice when I’m reacting to those reacting to me. Sadly this includes to kids. Mind you if the child is really young I’m tolerant, I wave and smile at young kids in the hopes that the next time they encounter someone who is different they won’t be scared and they will smile and wave. I’m less tolerant with older kids, kids who should have been taught about differences.

The most recent encounter happened this past Sunday. My friend Heidi and I drove up to Toronto and met with our friend Joanne to partake in a Sunday afternoon ball game. It was the Toronto Blue Jays vs. Boston Red Socks. As we took our seats and waited for the game to start a family sat in the row directly in front of us. There were a number of adults and two kids, a boy and a girl. Typically as soon as I see kids I know I’m in for having to put up with something. Whether it’s just a few glances, snickering, remarks, and/or outright gawking. The little girl took maybe a look or two but for the most part watched the game. The boy who I assume is older took the other end of that spectrum and spent the game on and off outright gawking/staring.

In a large social setting such as a ball game I tend to do my very best to ignore the child as I don’t really want to ruin the experience for myself or those around me. However as the game dragged on it became rather annoying and upsetting to me that I had to be subjected to this kids stares. You would think after a couple of hours I’d become less interesting and you’d expect the kid to focus on the game. Sadly the opposite became true, as the game dragged on and on, the child seemed to focus more on me than on the game.

As I’ve said earlier I’m not very tolerant of kids I feel should no better, and having been sitting in the same area for hours on end I got really tired of it and decided to make a gesture towards the kid. I used the universal symbol for “fuck off” I stuck my left middle finger up at the kid.

It was at this time Joanne asked me what was up. She noticed my gesture and she then became aware of the child’s behaviour. I asked Joanne three questions today about this incident mostly because I wanted her words here and not my version or how I saw it.

Q1: Wen did yo first notice the kid at the game staring at me?

A1: When you told me, I started to notice it.

Q2: How did it make you feel?

A2: Angry and disgusted.

Q3: What action did you take?

A3: Put my face in front of yours and told him to stop gawking and turn around and watch the game.

Joanne and I talked via text later that night and I could tell it was still on her mind. She felt the need to apologize for the actions to which were in no way her fault. It’s a common thread I’ve noticed with my friends that THEY apologize to me because other people are staring. Joanne and I have been friends for a number of years but sadly because we live in different cities it’s hard to just get together and hang out. Thus she hasn’t been with me out in public a ton and been in this type of situation with me. So I wanted to ask these types of questions to another amazing friend I have who has been out in public with me a ton in the last few years. My friend Karen, we’ve been friends since high school. She was really the only person who invited me over to her house. We had lost touch after high school and it’s only been in the las 7-10 years where we’ve reconnected and become closer. I sent her a text this afternoon asking very similar questions of her as I had asked of Joanne.

Q1: Can you think of a time when we were out together and you noticed someone staring, laughing, or otherwise noticing my difference?

A1: One that comes to mind as sadly I notice it most of the time we are out.. But the one was the night we were eating at Jack’s and that little prick of a kid actually turned around to stare.

Q2: What action if any did you take?

A2: I believe I switched sides and came to sit beside you and we both gave the kid a dirty look and said loud enough for the parents to hear to do a better job.

Q3: How did it make you feel?

A3: It always makes me angry and upset when I notice people staring etc. Angry because it’s rude and if they are curious come ask politely don’t just stare and sad because those narrow minded people will never know how incredibly awesome you are.

I’m not going to lie, most days if I could work from home and avoid having to subject myself to being stared at I would. Being different isn’t fun, it sucks, when I’m out with friends I just want to let lose and have fun but most times my fun time is muted by the fact that as a society we still think it’s ok to gawk at those who are different.

I hope that kid at the ball games realizes at some point what he did isn’t cool. I suspect that he told all his friends that he saw a monster at the baseball game because until we change the narrative of what difference and beauty is I will continue to be the villain. I. Not a victim, but I am a human being who is tired, tired of being ugly, tired of having to be stared at, laughed at, or snickered at every single time I leave my house.

Trying to look up

I want to share something that I’ve carried with me since I was a child. Something I’ve been giving a lot of thought to over the last month or so. Something that when I saw the above quote for the first time I nearly cried. The first time I saw this quote was on March 14th, 2018, the day the world lost the greatest mind of our time. One of my biggest regrets is that I will never seem him lecturing at The Perimeter Institute. This amazing research place is not far from my home and Dr. Hawking has visited several times and allowed his name to be used for one of the buildings. He was an extraordinary human who’s ability to see the world in a way no one else does is something I admire, I admire the legacy that he leaves for us to preserve.

The start of the above quote is something I feel is easy to think but hard to master. I was out a month or so ago with my friend Amanda, we were at Chapters doing our thing and we left (as one does), about a day or so later my friend Krissy texts me to let me know that her Boyfriend Brian’s parents had seen me. I’ve met his father but I honestly don’t recall seeing him there which isn’t a surprise to me, I’m horrible with remembering people, names, and their association to me. Her text pretty much relayed the message from his father that read “…smarten up and look up” after I responded it’s a bad habit fro childhood she responded with “…you don’t look up often, even Brian said that”. She’s 100% right I never realized that other people took notice.

There are two main reasons why I’m perpetually looking down, one practical the other truly is carried from childhood and has stuck with me.

First let’s talk about the practical reason; I’m clumsy and at risk of just falling over at any time. Have shitty eye sight and horrible hearing/balance makes navigating my surroundings a challenge. Any changes in texture of the ground I’m walking on, any chances there is debris laying around, or any chance for uneven surface gives way to anxious footsteps. I get around a lot on my own and I’d rather not take a fall in public so I tend to keep my eyes down to ensure I don’t take a misstep. When I’m with my sister I rely a lot on her and tend to grab her arm for safety but I can’t take her everywhere I go so I just look down and hope for the best.

And secondly the one I’m sure I’ve talked about before is one I’ve carried with me since childhood and probably plays more of a role then I’d care to admit. <takes deep breath before writing> before I continue I feel it’s important to note that I’m not trying to throw my mom under a bus here, I love her and although I wish she had handled things differently I know she did the best she could given her upbringing. With that said when we used to go out in public and there would be people walking in the opposite direction sharing the same sidewalk she would instruct me to get behind her and keep my head down. This would happen when we were walking, if we were out shopping, pretty much any time we were out in public. I know this wasn’t done because my mom was ashamed with the way I looked but instead was done because she didn’t want me to have to deal with assholes who would point, stare, laugh, and make comments, it got to the point where she didn’t need to utter the words, it became what I did to shield myself from the cruelty of others, something I still do to this day. Because hiding is a lot easier than having my shield bombarded, it’s thinned out as the years have gone by, truly doesn’t take much for it to fail. Unlike my favourite Sci-Fi shows there is no recharging this shield so I preserve it as much as I can.

The conversation I had with Krissy has been stuck in my head since we had it and I’ve tried hard to be better at looking up, making eye contact with people but I’ve not mastered that yet, not sure I ever will. But like Dr. Hawking says “….it matters that you don’t just give up”

Getting to know me pt. 2

I’ve previously discussed my condition(s) their names and what about me is physically different but today I wanted to talk a bit more about how much I can see and hear as well as something I haven’t really publicized.

MY EYESIGHT

First, let’s talk about my eye sight (or lack there of). I don’t know the actual visual acuity I have but my next visit to my ophthalmologist I do mean to ask her. Growing up I saw some eye doctors at sick kids but my vision never seemed to be important. One of the known identifiers of one of my conditions is that I do have a dermoid cyst on my right eyeball. Sadly that’s my “good eye” so that kind of sucks. This cyst doesn’t impede my vision but the type of Cyst that it is can have any number of things grow from it. In the last year mine has suddenly decided it wants to grow hair so every month to every 3 months I have to go and get this hair plucked. It’s as painful as you are imagining even after she throws in some freezing drops. It’s better than the painful hair in the eye feeling which is what I have to deal with until I get in to get it plucked. Aside from the cyst I also have Photophobia which essentially (if you didn’t click that link) is my eyes are stupid light sensitive. If I go out when it’s sunny my left eye auto closes and I squint with my right. I have prescription sunglasses which help, they are as dark as they are legally allowed to be. Which isn’t dark enough for me but it does help. In winter I will suffer from snow blindness which makes living in Canada fun! I enjoy dark environments as artificial lights also bother me. I’m lucky at work that my workspace can be in a lowlight area. Even at home I tend to not turn on the bathroom light or any light when I get up early as I can see better in low/no light. Street lights and oncoming car lights when I’m a passenger also really are hard for me to deal with. I also suffer from a condition called Nystagmus this isn’t something that is common with the condition(s) I was born with and I’m unsure how long I’ve had this but I suspect it’s been since I was an infant. Most people with this condition can’t tell that their eyes are moving and for the most part on a day by day basis I can’t either unless I’m actively trying to stare at something than I can feel that my eyes are moving. When I’m exhausted or my eyes are stained sometimes they stop moving at which point I tend not to be able to see anything much at all and it’s time for bed! My eyeballs are also misshapen and the surface of my eyeballs resembles that of a golf ball. I need to put eye drops in frequently as when I blink I don’t lubricate my eyes as well as others. When I was younger I never blinked and actually slept with my eyes open, I’m happy to report this is no longer the case!

With my left eye I don’t see much, when I go for an eye exam I can’t even see that giant “E”it appears as a black blob. If I know you I can generally tell who you are by your overall shape but if I were to meet you for the first time it would take my left eye a while to see you. I can see most big objects, I can see colour and light but mostly everything is horribly out of focus and fuzzy. I’m legally blind in my left eye.

With my right I can see ok, things are in focus when I wear my glasses but I can’t see fine detail and the font size I’m comfortable with is big boarder in on huge. I can’t see street signs unless I’m right on top of them and if it’s sunny out I can miss big things like cars. If I’m with a friend or my sister I tend to have them guide me when out in a parking lot during the day or if we are going over uneven ground as I can’t tell if I. About to step somewhere dangerous. My sister reads all the labels I need to read, and my friends read me the menus at fast food joints because I can’t see them and sometimes even dinner menus. As I get older my vision loss will become a real issue and I will consider getting a guide dog. I wish I had had one the other night walking home from the bus stop a ways from my house because I had the hardest time navigating the sidewalk and ended up taking a cab home the next night.

MY HEARING

I’m deaf in my left ear. I wasn’t always, before I was 16 I had some hearing however after I was home and pretty much recovered from my jaw reconstruction me and my family noticed I wasn’t all that stable on my feet. I was always considered to be clumsy but this was way more than that. The turning point to me that something was wrong was one morning getting up from the dining room. Table after eating cereal I wanted to make a hard right to head to the kitchen which was behind me. I had sat with my back to the kitchen. Instead of right my body kind of went straight and to the left, I fell, broke the bowl and broke an ornamental big ass elephant thing my mom really loved. My mom made an appointment with sick kids where they did a hearing test, at first they thought maybe there was some wax build up. So after having wax vacuumed out of both ears they ran the hearing test a second time. Let’s just say they didn’t like the results the second time around and they decided exploratory surgery was required to find the answers. Not sure how long between the test and the surgery but they did go in and found that the bone graft they had put in months ago had pinched the ear canal shut thus rendering me deaf in the left ear. No hearing aid was going to fix that so I had to cope with that and fall a few more times. To this day I still kind of fall over. I have moderate hearing loss in my right ear but I’m not deaf. As someone who is hearing impaired I don’t do well in crowds or noisy places. If I’m walking with someone I will automatically walk on their left so that I can hold a conversation. In groups I tend to just shut down and not participate because I can’t hear 90% of what’s going on. My sister again is awesome and even though I think she is lying she says she never gets mad if I ask her to repeat herself 6 times (think that’s my record). I will also agree to shit I didn’t actually hear simply because I don’t want to feel like an ass for asking someone to repeat themselves. My sister warns me that one day I will end up agreeing to something I regret, I say probably but I will deal with that. To be honest as long as I can still hear music through my headphones I’m ok with my hearing loss. I don’t honestly know how you all deal with such a noisy world!

Something that I also have to live/deal with is a brain tumour now this sounds scarier that thankfully it is. In 2012 I went to my ENT specialist with some annoying symptoms. He noticed my nystagmus and asked if this was congenial. Not knowing he decided to order a CT scan and an MRI. I went back after CT results and that’s when he told me that there was something to be worried about but that he had made a referral to a neurologist. Nothing like the words “brain tumour”to wake you up. I had gone to that appointment like to all of my appointments by myself. Probably a week or less later I was fighting a nasty cold and I had stayed home from work, I was in bed when my mom comes in my room to tell me there is a phone call from a doctor. I didn’t think much of it but I answered, the lady on the other end said she was calling from the neurologist office and was telling me my appointment to meet the neurologist was the next day. I really got scared, usually if you get an appointment that easily something is horrible wrong even though with other specialists I was also pretty lucky and never had to wait long. So I called my boss to report that I was going to miss a second day of work. I went and he confirmed that I did have a tumour but he didn’t think it was cancerous but that we’d have to wait for the results of the MRI that was scheduled for the week after. After all of that I learned I have a benign Lipoma tumour situated in my corpus callosum. I have regular MRIs and visits with my amazing neurologist. These types of tumours can grow but mine seems to be stable at 3cm x 1cm and it won’t be removed unless it does grow.

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