Love What Matters

This past week I was asked to write a condensed version of my health story for the website Love What Matters. 

This website is dedicated to sharing incredible stories written by real people, in varying genres, focusing on love, kindness, and compassion. 

It was a nice challenge to really answer their main question: "what is your story?"

Final Goal

In my latest 'Ask Me Anything' post, I had shared my most recent blog about deciding not to have children.
In that post it was clear that our family is complete and that our lives are full.
This question was then posed:

"What is your final goal in your life?"

This is a bit of a difficult question to answer.

Most importantly, I hope I have decades of life before I have only one, final goal.

It is not like I have this list of goals for my life that I am working towards. I have always had pages and pages-worth of small little goals in various areas of my life. You know, there are goals about the house, there are goals for places to see and things to do. I try to focus on the little to intermediate goals, because little progressions lead to bigger goals.

But if you want me to tell you about my BIG life goals, I will try to answer as best I can.

1. I want to always focus on the relationships that I have. Those are one of THE most vital parts of living a happy life (for me specifically). Family comes first. I want to be able to see my brother and his family more often, I want to be able to see my parents and my friends more often, and I plan to start writing old-school letters to friends I cannot see on a regular basis.

2. I would love to become a published author - to have a book deal. To have a book of some sort on the shelves of every major book retailer in Canada.

3. I would love to do something extraordinary with my singing. I know that there is only so much that I can physically do, so I have had to work on this in a very different way, but the goal is still there. I would love to release another cd at some point, perform background vocals for someone exceptional, and I want to sing on a stage again. Not just any stage, but a stage with a huge crowd. The anthem at CFL or NHL games. A background vocalist for a concert. Hell, the LEAD vocalist at a stadium with tens of thousands of fans. It may be far-fetched, but it continues to be a goal.

4. If I am ever able to travel, I would love to see the East Coast, to go to a Seahawks Game IN Seattle, I would LOVE to go back to Europe. I would love to go to Cedar Point and ride every single rollercoaster. I would love to go back to Disneyland, to spend a weekend in Jackpot, Nevada, to see the Galapagos Islands, to go on another cruise, to do a cross-country train trip in Canada, to learn how to surf in Hawaii, to have a romantic getaway in Tahiti, and to visit our ancestral castle in Scotland. These are more wishes than goals... but I am hoping that the East Coast and the Seahawks game are achievable in the future. I plan on experiencing some virtual reality activities to get a glimpse of some of these places and some activities I have always wanted to do but couldn't due to health reasons. (Like scuba diving, hang gliding, etc...)

5. I want to learn. I want to continually cultivate my curious mind and learn all the time.

6. I want to improve my art skills and continue improving them. I would love to be able to make a statement through art and literary works.

7. I am working on my cooking skills all the time. I would love to take little courses in the culinary arts - but if I cannot take classes then I am focusing on trying new recipes on a semi-regular basis. (I just learned how to make chicken roulade AND French macarons, which I need to continue working on). I also watch a lot of cooking shows and then try to make similar recipes.

8. I want to continue kayaking, camping, and practicing yoga. I want to go swimming more often (which is really difficult with a chlorine allergy and living where the lakes are too cold to swim in for 10 months of the year). My goal is to simply increase the amount of time I spend in these activities.

9. I want my husband to travel. This is a big goal. There are many places he has always wanted to travel, so I would really love for him to go even though I would not be able to join him.

10. I would love to be able to help out my family as much as they help me. My health is a burden. There is no getting around this fact. As stubborn as I am and as independent as I can be, suffering with health conditions is a burden on time, finances, goals, and oh so many aspects of life. I would love to be able to return the amount of time and energy my family has spent on me.

But my most important goal, the epitome of life, my purpose, my daily and lifelong goal:

I never want to take love for granted. I want to enjoy every moment, see the bright side of nearly every crummy situation, and remain grateful for everything in my life. Maintaining this grateful feeling and this love is the most important goal I will ever have.

I hope this answer has been satisfactory. :)
Thank you so much for participating in the 'ask me anything' posts. These questions have all been illuminating.
Bring on more questions - especially the difficult ones. The difficult questions offer the most amount of soul-searching.

Illness Blogging

There has become this trend regarding illness blogging.
There are thousands of different blogs out there of people telling their stories and explaining their lives with illness.
With so many different diseases and SO many varying personal experiences - each story is just a little bit different.

There is one main thing I would like to get across here:
Although there are those who are writing their stories solely for attention or for sympathy, I can confidently say that most people, in my opinion, who write about their life with illness are simply wanting to be understood.

I mean, that is why we all write and share our lives via social media. We want others to WANT to understand who we are, why we are the way we are, and why we make certain decisions over others. (On a small tangent I find it ironic that the age of social media was intended to improve empathy but has done very well to eradicate the concept of empathy).
Back on track here.

The reason that I write is to be understood as a person, to spread awareness of what it is like to live with chronic illness that causes chronic - every single second - pain. Not to gain sympathy (okay maybe a little bit sometimes) but so that people begin to empathize with others and learn about different diseases that are not spoken about very much (and some that are).
Even further to that, I hope that with some posts I can provide information to young people being newly diagnosed.
My recent post regarding all of the different online stores selling cute covers for ostomies was done because when I had an ileostomy, everything was so overwhelming that I had no idea where to even look for something like that. I remember not knowing what questions to ask or what was even available for things I felt were uncomfortable.
Going back even further, when I was first diagnosed with Ulcerative Colitis and wanted to learn more, I was bombarded with the most horrifying stories of how bad things can get. And although having an idea of what to expect is important, I felt like it wasn't an honest conversation about what day-to-day life was really like. I had no idea if these people were happy, if they did or did not work, or if they had a life outside of their health complications.

Being newly diagnosed with any illness, being new to a procedure or to a lifestyle after a massive surgery is overwhelming for everyone. If I can offer some ideas, some stories, but (most importantly) a relative crystal ball in a positive way then that is what I would like to do. I want to be honest with what day to day life is like, what the struggles are, but also what the regular life stuff is like. I want to show how, even though illness is a huge part of my existence, I have an entire life full of different interests and activities and happy moments that have barely anything to do with the illness itself.
My love for reading isn't because I am sick.
My love for my husband has nothing to do with me being sick. He is just exactly the kind of person I have always dreamed of being married to - someone kind, compassionate, sarcastic, smart, handsome, and genuine, who happens to drive a big truck!
My love for dogs, for music, for learning, for building friendships and building strength, constantly trying to improve and trying to keep motivation - although my direction with these things have been influenced by illness, my LOVE for them has nothing to do with it.

Illness blogging (to me) is about being raw and genuine, trying to offer information and some advice, and building awareness and understanding for people like me.

Canes and Wheelchairs

Cane or a wheelchair
A walker or stuck at home
My smile never fades

I used to hide my cane whenever I took photos. I didn't want to have my bright smile in the same photo as something that feels like failure. Now I'm not as concerned. The cane is a huge part of my life and a wheelchair has become a part-time necessity. Though my smile never wavers. So why not celebrate it??

Writing

One of the tougher things about writing, in general, is that everything in writing seems black and white. You have to possess some literary artistry in order to truly convey meaning, hesitance, grey area, emotion, or any wavering.
In writing if you say something like:

"I am experiencing incontinence..."
It seems straightforward - simple, matter-of-fact, black and white.

In person, face-to-face, saying that exact sentence... 4 words... can seem or feel so much different. An extended pause can convey shame or embarrassment. Whispering the last word or saying with a specific facial expression can explain all anyone would ever need to know about the nature of that word.

What about:
"I feel sick."
Three words. In writing, simple, and yet I have so many follow-up questions.
What kind of sick? Are you going to puke right away? Did something happen? Are you nervous or anxious? Did you eat something wrong?

It all requires context, of course, but how do you rightly express yourself, without being misunderstood, in writing.
Especially small tidbits of writing - the shorter the explanation, the more difficult to properly interpret.

What I hope to convey in my writing is that I am ill. Unless a miracle cure comes along, I will most likely always be ill. That illness is not exaggerated or fake or by choice. The daily symptoms I experience are not enjoyable, not controllable, and they are serious. They can even be dangerous.
I also use humour as a coping mechanism. I make light of it - not because it is not serious, but because it IS serious, but if I treat it that way all of the time then I would lose my mind.
Speaking about something so serious in a casual way can be confusing - but it also is a method of showing others that this is my reality. This is my daily life, my daily routine. Just like everyone else has a daily routine or expected level of pain or energy, so do I. It just might be a little different.

Writing such a blog as this is an attempt to raise awareness of course, but also to talk about really awkward things in a light and humorous manner. I want to help others understand daily struggles... but like anything, writing can be misinterpreted or misconstrued. If you ever have any follow-up questions, email me at any time! Or ask me questions via Facebook (@thelightersideofmedicine) or Twitter (@BlogLighterSide).
I am always up for talking - about nearly everything regarding illness.

Iconic Poetry

I have recently cracked open this particular collection of poems, written by Tyler Knott Gregson, called "Chasers of the light: poems from the typewriter series".

It is just inexplicably relevant. When I purchased this particular book, I was simply grabbing random collections of poems. When I found out that these poems were put together from pieces he wrote on an old typewriter, I thought that it was unique and interesting.
What I came to find out is that his whole mantra in this collection is finding the bright side of situations. "The Lighter Side" if you will. Some of the moments are tragic and emotional, but there is always something that brings a light element, however miniscule.

I want to share two of my favourite pieces, because they are absolutely perfect and had me in tears, but also smiling. Tragic and hard-hitting and a reminder to always look for the better in everything.

"Find the positivity. Find the grace. Find it and hold it and cling to it like it is your lifeline and only breath of air before everything sinks. Find the silver linings. Hold them in your lungs and search for them in the bubbles and rubble of all that pours down around you. Find the bright spot in the dark clouds, listen for the sounds of birds when the winds pick up and tear down the house around you. It is there, shhh, it is there, it is always there and it is waiting for you to reach out with both hands, bloody and shaking, and hold tight to it like it is the last thing you will ever learn how to let go. Find the glory, the glory through the ache, and understand that it is what we can endure that defines who we become. It has never been about the punches we can throw, but the punches we can absorb and still stand up from. It is the standing up, it has always been the standing up and the refusal to lie still and quiet as the numbers count towards ten and the knockout becomes complete.
Rise my soul, rise through the flame and the ash, rise through the waters that fill the spaces under your arms as they crawl toward your throat. Rise and find the grace, for it is all around you.
Find it. Find the grace."

Here is the second (more devastating):

"Now I Lay Me Down To Sleep

Be gentle, always delicate with every soul you meet, for every single morning you wake up, there is someone Wishing, silently and secretly, that they had not."

From an utterly random find to a new love. I love his poetry. I love the ways he can turn a phrase. I love how, just when you think it is sounding all cliché, he adds in a term or an unexpected visual that reaches through right into your soul. He takes the depths of human emotion and presents it on a page - tangible, real - and you realize that your deepest and most vulnerable thoughts are mirrored by someone who you have never even met.

This is the kind of writing I can only hope to one day present. He has such a gift and I am so grateful for having experienced it.
It reminds me that looking for The Lighter Side of Medicine; that Chasing the Light, is not a fool's errand, but essential to our personal survival, and something that great writers have written about. It gives me added motivation to continue the path I have set out with something as simple as this blog. It may never go anywhere, but somewhere out there, it might just reach someone in a way that I could never have predicted.
💚

Medical Language

I recently wrote a narrative nonfiction piece for a writing competition.
There was one moment when I was writing that felt unbearably ironic - so I have to share it.

I was explaining how, when you are diagnosed with any serious or chronic illness, there is often this wave of words thrown at you that you never knew existed. Words that are technically in English, but feel like a completely separate language.

As I was writing this idea, I started quoting words like "anesthesia", "gastroenterology", "Cloraseptic spray", "colonoscopy", etc...
And as I am typing these, all but the last came up with the dreaded Spelling Error squiggle underneath. Those three words aren't even in the Microsoft Word 2016 dictionary...
Talk about a different language alright.