Seasons

The end of winter brought late rains and unusually dreary weather. Winter is my least favorite season and too many days without sun makes me feel so glum. The wet dark overcast days seemed to reflect the heavy feelings that were floating overhead as I set a date for transplant testing and received the information  packet in the mail.

I always knew when the time came I would get transplanted and I often thought that being able to go through the process and knowing there was a second chance of life would bring some excitement and maybe even peace knowing that even when CF have ravaged a body beyond repair there is still a chance at a prolonged life. So many blogs seem to highlight gratitude and hope and joy towards transplant. But if I am honest, the heaviness and the sadness that has enveloped my heart is nothing like I would have ever expected. I keep waiting for my perspective to change, but I feel stuck in dreading every aspect of transplant.

I know some of the feeling fighting for space in my mind may not be 100% logical, but they are there just the same. I am trying to honor the process, the grieving and hope that it will make way for acceptance in due time. I know in the CF world blogs and social media often portray CF patients as beacons of hope and inspirations of bravery and strength. But I am sharing my raw uninspiring emotions in hopes that someone else may read them and feel that they are not alone in their real and raw feelings. Because to be human is to feel the whole spectrum of emotions and I think it may be a disservice to ourselves and others to only show the world the feelings that are inspiring. Because to be inspiring all the time is not human and it is not authentic. So know I am writing this not as a way to be pessimistic, but to say that in the realm of all emotions right now I am feeling some of the ones that nobody enjoys, but we all experience from time to time.

So much of having CF is holding on to hope and often a bit of denial because it is what helps us face each day especially when hardships arrive. When my doctors told me that I needed to get evaluated for transplant if it was an option I wanted to have in the future I felt as if they were giving up on me. I know this isn't logical and the logical part of my brain is saying that they are being proactive and doing what is in my best interest. However, it felt like they were washing their hands on the situation and passing me off to someone else as if they had no hope that they could help me anymore. It squelched the feelings of hope that maybe I will stabilize, maybe the 3rd correctors will help me, maybe I can persevere.

In combination to this feeling of being given up on I also feel so many feelings of failure. Again, the logical part of my brain keeps saying that as someone born in 1984 I have had a good run and nobody would have expected a CF baby to live to 35 (almost 35, but I figure I will make it another few weeks) and for that I should feel like a huge success. But the truth is that just because I made it longer than was expected for someone with my disease doesn't mean that I feel satisfied with 35 years and I want to live as long as every other damn person wants to. So feeling like my lungs may be failing me is sad and hard and feels frustrating no matter what the circumstances are. And I wish so badly that I could keep pushing on and break records (oldest CFer alive anyone?) and do so much more.

I feel scared! I feel terrified of the barrage of tests that take place during the evaluation, I am scared of the pain, the wait for lungs, the decline in my health, and the idea of dealing with a whole new unfamiliar disease. I am scared of the life expectancy and almost every detail that is involved in transplant. I am not scared to admit that I am 100% afraid of what lies ahead. It is not inspirational and it isn't brave, but damn it I feel scared!

I know this rainy dreary season in my life is just part of the human experience and I am trying to allow myself grace and understanding as I sort through all the emotions that seem to be passing through me each day. I want to experience each negative emotion and know that these feelings are valid and they are probably very normal and that this season will pass, but it is okay to not be okay at this very moment.

The second day of spring the rains stopped in Northern California and as I stepped outside to prune the fruit trees I noticed butterflies swirling around above my head. And the longer I stayed out the more and more I saw. Soon the whole sky seemed to be filled with these fluttering painted ladies. The late rains brought an abundance of butterflies migrating from Mexico and they found their way to my little part of the world and filled the skies with hope and beauty and a touch of magic. I can't help, but hope it is a sign that after the hard dreary days in this phase of my life lift that maybe when I step back out into the sun I will be surprised with how beautiful life can truly be.