Moved to Tears by MEDIA LOVE . . .

It’s not often that a person has to eat his or her words. (I hope I got that expression right? I am famous for getting expressions wrong.)

In the past I have said that the media doesn’t have much love for kidney disease. What an amazing day it is when I have to take those words back . . . 

I received an email from Kerry McCloy, the Fund Development Officer of the Kingston Branch of the Kidney foundation, with a list of media links . . . all links are features for the upcoming Kidney Walk!!

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I took the time to open each feature.

Each link a sign that the media does care about those of us living with kidney disease.

Each link a sign that our experiences and what we go through means something.

And each link giving me hope that money will be raised (and awareness will be raised) for this cause that is so close to my heart.

*I am on the dialysis machine as I write this post*

I was moved to tears.

I want to thank the local media . . .

  • Whig Standard
  • Kingston Heritage EMC
  • CKWS News
  • Station 14
  • TVCocego – Kingston

HERE ARE THE LINKS:

Whig Standard: http://www.thewhig.com/2014/09/17/charity-walk-lifeblood-of-kidney-foundation

Kingston Heritage EMC:  http://www.kingstonregion.com/news-story/4855450-walking-and-talking-to-raise-awareness-about-kidney-disease/

CKWS-Newswatch at 11: http://www.ckwstv.com/news-on-demand/
To view: click News on Demand, Wednesday tab, newswatch @ 11 – starts: 4:33, ends: 6:24

CKWS-The WS Daily: http://www.ckwstv.com/news-on-demand/
To view: click News on Demand, Wednesday tab, Daily 2nd half – starts: 7:43, ends: 11:35

Station 14 Kingston: http://www.station14.ca/
To view: Click on the Taking Steps for hope video

TV Cocego Kingston – Look for an ad on the Message Board between shows on their station

I am truly thankful and overwhelmed with the amazing support the media has given us.

Those of us living with Kidney Disease feel the impact of fundraising and awareness pretty directly. We benefit from programs, research, financial aid and medical innovations, made possible from fundraising dollars. 

We appreciate the help. Our lives are improved because you care.

THANK YOU!!!

The Kingston Kidney Walk is this Sunday – September 21st!!

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Registration is at 10:00am at the Woolen Mill off of Rideau Street, btw. The walk starts at 11am.

Support this cause with a donation or with your presence. <3

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The Lived-Experience Expert Title. . .

I consider myself a lived-experience medical expert.

From my perspective everyone who’s experienced challenges in their health (who lived to tell) qualifies as a lived-experience expert.

My experience with Chronic Kidney Disease and Heart Failure has given me a lot to draw from. I was diagnosed at 18 and I’m in my 40’s now.

  • I did pre-dialysis, preventative chemotherapy.
  • I’ve done Peritoneal Dialysis.
  • I’ve struggled with the decision to be on the transplant list – with fear around living with the anti-rejection medications.
  • I’ve had a kidney transplant. I’ve lived the life of a transplant recipient for almost 13 years.
  • I suffered the failure and removal of a transplanted kidney.
  • I’ve done Peritoneal Dialysis with a cycler and the manual way.
  • I’ve suffered a near-fatal cardiac arrest.
  • I’ve been diagnosed with Thyroid Cancer.
  • I’ve been forced to transition from Peritoneal Dialysis to Hemodialysis in a time of near-fatal crisis.
  • I’ve done in-centre dialysis.
  • I’ve transitioned to home hemodialysis – without a care partner, no less.
  • I’ve used fitness to improve my health and change my life.

Quite a medical history.

And in between those major milestones were many mini-milestones that I could list – seemingly to infinity. Operations and procedures figure in here.

On an individual basis, I could write a book on each of the experiences listed.

The moments of fear. Feeling out of control. Of making peace. Of learning the practical “living-with” these medical circumstances. Negotiating through the medical world, with it’s challenges and obstacles, to advocate for my best care. There is a lot there.

When I first started volunteering as a Patient Experience Advisor, I began to realize how valuable my lived-experience was.

In having experienced these things, and also being comfortable to share my experience (in both personal and more “broader patient-specific” terms), I could help clinicians and executives understand the patient perspective. With the patient perspective we could collaborate to make practice and policy better.

I feel blessed that I am confident enough to speak, write and consult on what I’ve been through.

Sometimes my confidence comes from understanding that my fellow patients may be too sick to share their experience. Or too tired. Or not confident enough. Knowing that other patients can benefit from my voice, and input, motivates me to give this advocacy work my all.

I am very encouraged that medicine is finally ready to hear what patients have to say. I see the tide turn to where the KGH slogan, “Nothing about me without me”, is really being taken to heart. Little encouraging pockets of patient-centered medicine that are building in momentum.

I don’t think medicine should have ever proceeded without the patient voice. It seems like a no-brainer now. And now that patients are present at the table, I cannot imagine things happening any other way.

I think of it now like planning a wedding and not getting the input of the bride. It seems so ridiculous for medicine not to have ask us patients what we wanted. What we thought. And then to act without our input being included. To make assumptions about what we’d want and need as patients. Many times without the perspective of ever having been a patient themselves. Wow.

Medicine is for patients. Isn’t it?

When I think about my life I would never had guessed that my most valuable expertise would be built on the foundation of my blood, sweat and tears. Of my knowledge having lived with Chronic Illnesses.

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What I wouldn’t do to be an expert on astronomy? Or some kind of surgeon with a valuable specialization?

To be healthy and not know the things I know.

The price I paid to be a lived-experience medical expert is higher than any time spent in university . . . or the debt of even getting multiple degrees.

I would prefer to have $150, 000 in debt over my head . . . to have had an advance education (making me an expert), than to have lived and learned the hard way with these diseases.

Feeling this strongly, I am sure you’ll understand why I consider myself an expert. And why I feel I can ask for the respect that any expert asks for.

I paid a high price to know what I know. All patients pay a high price to know what we know.

Higher than I can properly articulate.

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From Icon to Man: Nelson Mandela . . .

I try and read something first thing in the morning to inspire me. I probably only read about 10 minutes each morning but it sets a good tone for starting the day.

(Some days, I must admit, I get side-track with Facebook and my emails, but on my best days I go straight to my books.)

Right now I am reading a book called, “Conversations with Myself”. It’s a collection of letters and conversations documenting Nelson Mandela’s life before, during and after his incarceration.

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I’m finding a lot of amazing surprises . . .

Moments of simple humility.

Moments of superhuman bravery.

A touching vulnerability.

Sadness of depths you don’t wish for any human being.

Words evident of unconditional love and empathy.

Actions that speak to broad priorities . . . more broad than most people ever have to consider.

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The person who appears on these pages, of neatly written letters and transcripts of conversations, is fundamentally just a person. A person like you or I who can rise to have a powerful impact on the world.

I think sometimes we underestimate the power and impact we’re capable of. We don’t believe we can make a difference so we don’t even try.

Through Mandela’s own words I see emerging a whole, real person.

This book reminds me that Nelson Mandela is a lot more than icon – to be put on a pedestal.

As an icon we forget that he was a man.

He was real just like us.

For me there is a value in remembering that.

 

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Vlog (Video Blog) on Patience . . .

After some gentle pressure to vlog, I have done it.

(Thanks to the “pressurer” . . . you know who you are.)

I have to admit, the process was a lot less painful than I remembered it being.

I am, tentatively, going to commit to trying to do videos on a more regular basis.

Here is the link to the video on YouTube:

http://youtu.be/jRDhJd-9f0k

Here is a screen-grab of the link:

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Thanks for watching. :)

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Nudge, Nudge, Say No More . . .

Today I received a gentle nudge to remind me about doing video blogs. How I should consider doing them more often.

And reminding me that short videos are probably the most powerful way to communicate these days. 

Point taken. (Thank you.)

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I do find it a lot easier to just write something and then find a complimentary image to accompany the post – using Google.

Perhaps it’s time to step up my game?

I have a good post topic lined up to explore, in a video, later this week. I even went and looked at standing camera tripods today. (I am taking this seriously, people.) :)

Look for a video blog (vlog) from me later on this week.

I appreciate the feedback.

* Hope someone appreciates my Monty Python skit reference in the photo. It’s “funny to me”.

** Disclaimer: Please do not hold my self-produced videos to the standard of the “Video Intro” on the home page of this blog. That video was professionally produced – using multiple cameras, sound and light kits. My videos will be a little more low tech. *sarcasm* 

It’s about the message – not so much about the medium. (Although, I will try my best.)

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When You’re Ready to Receive the Lesson, the TEACHER will appear . . .

I should start by thanking you – the people who care enough to read my blog – for the accountability you’ve represented for me. Your accountability has been huge for me and given me a boost to really work on my writing. Thank You!!

Because I know that you’re reading these posts, I have worked hard to keep up with my schedule, as best as possible. I haven’t been perfect with my goal of two blog posts a week but I’ve tried my best under the circumstances.

This blog originally began as a way for me to write and share my experience – as a person living with chronic illnesses and waiting for a kidney transplant. In that way it’s been very important for me.

It’s helped me to be more confident as a writer.

It’s helped me to begin to find my voice as a writer.

It’s helped me to understand how to begin to tell my story.

Writing this blog and getting the beautiful feedback from you (in the form of likes and personal emails) as shown me that there is, in fact, a “place” for me as a writer. And that what I am writing is appreciated and needed.

Thank you so much for that reassurance. Your support. Your kind words. Your presences.

Thank you.

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Eventually it became time for me to step my writing “game up” a little, so to speak. But I wasn’t sure how that was going to happen?

Et Voila!

Someone has come into my life and volunteered to be my accountability “coach” in my writing – towards writing my book. Telling my story.

It couldn’t have happened more perfectly.

We met through mutual friends and he immediately offered to work with me – informally – to help me make some progress on my writing goals.

And it’s not even one-sided . . . I am also holding him accountable in writing his second book – a novel. Here is a link to his first novel, which I read and loved. (I definitely recommend reading it.)  www.piousbook.com 

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I will still continue to write my blog but now I am also writing a series of experiences that will culminate in a book – eventually.

It’s an interesting experience for me because I simply have a schedule of writing sessions to accomplish in a week. I am making a commitment to sit down at the computer and just write . . . express what I went through in my “sick to fit” journey.

Once I write an “experience” I simply email it to Kenn. I get some general feedback from him. And I keep going.

I am not yet thinking about structure or the whole journey of my experience – in written form. For now it’s a simple process of getting the experiences down.

I am so thankful that Kenn, was able to help me think of this book in a less intimidating and manageable way too. I knew what I had to do but he helped me by breaking this process down into small, less intimidating steps.

Once a body of work has been built up I can think about structure and order and what works and what doesn’t. I’m not there yet.

It’s like the creation of a huge bouquet. I am simply picking flowers for now.

I can’t overstate how thankful I am to have this guidance in my life right now. And the experience of working with someone who is very bright, thoughtful and accomplished. His presence makes me step up my game. Stick to my goals – so far. And I am learning a lot from reading his work and talking with him about the process of writing.

I have to say, this is a “when you’re ready for the lesson the teacher will appear” moment for me.

I am very thankful for these teachers appearing in my life . . . and working hard to show that I am appreciative of the opportunities they give me.

I will keep you posted on the progress I am making . . . toward my first book. *yikes*

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My review of “Pious” by Kenn Bivins:

This book is written in keeping with of an economy of words and yet it expresses a lot. Carefully chosen words will remind you of the brush strokes of an experienced artist. Deliberate, simple yet powerful in conveying much.

With masterful story telling we are privy to a whole complex world. This world exposes a series of morally gray-scaled lives and life experiences. Bivins is able to show the “whole picture” in a way that makes each character relatable in a brutally honest, human sense. Making sense of the acts of a murderer and the acts of a sex offender through the humble, impious honesty of telling their whole stories. Granting them more than just being one-dimensional stereotypes. Helping us to see the “every man” in them and thus in ourselves too.

The writing is smooth and slick where it needs to be and vulgar and harsh where that is necessary too.

“Pious” is the best of real life, caught in microcosm, and retold in novel form. A walk through a city like NY where fives minutes is aptly represented by a flash of a cream-coloured Bentley – cream-coloured fur-clad patron inside. Quickly followed by the sight (and sound) of a vagrant vomiting painfully in an alley.

www.kennbivins.com

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