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January Blues

I haven’t been blogging much lately despite the fact that I promised my blogging would pick up again once the holidays were over.  I apologize for the (at the time true) statement which turned into a lie.  After taking down the Christmas decorations I found myself in a slump, and I’m still there.  I typically get this way once January hits, but this year it’s hit a little harder than usual.

I haven’t been posting as I hate writing sad posts, but as this is part of CF that I’ve had to deal with, I felt the necessity to get it off of my chest.  I warn you now though that if you don’t want to read a sad post, please just skip this one and rejoin me for my next post which will (hopefully) be much happier.

Over the past few days, a revelation dawned on me which made me quite blue: according to the “average life expectancy” (currently 38 years) of people with my disease, I now have far more yesterdays than tomorrows.  I obviously hope to far surpass the average life expectancy, but just thinking about this fact made me extremely sad.  There is so much that I still want to do with my life, and I feel like I have been wasting time recently.  I also realize how much I want to be there to see my children have children, and I worry if I will make it there.  None of us have guarantees, and I believe I’ve stressed that enough, but CF causes you to ponder your own mortality much sooner than you should have to.

I also started thinking about the things I would like to do, if I didn’t have CF.  I would love to travel the world, but my medications and requirements to stay healthy make that such a HARD thing to do.  I would love to climb a mountain.  I’ve always been fascinated with mountains, but I know my lungs couldn’t do it.  I would thoroughly enjoy being a nurse, but the germ exposure is too much of a risk.  I would love to learn gymnastics as I’ve always found the sport to be quite beautiful.  Again, my lungs wouldn’t handle it.  Most importantly, I would have at least 3 kids.  I’ve been quite sad thinking that our first child will probably be our last (at least naturally, although adoption or surrogacy is always an option).  I think that’s the crushed dream which I find it the hardest to accept.  Pregnancy can be quite difficult on a CFer, and I don’t know that I will risk my health to carry another if I already have one child to take care of.

This disease needs a cure, that’s for sure.  I want to be here for a very long time, and I want to raise my CHILDREN and see them become good, kind people.

Again, my apologies for writing such a sad post, but I felt it needed to be said.  Hopefully the next post will find me much more chipper and optimistic!

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A book full of tears and thoughts

SPOILER warning: If you have never read The Time Traveler’s Wife by Audrey Niffenegger or seen the movie and you plan to do so, please skip over this blog. It will contain spoilers from the story.

I never expected when I woke up this morning, that I would be blogging about a book.  A book that, until I was coerced by my book club, I had no intention of reading. However, as I sat on my couch, sobbing through the last 60 pages or so, I knew I needed to talk/write about it.

 

This book was difficult for me to read and fascinating at the same time. I felt a connection to the main character, Henry, because he also has a genetic disease which he has no control over. Granted, CF and time traveling are just a tad different, but regardless, he can’t control what happens with his disease. I often feel like that’s the case with CF as well.  We can try everything to get it right, but sometimes we still get sick and need IVs or extra treatments. Sadly, I have been reminded of this aspect of CF again and again with friends who have suddenly become ill.

Having that connection with the main character, I was drawn in pretty quickly to the book. So as the novel continued, I found myself struggling and relating to their journey with infertility/miscarriages. This section was incredibly difficult to read.  As Henry and Clare (the two main characters) make it through 6 miscarriages, I found myself wondering if I would have stopped at one.  These thoughts may also be due to recent circumstances in the CF community, but either way it made me think. Naively, I thought that this part was going to be the most emotional section, but I was wrong.  Definitely wrong.

As the book began nearing it’s end, Henry has traveled into the future and has seen the date of his own death. He knows his death is coming, much sooner than he would like, and he begins to think about his life.  He think about his wife and the great moments they have had and also the sadness that has engulfed their lives at times. He thinks about his daughter and how 5 years with her is not enough…how he longs for more time with her.  Henry is suddenly forced into the mindset that I believe many people with chronic diseases face at one point or another: there is just simply not enough time.

I’m one of those cysters who firmly believes she will live a long time with this disease or that it will not be the disease that takes me out of this world. That being said, I have still thought about my life ending early. I have thought about saying my final goodbyes to friends and family…and to my dear husband and it tears me up to even imagine it.  So, when I read about Henry thanking his friends for their loyalty, support, and love, and when I read about his goodbye to Clare as she tries to comprehend what is happening, I bawled. I’m not talking about little tears here and there, I mean full-out sobbing. I have imagined this scenario enough that reading it seemed too real. 

A few pages further, Clare (Henry’s wife) opens up a letter that Henry has written to her right before he passed away.  He talks about how he cherished each moment they had together and he would give anything to have more time. . . and as cysters and fibros, that’s what we all desire more of..time.  We want more time in the day to do our treatments, exercise, eat a gazillion calories, and still live some sort of life. We want more time between PICC lines so that we can feel normal for a bit longer. We usually fully understand how precious life is and we desire more time with family and loved ones above all else…

So the book left me realizing that I have, in recent days, been consumed with the desire to get through the day and finally get to sleep (our days have been incredibly busy with very little besides work).  I have been missing the opportunity to live every moment to its fullest.  I have been neglecting holding my husband’s hand just a little longer while we sit on the couch. I haven’t kissed him as much as I want to and I haven’t said I love you nearly enough.  All I desire is to have him home with me right now so I can hold him and never let him go.

CF or no CF, none of us can escape time.  All that should matter is the here and the now, and a lot of us (myself included) forget this way too often.