Kerry's Causes, Memoir and Reflections, TGIF

Rare Disease Day, 2015: Ventilation

We got to the hospital, that spring day, not knowing what to expect…

I had just spoken to my brother a few hours earlier and now here we were, waiting for the doctors to come out and tell us what was going on, if his kidney transplant of over ten years was a total loss.

It would be a crazy and chaotic spring that year, five years ago already. How time passes.

After losing Grandpa,

Ruby Red,

that February and something mysterious going on with my brother and one remaining grandparent hospitalized too.

We felt worn out, running from one to the other, the sterile halls became our temporary home.

***

I had my transplant in 1997 and two years later he had his: me from my father and then it was our mother’s turn. Her kidney never seemed to work like the one my father had given me. It was nobody’s fault, hers, or my brother’s behaviour that did it. It just was what it was.

It lasted him ten years though, which got him through his teen years.

Things started to go downhill eventually. He felt sicker and sicker as time went on. He had low energy and found it hard to walk far at all. His blood levels were low and he started needing transfusions. His hemoglobin dipped all the way down to forty-five or fifty. It should have been well over one hundred.

http://www.mayoclinic.org/symptoms/low-hemoglobin/basics/definition/sym-20050760

It all seemed like a blur. He ended up in hospital eventually and the doctors were scrambling to figure out what was keeping his levels as low as they were. We all knew his transplant was nearing its end, but we hoped, he hoped it could be dragged out as long as possible, before dialysis or another transplant would be his only option once again.

Weeks in hospital, second time in one year. He had test after test and this included a bone marrow biopsy. They had tested to find out, if his blood was so low, that maybe he was bleeding somewhere inside, a slow leak of some kind. This seemed strange, but it had to be more than a failing kidney.

***

We had been visiting him in hospital on a daily basis because that’s what we did in our family.

We were used to being in children’s hospitals. Now we were grown, but our family still needed each other. I needed to be there for him.

On that one particular day we were on our way to visit, but he spoke to me on the phone first and was feeling a lot of extreme pain. Something wasn’t right and things went downhill fast.

Within a few hours, between him and the nurses saying something was going on, we raced to his side, but by then he had been taken into the cath lab.

He would report to me later that the pain he experienced that day was the worst he had ever felt, even after years of surgeries as a child.

We were brought into the ICU to see him. The bleed had been found, a tiny coil had been placed in his pelvis to stop it, the cause of the pain he felt and the reason for all the blood loss he’d had in recent months or even years.

We walked into his private observation room in the ICU and were shocked to see the state he was in. The shock of it hit me like a tun of bricks. I expected to hear his voice and instead I found silence, pierced only by the steady push of the machines, breathing for him, as he lay in a purposeful sedition, brought on by the doctors.

I hadn’t been well prepared and never imagined it was that serious. How serious I couldn’t quite grasp even in that moment.

He was silent, unconscious, still.

All I could see was his dark shape against the light pillows. I heard the sound of the ventilator and it hit me. Tears filled my eyes then, the burning, so well known to me, pressed against my eyelids.

We stayed a while, talking at first in whispers, not knowing why.

Then, needing to let him rest, we went for dinner, like we often did.

I felt numbed by the urgency and the unexpected situation we were dealing with. The bleed was stopped, but he was looking at a week in ICU and who knew what else. I faced the fear of losing him.

Would that, could that be a possibility, even remotely?

I had never before felt so scared of that possibility. What would I do if that happened? HE was so much a part of who I was, my little brother, my best ally and the one who knew me best in the world.

I picked mindlessly and miserably at my dinner, but all I wanted to do was return to his bedside, to watch over him and stop any further harm from coming to him.

***

He had a scratchy voice lasting for days, from the breathing tube that day. HE had the nurses pipe some music through the speakers of the ICU for a distraction and something to focus on and help to pass the hours he lay there in that bed.

We stood at his bed, my sister and her husband and myself. HE had been awake, in horrible pain, and then out of it for he had no idea how long. A shock for him when he finally woke up again, when we told him what happened and how much time had passed.

HE would be back on dialysis within a week. The doctors wanted to do more tests that had high risk of the dye used damaging the kidney to the point that, if it weren’t already done for, it would surely be then.

He was confused and on the fence. It was a week of disorientation and at the end of it he was on the way to being on the organ donation list, for the first time.

***

Kidney disease is common enough, but he had gone through something none of us had expected or understood. He must have been bleeding internally somewhere, and then he wasn’t. It had ended, not as quickly as it had begun, but was a slow build and a quick improvement.

He would be on dialysis, three times a week, for the next three years, before the day he would get the call that a kidney was available.

I wrote about Rare Disease Day for the first time last year, only weeks after the first post I wrote for this blog.

My brother is strong and resilient. I know it is hard to deal with medical issues that leave confusion and uncertainty in their wake. HE still deals with this, but it has returned from a serious kind to a slow lingering of symptoms that only he really knows.

HE deals with things every single day, but they are not internal bleeding that turns dangerous. He does well now. HE feels great, for the most part, and doesn’t let things out of his control stop him from living his life.

I admire him for this. He doesn’t dwell on the what if’s like his big sister. I wish I had his view of the world sometimes.

I stopped myself, just short of including “Wind Beneath My Wings” in this post. No need to embarrass him anymore than I already do.

:-)

I will include a link that explains what he is doing with his life now though, the hopes and dreams he has for his future,

HERE.

***

Rare Disease Day, 2015 – Official Video – On YouTube

Tomorrow is Rare Disease Day, 2015 and I will never forget that I could have lost him, five years ago, in a second.

Having a rare disease,

like I wrote about last year,

can be incredibly frustrating, when others do not understand, including the experts who have all the medical knowledge.

I just wanted to celebrate, on this day and every other, that whatever might be our lot in life, I still have my brother in mine.

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The Making of MAGIC

herheadache:

It’s magic when I hear my little niece and nephews say my name and when they hug me and I hold them tight.. That’s the only real magic I know.

Originally posted on Life Is Color:

There’s much to be said for the way we look at things. Our vision is tempered by what we expect to see. Look for ugliness and you’ll find it, the same goes for beauty for both can be found in everything. It is the way we look at things which control what we see and how we see it.

We create our own reality. I know how that sounds; like some metaphysical mumbo~jumbo that seems profound and  wise but an idea that some of us may find difficult to grasp, myself included. Real life is the reality we live with every day. It can be cold and hard and can smack one right in the face.

If I had control of all reality…seriously…I would eradicate war, hunger and poverty, mean people and bad hair days too..all that stuff. Most of us would but that does not make it…

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1000 Voices Speak For Compassion, Blogging, Kerry's Causes, Memoir Monday, The Redefining Disability Awareness Challenge

Indefinable, Undefinable? Definitely

Last week, for Memoir Monday and the

Redifining Disability Awareness Challenge,

I discussed how others sometimes treat me differently in a situation such as dating:

Dating in the Dark.

As a bit of a continuation today, I will be addressing that most complicated subject of labels, language, and stereotyping, which can affect us in all areas of life with disability.

***

Q: Do you have preferred language when it comes to disability?

There is a lot of debate about appropriate language and definitions of disability. Since there’s no widespread agreement, I want to hear as many views as possible.

A: I read an overview, a summary of the newly updated Ontario Sex Ed curriculum on a fellow blogger’s post titled:

The sky is (not actually) falling!

Now this is just for the province I live in here in Canada, but I thought it was rather interesting to include here, as a reference point.

This post is not about sex ed, as much as it is the fact that there is some mention of disability in there.

I often wonder, in my ever-present modest way, what my classmates from years past thought about having me in their class and how it has…well, perhaps “shaped” is too strong a word, but perhaps not.

:-)

But how have they taken that experience and used it when coming across people since, is what I really am curious about.

Along with teaching children about names of body parts, what’s considered good andbad touching, and what to expect during puberty I am focusing here on the newer stuff.

times have changed. Yes, Ontario, it was about time for an update.

Times have changed as far as technology.

Of course not that much has really changed, not underneath the surface.

There were always people of different sexual orientations and abilities. Now is being talked about more openly.

Things like race, religion, gender, and alike are all important, but the things we’re just now getting around to talking about, in any real way, for the first time are coming to the forefront.

It’s only in the last thirty years, really, that children with any significant disability were included in their neighbourhood schools. I am glad I was one of them.

We need to see people of all abilities to grow more comfortable with them, not tuck them away in schools all their own.

(Of course this is just my opinion.)

What’s easiest and seems most obvious is not always what’s best.

To face the definitions, stereotypes, and such we need to put it all out there, to face the discomfort head-on.

I am glad disability is listed in the sex ed curriculum because not every class has a student who is blind in it. I don’t know if having me in their class all those years made any lasting impression or if it affects how they approach things as adults, but I really would like to think so, for a more inclusive society.

I know the subject of what to call someone with a disability is a touchy one. The world clings to labels.

I mentioned this recent development in my province’s curriculum because I suppose I find it easier than talking about the rest of what this week’s question asks.

I have many conversations, particularly with someone who is just losing his sight now.

We talk about what words to use and when to use or not use them.

PWD’s (people with disabilities) is the term he uses and I think of POW’s (prisoners of war) whenever I hear that. Just where my mind goes.

It feels like some strange war of the words sometimes. I don’t know which side I am on, from day to day.

Have a sense of humour, I tell myself. Life can’t always be a fight or a battle. That’s no life to be living.

Why, then, do I have so many conflicted feelings on the whole thing?

I am blind. That is established, but then why do I prefer to use such terms as “visually impaired”?

After all, I don’t like the word “impaired” either.

I guess “blind” is just so blunt and to-the-point, which I am not always very comfortable being.

I feel shame when I use one term over the other. I hate that.

Definitions of Disabled:

**Dictionary.com

**Merriam-Webster.com

It’s like I’m a bomb to be “disabled”, before I go off and devastate everything around me.

Okay, so that’s just me being dramatic and drastic, but that is how complicated this question can be, when I think too much about it, but I believe it is a valid question.

I know, and so do you, some of those words that just aren’t socially acceptable to use in 2015 that once were used with impunity.

Whose to say they are wrong? Where do we draw the line?

I try to answer this question and am left with just as many questions of my own to ask.

I can’t make up my mind and don’t know if I ever will.

***

Okay, so this week, my answer may seem incomplete. That’s just how it goes I guess.

:-)

All I do know is that I feel helpless, unless I am writing here or participating in such things as what I participated in on Feb 20th.

It was:

World Day of Social Justice

And then a group of over 1000 bloggers and like-minded writers, artists, and others all wrote about compassion.

Reflections On 1000 Voices Speak For Compassion

I can only hope for compassion from others, not pity.

Only that people think before they speak and have the best intent behind their words, no matter what they are.

And as for myself…I need to feel less shame, find balance in life, and to remember to smile and laugh about how funny and complicated life really is.

:-)

Have you ever felt uncomfortable with the language someone was using, about anybody? Did you ever not know how to talk around someone, in fear of offending them?

I ask because I never want to take life so seriously that others are afraid to speak to me or feel they must walk on eggshells around me. That’s not living.

Next week I will be away, off on some adventures.

I will be back the Monday after that to speak on any old subject involving this topic that I can think of…and believe me, there are several I have wanted to speak about.

So stay tuned.

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1000 Voices Speak For Compassion, Blogging, Kerry's Causes, Spotlight Sunday

Number 325 and Proud Of It

Sunday here in my little part of Canada and I am still reading, commenting, and sharing.

Hope you all have had or are having a lovely weekend.

:-)

I wanted to include the database where all the #1000Speak participating blogs can be found:

#1000Speak Link-Up (Number 325 and proud of it.)

I also want to continue to make my own little database, listing a blog here or there in a post, if it happens to resinate with me.

This time it is:

To Writers Who Struggle with Self-Compassion

Poetic Parfait captures a universal struggle for any writer and I am loving the name of the blog also: so decadent sounding.

:-)

I wanted, finally, to introduce anyone outside of Canada, who may not have heard of this lady, to Susan Aglukark.

She is a song writer, performer, recording artist, and activist.

She grew up in The North West Territories and has worked for the rights of Aboriginal and Inuit peoples.

She has had a few hits in Canada and the song I wanted to end with, I think, fits the 1000 Voices Speak For Compassion theme quite well.

One turn certainly does deserve another. I hope this thing we have started, I can’t even seem to come up with a word big enough to describe it accurately, will keep on growing and carving a path toward all things compassion.

Until next time…

One Turn Deserves Another – Susan Aglukark – YouTube

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Become One with The Subject of Your Compassion | #1000Speak for Compassion

herheadache:

Compassion and a bookstore. Two of my favorite things.

Originally posted on Everything Indie:

I am writing this post today as part of the 1000 Voices for Compassion campaign by bloggers all over the world. The goal is to have 1000 bloggers speak on compassion today, February 20, 2015 . Here is my contribution to this amazing project.

1000 Voices Speak for Compassion

IMG093I am one person, and my life is small. I live alone with two cats, one IMG_0001whom I adopted as a stray, and the other whom I adopted from a nursing home that sadly had to get rid of its therapy pets due to allergies. (If adopting them was an act of compassion, then it was one from which I profited.) My acts of compassion, like my life, are also small.

I work in a bookstore. Some of my customers use wheelchairs, and some others have “brand new people” in carriages or strollers. It’s a small thing for me to ensure that the floors are clear…

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1000 Voices Speak For Compassion, Blogging, Guest Blogs and Featured Spotlights, Kerry's Causes, Spotlight Saturday

Why We All NEED To Be More Compassionate

herheadache:

Love her reflections.

Originally posted on accidentallyreflective:

What is compassion?

“Sympathetic pity and concern for the sufferings or misfortunes of others:
the victims should be treated with compassion”

Source: http://www.oxforddictionaries.com/definition/english/compassion

Literally, compassion means “to suffer together.”

Unlike empathy (which it is sometimes confused with), compassion doesn’t stop at taking another person’s perspective into account or just feeling that person’s emotions. You feel compassionate, when you also have the motivation and desire to help the suffering person.

You respond emotionally by wanting to understand the situation of a suffering person and you feel compelled to help them.

Compassion Desmond Tutu Photo Credit: 1000 Voices for Compassion Facebook Group

Are we compassionate enough? Why do we only choose to help others now and again and not all of the time?

Would you help a stranger in need if you were running late for work?

There was an opportunity that I didn’t take once. I still think about it. I was driving past a woman…

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