Tuesday 29 December 2015

29

From the whomb


I find it very hard to believe that it’s been twenty-nine years since the day I was born; it feels like with everything I have been through and accomplished in life I should be so much older. 6 Schools. 13 different places I found myself living. 39 Hospitalizations. 2 marriages. WOW! Just reread that and felt overwhelmed.  I guess it’s why certain people over the years have said I have an ‘old soul’, because most people haven’t gone through in their entire lifetime what I have had to endure in my short twenty-nine years, especially with regards to my battle with Cystic Fibrosis.

I called my mother last night to get some details of the night I was born. I also can’t believe that it was the first time we were having the conversation. I know almost every detail about my being diagnosed with CF at three months, but knew almost nothing other than the time of when I was born. I guess this in a way is symbolic of how much the disease has captured my attention and the attention of those around me who watched me grow up. My Mom said it was a rough Christmas that year because she was uncomfortable from being 9 months pregnant. She was so excited though as with her first child, my big sister, Kayla. She recalls having a very good pregnancy, with no issues whatsoever.

December 30th, 1986. I googled what the weather was like that day because Mom didn’t remember. It was -4c, cloudy and very high winds. My mother, Charmaine was admitted to St. Claire’s Hospital after her water broke early that morning. With very little happening, Dr. Sevier’s intern decided to start her on the drip to try and get things moving along, and soon after decided to have an epidural. It was soon time for her to push, but things took a scary turn and Mom remembers very little after that. My heart rate was dropping rapidly, and it was determined that the cord was wrapped around my neck, cutting off oxygen supply to my brain. Things happened pretty fast after that Mom said, as they literally reached in and pulled me out, unwrapping the cord along the way.

At 19:33, weighing 8lbs 9oz, Jamie Lee Francis Chafe was born into the world.

Mom said it took about half an hour for me to transition from a blueberry to a bright, peach colored baby because of the issue of being corded. She was very scared but once she held me in her arms, saw that I was ok, she says that it was the ‘greatest relief’. Not knowing she was expecting a boy, she was excited to now have a girl and a boy. And a mommy’s boy she got!! Little did she know at that time that there would be more of those uneasy moments throughout the life of her precious baby boy. I guess maybe a little foreshadowing? So that’s that! How I came into the world.


Approaching thirty

I discussed in the blog prior to this one how difficult my 28th year was, so it’s been really difficult for me to look forward to turning 29 with anticipation. With that said, nothing pisses me off more than hearing people complaining and literally dreading turning another year older. Growing old is a privilege denied to many people. So yea, I have had a very shitty year, but to be honest I am still in shock I made it through and I am blessed to see another birthday.

It’s funny cause I remember being a young boy, 8-9 years old when I learned the reality of the disease I suffer from, and at that time of course the average life expectancy was nowhere near what it is now, and I remember thinking, “If I live to be thirty, I will be ok with that!” Kids at that time were lucky to start kindergarten, so I was already beating the odds, and it appears I am still doing so. When I was sick back in 2012 I was so convinced that that was it for me, that was the end and here I am, almost 4 years later and still kicking.

As I grow older though, so do my fellow friends and fellow war mates. Having friends with Cystic Fibrosis was really rough this year. I lost a total of 14 friends, Megs and Cory taking the greatest tole on me because they had such a direct impact on my life and who I am. I guess words are words, and no one will ever grasp how much I mean it when I say that I continue my own war with this disease in their honor. I fight with it every day not only for myself, but for them. Because even though fighting everyday with this demon is a challenge and can be very exhausting and I would just rather not have to deal with it sometimes, I STILL get to deal with it. In my own dark moments, I complain to myself about how shitty life is, and their defeat reminds me of what’s important. And that is that I am still breathing. For them. For me.

I’m pretty sure this time next year I will be having my mid-life crisis. I think the reality that I will have made it to see 3-0 will just be a very overwhelming experience for me. I am already working on big plans to celebrate, (please God I am still here) with my family and friends in Las Vagas. I’m really hoping that the people who mean a lot to me will be able to make the journey to help me celebrate the milestone and nothing short of a miracle.

The year ahead

But first I have to get through twenty-nine. My biggest goal for the coming year, and I guess goes along with a new year’s resolution is just to get back to ME. I spent 171 days in the hospital this past year so I feel like I have lost a little bit of myself during that time, and I want it back. I want to get back into reading as much as I did because I find it really good for my soul and meditation. I haven’t been to the gym or walking since I can remember, so I really want to get back into that. I am giving up soda. (Some reading this who really know me are laughing), but I am serious. I hate how it makes me feel and I’ve seen what it can do to rust on a car, ok, so I really don’t need that shit in my body.

Since I can remember I have wanted to write a memoir. And thanks to my Aunt Heather who has already written one for sending me some tools to do so, I plan to do that in 2016. Since I can remember I have wanted to write my story on paper because I truly believe that it will be inspiring to others. To overcome what I have in my lifetime hasn’t been easy but it has shown that we can get through a lot more than what we think we can, and we can rise above spiritually the hardships that befall us in life to make up better people.

My health has to become priority again, which means I have to find a better balance between work, pleasure and personal life. After all, I am no good to no one if I am in a hospital bed.  And I do know that emotional and spiritual health have a direct correlation to physical health and well-being so if I get back to doing my self-care then I think that will give my body the boost it needs to get me on the right track to Vegas!

A heartfelt Thank-You

There are no words to express the gratitude towards the people; family, friends, acquaintances I see at the grocery store who ask about my health, people reading this blog – How does one manage to find the words to say Thank-You for the love and support I have and still receive on a regular basis? It’s like the words don’t exist in the English language to express my gratitude to have you all along for the ride. I feel like I have a bunch of warriors standing at my side so that when I can’t perform at my potential, you guys pick up the slack and make life worth living. So if thank-you is what can be said, though I feel it’s not enough…..Thank You. From the bottom of my heart.


Please raise a glass with me to 29, and 2016!!!!

Peace and love,

Jamie 

Monday 14 December 2015

2015, A year in the life

It’s been so long since I last wrote a Blog that I don’t even know where to begin. What a year 2015 has been for me! I wish I could say that it was the best year of my life thus far, to continue the pattern that is my life for the past 4 years. Unfortunately for many, many reason’s, it’s actually been the toughest year. Starting January 2nd until now I have had 6 hospital admissions with Cystic Fibrosis related exacerbations. The longest admission taking in the months of May-August really took a tole on my mental and emotional health, and I feel like I haven’t had a chance to really get back to me because since then I have been slammed with 3 other admissions. So needless to say this year has been exhausting in every way imaginable. It’s really opened my eyes to the reality that is Cystic Fibrosis and my fate that I will eventually have to face.

Through pain and suffering though, life has a way of teaching us lessons about ourselves. For example, I have learned that I am an Oscar worthy actor. So much of my life, I have had to put on a happy face and pretend that everything is ok. Going to school as a child and hiding the fact that I lived in an abusive household. Having CF check-ups and lying to the Doctors saying I am taking my medication and no, my mother does not smoke in my face. Marrying a woman, knowing full well that my human nature included little attraction towards the opposite sex. So you see, I’ve spent so much time acting that I guess I have just carried that unhealthy habit with me throughout different areas of my life. Unlike the examples I just gave though, now I am only hurting myself. Before it was effecting other people, but now I am only causing damage to myself.

I understand though why I wear that ‘mask’. It’s because of fear. It’s hard for a 28 year old man to except his reality when his reality is not typical of a normal 20-something. To admit to oneself that you have a chronic, life threatening illness is proving to be harder for me than coming out. It’s a very hard pill to swallow. Don’t get me wrong, I am not in denial in no way about the reality I live, but when your mind and spirit are as strong as Goliath, to accept the reality of failing lungs is devastating. 6 admissions is not my normal. Normally I am admitted once, and at worst, twice in one year. So this has been a record breaking year, and not in the same way Adele is breaking records and everyone is partying and sending congratulatory gifts. No, this is in way that leaves Jamie to spend a lot of time in private, crying and wondering when the next ‘battle’ will be with my ailing health.
The other part of why I wear this face for the world is because I don’t want anyone to see me as a scared little boy who just needs to be held. All my life I’ve had to be the strong one. I couldn’t let people see me as anything but that for survival purposes. I was victimized enough as a child; I can’t bare to let people throw ‘poor Jamie’ pity parties to help me further accept my own limitations.

Turning point

The end of November I was admitted to the hospital once again for pneumonia. I spent three days in the ICU (that I can barely remember because I was on such strong pain medication) and spent a total of 11 days in the hospital. My best friends from town, Deborah, Becca and Amy had a preplanned trip to Clarenville to spend time with Perry and I and I just assumed that they would want to cancel because I was sick in the hospital. To my surprise however, they insisted that it was even more reason for them to come and visit. And it was through that whole experience that life taught me something. I assumed they wouldn’t come. I figured when life gets tough, people don’t need to hang around and hold me up for support. If I am feeling sick, I can’t expect my clients to understand that I need to make different arrangements to get a project done. When I feel like doing nothing at all because it hurts to simply breathe, I am the chef in the family so surely I can’t expect Perry to make his own dinner after working a long hard day himself. But see, all of these are assumptions. And all of these things go back to me being such a great actor! (Seriously, someone call the Academy) My friends coming out taught me that I have a struggle but it doesn’t mean I have to make my struggle any worse than it already is by assuming no one will help or be supportive. We had such a wonderful weekend. They spent most of the time at the hospital, heightening my spirits and feeding my soul with the medicine I so desperately needed at that time. My Dad and my little sister and baby nephew even made the trek out from town to see my at the end of my admission when my spirit is most fragile. All of these people that LOVE me made the decision to not allow me to sulk in my despair and in fact taught me that allowing people to love you through the storms we all face in our lives is actually the most beautiful form of compassion and love there is. And not to be ignored, Perry’s love and grace was there as always.

So I guess what I am trying to learn from all of this going into 2016, is that maybe it’s ok to say no to something I feel I should do. My lung function is resting in the mid 30’s, so it’s not like I don’t have a legitimate excuse. After all, I am no good to anyone if I am in the hospital and it’s no good for me to burn myself out. I may be able to extend my life before transplant by learning to say No, who knows! 

Where I am now

Right now as it stands, I am getting closer and closer to transplant. I haven’t felt the same health wise since my January admission. Something is different. I can’t quite put my finger on what it is, but it’s different. Sleep is so difficult and I am not a fan of sleeping meds because they make me so damn groggy the next day. My breathing is so different. I can’t do stairs like I once did. Even the thought of going to the gym and getting on a treadmill makes me tired. Basically I feel like my body is telling me and giving me no choice but to slow down.

Taking one day at a time is proving to be quite the challenge especially with my career. Not knowing what to and what not to take on. After speaking with my transplant team in Toronto, they said unfortunately there is no guide book at this stage of my transplant journey. They just told me to listen to what my body is telling me and do the best I can, and that is changing daily. What I could do yesterday may not be what I can do today.
I missed my entire summer, so I am counting down the 190 days until Perry and I head over to Europe for our next adventure, please God I am able to go. I just live for travelling with him and seeing the world and its wonders. I’m putting that before me to give me a goal and keep me motivated and focused to get to that point. It’s so important for me in my battle with Cystic Fibrosis to continue to set goals for myself. I would really like to get back to the gym after Christmas as well, even if I walk in for 10 minutes to go on the treadmill and walk out again, I’m over what those built, muscular jocks think of me up there! I am after all on a journey of my own.

Confidence Restored

One positive thing that came from this year though is a huge boom in my Interior Design business. If someone was to tell me that I would be this successful as an Interior Designer out of a small town I would have laughed at them. I have had a total of 14 compete projects this year, a big jump from 6 last year. And although business has picked up, I was really starting to let my depression creep up on me and convince me that I wasn’t talented or worthy enough to be doing what I love. But I thankful had one project that taught me quite the opposite. The homeowner’s game me full reign on the end result and their trust in me was exactly what I needed. The result was astounding – some of my best work and will be featured in the Spring issue of Home&Cabin magazine.

I have always had a passion for singing. My lungs prevent me from being as good as I once was, but I did post a few videos to social media and got such a great response. It was very cool to see that even though I am limited with air right now, people still appreciate my voice and hear the message I am trying to spread, that even when weak, we can thrive and bring joy to others. I’d be lying if I said that’s one of the things I am looking forward to most about having new lungs, is the ability to sing the way I once did. To be able to have enough air to carry notes. It’s going to be such a thrill!

Bent, not Broken

So that’s been my year. It fucking sucked for the most part – health wise that is. I chose to live my life with the idea that pain is inevitable. It’s how we react to it and let it shape us that matter. Everyone has their own battle to face and someone always has it worse than I do. Just recently in the news I was reminded of that with a little girl who was the only survivor in her family from a house fire. All she wanted was Christmas cards. A lesson for us all, indeed!

I wish I could tell you that I don’t have bad days, but I’d be lying. In fact most are lately. It’s hard to keep positive when you have a dark cloud hovering over your head. But I am trying my best, and right now my best is the best I can do. 

Peace and Love,


Jamie