When
things get bad, you never think about the possibility of things actually
getting worse. Is it our natural narcissism? Our feeling of entitlement because
of the society we live in? Why do we feel we have the right to health and
happiness? Why should I feel that things
couldn’t possibly get worse? I’ve been through so much already!? Right? I don’t
know. It’s
a way of coping I guess. It sounds so egotistical when you see it in front of
you though doesn’t it? Fairytale thinking that’s possibly only resolved by a
good dose of perspective.
I
remember watching Michael J. Fox being interviewed on a talk show. He was
talking about his kids and the importance of maintaining perspective. He told
this story of a woman in Mozambique whose village flooded. She was pregnant and
about to give birth so, to save her baby she climbed a tree and gave birth.
Apparently whenever his kids would come to him with a complaint, he would start
with, “A woman gave birth in a tree, whatd’ya got?” - in hopes of reminding
them to keep things in perspective.
It’s
a good reminder for us all I suppose. But, let’s be honest. There are times
when life is just relentless and your ability to keep things in perspective isn’t
as easy.
I’m
writing today, not to be judged, not for sympathy or to have people feel sorry
for me. That’s just not the person I am. The reason I’m writing, after all this
time, is to help get myself out of this discouraged, frustrated, plain and
simple shitty feeling. And I’m sharing this, maybe because it will be the
perspective someone else needs, maybe because it might help others understand
where I’m at and what I’m going through. And ya, maybe I just need some positive
feedback, encouragement, love, support and kindness. I’ll admit it.
I
haven’t been able to breathe properly for 4 weeks. I mean really, I haven’t
been able to breathe properly for the passed 5 years but at least there have
been times in the passed 5 years when I could literally climb a (small)
mountain (ok fine, it was more like a steep hill then an actual mountain)
without feeling short of breath. And that is an amazing feeling. It was only
three months ago that my lung functions were in the low 80’s, which is amazing
for me! They haven’t been that high in years! My lung functions are much lower
at the moment, which is not a new experience for me. But this time feels very different.
March
was an awful month. I lost my greatest source of stability. That person was my
Grandfather. He was this solid, supportive and incredibly caring man who was like
the tree trunk of the family. He was 92, lived an incredible life full of
amazing moments of fun, travel, laughter, kids, grandkids, great-grandkids and
absolute unconditional love from his wife, family and friends. No matter how
old someone is when they die or how they go, it’s just fucking brutal for those
who loved them.
During
my grieving, my husband and I got some pretty devastating news from the
fertility clinic we’ve been going to. It’s no secret that James and I want kids
and have been pursuing it for about 4 years. I won’t go into details because
it’s an extremely personal experience, but it felt like a huge weight had been added
to this month of torment. Then because I wasn’t sleeping well, was stressed and
anxious and wearing myself out, I was put on IV antibiotics because my lungs
were starting to suffer. At the same time, I caught a cold, which made things
exponentially worse, and I ended up in hospital two weeks later with a raging
lung infection and pneumonia. If you know me at all, you know how much I hate
being in hospital. Having to sleep in a 1 star hotel bed (at best), eating food
that literally smells like vomit (well let’s face it, I don’t eat hospital food
period), being leashed to an IV pole, having small irritating tubes up your
nose (for the oxygen), all while my eyebrows get totally out of control and my
hair gets greasier by the second. AND, hearing about other peoples bowel
movements outside my room! I’m not joking! There is a nurse and a patient right
outside my room talking about the patients BM’s!! Get me outta here!!
CF
is such a sucky disease to have. There are moments that are so scary for people
with CF. For me, those moments are: talking about transplant for the first
time; having to get a vascular access port surgically implanted because the
need for IV antibiotics is too frequent for PICC lines anymore; when the
antibiotics you’ve relied on your whole life to fight lung infections start to
become ineffective; and when you have to go on Oxygen because your lungs are
not working well enough to Oxygenate themselves. I always knew my CF would
progress and my lungs would eventually decline, but when it happens, it feels
so much worse than you could have ever imagined.
These
are moments when keeping perspective and thinking about that woman giving birth
in a tree is just not as easy to remember. I guess I said that already though
didn’t I.
I’ve
never hated CF more than I do right at this moment. It’s the reason why I can’t
have children. It’s the reason why I can’t work. It’s the reason why I can’t
see my nieces and nephews anytime I want. It’s the reason my husband and I
fight sometimes. And most recently and importantly, it’s the reason why I will
not be able to be with my sister for the most important day of her life… the
day she becomes a mother. Fuck you CF. Yup. I said it.
But
look what I’m doing. I’m bitching and complaining about how shitty things are
for me right now when in reality, it actually could be or get worse. Like I
said at the beginning, when things are really bad, you just can’t imagine how
things could get worse. But they could. And they might. (And they already they
did). Which is why I’m reminding myself, through writing, talking to my
husband, my family and friends, and thinking about that poor woman giving birth
in a tree(!); that it is so important to be grateful for what you have at this very
moment. There could be someone reading this that is in worse shape than I am and wishing they were in my position.
I’ve
given myself permission to cry, whine, bitch and complain for a period of time,
but after that’s out of my system, it’s time to get back to my old self, and be
positive and appreciative. Or at least be ok with reality.
There
are people all over the world who are having a worse day than I am. And yes
there are people all over the world who are having a better day than I am. But
I’m learning to be ok with wherever I fit in the middle of that. Learning to be
comfortable with the feeling of not being able to breathe is a challenge, but I
can do it. I can do this. There will be moments where I am filled with intense anger,
frustration and pure hatred for my disease, but that’s ok. Because you know the
old cheesy saying, ‘tomorrow is a new day’. So if I can just get through today,
even just the next 10 minutes, there is potential for change. Not being able to
breathe is really shitty and uncomfortable and it feels like your whole world is
falling right on top of your chest. But giving birth in a tree can’t be any easier! And on the plus
side, I’m catching up on a shit load of Netflix!
Before
I sign off, I’d like to take a moment to thank my family and friends that have
taken time out of their busy schedules to come and lift my spirits, bring me
food despite my uncooperative appetite, help me with whatever I need help with
and for distracting me during moments of despair. I have the best family and
friends anyone could ever ask for. Thank you to those who have emailed me kind
and honest words of encouragement. Thank you to my husband James who has
probably been the most patient with me during this unruly journey back to
health. I am so lucky to have such wonderful people in my life. And to my
Sister who is one of the most amazing woman I know, you are going to be such an incredible Mom to that little baby of
yours. And thank you for waiting as long as you possibly could for me to try and get there. Love Love Love.