TToT: Spectrum of Splendid Great Yellow #OrganDonation #10Thankful

“The one thing that you have that nobody else has is you. Your voice, your mind, your story, your vision. So write and draw and build and play and dance and live as only you can.”

—Neil Gaiman

TEDxToronto – Drew Dudley “Leading with Lollipops”

I am leading off my list of thankfuls this week with a story about lollipops.

Ten Things of Thankful

I am thankful for a visit with family on a hard day.

Another year of summertime sadness comes around.

How does one provide solace? Flowers? A well written note? How about, a visit with a little baby?

There’s nothing like the sweet face of a baby to make people think of the good, but music playing and memories shared can also help.

I’m thankful for a long coffee/smoothie chat with a friend.

We speak at our writing group, but this was a nice chance to have a conversation, just the two of us.

I owed her a coffee for reading over my short story I recently submitted, but we ended up talking for very nearly three hours.

We talked about writing, cats, and our possibility of ending up the stereotypical old cat ladies someday.

It’s hard when you see family and friends, all coupling up, getting married, and starting families. It’s nice to speak to people who understand how it doesn’t all come so easily for some of us.

I’m thankful for feedback from an editor.

I was fearing my draft wasn’t what the editor wanted or expected, but she seemed happy with things, for the most part.

Could I work on the ending? Well, sure. I do appreciate feedback from an editor and that’s what I got.

Now to think how to end the piece. Hmm.

I’m thankful for a pleasant pitch surprise email.

I saw a call for pitches about the special relationship we have with our animals and I thought (since it’s ten years since my guide dog died) this would be the perfect time to write about her. I sent the pitch out the day before I left to visit the Yukon, more than a month ago. After a few weeks I didn’t think I was going to hear back. I figured the answer was a “no”.

I’d been expecting to hear from that first editor, but coming home to an email from this second one was such a welcomed surprise.

The subject matter is perfect and the pay is not bad at all either.

I’m thankful for a first successful conference call with people I know I’m going to learn from.

There were several of us calling in and it made it difficult to all get a chance to speak, not over each other either. Still, I think this will be good for me.

This organization gets together to discuss the topics that are relevant and might be of some interest.

Then we decide who’s going to write what. I offered to write a review for a book someone has written. I think I can handle that as my first assignment with VisionAware and I like reading and learning about self publishing.

Then I get to interview the writer. I think this will be an excellent opportunity for me to learn some editing skills and how to divide up work, to figure out who is the best person to write specific pieces.

Anyway, all of them seem like highly intelligent and curious people from many different walks of life. I can only benefit from that.

I’m thankful when the pain eases.

After two days of it, intense as it is, I can come out of it on the other side and view the rest of the pain I live with in a new light.

I can learn new lessons from the pain, even after all these years.

I’m thankful for another lovely talk with my neighbour.

We are almost forty years apart in age, but somehow we have arrived at this moment in time with similar outlooks on life, from some of the things we’ve both been through.

We both discussed what we know we deserve and the lessons we’ve had to learn, often the hard way, to arrive at this conclusion.

We are both on our own, sometimes uncertain whether we can do it, but that’s why I am glad we’ve found a friend in one another.

I’m thankful for a reminder of friendship.

It’s really one of those little Facebook friend reminders, but someone chose to share theirs with me.

Our first connecting online, then in person, but it all matters, adding up to the relationship of mutual respect we have today.

Sometimes, when I don’t get stuck reading the battles going on in comment sections of breaking news stories, I really do like Facebook. I like those I follow on it even more.

I’m thankful for a beautiful word from my mentor.

Sometimes, her words of advice or encouragement just completely blow me away.

I needed to hear those exact ones, as I prepare to work on the pieces I’m writing throughout the summer. I need to know other people have faith in me, then to build that faith in myself too. It is all necessary to believe I can do the work I have set out for myself.

I’m thankful for four years gone by.

Somewhere out there
are my family’s Angels.

Another year and my brother has graduated and is on his way into radio and so much more.

Think about organ donation. It isn’t the easiest thing to think about, but it matters to someone.

Low – Cracker

Here’s to all the lost angels, either from suicide or accidents. RIP and you are missed.

All Around Us and Everything Essential #EarthDay #ScienceMarch #AtoZChallenge

Give me an S…give me a C…give me an I…give me an E…give me an N…give me a C…give me an E!!!

What does that spell?

The A to Z Challenge – S is for Science

That is how you spell science, (yes I know…cheesy, but I am certainly no cheerleader) and yet I am dedicating today’s letter to a march, the Science March.

It’s happening, not only in the U.S. on this day, but in countries all around the world.

It’s turned political, but it shouldn’t be about some 45 foolishness, nor any other so-called public servant’s opinion or word as supreme law of any land. We all share this planet. None of us are totally immune. History has shown that eventually, even the very rich can fall from some unseen organism and that extreme weather is more powerful than any of us.

It’s all around us, every minute of the day, and people don’t even realize it. Everything is scientific. Religion is not, should not be the opposite of science. Today’s march shouldn’t be one or the other. You can have faith and believe in science.

Science is not all knowing. Scientists don’t know everything, but I leave so much of it to those a lot smarter than I’ll ever claim to be.

I am here because of science. I feel strongly about the march and wish I had the opportunity and energy to be in it, but I speak up here, even if I won’t make the news with a sign in my hand.

This blog is my hand and Facebook will be my sign and I will hold them both high in all places I can, as I admit that people much smarter than me are scientists who have discovered some of what keeps me alive to this day.

And make no mistake, I am glad to be here…or anywhere for that matter.

One day, at some point in the hopefully distant future, for me to become one with this breathtaking earth (which is worth fighting to protect) and the soil and the trees, like one’s donated organ living on in another’s body, once the dead have passed on.

This one is a little longer, perhaps, than the other letters this month, but I am glad there are those marching for discovery and innovation and every conceivable contribution to humankind and our planet, plus all the rest that’s out there.

I am sure I am not the only one who has chosen Science or Spell as my S word, but my love for science is my own.

Without the invention that is the dialysis machine I would not have made it passed age eleven..

Without the advent of organ donation and transplant surgery I would not have the physical freedoms I’ve had.

Without the innovation of medications that lower the immune system and fight a body that would otherwise reject any organ the system found to be foreign I would not be celebrating my twentieth year with one of my father’s kidneys, one which kept him alive for the nearly forty years before that.

Thank you science and scientists. May God bless you (the God who would give some of us mortals the ability and intelligence to study science.)

***This is also my contribution to
Stream of Consciousness Saturday.

***This is my first year of joining the A to Z Challenge and so I’ve decided to post randomly, as a way for new visitors to my blog to get to know me a little better. I look forward to discovering some interesting new blogs too.

TToT: Crocs, Gators, and Peg Dope – Wil It Fly? #Podcast #10Thankful

I have no philosophical quotes or music to include here, to share, to start my TToT this week.

My head is just so full of thoughts. It feels crammed and ready to burst.

I returned to Lake Erie the other day and I just stood out in the water, up to my waist, and I looked out to the horizon.

TEN THINGS OF THANKFUL

That the podcast is finally out there.

Here is our Facebook page.

If you follow such pages, give it a like. That’s where we will be announcing, every time a new one comes out for now.

We are still playing around with place to host it and such.

Go here to listen to us directly.

Come on. You know you’re curious.

😉

Any feedback is very much appreciated.

For all the support people have shown so far for this project.

Thank you to all of you. This project has meant a lot to me and I hope it keeps going.

I thank every one of you who’ve liked our Facebook page and took some time, out of your busy lives and schedules, to give it a listen.

Hope you found id amusing or entertaining. What did you think?

That someone shared a book with me and it was the best book I’ve come across in a long time.

Kindred by Octavia E. Butler

I heard it was a book about time travel and immediately, my first instinct was to move along, but I’m glad I didn’t.

Time travel isn’t all about science fiction. It means history. I love history.

It also had a lot to do with today and the issues we’re still seeing around matters of racial divides and those who’ve overcome such prejudices and defied those odds.

That I am headed to Mexico for a very special writing workshop.

This just sort of happened suddenly. I received the invite from my writing mentor. She is running the workshop and she made it possible for me to participate.

I will be traveling to Mexico this winter, for a whole week, to learn about writing and literary travel writing.

This is a huge thing for me, traveling so far away from home and family. It is scary, I won’t lie, but at some point, I have to go for my dreams and experience more of the world.

I’ll admit, it’s still far enough away that it doesn’t yet feel real. It’s such a big deal that I am still in some shock that it’s happening at all. Things like that don’t happen to me.

That I have those in my life who support my writing and believe in me, wanting me to have experiences and stories to tell.

I owe it all to my writing mentor, my family, and friends.

It’s months away yet, but I am so excited that I had to share the news on Facebook. Everyone seemed excited for me.

My family know what it means for me and to me, traveling by myself like that, but that I need a chance to grow as a writer and to experience life. They want all that for me and are making it possible.

Also, to my writing mentor, who is in my corner and, as a writer, believes in my abilities.

For another year with a working kidney for my brother.

It’s been three years now, but somehow feels longer.

I guess the whole experience was so new to us all, felt so gigantic, that three years later I look back in wonder.

For my violin teacher’s ability to fix what the music store got wrong.

So, remember, some of you, a few weeks back when I broke a string on my violin?

Well, it took three store employees to figure out why it wouldn’t fit.

So when I got back to my lessons this week, my teacher looked at it and said it was on sideways.

And so, she fixed it, telling me about a product known as peg dope, in the violin world, made for violin peg adjustment.

🙂

I just love these new terms I’m learning. I’m also glad I have a teacher who knows what she’s talking about. No offence meant to those hard working guys in the store, but I think I’ll let my violin teacher replace my strings from now on.

That my mother is a pro at sewing.

I hate bathing suit shopping and finding one that fits at all.

I know, as a woman, I am not alone on this one. It used to be that I needed to find one that would cover up any surgical scars I have. Now I was left with one that tied in the back, right below my head, which was uncomfortable and gave me headaches.

Well, when stores failed me and time became a factor, in came my trusty mother and her sewing kit. She transformed a halter top into a bathing suit where the straps actually now go over my shoulders, instead of around my neck.

For a lovely beach day with family.

Okay, so the weather wasn’t ideal. It was cool and cloudy for most of the day. The sun did finally show itself by late afternoon.

The water was still pretty cold, which didn’t stop my mother. She’s the tough one in the family, but my niece braved it with her. My nephew enjoyed the air mattress as a floating device.

My brother had his handy portable grill and we had enough food and snacks to go around.

I was thankful for that grill, as a makeshift fire to sit around, as a way of keeping warm before the sun made its appearance later on.

There was a washed out little stream up on the beach and a log across, which my niece used as a balance beam. Sand castles were made. My brother is a design man, an artist, and it’s possibly being passed on to his little girl. She also loved feeding the sea gulls, which is something I like to think she got from me. That was my favourite thing to do as a little girl, though now I felt rather uneasy when they were flocking all around our group. I prefer them off in the distance, hearing their cries against a backdrop of waves, but my niece was enjoying having them so close, she could almost reach out and touch them. She even put a piece of bread on her head to see if one would take it. They aren’t that bold.

The water was much calmer than the last time. The birthday cupcakes were peanut butter with Spider Man, The Hulk, and Teenage Mutant Ninja Turtles, for the birthday boys.

We had a bit of vehicle trouble in the family to end off the night, a flat tire, but luckily, the guy who ran the chip wagon knew about flat tires. All and all, a nice day all together.

That I was invited by another blogger to write about

A Day in the Life of a Blogger

Thank you, Life Through My Bioscope, for the invitation.

And there you have it. Lots of big things, memories (old and new), and I couldn’t sleep again last night, thinking over everything that happened this week.

I want to find the perfect quote or song, something that comforts me and something I could look to for confirmation that I am doing all the right things and that it will turn out the way I hope it will.

I just don’t think there is such a thing. I guess I can be thankful for mistakes and for nature and for the lessons of travel and life experience. I can be thankful for anonymous organ donation and for people willing to take a chance on little old me.

TToT: March Winds and April Showers – Lions and Lambs, #10Thankful

“April is the cruelest month, breeding lilacs out of the dead land, mixing memory and desire, stirring dull roots with spring rain.”

–T.S. Eliot

Think this quote has been taken to mean “taxes” more recently, but I like to take the entire quote at its original wording.

Okay, so it’s more snow than rain around here at the moment. Lousy April Fools’ joke if you ask me. That was two days ago you know!

I don’t have a lamb or a lion, but Lumos is still a feline. I’d hoped to have a humorous shot of him to include here, but I seem to have misplaced it.

From the sounds of things around here this week, lots of regulars with the TToT are having trouble coming up with 10 T’s. Mine are to follow, minus any photos this week I’m afraid. Ooh, except for one…because we were celebrating him this week. It was taken back at Christmas, but you get the idea.

🙂

As for the TToT, some are borrowing thankfuls from other members. I am scrambling, somewhat and after a week of feeling sick, for mine, but here goes nothing.

TEN THINGS OF THANKFUL

For Patty Duke.

The Miracle Worker, 1962

She died this week, but she is remembered, for me, as Helen Keller, plus all her work as a mental illness advocate.

For my younger brother’s existence, while celebrating his birthday.

He’s the best brother anyone could ask for, one hell of a musician, and the strongest person I’ve ever known.

Can’t believe this is the final year of his twenties. Due to some extremely unforeseen events since his previous birthday, we came close to losing him, or at least the “him” we’ve become so accustomed to.

🙂

On this birthday of his in particular, I am thankful for the brother I know, better than nearly anyone else.

For organ donation and the newest friend to receive a new lease on life.

My brother has had this gift given and is making the most of it for the last three years now, but now it’s been another person’s turn.

My family have known her and hers since she was only a few years old and since I was first diagnosed with kidney disease. It’s been twenty years, in fact, since our families met.

She has gone through more than many people, a lot in her life, and she is finally free after years of endless dialysis treatments.

The whole organ donation thing is, I fully acknowledge, a touchy subject. If you’ve never known someone who was truly in need, you can’t possibly understand what it means to be free of machines and fatigue and fear.

I struggle because it means someone lost their life. I don’t celebrate that. I only see the good that can come from something so awful. I will forever be torn, even though my brother and myself have and will probably benefit from organ donation more in the years to come, barring major medical advancements.

For a lovely walk, fresh air, after being sick and cooped up for what felt like days.

It was growing dark and all it was was a short walk down the block in my parent’s neighbourhood. My nephew loved tossing stones into the water that had accumulated there.

The wind was biting, but it was also refreshing. I needed the air to flood my recently so stuffy lungs.

For not being sick anymore.

I was sick and tired of all the aches, coughing, and the monster.

Ozzy Osbourne sings a line in one of his songs that I love about “being sick and tired of being sick and tired” and this is not totally gone away from my life, but after a bad cold finally vacates my body, I am often able to realize how happy I am to have one less thing to deal with.

For the return of my normal voice.

It sounded, for a few days there, as if a monster had taken over my body, specifically my vocal cords.

I hope to finally have another violin lesson. Unforeseen events, my feeling unwell, these have resulted in me only getting one lesson this past month or so. Not cool.

For old memories, nostalgia, and endless laughter.

The Things I’ve Seen and Heard

My brother and I listened to old tapes he is digitalizing. All the laughter was hard on my body, after the cold, but it also felt nice, like shaking off cobwebs in the corners of a room that has been shut up to the open for too many consecutive days.

For the passing of yet another April Fools’ Day, for another year.

I am the first one to advocate for more humour in the world, as was one of my 10 from last week, but the day set aside for jokes and pranks is more of a nuisance than a laugh for me now.

I am highly gullible. Although a lot of the jokes played by and on me in person were a thing of my youth, now it’s all on Facebook. So much so, that I may stay off of Facebook entirely next April 1st.

For baseball starting up for the 2016 season.

Today was the first season game and Toronto won!!! Keep that up boys.

And for this song.

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.

Angels

Today is a day to celebrate!

It’s one year since Brian’s kidney transplant and I wanted to share something I wrote only days afterward. There are ways to write a letter to the family of a donor. I hope I am not stepping over a line here, but this is my way of speaking to the people who gave my brother his life back.

***

July 20, 2013

Dear Anonymous Angels,

I will try my best to keep this letter brief, but because my gratitude to you is both endless and boundless, it can’t possibly really be expressed using any words to any real satisfaction. Yet, here I go anyway …

This is fresh because I am writing to you all one week after it happened, after the accident that would change your life forever…and the gift you would give to my family as a result. I go back and forth as to whether or not I want to write this, at all, but I am doing so now because I need to say this. I wouldn’t blame you if you didn’t want to hear it, but maybe that’s just my own guilt talking; maybe you’d grasp for what I have to say…if only because it is something to show for your loss, when there is nothing I nor anyone else could ever truly say to make your pain any less.

Before one week ago you were alive…full of life and laughter and love. You walked and spoke and thought. You had a beating heart. How do I know this? You signed your donor card. You spoke to your family about what your wishes would ever be if the unthinkable happened and your family had to make the ultimate in painful and heart-wrenching choices. The ethics of organ donation are so widely debated, but the real discussions are had between couples, families, and inside each individual’s own thoughts. I have been directly involved in such discussions, on the one side, for years and I still find myself torn deep to my core. Your selflessness is evident, no matter what else I could say or wonder about you. I don’t know you and never will, but I get to know a little piece of you now, inside my loved one.

I went first. I got sick. That wasn’t what I wanted for my little brother. I want you to learn a little bit about the life you’ve just saved:

I have read and heard many a definition of the word “soulmate” and I know what most people think when they hear it. To me, it doesn’t have to have anything to do with romantic interest or attachment. My younger brother is my soulmate. He is one person out of billions that I have an attachment to which I won’t, don’t and will never have with anyone else. He is my brother, my support, my friend, my pal, my conscience, and my hero. He challenges me, calls me out on things, pushes me when needed and pulls back at just the right time. He is my best friend and my toughest critic. People make jokes about how they must be adopted…well I say my brother and I must be twins, but not fraternal or identical: just twins of every other name.

We are the youngest two born out of four: we share the same syndrome, with its lack of sight, damaged kidneys, and the rest. We think so similarly that it often frightens me to think of it. He knows me, sees me, and reads me more clearly than anyone I’ve ever met. We’re family, but so much more…we’re accomplices in crime and two-of-a-kind. We’re quite the pair. I am his protector and he is mine. No one has my back and my best interest at heart like he does. His humour makes me smile whenever I need cheering up. We laugh until our sides hurt, about our own private jokes, the private language we two alone share. We talk and philosophize about the world and everything in it, desperate to understand our place.

I want you to know all this about him because you gave him back to me. You have given him his new lease on life. Nothing will stop him now. His determination and his strength continually astonish me and they are there more than ever; now his physical limitations can’t hold him back.

We’ve done this before, been here before, but that last time was different. There’s no question in a parent’s need and desire to give a kidney to their child; my father and mother…I got his and my brother got hers. This was never the end of the story and we all knew it, but I could never have imagined how it would feel now. I ache for you all; I hurt, and for unnamed and unknown people somewhere out there whom I have never met. You didn’t know us, or have reason to help, but yet here we are and you did. Why …?

***

I realize the abrupt stop above. I got to that point and my emotions took over. That is as far as I got and thought it best to leave it there.

Please! Today take the time to be thankful for the life and health you and your loved ones have. Not everyone has that now.

Thanks for listening.

Be A Donor

https://beadonor.ca

Just the other day I saw a news story about the province of Nova Scotia considering making organ donation upon death the norm unless a person specifically chooses to opt out. Canada is nowhere near the top of the list of countries with the highest organ donor rates in the world. Spain is on top and the US is ahead as well.

http://globalnews.ca/news/1292795/should-opting-in-for-organ-donation-be-automatic/

I know this is a complicated issue and I am sensitive to it, on both sides. I don’t have the easy answers here. I wish I did. Some say that proposed suggestion is a civil rights infringement. I can see where they are coming from, of course I can.

April is Organ and Tissue Donation Month and this past week was National Organ and Tissue Donor Awareness Week
If you’re having a hard time keeping that all straight, you’re not alone. I find it difficult when just about every day, week, and month represent some organization or important cause of some kind. It’s definitely necessary, but with all the causes needing their own dates to help bring awareness to the issues, the calendar fills up quickly.

This is most important to me, obviously, because of how necessary organ donation has been for my family. I am determined to use this blog as a platform to discuss these things and to help spread the word. Without the internet and social media it wouldn’t be this easy for me to do. I can write, but it doesn’t help anybody if people don’t get the chance to read it.

I was used to the way we’d done it. As a child I didn’t think twice about my parent’s choices. Of course I was nervous for them when they went in for surgery, putting their lives at risk, small comparatively, but still present. I worried for them and held my breath until they were both out of surgery and recovered. Really though they were adults and I was the child. They were the parents. There was no question.

When it became reality, as an adult, that my baby brother (even if he was in his twenties) would be depending on the organ donor list the second time around, a whole new reality formed around the situation. I had no idea how I would handle the feelings and fears that go along with the transplant list.

The wait and the uncertainty were the first things, but that would fade away the moment I realized he was getting his chance.

It felt like ages, for him more than me, that he was on dialysis this time, but really it was only three years. I say only, but dialysis can become awfully tedious when it goes on day after day, month after month. For those who are on dialysis for extended periods of time, years and years, it becomes routine, just one more thing you do, like brushing your teeth, going to work or school, or cleaning the bathroom. Sure, it’s unpleasant, but the alternative is unimaginable.

This week will mark one year since the evening I received the call that they contacted him with a kidney. I was exhilarated and anxious and ready to rush off to London to be by his side.

When that call was almost immediately followed up by another to say it was a false alarm, the rush abruptly ended and we were back to waiting.

Within a few months it would happen for real. It went smoothly for the most part, and he has felt 100 percent better ever since.

What I wasn’t prepared for were those feelings of morbid curiosity and sadness for the people also involved, somewhere on the other side. They lost their loved one and would never get to see them again. I felt guilt for that and I felt guilt for feeling guilty. My brother was well again and that was the main thing. I didn’t have to know anything concrete about anyone or anything else. That’s just life I suppose and that’s what I now know firsthand makes these issues anything but black-and-white.

The reality is that people do die and we are able, with modern medical science, to help others in the face of those tragedies. Why wouldn’t we do what we could with that? I don’t know. All I know is that I love my brother and want him to be healthy. That’s the simplest answer I can come up with for the need for more donors. More families deserve a second chance. These issues are complex, staggeringly so. I want to make everyone aware of the reality of organ donation in the hopes of having a discussion. Life is precious, on both sides. I will never stop speaking my mind and telling my story when it comes to organ donation.

http://www.kidney.ca

http://www.giftoflife.on.ca/en/