“Being with” but not BEING . . .

I’ve slowed right down on sharing my perspective – either on here on on the vlog I started called, Boundlesslife.

I am learning now how to be with a topic (such as death or cancer) without being that topic. Yes, I am dealing with cancer. Yes, I am facing aspects of my mortality. Yes I am a person living with kidney and heart failure but I am not cancer, death or kidney/heart failure.

My goal now is to share enough of those things to help explain my story but ultimately to concentrate on LIFE.

I competed in my first horseshow a few weeks ago. I’m going to MetLife Center in New Jersey next week to see Beyoncé. I have a list of amazing things on my calendar – including my usual of yoga, meditation, skating and riding lessons.

Esteemed trainer, Cindy Steele, myself and Trinket with my fourth place ribbon. August 28, 2016.

I am to0 busy entertaining life to court death too. Death is standing outside my door, ringing the doorbell (holding his rancid bouquet of roses) . . . and I’m ignoring him. Eventually I know he’ll leave.

With what appears to be a reoccurrence of the angiosarcoma in my heart and no viable options from the doctors, I need to do what I can. I am taking responsibility for my health with a focus on my attitude, on healing, on my activity level, on my spiritual practice and on all the positive support I can muster.

With a feeling that I can only describe as blessed assurance, I feel reassured that I have many years ahead of me.

Here is a feature where I discuss how my cancer diagnosis has impacted me.

Queen’s Alumni Review: Issue 3, 2016

I live with cancer. I live. I am life. LIFE.

To read the article online: Queen’s Alumni Review

Talking about Death . . .

It is a touchy subject. Period.

I think I’m okay with talking about death because I’ve nearly died a few times. It is not scary to me because all of the times I’ve been sick enough to pass, it hasn’t been scary.

The first time I was sick enough (that people thought I might pass), I was only aware I was very ill from their reactions and I was 18 years old. People bursting into tears when they saw me in the hospital. I should have known something was up from the tubes and IVs and from being in Cardiac ICU. Duh! And even then the reactions did not scare me. My instinct was to try to make them laugh. LOL! (I guess even now).

So, I decided to share my perspective in a report. I allowed Health Quality Ontario to use my photo and quote for a report on Palliative Care at the End of Life.

A part of me believes that sharing my opinion is helpful not matter how difficult the topic. I have had a few negative reactions from friends though. Friends are negative until I share my belief that life and death are very closely related. I believe in being comfortable with death we can be comfortable and even closer with LIFE.

I have been drawn to some amazing new experiences related to death. Opportunities to contemplate how we think about death in Western culture. Talking to my Dad and discussing how death is conceptualized in the Caribbean. I was fortunate enough to get to attend a seminar lead by Stephen Jenkinson, called Die Wise. It was an emotional but transformative experience. I would suggest googling him. I’ve had lots of new things to think about, in relation to death.

Photo Credit: Seema Marwaha

So here is the link to the report. Very informative. Powerful.

http://www.hqontario.ca/Portals/0/documents/system-performance/palliative-care-report-en.pdf

Here is my quote. It’s from the interview I did last winter with Faces of Health Care blog. Here is the link to that.

Photo Credit: Seema Marawha

What I share is difficult. It is. I will not apologize for sharing from my heart though.

I hope my opinion is understood from a place of bravery. I felt really brave to contemplate my own death. My life is testament to me being a fighter . . . I am not a quitter. I am a person who believes in limits in how far I want to go – into pain, suffering, etc.

Bigger picture . . . to live this close to death, I am ultimately choosing to embrace LIFE. Now more than ever, I am enthralled with living and doing and experiencing. Life and death turn out to be so related? Who knew?

I understand that can be confusing to some.

That’s okay. I am fine running the risk of being confusing and of being misunderstood in order to live and to speak my truth.

xo

Heart & Stroke, Heart Failure Report . . .

If I can share my experience and even one person begins to think about their chronic health differently, I will be thrilled.

I had the pleasure of being part of the Heart and Stroke Foundations, Heart Failure Report. I was really impressed with the quote they choose for my part.

I think this quote sums up the take-away that I wish to share with people the most. I truly was surprised that I could be fit and active despite having chronic  illnesses! I still am.

This is especially relevant now, after my recent health obstacles. With the tools that I learned in Cardiac Rehabilitation, I am back to the gym on my own . . . safely. I don’t keep up with exactly what the class is doing. I keep my own pace – probably about a 70% effort. And I wear my heart monitor – keeping track of my heart rate at all times.

The most important part of my workout is the warm-up and cool-down. By watching what my heart does at both ends of my workout session, I can best prevent any cardiac hiccups. My heart rate should raise slowly before I start my work out and lower slowly when I do my cool-down. Once I see those safe numbers I feel confident that I won’t hurt myself or precipitate a cardiac event. (Just what I need . . . another event!! LOL!)

Here is the whole Heart Failure Report – below in a link that takes you to a pdf. It is a very interesting and informative read.

Heart Failure Report

As always, I am honoured to work with the Heart and Stroke Foundation.

 

Talking to Drew Long (founder of Fiercegentleman.com) . . .

I am learning that all roads (health, wealth, relationships, joy, etc.) involve a journey into one’s self first. One of Drew Long’s contribution to the world . . . is creating an amazing manifesto and life philosophy. Drew’s work has been integral to the effort I am making on myself to improve me and my life.

Take a look for yourself . . .

http://fiercegentleman.com

His inspiring manifesto . . .

The Manifesto (a sneak peak)

Here is a link to an interview Drew and I did – you can listen or read it.

We discussed my health, being a Fierce Lady, race in America and being a compliment to a Fierce Gentleman.

Fierce Gentleman Interview

I found Drew’s work at a time in my life when I wanted to make changes to myself and my life – and his philosophy was a perfect match. A “stretch goal”. An opportunity to challenge myself and think critically (lovingly critical) about who I am and who I’d like to work on becoming. I also love that his philosophy encourages an on-going, life-long lifestyle approach to self-improvement. LOVE THAT!!

Here is a little bit about Drew Long. It was an amazing experience to talk to him. I hope you enjoy the interview.

Thanks, as always, for spending a little bit of your time with me. xo

My Message in French . . .

Here in Canada our official languages are English and French. (My french really improved when I lived in Montreal, Quebec but it’s a little rusty now.)

In French-speaking Canada, Reader’s Digest is called Sélection. Cool, huh?

Without further adieu . . . My feature “en français”!

Photo Credit: Sat Nandllal

Photo Credit: Sat Nandllal

What a pleasure to see my message shared in another language. I am honoured to share my experience. What about Spanish next??

Here is a link to the Heart and Stroke Foundation website. I love the good work they do there.

Heart and Stroke Foundation

 

PODCAST: Voice of the Patient

I had a chance to speak with David Reed for his new podcast, The Voice of the Patient. Dave is a humble but knowledgeable, thoughtful man who practices physiotherapy in North Carolina, USA.

It was wonderful to engage in a straightforward conversation between clinician and patient.

Here is a link to the podcast https://itunes.apple.com/us/podcast/thevoiceofthepatients-podcast/id1099668893 . . . and a photo (below) of where you will land when you go to the link. Our conversation is #1. Guest: Karen Nicole Smith.

Wanted to share a little bit about David Reed and also about what he hopes to accomplish with this new podcast, The Voice of the Patient.

PT David Reed

David Reed is a physical therapist with over 10 years of clinical and administrative service in outpatient, acute care, home health, and regulatory settings. He’s been absolutely blessed to have had such breadth and depth of experiences and mentorship from fellow PTs, physicians, and alternative medicine providers during this period. The most important lesson he’s learned so far is that excellent care is at least as much about the service as it is about the science. Probably more so. This is the driving mission behind The Voice of the Patient: To change lives, that is, to improve the quality of the lives we touch by improving healthcare through not only hearing, but truly listening to the voice of the patient.

Please let us know what you think in the comments below. You can also comment on Twitter to Dave at @DReedPT or to me at @KNSwriter.

Please SUBSCRIBE to my blog or to David’s podcast. Don’t miss out on great content!