Long Month, Long Life #SongLyricSunday

I’m spending this final
Song Lyric Sunday
of 2016, talking about a song that explains something about me.

What best describes me this time of year?

Well, this one is a part of a Christmas from my past, my childhood, which is part of a bigger picture of myself.

The memoir I’ve wanted to write for a long time had certain songs ingrained in the narrative, as so many feelings at specific moments of my life define where I was at various stages of growth and development through the years, filtered through the truths of song lyrics.

This one denotes a Christmas, twenty years ago, one where I was ill and had been for months by December, 1996, on kidney dialysis for six months by that time.

***

A long December and there’s reason to believe Maybe this year will be better than the last
I can’t remember the last thing that you said as you were leavin’ Now the days go by so fast
And it’s one more day up in the canyons And it’s one more night in Hollywood If you think that I could be forgiven…I wish you would
The smell of hospitals in winter And the feeling that it’s all a lot of oysters, but no pearls
All at once you look across a crowded room To see the way that light attaches to a girl
And it’s one more day up in the canyons And it’s one more night in Hollywood If you think you might come to California…I think you should
Drove up to Hillside Manor sometime after two a.m. And talked a little while about the year
I guess the winter makes you laugh a little slower, Makes you talk a little lower about the things you could not show her
And it’s been a long December and there’s reason to believe Maybe this year will be better than the last
I can’t remember all the times I tried to tell my myself To hold on to these moments as they pass
And it’s one more day up in the canyon And it’s one more night in Hollywood It’s been so long since I’ve seen the ocean…I guess I should

Lyrics: A Long December, Counting Crows

***

“The smell of hospitals in winter. And the feeling that it’s all a lot of oysters, but no pearls,” stands out strongly from the rest of the lyrics, but a long long December/year for sure was how it felt.

All that year I had felt like crap and had felt unheard by doctors and a world who didn’t understand, but frankly, neither did I, for a long time before I received a proper diagnosis.

I heard this song on repeat, a big radio hit at the time, driving back and forth to the hospital and by December, 1996 I was ready for that particular year to come to an end, but the song and the memories would always stay with me.

My luck had been bad and I could only hope for a much improved 1997 and beyond.

This song is a snapshot of me at age twelve and it’s only so poignant because I can look back now, some twenty years onward, from that sick girl I was, to the woman I am now.

Sometimes life feels like things will never be better, like we’re destined to always suffer with something, but time does reveal how that can change.

Special “In The News and On My Mind”: Original Bunker Punks Edition, #IStandWithAhmed

Discrimination and prejudice are real. I hear story after story, with discrimination at the core, and I look for signs that it is simply the media, blowing things out of proportion for ratings.

I don’t want to believe any of it of my fellow human beings. I really don’t.

I am a woman with a visual impairment. There are plenty of stories about inequality for both women and people with disabilities to go around. I am right in the middle of it and I would like to think I could recognize it when I see it, to be able to sense someone’s true intentions.

The two big stories this week both involve cries of discrimination and there are criticisms flying from all directions.

First, there’s the story of talk show hosts on The View and the remarks made about nurses.

Second, the case of a ninth grade boy who took a clock to school for a science project and ended up having the cops called on him, for fears of a bomb threat.

I am the first to say I am a fan of nurses and the work they do. The doctors get to go on their rounds and see their patients. They make the diagnosis and prescribe treatment.

It’s the nurses who are the ones to empty bed pans and change catheters. I’ve been on the patient side of this exchange, countless times, and I appreciate them. Believe me.

I’ve had two spinal operations, a kidney transplant, and several other surgeries and procedures. I don’t include this for any other reason, but to show that I support the work nurses do. I wouldn’t have gotten through any of that without the wonderful care nurses provided me with.

This particular nurse read a monologue for the talent part of the Miss America pageant. The View ladies weren’t the first, that I heard, to comment on it. I heard the clip of her and I could not see it, but I thought it a bit ridiculous myself.

Of course alzheimer’s is a terrible illness. This woman is doing good in the world. She probably deserves little of the attention she’s gotten. I don’t know why anyone would enter those competitions in the first place, but she could expect to have people make their comments, as she was on television. I am just as offended by the existence of those competitions as nurses are of the comments made about one of their own. Why would any intelligent, hardworking woman choose to take part in an outdated ritual, when what she does for sick people every single day is more than sufficient?

As for The View, well the name of the show says it all. They are live and giving their opinions. This is not scripted TV. These co-hosts spoke up , in the moment, and you get what you get. So they did not realize nurses use stethoscopes. It was said out of humour and Joy was doing the job that show hired her to do. She is a comedian.

The question then becomes, when is comedy going too far? Who is allowed to say something controversial? I love you all, nurses, don’t forget that the next time I find myself as a patient, but you need to lighten up. I could be offended, all the time, about so many things involving blindness and disability, but I would drive myself crazy. What is someone’s intention? that is the question we should be asking.

In this case, it was scathing, but it was made about a participant in an event that many women find offensive or ridiculous. Joy is likely one of them.

Of course the apology made a few days later isn’t enough for many. Nothing else to be done, but I happen to respect Joy more than I do anyone involved in a show which goes against the feminist I guess that makes me.

Then there’s Ahmed Mohamed, the teenager who dared to bring in his science project. Did the Texas school overreact? Would they have done the same for a white, caucasian student?

It was a clock, but they feared it was more dangerous. A cloak ticks and so does a bomb? Well, okay then.

In the end, he was not in trouble with the law, just a misunderstanding. He was suspended, but has decided to transfer to another school. Can’t say I blame him. I wouldn’t want to go back either. The charges were dropped and so many supporters have stepped up.

President Obama has tweeted:

“Cool clock, Ahmed. Want to bring it to the White House? We should inspire more kids like you to like science. It’s what makes America great.”

Astronaut Chris Hadfield has invited Ahmed to be his guest at the Toronto Science Show. He’s received support from Hillary Clinton, Mark Zuckerberg, and has been invited to come to MIT.

This student is obviously smart and inventive and we need more bright and innovative youth like him in the world. He did not deserve all the attention he received. Why do we, here in North America, why do we have such a fear of other cultures and religions?

Oh yeah, 9/11 right? Too many are sullying the memory of that event and those affected, by using it as an excuse to let their prejudice out without consequence.

It’s a bunch of bull. This problem is deeply imbedded in the western world. I just hope, as we really think about it, that we can do better.

Of course, there will always be prejudice in the world and the media will always be on the lookout for the next big, sensational story. That’s the way it is. Just remember to look for someone’s intent and signs of character. And don’t take yourself quite as serious. There is enough negativity in the world, so much so that we should try to find the good, but criticism, I feel, deserves a place because we will also always want to give our opinions on the things we see going on all around us.

Today I am participating in a Friday addition of my series, which usually appears on Wednesday:

In The News and On My Mind

with others on a linkup.

This can be found here:

http://originalbunkerpunks.com/blog-battle-zone-2/

Patience With Public Perception

Last time, on the

Redefining Disability Awareness Challenge,http://rosebfischer.com/2014/07/15/the-redefining-disability-awareness-challenge/

I wrote about my diagnosis of kidney disease:

The D Word!

Here’s today’s question.

***

Q: How has public perception of disability changed in your lifetime?

A: Okay, so I will try my best to look at this question with an optimistic viewpoint, as much as possible – because although progression doesn’t happen as quickly as I’d like it to, it does happen.

I don’t know if so-called “public perception” has changed all that much really.

Yeah, the optimism is coming…just wait for it.

🙂

All I mean by that is that although conditions are hopefully improving, the question of what the public thinks, feels, or knows logically or through education are all different questions.

I was born in the 1980s and so not that long ago, in the grand scheme of things. In that time, in the US there was the introduction of the Americans with Disabilities Act (ADA), which came on the scene six years after I was born.

Here in Canada, we have:

**The Charter of Rights and Freedoms

and

**The Canadian Human Rights Act

http://www.ccdonline.ca/en/about/

Disability is such a broad and all-encompassing term. It isn’t easy to lobby for every single disability out there.

http://www.ccdonline.ca/en/about/history

There’s a little thing called equal opportunities, which is becoming more commonly known in workplaces, but I still sense a lot of ignorance and discrimination, whether meaning it or not, by employers toward anyone with a disability:

I want to know my obligations. – Canadian Human Rights Commission

Right there!

The fact that the word “obligation” is used feels ugly. I read that and I already feel like I’m an obligation or a burden, just something mandated by the government and forced upon every unsuspecting company.

If so, well what’s wrong with that then?

I should be happy with that, right? The government is taking the necessary steps toward inclusion.

Laws may be the first step, but in many ways, they aren’t the most important one that will make the world a more inclusive place for everyone.

I believe terms such as “obligation” keep things just as focused on the negatives and downsides as my own negative tone of which I promise to keep adjusting.

I may come off sounding demanding and I am, but I am willing to do my part.

I am the first to admit that I am not always a patient person, like with this issue, but I also need to work on speaking up for myself and hopefully I can make it better for someone with a disability, thirty or fifty years from now.

Accommodations must be made, but until our world opens their minds and hearts and sees less differences, I fear this will never lead to the inclusion I dream of.

So what will it take to change the public’s perceptions fully?

Here’s a blog post my friend Steph, fashion and lifestyle blogger for women who are visually impaired wrote about that:

Observing 25 Years of the ADA – Bold Blind Beauty

I think Steph says something very wise in this post. She basically says that discrimination is everywhere, from people who don’t live with disabilities, but disability does not discriminate.

Sure, it’s easy to live in fear and denial. Believe me, I am extremely familiar with these things in my own life.

Fear keeps the public from wanting to take too close a look. If society keeps people with disabilities kept separate in their own schools and clubs and then, even worse, hidden away at home, they won’t have to deal with the fact that we do exist and deserve to have all the same opportunities for work and life.

However, the denial that goes along with this won’t protect them when disability comes into their own lives.

Laws are important and all well and good, but perceptions are a little more difficult to control this way.

You’d have to really get out there, to ask people what their true feelings are on disability, to follow them through their daily lives to see how they might react to certain situations.

I perceive myself one way, but I can’t control how other people will perceive me.

I will still continue trying to make strides in this arena though because it matters.

I do believe things have improved, in the thirty years since I was born – don’t get me wrong.

See, I can be optimistic. It’s just a little more complicated than that.

Sure, I get angry. I grow frustrated that the public just doesn’t understand, but I am very willing to keep the dialogue going.

Anger can work for you. It has propelled some of us in positive ways.

We do progress, as a species, even if we backslide now and again.

I do not downplay or discount all I have mentioned above, all that has been put in place since I was born thirty-one years ago. I even like to think it was, partly thanks to my appearance on the scene, that these leaps forward were made.

🙂

Too presumptuous? Okay, perhaps.

But in and amongst the frustration and the fear, I do have hope. Most people in the public are curious and kind. They don’t purposefully go out of their way to put up roadblocks for those of us with disabilities. It’s just that we need more than pity or good intentions. We need awareness and action.

I will admit, I’m not the first person to know all about public policies and government initiatives, but I do know about what it’s really like to live with a disability, in a world where I am in the minority.

The public does want to move beyond the fear and the denial; or at least, that is what I tell myself.

We must focus on what we can do, disabled or not, instead of what we can’t.

***

What can I do to help this process along? I ask you, the public!

Public…are you there?

(Crickets.)

🙂

Hmmm. Awkward!

Well, in the meantime…check out:

The Redefining Disability Awareness Challenge on Facebook

And maybe fifty years from now we won’t need to have a Facebook page at all. Maybe disability won’t be such a big deal any longer. Or, maybe, awareness will always be a necessary and an important thing? What do you think?

Next week’s question is a variation on this weeks’:

How has your perception of disability changed in your lifetime?

Oh, how indeed.

The D Word

Here we are and we’ve arrive at the month of August and more

Redefining Disability awareness Challenge questions.

Last week I got my parent’s side of the diagnosis story and how it all began:

Diagnosis – Piece of Cake!

But I also mentioned, at the very end of the post, that I would be starting to look-back on the part I could remember.

***

Q: How has your life changed as a result of that diagnosis?

A: That diagnosis,

(LCA)

was my life, my normal and my reality. I don’t remember anything different.

So, as for how my life has “changed” – it hasn’t. It’s an ever-changing state of being, of course, but I do the best I can with the life I’ve been given.

That is why I’ve decided to move on with describing the diagnosis of subsequent conditions I can recall. This allows me to get a better sense of what my parents dealt with with me and my brother.

Of course, that was from the perspective of a parent. Every parent just wants to know that their child can and will have a happy and productive life. Once they educated themselves, all there was left was to take the steps they could to give us the best chance at that happiness.

This is why I made out as well as I did for the first several years of my life.

Education and socialization were issues to be faced and I was able to find success in both, to varying degrees.

I visited the eye doctor very rarely, as there was really no need. That may sound strange, but as a child I was healthy and I lived my life, like any other child.

My level of visual impairment was stable.

***

I felt the cool, smooth floor of the lounge/dining hall against my cheek. I don’t recall which camp activity we were engaged in, as to why I was lying on the floor in the first place, but this gave me the perfect opportunity to give into my exhaustion.

Nausea gripped me. I was eventually given some sort of children’s Tylenol.

All down the hall of my particular girl’s cabin I could hear friendly chatter and laughter, lots of fun to be had, but I wasn’t taking part.

I stayed in my room, in my bed, racked with the most painful of stomach cramps. I was away from home and I was afraid.

“Are you feeling sick?” asked an older girl.

“My stomach really hurts,” I replied.

“It’s okay you know,” she said, patting my arm reassuringly. “It’s normal. It’s what happens to girls around your age.”

She was referring to what I had learned about the year before, in health and sex ed. She assumed I was experiencing menstrual cramps.

I wasn’t. I hadn’t gotten my period and wouldn’t, for five more years. This was something else.

A few nights later I woke my roommate up, to the sound of me throwing up, on the carpet between our two single beds. She ran to get help from our cabin’s head counsellor.

I spent the final few days of camp, while the other children were out participating in the many sports and recreational activities, in my bed, in that cabin. They brought me broth and crackers.

This was the summer before my sixth grade year, before I would be diagnosed, before my parents would once more see their child diagnosed with an unwanted and unexpected condition.

My life would be forever changed. I would know what it was like to feel scared, ill, and uncertain of many things. I would suffer through more fatigue, stomach cramps, and general nausea. The diagnosis of kidney disease, to add on to the already present visual impairment would add a level of complexity that none of us were prepared for.

As I look back, that was the summer it all began, but had been going on even earlier, even as I was unaware of any problem.

Twenty years ago seems like such a long time, as I look back in reflection, and yet not. I can say I learned a lot about myself and how to appreciate life, from the age of eleven or twelve, of which I may not have learned otherwise. That, at least, is what being diagnosed with any of these things can offer in the way of positive life lessons.

***

The Facebook page is:

The Redefining Disability Awareness Challenge

For next week’s question:

How has public perception of disability changed in your lifetime?

I have been reading up on this issue lately and will be back to answer with my thoughts, next time.

Diagnosis – Piece of Cake!

It’s a little over a year now since the launch of:

The Redefining Disability Awareness Challenge,

on Rose’s blog.

I would find it not long after and make the decision to join in here.

One year later and another summer has arrived. I have been skipping some Memoir Monday posts, a summer break of sorts, but I am nowhere near out of things to say on the subject of disability awareness.

***

Q: At what age were you or your loved ones diagnosed?

A: This question, I thought, would be better answered by those who remember what it was like at the time. I was only an infant after all.

🙂

I asked my parents to relay the events of those early days. This is what they said:

Diagnosis for you was kind of gradual. First, I thought things weren’t quite right when you were between 2-3 months because you didn’t follow with your eyes like most kids. The family doctor didn’t notice anything until I pointed it out at the end of your 3 month checkup.

It took a week to be sent to an eye doctor and he realized it was serious but didn’t diagnose anything and sent us to a Pediatric Ophthalmologist.

Dr Orton said that he thought it was Leber’s and said that you were visually impaired but he never said the word blind. We waited until you were 8 months old before they put you under anesthetic and gave us a positive diagnosis.

It was always upsetting when we were dealing with doctors, but as a young baby there were few differences.

CPRI

was involved because of a suggestion from other parents of a blind child by the time you were 8 months old and therefore your development was never really delayed. They were very helpful with lots of suggestions.

So first we just didn’t really know a lot of details and were a little in the dark. It was kind of a wait and see.

With your brother, we asked Dr. Orton about him on one of your visits and he wouldn’t even look into his eyes (2 weeks of age). He said that he had to be older before he could tell us. We knew he was blind by our own experience by the time he was 6-8 weeks old. I don’t know if it is better to learn gradually or be told everything up front.

***

These things couldn’t have been easy on them, but the life I’ve had since being diagnosed is proof of how well they adjusted and thrived as our parents. I owe them everything.

This is where I say that, up until now, I have used the RDAC to write about blindness as a disability I have lived with, through the good and the bad times, but there would be more diagnosed, and this year marks twenty years since the second round of diagnosis would begin.

Going forward, I will be starting a new topic on this blog: Piece of Cake.

This will focus on the kidney disease, that would be added to my diagnosed syndrome.

I have wanted to write a memoir for many years about this time. I had the name picked out from that first day I sat at my brailler and started writing.

In the months and years to come, I will be looking back on these turbulent events, through the power of words.

Next week:

How has your life changed as a result of that diagnosis?

Redefining Disability – Facebook

Come check things out over there.

National Disability Employment Awareness Month

Last week I spoke on a strictly medical point-of-view with

Diagnosis and Treatment.

For this week’s post I thought I would highlight the need for integration and awareness, for a cause so important to me: October is National Disability Employment Awareness Month in Canada.

Q: Do you think that its more important to emphasize medical treatment, life skills, community integration, or a combination of these things?

***

A: I am a big fan of not choosing one thing. In this case, just one won’t cut it.

Of course physical health is important. Any medical treatment that is required should not be ignored, whether through denial or fear.

In my case, eye doctors were vital when my remaining vision was in question and in danger.

Yet, there is so much more to the picture than eye health. Life skills and community integration are things that can not be ignored, or suffering and isolation follow.

I can’t express enough how vital my parents were in these elements. Once the medical condition of blindness was established it was time to get on with the business of living.

I do for myself as much as I can and those skills were taught to me as a child, as they were for any other.

Community integration brings me back to the start of this post.

Of course nothing is yet easy and simple. It is important to feel like you are a part of something bigger, community is that something. I know a lot of the work of integrating people with disabilities is still needed.

Nowhere is this as clear as in employment. We are not yet at a place where the numbers of people with disabilities, especially visual impairment, are high, integrated into the community and working alongside.

Integration can be a big and daunting word, for everyone. Both sides need to be able to communicate and play their part, if there is to be any real success. There needs to be an effort put forth by all involved.

My blindness doesn’t have to impede everything. There are certain jobs I could perform very well, if given the chance. This is really only possible because I was once taught many life skills others take for granted and don’t really think about.

The integration is then required to complete the process.

Medical treatment, life skills, and community integration are accomplished, for people with disabilities, in steps, one building on the other until the person is as well-off and well-adjusted as possible.

***

For more information on National Disability Employment Awareness Month, go

Here.

And next week on the

Redefining Disability Awareness Challenge,

What are some significant moments/events in your life that connect to disability?

I am betting I will have a lot to say for that one.

🙂

Diagnosis and Treatment

Last week my parents answered a question about what it’s like having loved ones with disabilities in their lives and what that word means to them,

Here.

This week I will rejoin the discussion once more.

***

Q: What have your experiences been with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?

A: I was diagnosed months after I was born and my vision remained stable for many years. I had the occasional eye check-up, but really I avoided the need for more treatments until my remaining vision began to suddenly and mysteriously slip away, when I was in the seventh grade.

I then found out, rather quickly and shockingly, what it was like to have lights constantly in my face. I would have been bothered by all the stinging drops and bright lights, if it weren’t for the fact that I was having terrible pain behind my eyes and I knew, even at age twelve, I was lucky to have some of the brightest minds in ophthalmology overseeing my case.

By this point I had wonderfully experienced parents who hadn’t been dragging me all over the place for miracle cures to my blindness. I didn’t see or experience a lot of negligence. I received excellent care.

As for my kidney failure I know how unexpected that all was and yet my parents still felt horribly that they didn’t do something sooner. How could they have known? They were raising their two blind children, but the rest kind of snuck up on us all.

***

It took us probably too long to diagnose your kidney disease because we thought it was because of stress and your blindness. Your previous diagnosis hampered finding your kidney failure.

When you feel something is different or not right, you search for the reason. Sometimes it can be a physical problem that can be fixed and it’s done. Other times you get a diagnosis that will affect you for the rest of your life. A diagnosis can be great relief because it explains all of your symptoms and you can focus on dealing with them and getting on with the rest of your life. Other times it can be overwhelming because it predicts possibly even more and complicated problems down the road.

***

Since I lost all that vision as a teenager I have kept the retinal specialist who treated me then. HE is the best at what he does, but I fear a future of undiagnosed and unpredictable vision loss. Things can only be handled with the right treatments and proper diagnosis up to a point.

***

Before I end today’s post I wanted to include something I found earlier, a post on a blog by another visually impaired blogger. It is a post about the topic of disabilities in the media and I know that is a big part of what Rose has been doing from the very start.

So please check out:

Adventures in Low Vision,

and

The Redefining Disability Awareness Challenge.

for more information and next Monday’s question:

Do you think that it’s more important to emphasize medical treatment, life skills, community integration, or a combination of these things?

I think I’ve kind of messed up the numbering of the Awareness Challenge questions from how Rose has them listed, only because I was doing a few in two parts.

🙂

I will try to get back on track or perhaps the numbering system went out the window long ago.

Such is life.