I have written this blog entry over and over again in my mind. I want to be able to fulfill my commitment to update on a regular basis. I want to be able to maintain a connection with our loving and supportive communities. I want to be able to share in the wonders of post-transplant realities. Yet, I procrastinate to no end. I avoid the blog, or rather, I avoid everything that it has come to represent. The associations alone come with waves of nausea, a tensing of muscles, pounding headaches, and an overwhelming emotional heaviness that bears the weight of deep-seated grief.
It only takes a brief moment to transport back to the ICU. I find it hard to escape the magnitude of emotion. My body remembers. The sensations become real all over again. It does not feel safe to return to that point of mere survival, and re-expose myself to those vulnerabilities. I do not have enough distance from the trauma to reflect in a meaningful manner. I desperately want to be able to move forward without those shadows. The reminders are ever-constant, and ever-daunting, in many different forms.
I continue to live in the present. It continues to be my salvation against the realities of Cystic Fibrosis and organ transplantation. I avoid thoughts that extend beyond the present. It requires an impressive effort to remain in that present. There is a certain level of denial that makes it possible to get out of bed. The rest becomes a source of motivation to live each and every day with gratitude.
My love, James, had a milestone birthday over the last weekend. His 30th birthday is a testament to his passion and drive to survive. It also represents a vast amount of love and support, and a genuine commitment and dedication to James' survival by an incalculable number of individuals.
We would not have been able to arrive here alone.
On February 23, 2013, James was no longer able to breathe on his own. Mechanical ventilation was failing to decrease James' carbon dioxide levels, following several weeks of acute respiratory failure. The details of the day remain vivid in my mind, and I refuse to re-visit the horrors of that day. James' birthday celebrations were put on hold. We had tearful good-byes. James went down to the OR, and was placed on ECMO, an artificial lung system.
A year later, James has few memories of the last year, and was able to mark his birthday as a true celebration of life. We look forward to sharing photos from the event. I will, as always, make effort to continue to update.
Muscle and psychological memory is a powerful thing. There's absolutely nothing wrong with the idea of shifting the purpose of this blog from you and your family, and more about advocacy about CF. James will always have CF, but he is so much more than that (I know, duh). Now you have the opportunity to blog about every-day human things, or living an entirely private life, both of which are completely allowed and encouraged. Just as you used this blog to document all the trauma before, continue to document all the positive things now if you have a mind to. The future is entirely open for the two of you to face together. This is most certainly a new chapter, and your strength and perseverance have led you to a very neat place. The struggles of what came before are certainly still fresh in your memories, but it's certainly a night-to-day change, yeah? Go, live life, enjoy every precious moment, get back to the average milestones of life. Happy birthday, James, and make it the best year ever, make those memories count! :)
ReplyDeleteDearest Gin, I appreciate your kind words. I have read them over and over again. I appreciate your assurances. We are so grateful to know you! xoxo, Adena
DeleteEvery word of this is so powerful and spot on. The comment by Gin was so perfect, that I will just say ditto.
ReplyDeleteKeep loving and living. I'm so so happy that you are together for each and every day.
- Liz (cf wife)