Feminism, Guest Blogs and Featured Spotlights, Kerry's Causes, SoCS

So Far, So Good #SoCS

International Women’s Day … World Kidney Day.

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I am lucky to be a woman in 2018 I realize. I am lucky to have one working kidney, rather than my two old damaged-beyond-repair kidneys.

Women have come so far since the 1920s. My kidney transplant is working, still after nearly 21 years, so far so good.

I realize all this, as I’m watching Downton Abbey for the first time. I found the series with descriptive track, which I first needed to keep up with all the characters, but now I like for facial expressions and such.

These aren’t available on Netflix with any audio track, though a couple shows (mostly Netflix originals) do have that.

These are recorded right from British television, one episode even with the commercials left in.

We’re coming to a time when audio description, on TV and in movies, isn’t quite so rare as it once would have been. Still, it isn’t common enough.

I want to demand audio description for movie theatres and for television, but it all takes time. People turn on TV and suddenly hear some odd extra voice chirping at them and are taken aback at first. It isn’t nearly common enough.

I recently began to see a new commercial for Diet Coke and wondered why they were choosing to show a new ad. Why now?

Some actress saying how if she wants to have a Diet Coke, she will. I admire that attitude, but what was I missing?

The answer is, I was missing the fact that it isn’t only the regular Diet Coke they are advertising. Apparently, they have four new flavours. I was told this by sighted family. Otherwise, I never would have known and they never would have caught my attention Coke.

I know, if most movies and shows still don’t have audio description, commercials won’t be any more likely to have it, though I have heard of a few. Either way, without specifically speaking about the fact that it isn’t just the usual Diet Coke they have to offer, someone without sight won’t know. I am a small minority of Coca Cola’s customer base, I realize, but I think I deserve to know these things, as insignificant as it might sound.

I totally thought about phoning Coke’s 1-800 number and complaining, letting them know this is discrimination and all they need do is verbally mention the new product they’re offering, but really I hold down a little on the growing activist part of me that is sick of living with things as they are. I am sure I’d only get one of those automated messages and be told to press 1 for…and 2 for…

I might still. I would also complain. I don’t recommend the Cherry, which is flavoured with something that tastes like pepper, a heated after taste that makes it undrinkable.

And so, your hard drive space is low, is the message my laptop keeps repeating to me. I get a notification of lack of space on my phone regularly, but this one is new. I am no good at clearing out my computer/phone. I let apps and files build up.

Wow, this post was supposed to be about one thing and it went a totally different direction. And so it goes.

Stream of Consciousness Saturday, #SoCS

We’ve come so far, and yet… And so on and so forth.

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Kerry's Causes, Memoir Monday

Ordinary Miracles: Part One

It’s not what’s often seen in the movies or on television, the woman screaming bloody murder and, “I WANT DRUGS!!!”, as doctors and nurses all around her yell: “PUSH!” – at least, not in my sister’s case. It wasn’t exactly what I’d pictured. It happened so fast. It felt like a blur, but a vivid and memorable one. It was special and it all seemed to happen as it should.

She was quick about it – my sister, true to form, had the baby out before any of us could blink. So quick in fact, it was like we were all almost late to the delivery, including her. I knew it would be a boy, just as I knew it would be a girl for my brother and his wife before. Everyone always says they just had a feeling and I did, I just knew it. One moment he wasn’t there, just this concept of what he might be in our minds, and the next he was out and a part of our family.

I think, as close as we are, she mainly agreed to have me in the room because she could be assured I wouldn’t see anything. One perk of having a sister, blind since birth, was that having me there wouldn’t make her feel any more embarrassed or exposed. We were expecting a labor lasting hours. I was prepared for a marathon. Instead, it was a sprint for my older sister. It was a relatively easy labor, as labours go.

That August day, my sister and her husband awoke in the early morning, to the alarm clock: him to get ready for work and her to labor pains. She assured him he could and should go to work because maybe it was only false contractions. The first stage of labor could take hours that she preferred be spent at home. However, within the hour the pains were so intense, she called and ordered him back immediately. I was awakened at 6:00 a.m. by the startling sound of the phone. She was a few weeks early, ahead of her due date, but I wasn’t totally surprised.

I was honoured to be asked to be a witness, one of few, to the birth of this child who’d been so desperately wanted, yet at such a high price and with so many intense struggles and plenty of tears. The miracle of birth is unmatched in its beauty and magic, yet it can seem like the most natural and ordinary of life events for people, all around the world, every single day. This isn’t the case for everyone. It hadn’t been so easy for my sister and her husband.

I was there before the mother-to-be. As I sat and waited for them to arrive, flashes of my sister unable to make it to the hospital and giving birth in their car, at the side of the road flitted through my anxious mind. Leave it to my chronically late sister to be late for this. As I heard her being wheeled passed out in the hallway, my fears were put to rest. I hadn’t really been waiting long, but it sure felt like it.

As I entered the Labor and Delivery Room, the nervous father-to-be had only just spilled his bottle of Diet Coke all over the floor. In his excited frenzy, the cola he’d brought in preparation for any presumed hours of labor and a possible diabetic low blood sugar had exploded, at a most inopportune moment. He was scrambling to clean up the sticky mess while I held tight to my sister’s hand in his place, none of us realizing how soon it would be all over. She squeezed as she fought through the contractions, vowing to refrain from any pain control or epidural. I wondered how her pain threshold would hold up against hours of continuous, growing, and building agony, but within a very short half hour or so, he was out.

All the chaos and the things that could and did go wrong: doctors showing up late (not to mention the parents) and with Coke spills and alike, I barely got to take it all in. I could only imagine how the experience felt for the two of them. She’d pushed through her contractions, squeezed my hand, and made very little sound, nothing like I’d learned for years in the media. Suddenly, after only three hours from when it all began, there he was.

As easy as this all sounds, it was really only fair to them, due to how difficult it was to actually arrive at this point. The struggle and the fortitude of the two of them, in dealing with everything they had to bring him into the world and into our lives is something truly remarkable. I witnessed it all from my position as sister and housemate for a good chunk of the time. They had been trying for a baby since becoming man and wife, and it had been the longest three years of their lives.

Infertility is becoming more and more of an open subject in our society today, with friends and family, in the community, and through media coverage. It is talked about, not just behind closed doors, unlike years ago. This allows for much more discussion and the reluctance to speak about the many struggles couples go through becomes a thing of the past.

Having a baby – it all seemed so normal when teachers spoke about it in sex ed. It was what was supposed to happen, right? Well, when it doesn’t happen like that, women are faced with the fears and the questions that medical science must try to address and alleviate, such as:

What’s wrong with me?

Why can’t I have a baby like other women?

It feels like a crippling burden of failure, that I am not a real woman if I can’t do what a woman is supposed to do, was made to be able to do. To be a parent is a deeply entrenched and unbelievably strong instinct, from what I’ve seen and felt up close. I felt it too, but can’t yet see how it fits into my own life. Being blind presents a whole new set of concerns and fears. Sometimes the answers aren’t as simple as whether or not to have a child. I struggle with this in my own mind, yet still I am left able to relate to my sister and her husband, and their own situation, in my own way.

I wanted, what my sister desperately wanted, for them and their need to start and grow a family for themselves. The pressure of that can be a very great weight. I saw it and felt it in the words they spoke and how they spoke them. I felt it in the air after their wedding and over time, as I shared a house with them for the first few years of their marriage. I saw it all up close and I yearned for the success of this most important of ventures, the most important they would ever face together. Young newly weds aren’t usually tested so early on as to the ultimate strength of their relationship.

Soon came the pressures of doctors visits and monitoring cycles of ovulation, or lack thereof. It was a lot of information, trying to learn all about infertility and its causes; how sometimes there is an explanation and other times it is simply known as unexplained infertility. It really can’t be seen as one person’s problem or fault. I see so easily how these fears and guilty feelings can cause a rift between an otherwise happy couple, so eager to experience parenthood and to make a child, a part of both of them. It’s sad and, like financial problems in a marriage, the intrinsic need to have a child can be the one thing to drive a wedge in a loving relationship. this wasn’t going to happen to my sister. We as a family weren’t going to let them be disappointed and left empty-handed. I wanted this as much or more than I’d ever wanted anything for myself.

It is cruel how much it costs to get what comes so naturally, free and clear to some people. It feels like paying for oxygen – getting pregnant shouldn’t need a category in the budget, where a couple who works hard and only wants a family has to scramble to come up with the money to pay for medications and the cost of infertility treatments. Not everyone has the resources and the giving nature and spirit as we have in our family, as they had in our parents. Our parents are indescribably generous and kind. They’ve worked hard for many years to give their children the things we’ve wanted, the things they’ve wanted for us since we were born. They made it all possible.

However, along with these gifts there comes the inevitable landslide of guilt and worry. As the cost began adding up, thousands and thousands of dollars, so did the feeling of:

“What if it doesn’t work and all that money was wasted, with nothing to show for it?”

As the weeks and months of medications and treatments passed, the pressure built. On one such occasion, I recall hearing my sister shaking uncontrollably with sobs of despair. Such a thing rocks one to the core and I hurt beyond explanation for her that night. She feared failed rounds of IUI (Intrauterine Insemination) – a procedure where sperm is injected directly into the uterus. Had that all been for nothing?

They were lucky to find a very supportive and capable fertility clinic. When they were there, they felt heard, understood, and taken care of. All the trips for blood tests and ultrasounds and the disappointing phone calls, with no baby – it was all starting to add up. Adoption, child fostering, or a life with no children flashed before their eyes I’m sure. Was all of this worth it?

When the IUI attempts didn’t work, the next logical step was to try IVF (In Vitro Fertilization) – where the sperm is injected directly into the egg, which is then inserted back into the uterus. She went through all the necessary steps, the needles she gave herself, often helped along by her husband, and the hormones. All this lead up to a summer of hope and disappointment and pain. We all learned of the existence of “Ovarian Hyper Stimulation Syndrome” – a condition where the body produces, with help from all those medications, many eggs for possible fertilization. In my sister’s case, more than thirty were produced to another woman’s one or two – with this, the ovaries become over-stimulated, resulting in extreme illness. She appeared six months pregnant, almost at once, when not even confirmed to be so; all that fluid, released by the ovaries, began leaking into her abdomen. This is, however, a positive sign of a successful pregnancy.

That same summer, I was told by a friend of her first pregnancy and I was left with so much joy in my heart for her, yet so much anger that so many women were seemingly able to become pregnant so easily. Why then was it so hard for others, just as deserving of a baby? Life seemed horribly unfair at that juncture.

Then, a glimmer of hope; a call from the clinic with the blood results showed good numbers, indicating optimal chances for a positive pregnancy test. My sister appeared to have what she wanted and what we all wanted for her. It was finally happening – it was necessary, at such an early stage, to monitor the numbers and make sure they continued to rise. Every few days she anxiously call and things looked good; yet, things aren’t always meant to be.

When a pregnancy isn’t meant to be, it’s probably for the best, but which makes it a tragic loss nonetheless. I sat there, while our inherently positive and optimistic mother comforted my sister through her tears. I was off to see a part of the world I had always longed to see, a trip of a lifetime with an old friend, while my sister and her husband were left behind to deal with the reality of their situation. They’d had a baby for a week and lost it, before most would even know they were pregnant. I left the country wishing them all the love in the world to recover, move forward, and to begin to look ahead to brighter days.

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A Day in the Life

Last Monday I wrote about:

The Horse and the Bird.

To answer this week’s question for the:

Redefining Disability Awareness Challenge,

I will run through a typical day in my own life and you can judge for yourself what the answer to the following question is.

***

Q: Are your activities of daily living affected by disability? If you are comfortable, share a little bit of your daily routine.

A: I am not uncomfortable, but I just wouldn’t want to bore any of my kind readers, that’s all.

🙂

If you know me or how I do the little things, that fill up my day, then please feel free to read on with another of my many blog posts, such as this one:

Ripley’s Aquarium of Canada.

If you are at all curious how I cook, shop, or clean then please stay and read on …

To me my day is often full of repetitive tasks and common activities, all such as though I wouldn’t imagine anyone would be interested. However, in recent weeks I have spoke to people who have said that for people who can see, it’s the everyday tasks and how they are performed without sight, that are the most wondered about.

How do I brush my teeth? How do I do my laundry? How do I get dressed?

These are the things someone with sight, who can not imagine how they themselves would undertake such things. These are the questions I have received and that are often asked of someone with none.

To me they are simply the things we all must do to be presentable and to function in the world, but I am able to admit when I need help doing them or when having sight would make it easier to be able to perform them.

I wake up and I can not look out the window to check the weather for the day. I have a cat who needs the litter box changed and a dog who must be let out first thing. This gives me another reason to step out my door to check for air temperature, sun or lack-there-of, or if the deck is wet from a night’s rain.

I keep my shampoo and soap in a certain place in my shower and recognize the feel of the bottles by touch. It is, perhaps more necessary, to come up with systems for remembering which bottles are which and where I will be able to find them again the next day.

I use my fingers to squeeze out the toothpaste. I don’t spend hours on my hair or putting on makeup, but who knows how much time I would spend on these things like many girls do, if I could see my face in the mirror.

Mirror Image, a post about how I see myself without actually being able to see myself.

There are App’s for announcing the colours of my clothes, but I have a good memory and know my own outfits by heart by the shape of the neck line or the material the shirt is made of. I have collected tips on fashion from my sister and hope I go out into the world with at least my own acceptable style. I don’t walk out my door with my shirt on inside out or two different colour socks, not much more than anyone else anyway.

I pour my juice with a finger placed on the rim of my glass, stopping when the liquid hits it. With hot coffee this is done with extreme care. I cook my breakfast, lunch, and dinner with the utmost caution and diligence. I am extra nervous of burning myself on the stove, perhaps holding me back from cooking as many foods as some do, but I do not starve. Perhaps cooking is just not my thing. It is not everyone’s thing.

Shopping requires getting to the store, unless ordering from one of those grocery store sites online, often more expensive and somewhat lacking in available choices. This means I utilize my family’s help in getting there. Often families do their grocery shopping together, but when I do it I often feel like I am failing at going for my own independence.

There are customer service employees to be found in every grocery store who are there to help anyone who requests it. They would help me pick up anything I wanted, but I prefer to shop with someone who knows me and the food I enjoy. It makes trying to explain what I am looking for much much easier.

I have labels on my stove and microwave, allowing me to find each button and press the right one. These days burners are flat and difficult to feel, but luckily I still have one of the older stoves. Modern day progress isn’t always for the better.

Sometimes I play “guess what’s in the mystery can/jar” and I may lose. It’s a good thing I enjoy surprises from time to time.

🙂

I am extremely comfortable in my own house, where I know where everything is. When in my own house I can forget the uncertainty and unpredictability too often found in the rest of the world.

Of course even I move my own things and forget where I put them. Not having someone else in the house makes it inconveniently difficult to have anyone else to blame when I am at a loss for a particular shirt I wanted to wear or the last can of Diet Coke.

🙂

Who moved my…oh wait…yeah, that was me.

I use my tiny bit of remaining vision to sort the darks and lights. Again, my washer is marked with braille or tactile stickers. I have had a surprising lack of laundry disasters, except for one involving bleach and a pile of my sister’s favourite red clothes. Again, I ask her for her pardon on that.

I like to keep my things in the same place and to keep clutter out of my path. This is common sense and safety is important. Anytime I can prevent possible tripping, bruising, or other accidents I do.

Dusting, mopping, sweeping, and vacuuming are easy to put off when I could be reading or writing instead. Washing windows and cleaning bathrooms are not my idea of a good time. I don’t see the dust oftentimes and I already established I do not need a clear window to see what the weather is doing. I am not living in a spotless home and I am sure I have room for improvement. It can be easy to avoid these less than enjoyable chores when you don’t see each speck of dirt and every smudge.

I do love the smell of cleaner and laundry detergent. I like the spray mops and I use my hands in place of my eyes. This allows things to slip by me and a helpful eye never hurts. I like visitors and this keeps me constantly working at working at it, on the off chance that a visitor could come by by surprise.

🙂

I make my own bed and I wash my dishes after I eat. I even discover a spot on a plate or pan that an eye may have missed. In that case my sensitive sense of touch works to my advantage.

I don’t need the light on to find the bathroom or to get a drink of water at some ungodly hour of the night. I have survived through the day and I fall asleep knowing I did my best. We all must learn to adapt to new situations and to live in a way that works for us. I am no different.

Of course I am affected, but although I can never quite escape living a life without the benefit of sight, I make it work as best I can for me. When you realize that you can not run from something, you learn to embrace it. It even makes life more interesting at times.

***

Okay, so you asked for it and this post has ended up being longer than the previous ones. I am happy to answer any other question like it that you might have in the comments.

Next Monday:

Is your work or school life affected by disability? Describe some of these challenges.

Until then … Ask away.

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