[I apologize in advance for this post. I had to get it out and off my chest so I can move on to better days.]
I’ve been struggling for days trying to describe a certain funk I’m experiencing. As with any new year, it’s a time to look out on the coming 12 months and think about what’s ahead. And that’s what started what I like to call waves of overwhelming despair. I’ve been unable to escape them.
One after another, they arrive without a break in sight
My lung function recently dropped from 65% to 55% after two embolizations and two hospitalizations. I did a good job ignoring it over the holidays as I concentrated my energies on being happy by not coughing up blood. But the cold hard slap of coming back to work this week combined with the fact I can’t breathe as well has delivered a great sense of hopelessness that I will not be able to maintain my life as I know it. What does that mean for the coming year? How many hospitalizations? How many times will I have to tell them at work I’m in the hospital and go through the process to be allowed to work while locked up? At what point will I not be able to continue this crazy game?
I’m lucky to have a great job and one which allows me to work with cystic fibrosis. I’m been doing it for over 10 years but would have worked my way up the food chain to new challenges, or a new company, in normal circumstances. Now the work has become a bit stale and I’m going to have to look for ways to change that and make it more exciting and less of a grind. However, with the clock ticking and my days numbered, a little voice in my head screams out each time I spend a minute of my remaining time writing a pointless email or playing the corporate game of going with the flow. The combustion created by the opposing forces of survival in the real world and the fantasy of making every moment count for something has created internal conflict. My patience for meaningless tasks has grown paper-thin. And one edge of that paper is on fire.
To make matters worse, the mental tools I use to fend off these black moments have failed. Yes, I am lucky. Yes, I have lived past all expectations with a brutal disease. Yes, others have not and I need to cherish each day. However, I want more. I want it all. And I know I can’t have it. I don’t just want it for me. I want it for my wife and I want it for my daughter and feel bad I haven’t given them the storybook life they deserve. And I can tell you that without those two anchors I’m not sure I’d escape some of the more challenging emotions of feeling like life is crumbling or a fear of the future.
Worst of all, I know I have no right to the emotion of despair. I have no right to whine about it. Yet, I can’t help but feel it at times. And that in itself makes me upset. I should be able to look at the big picture of CF and remember those who haven’t been so lucky and just keep my mind calm and my mouth shut. Perhaps this post will help me purge it and get my tools working again. My mantra: I am lucky. I have been given so much. One day at a time. The future will be what it will be.
I apologize for these thoughts and ask you to bear with me as I pick myself up from my momentary weakness and stop feeling sorry for myself. Someone toss me a towel, this water’s cold. It’s time to get out.
The Unknown Cystic 
You’re just as entitled to being overwhelmed as anyone else. Why cant you feel despair from time to time? Sure you’re lucky….sure you’ve had more time than a lot of people….but you’ve felt the pain of every year of it….there’s every reason to fear, every reason to fall apart….You’re entitled. I guess the real trick is going there to visit, but not living there. You’re courage through all of this is something to be admired. Stay hungry for more and the strength will come on its own. Im sure if you ask your wife if she would prefer you or a story book, she would pick you EVERY time….. my best to you and your girls ~j
Juli,
I’d be afraid to ask my wife that question. It depends on what day it is. A day when I’m in the hospital for the 1,000th time? She might want someone else. I want her to have someone else.
And yes, you’re correct about only visiting. I could not live in that place for an extended period of time. I’d have to end it.
Best hugs to you.
John
I feel for you. I am going through a similar struggle as my fev1 dropped from 47 to 42 and I can feel the difference. It’s scary. I know we should be thankful for the years we have been given… but we simply want many more. I wish you all the best. Don’t apologize for what you are feeling. Its your right…
Sorry to hear you’re in a similar place. I hope you escape it soon. I want the years and I want good health. But I’ll take what I can get.
Feel better soon. I’m sending you some CA good vibes.
Hey, you’re more than entitled to feel this way every now and then, or at least that’s what I tell myself when I get that funk you’ve got. As long as it only lasts a few days, it’s a healthy reminder that we have to take every moment as precious since we are among those who don’t go through life feeling invincible and unaware of how to appreciate the little things in life.
I certainly know the feeling about “normal circumstances” leading us to different places than we find ourselves in and I have no doubt that you will figure something out to satisfy your career goals/needs.
I hope I figure something out. The ideas aren’t exactly popping at this point. And that’s frustrating. This periods of of depression feel heavy, like a giant load is strapped to my back. It’s everything I can do to muster the strength to carry one. But I will. Appreciate the visit and comment.
It happens UC. Like you said, those feelings come from a place of wanting more for your family, and that my friend is admirable. However, I’d bet if you asked them, they’d tell you that you’re giving them everything and more.
Ronnie,
Sometimes it’s best not to ask. 🙂 Glad you survived your ski trip. Can’t wait to see more on the baby and wish you much success like we had.
John
No need to apologize for completely normal feelings. This disease is hell. I would challenge that anyone who hasn’t felt overcome by despair at some point is in denial. We only get one life and sometimes it just plain sucks that we were given one where we have to work so much harder for things others take for granted. Always thinking about you…
Stacey,
Yes, hell is correct. When I go to Hell, I’ll get time off for time served. And I’ll get a comfy management job.
My life is good. I can’t complain. I can state my hatred for CF. I admire those who can turn it into a positive. I’ve had too many bouts of hemoptysis to think of it as anything but the worse scum of the earth.
Thinking of you, too. Best to you.
John
Those of us who have been given better CF health and subsequently more time often wonder if we are taking full advantage of it. I do every day. It is human nature to question yourself and it’s a very healthy attitude to have in my opinion. We are not invincible, but we take things as they come. Live the dream and live it well…the good and the bad.
“Perhaps, it’s time to take some of the weight off your shoulders…”
Those are the words you wrote to me concerning my last blog post. It’s good advice and I’m taking it. You should take your own advice too, my friend.
There is a reason you are my favorite of the many talented CF bloggers and it’s right here on this page:
Honesty, vulnerability, humility, and humor all in one package.
Peaceful things.
Friend of Moganko,
Thank you for the compliment. Now I have this pressure of maintaining your readership and of being my number one fan. I don’t think I can live up to that. I do try and be frank here. Thanks for honing in on that. Sometimes it’s uncomfortable but I have a great group of friends like you to help pick me up again. That’s the best part of the blog.
I will do my best to continue to earn your respect.
John
I think that the majority of people, CF or not, want more life. Barring the obvious exception (people who commit suicide) we humans will always want more more more of life. My 90 year old grandma wants more. She says there is still so much for her to learn and do- she hasn’t had enough yet. I think it’s ingrained in our systems, in our blood, and our spirit. The same way a spider will fight with all it’s strength when I’m trying to get it to go down the drain (for this I am ashamed and will try to stop killing spiders..:)), any living thing will do what it can to get more life. And that’s why, no matter how much shit is shoveled our way in CF land, we’ll gladly (or angrily) take it for another month, another day, another minute of life.
As for spending time on meaningless tasks, or doing all that you could be doing, I often find myself in that same thought pattern of questioning. Like, will the rest of my days be spent clearing mucus from my lungs? I’m being “productive”, but not quite in the way I imagined I would be. When I get onto that awful treadmill of despair, I ask myself, “Can THIS, my life as it is now, be enough?”. I feel despair when I compare how things SHOULD be vs how they actually are. But sometimes, once in a while, I am actually fully okay and content and grateful for how things are right this very second. “Should” is a prison- stay away. As always, thank you for your beautiful writing, and your beautiful heart. ~Lizi (I’m on CL if you want to know more about me)
I could just say “Ditto” and link to your post on my blog. You put into words what I’ve been feeling/felt quite a bit lately. Sometimes I even think, “wait a minute, this can’t be happening to me…I’m the odd’s beater, remember?!!!” I then think I should feel guilty for wanting more–to see my children married, to see grandkids, etc. since I’ve passed the other benchmarks I set for myself. I feel selfish for wanting to see/be with grandchildren when some other CFer’s never got to even experience children. It’s sure a vicious cycle we can get ourselves into.
Just wanted you to know you’re not alone, crazy (well, maybe or maybe not…) or selfish in these thoughts of yours. Thanks for helping me think through things too.
Sherri,
So happy to see you back. I have those feelings of being selfish. I felt bad about posting the post. However, if the shoe were on the other foot and my life was shorter, my one wish would be for every CFer to live to be 100, have the best life, many children and even more grandchildren. And I would want them to do all guilt-free. But still, it’s important to be respectful and that’s what I try to do. I am grateful for that time I have that others don’t. But it’s no day at the beach some days, but it is bonus time and to be enjoyed.
I’m glad I’m not alone and thank you for letting me know I’m not crazy, though I know I really am.
John
Lizi,
Very interesting and insightful comment. Spiders are the only creatures I don’t hesitate to kill. I don’t like them and I know they’re out to get me.
What you describe is what I like to call “moving the line in the sand.” I’ve drawn a line in the sand with CF so many times. And I’ve said I won’t cross it. But then I step over that line and I draw a new one. I do this over and over because I want another day, another hour, another minute.
You hit the nail on the head about having moments of contentment. I have those. They are fleeting but satisfying.
Thank you for your kind words. I would like to know more about you. What is CL? CysticLife? Let me know on the blog or email me at unknowncystic@gmail.com how to find you there.
You rock.
John
So, I know we “found” each other on CL, but I just wanted to reply to your comment here…
I hate spiders too, but I do feel sorta guilty for squashing the life juice out of them.
You are right on with the drawing the line in the sand- I’ve said so many times “I will not tolerate any more than this. That’s it!” But of course, something else happens, and it somehow becomes part of my reality and the line gets redrawn. Survival mechanism at it’s best. And you know we’ll keep on doing it, right?
UC, aka John to some,
Your honesty is refreshing. I was in my own pity party earlier this week. My first appt. with a nephrologist was Monday. He said normal kidney function for my age is 90 percent. Mine is 40. Seriously?! I’ve hung on this long waiting for the lungs to crap out to possibly face dialysis? I know it has happened to other CFers. The worst part of this disease is the permanent feeling of waiting for the other shoe to drop…and drop…and drop. Then I ditched the poor, poor me routine. But the tears were cathartic. I hope you feel peace soon.
MAL,
I feel like CF kicked me in the gut when I was reading your comment and learning that your kidney function is 40 percent. Argh. I wish there was something I could do to help. We’ve never met, but I feel like we’re friends. I don’t want anything bad to happen to you.
I hope one day someone captures what it’s really like to live with cystic fibrosis over time and the fortitude it takes to keep going each time it rips a piece of flesh away, or takes away something we love to do. I offer you a guest blog post again if you’d ever like to get anything off your chest and tell this disease where it can go.
Wishing you the best and much strength.
John