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
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