Wednesday, October 30, 2013

The little things that are helping me survive

I don't like to have a lot of things in my home. I don't like clutter. But there are a few things that I do love. Most are related to skin care. I have sensitive skin. It hates chemicals. I once tried Proactiv and it was one of the worst things I ever did to my skin. I joke that I'm at the age where I have acne and stretch marks. But, I'm not really joking. I'm sure that my drug cocktail doesn't help much, but I have tried a great deal of skincare. Kiel's didn't do it for me. It wasn't a disaster it just felt heavy.  I always end up at Lush. I use their ocean salt everyday as a cleanser and I'm a recent convert to their "gorgeous" moisturizer.  Before this I would sometimes not use a moisturizer at all, unlike most sensitive skin folks, I also have oily skin. It's also fair and delicate. I started paying more attention to my skin after I had my transplant. I have an increased chance of skin cancer because of my meds. I also very much enjoy Lush's cosmetic catastrophe mask.

Most days I like my scars. They remind me how far I've come. Because my skin is so fair they don't fade like other peoples do. Sometimes I admit though, I don't always want to be the organ donation girl and instead just that hot ( maybe pushing it) girl who just happened to have had a heart transplant. I want to be successful not just for a transplant patient but for a normal 30 year old woman. Better then any scar gels I've come across the best is Kiel's Lavender relaxing bath with Aloe. Truthfully, I don't think I'm very good at having a bath. I get bored if I'm in there for more then 5 minutes. But for that 5 minutes, it's pretty amazing




Sunday, October 20, 2013

my sister, the smartypants

I am so proud of my little sister. She was valedictorian of her graduating class at U of W. She gave a beautiful, poignant speech. Ali is not the one to steal the spotlight, making a speech in front of over 100 people is not something that would have come natural, but by watching her you'd have thought she had done it 1000 times before. I want to share parts of her speech, which touched me deeply.


It is such an honour to be here representing the 100th class to graduate from the University of Winnipeg. It was difficult for me to get over the initial shock of having been asked. I’m pretty sure I checked two or maybe even three times to see if they had made a mistake. With no one admitting to a mistake, I assume that the selection criteria must now include awarding points to the student who has taken the longest time completing their degree.
In any event, I am thrilled to be here to say congratulations to my fellow graduates. Today marks a milestone for many of us, particularly those whose road here was far from straight and far from smooth.
To our family and friends, thank you for your support, encouragement and patience. Thank you for reminding us that the stress was worth it; that we could handle it. We are grateful to have discovered the motivation and determination to continue to work at something, even when we aren’t sure why. We know that this is something we will need this in the future.
Thank you to our teachers. The education we have received is a gift; a gift we know not everyone has the opportunity to receive. Thank you for fostering our curiosity, for challenging us, for opening us up to new ideas, and for your willingness to learn with, and from, all of us. We leave here today confident enough to have opinions we feel we can share, and wise enough, we hope, to know that we don’t always need to.
For many of us, being a student at the U of W has deepened our desire to contribute to our communities – both local and global, in a positive way. We have learned the value in admitting that we don’t know, for it is only when we acknowledge that we don’t know that we are able to learn. Because this, we see that meaningful change in our communities will only be possible when we set aside our egos, and build on our collective knowledge and experience.
We are also able to see how a person’s value, their intelligence and wisdom, is not related to how many letters may appear at the end of their name, but instead, is determined by a person’s integrity, their ability to learn, to reflect and to consider - all important skills that our education here has offered us, and for this, we are deeply thankful.
On this day with so much attention on formal academic achievement, I invite all of us to consider the teachers we’ve had outside of the class, and realize, that some of the most brilliant teachers we have had, and hopefully will have, may never have graduated high school or attended a university class.
We will leave here today proud of our accomplishments, grateful for all of our teachers, and humble. Humbled by the realization that thousands of students have sat as we do today, likely wrestling with the same feelings we are, as we contemplate what it means for this chapter of our lives to be closing, and another to be opening.
Those of us looking ahead with a bit of anxiety, wondering what the road is going to look like and where it ought to be leading, can take comfort in knowing that we are not alone And we can remind ourselves that none of us knew what the road here would look like, (I didn’t know that the road here for me would take 9 years)
Our education has taught us to embrace what is unknown, and has shown us that we are capable of more than we think, so we can feel confident in our ability to take on any challenge that may appear on the road ahead, wherever that road may be leading.
I’d like to close by returning to that sense of gratitude, by taking a moment to acknowledge that each one of us is here today, because someone believed in us.
All of us, whatever our stage of life, need someone to believe in us. We don’t need many, but we need at least one. I hope we can all pause sometime today and consider what a tremendous gift that belief has been in our life.
In my life, when I was trying to figure out what I should do after coming back from taking a year off, I was suffering from pretty serious self doubt and insecurities, I didn’t think the university was going to be in the cards for me.
2
One day, I’m not really sure why or when, but I was at the U of W when a man who was a prof (and still is a prof ) here started talking to me. I don't think he had any reason to talk to me, and certainly no reason to believe in me, but in those two minutes that we talked, he conveyed a belief in me that for some reason I trusted, even though I didn’t have any belief in myself. Because of that two minute conversation, I registered at the U of W and because of that two minute conversation, I’m standing here today.
I’m sure this individual has had a similar impact on hundreds of other students, and probably has no idea (until I find him after the ceremony and tell him)
Many of you, no doubt, have had a similar experience. I hope that we can all walk out of here today, knowing that this is gift which we can easily share, and by doing so, we can change people’s lives.
Congratulations again class of 2013, I hope that road ahead is filled with curiosity, compassion, some fight and a whole lotta love and laughter. 

Saturday, October 19, 2013

The good, the bad and the ugly of media

I was diagnosed with a heart condition when I was 18. I didn't tell anyone. I saw it as my greatest weakness. I was angry and shut down and scared. I threw myself into " healthy addictions" like school, and working out and dieting. My world became very small, constructed out of zone blocks, and the numbers that made up my GPA. I was miserable.

I was never supposed to have gone into heart failure. There was only a 1 % chance of it happening. So, when the stomach ache for 8 weeks ended up being a failing heart, I was completely unprepared. But also, there wasn't time for fear. The choice being, do you want this operation or do you want to die is a pretty easy one.

My heart had failed so much that the blood had pooled at the base of it and clotted. It caused 7 strokes. The neurologist told my family I would definitely be blind, unable to speak, paralyzed and wouldn't be eligible for a heart transplant.

So began my work, a step here, a word there. I was diagnosed with Aphasia, which isn't thought to be curable but I kept working. It was a few weeks into speech therapy when I decided the best motivation for me to not give up was to call transplant manitoba and tell them I wanted to do public speaking. And so I spoke about things I  never had before. Starting with The Health Report on Cjob, when the host, Greg Mackling took an hour to get to know me first, to hear my story, and then let me tell it on air with such integrity, such honesty. It showed me what media could really provide for people.

I spoke at high schools, to med students and at the launch of signupforlife.ca to almost every tv station out there. The online registry tool was announced just a week after, a young woman, Jessica, had passed away waiting for  a heart. I was prepared to answer questions about Jessica.
When asked by CBC Tv, how I felt when I heard Jessica died, I said " I felt terrible, awful, and it real just shows me how we need more awareness about organ donation."
The reporter asked to come to my house to ask me some more questions. I agreed. The conversation went like this,
" Waiting for a heart transplant must be so stressful"
" Actually, it hasn't, I'm so grateful to be alive and healthy, thanks to my lvad"
" Oh, well you must be on a lot of medications"
" Yup, quite a few"
" and they must have a lot of side effects"
" no not really"

When aired, Cbc cut it like this,
" Kristin Mill found out she needed a heart transplant"
It cut to me saying
" I felt terrible, awful."

I was so upset that they would take a quote in which I was talking about another person's death and frame it like I was talking about my own diagnosis.  CTV was a little better but opened with " It's too late for one young woman, but it may not be too late for another"

Thats when I decided I wouldn't do anymore TV.

Cbc radio, however, has been such a wonderful support to me. Terry and Marcie had me on the show a couple times and always gave me so much respect and time to tell my story.  After one of those interviews I got a email from a young guy who had been having heart trouble but had been too scared to get it checked out. After he heard my interview he went to his doctor. It's for reasons like that that I'm glad I've spoken out even if sometimes it gets misrepresented.


Saturday, October 12, 2013

Why Thanksgiving is My Favourite Holiday

I don't like pumpkin pie. I don't love turkey. I could give or take stuffing. I love Thanksgiving because of what it is. Giving thanks. I don't meant it as something cheesy. I mean giving thanks as a lifeboat. I mean giving thanks when it feels like I have nothing to be thankful for.  Giving thanks when I feel like a failure, when I feel like I can't hack it, when everything feels like a fight and I'm tired of fighting.

Gratefulness is easy when my life is going smoothly. It's necessary when it's not. My life was saved by a stranger. Entire teams of doctors have believed enough in me to keep fighting for me. My surgeon said " She's going to make it" when other people said " she's not worth it, she has no blood pressure." My family, my friends, my doctors and nurses fought for me everyday. They still do.

I have to believe in myself too. I have to respect myself too, even with a brain injury, even when I feel like I want to give up, giving thanks is my lifeboat.

Friday, October 11, 2013

Laughter is always the best medicine, even if you're a vampire

I went into heart failure, in 2009, when I was 26.  I lived with a Lvad ( a left ventricular assist device), which is a battery powered internal pump that did the job of my left ventricle. It was controlled by an external system controller and 2 batteries, which I usually carried in my purse. I liked to say I wasn't sick, just accessorized, it just gave me a good excuse to buy a bunch of new purses.

Another interesting by product of my Lvad is that I was pulseless. The machine didn't go boom boom boom boom, instead it was just a constant flow of blood. This was kind of a funny party trick and my 13 year old cousin thought I was the coolest vampire/cyborg ever. 30 year old men? not so much.

Probably my favourite story is the viagra one. Yes. I do have a viagra story. Viagra's initial usage was to lower the pressure in patient's lungs, what it is marketed for now, was a side effect. I'm not sure if I feel more sorry for the patients during this time, or the nurses. I was on three viagra a day. It did nothing for me, thank God, after 6 weeks in the hospital I was already like, " could I have a male nurse? Oh and a sponge bath? And it would make me more comfortable if you were naked too."

I was leaving the hospital, ordered 80 boxes of Viagra and innocently asked my father to give up my meds for me, " forgetting" to mention what meds they were. My United Church Minister Father walked into the pharmacy and the temp pharmacist said at the top of her lungs " so much Viagra! And so expensive!!" What was he going to say? No.no,no. It's for my daughter?

2 weeks later, they tested my lungs and took me off Viagra, and I simply am not desperate enough to look for a black market.


Thursday, October 3, 2013

Dogs dogs dogs

I cried watching this video. The simple act of a dog wagging ts tail to see me, leaning its head on my lap, has almost certainly saved my life, or at least my relationship with my parents. While I was waiting for a heart transplant I needed to move back in with my parents. Let me be clear, I love my parents, I even like my parents, I often choose to socialize them with them over people my own age. But, by this point I had been out of my childhood home for 5 years and I never thought moving back would be in the cards. I was stubbornly independent, and not used to explaining to anyone who I would be spending my time with or when, even if it was at 3 am. At the same time, my parents had recently experienced their daughter go into sudden heart failure, and were, understandably, a little protective. We survived it and we're better friends because of it. The highlight though, was always Finn. Finn is my parents Bernese Mountain Dog, and in my opinion, the handsomest dog ever. Every time I would take him for a walk I was humbled to know that every cute 30 year old who stopped us really did just want to pet Finn. Finn weighs as much as I do, and just knew when I was having a bad day. He'd lean in and wag his tail and I would always feel better.


Friday, September 27, 2013

30 as a Miracle

Today I turned 30 years old. At first sight I might seem quite a few years before the rest of my peers, many of them, married with children and with professional careers. I've known many people  fear turning 30, some even locked themselves alone to pretend it didn't happen. But to me, 30 is a miracle.

It's gotten me to thinking how impossible it seemed at some points in the last couple years to imagine having a normal birthday party, small and intimate, nothing out of the ordinary. I am so grateful to have had that tonight.

I've often said that my medical challenges have been a gift, and most people probably think I'm just trying to be strong or noble. Here's what I found

- that I only was really able to see the beauty in the world until I was told there was a good chance I would be blind.

- Even though my strokes impacted my speech. I now choose my words carefully, and when  I have moments  they come easily, I celebrate.

- I have only found the freedom and peace that comes from letting go of control when I was forced into a situation when I had no choice but to do so.

- I only believed in the good in people when a stranger saved my life.

- I have no fear because I was in a situation when death was near.

I'm lucky, not just because I have survived but because my challenges have made me who I am.