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.