For this final installment of this series on my journey with grief, I’d like to focus on two themes. Since Kim passed, I have been aware of and navigating my way through these, but they have not fit into a specific chronological time frame. So here we go.
In the epilogue of my book, Big Breath In, which I rewrote after Kim had passed away, I said that my resiliency was “running low these days.” Well, I admit to you now, that this was, in fact, not entirely true. My resiliency is, in fact, not “running low these days,” it is actually nonexistent (I felt I had to provide some hope at the end of the book).
I have always prided myself on being able to function well under pressure. I’ve always been attracted to areas of leadership in crisis, being able to lead and act in a calm and reassuring way even when the present was in chaos and the future uncertain. It is what attracted me to hospital chaplaincy work and other leadership areas in which I have worked and volunteered.
However, as I mention at the end of my book, after living through the loss of my brother Warren, the effects of respiratory failure due to Cystic Fibrosis, waiting for and receiving a double-lung transplant, walking with and caring for Kim for the past five years, and then, of course, the grief over losing her, I admit that my resiliency has run out. I feel like I have no backing to hold me up so that when any challenge comes my way, I simply fall over. Something as simple as a machinery breakdown on the farm has had me walking away from work and simply going home (my family has become very understanding of my antics). The slightest drop in my daily lung function test has had me canceling appointments, commitments, and work for a week or two. My lack of resiliency has led me to be panicked at the slightest setback or confusion.
Now, there have been moments when I've felt that a fragile wall has been built behind me, something to prop me up so that when a challenge or hardship comes my way, I can feel myself rebounding back a little. However, that doesn’t last long. If any negative pressure or challenging situation is not resolved quickly, it is game over, and I am back to my huddled position at home. It appears that the person who used to thrive in times of crisis, who prided himself on being able to take on burden after burden, is finally burnt out.
I wonder if resiliency is like trust, that once broken, it takes a very long time to build back, and maybe it never truly comes back as strong as it once was. But perhaps resiliency isn’t the key either. If resiliency implies returning to the original shape, I know that is impossible. Maybe it is not resiliency I should focus on, but transformation. I know there is no returning to who I was; there can only be transformation into who is now taking shape in me. I'll have to think about that some more.
Whenever someone is reading my book, and they message me that they found a particular part of it meaningful or funny, I right away go and reread that section (I think this has to do with some sort of insecurity within me or something). I was recently rereading a paragraph about my waiting for transplant, and I was struck by how similar my experience of grief has been to that time of waiting. During my wait for transplant, I was simply waiting. There was nothing I could do to speed the transplant process along; it would take as long as it was going to take. That was it. The same goes for grief. I often feel like I am just waiting for my sorrow to lighten up over time. I am waiting, putting in the time. Grief is going to take its time. It will never entirely pass, but I know the day will come (and I have had glimmers of that already) when it won’t be so paralyzing, when it isn’t so impactful and painful, and when I will begin to feel like myself again, or a new self. But until that naturally begins to unfold and reveal itself to me, I am simply waiting. It will happen when it happens.
In his book, Lament for a Son, Nicholas Wolterstorff writes, “I have no explanation. I can do nothing else than endure in the face of this deepest and most painful of mysteries ... My wound is an unanswered question.” I find that word, endure, to be one of the most powerful words I have come across since Kim passed away. ENDURE. There is both a strength and a weakness to it. The “weakness” has to do with an inability to move forward freely. The power to rise is missing. But it is also a word of strength, of standing and looking into the face of the storm, allowing the blows of life to hit and to just try and withstand it. I have this picture in my head of standing still, allowing the sting of the rain and the whipping of the wind to hit me, of not moving forward, but also trying not to allow it to push me back or topple me over; to simply endure.
That, I feel, is what life has become right now. I am in this time of sorrowful waiting, of needing to endure. It is not endurance or perseverance, for me, those words have this idea of running or moving forward––that is not it. Endure––like a rock––to stand and wait against the wind.
My View Today
Getting this final blog post written has been a struggle (I'm not even all that happy with it, I feel it is missing the mark somehow). To use a quote from C.S. Lewis from last week, “all the hells of young grief have opened again.” Over the past week, I have felt a bit of a funk settling in. I’ve been feeling restless. This past tuesday evening, I was lying on the couch watching TV when someone rang my doorbell. I opened the door and recognized one of my neighbours, who also attends the church I’ve started going to since the summer, standing there holding a gift basket. She said that one of the things the church does every Christmas is hand out gift baskets to those in the congregation who have recently gone through a profound loss in their life. Standing at the door, receiving the basket, I felt a lump forming in my throat. As I closed the door and placed the basket on the counter, I lost it. I couldn’t stop crying for about ninety minutes. It was the straw that broke the camel’s back. Currently, the bombers are back. My wooden leg is kicked out from under me. The shine of the last seven weeks has worn off. “All the hells of young grief have returned.”
I am thankful for the positive season I had this fall. It has allowed me to process a lot of my grief and write this series. But it seems as if on cue, with the closing of this series, so are the curtains closing on the light that was shining in. It feels different than October and not as bad. I have learned things I can do to not return to that place, but grief is unpredictable, and at least right now, it’s not easy.
So, there you have it—my journey with grief over the past eight months. I hope to return to this blog series in the spring to update you on how things are going, but for now, I will begin using this blog for other things. I hope to continue to write here and give updates on my book and more on the world of CF and transplantation. I have some ideas rolling around in my head that could be fun, but those will have to wait for the new year.
Thanks for reading and following along thus far.
“What? You wrote a book?!?!?” This is the response I have been hearing lately as I slowly let slip that I have a book coming out this Fall/Winter (release date TBD). It is something I have been working on since March 2020, and it now seems that its publication is imminent!
Big Breath In is a memoir about growing up with Cystic Fibrosis (CF), experiencing respiratory failure, and then waiting for and receiving my double lung transplant. Throughout the book, I reflect on my tendency to minimize the deadly symptoms of CF and the need to accept the new normals that my limited health placed on my life.
So how did this all start? Well, the seeds of this book were planted a long time ago.
Back in 2009, while waiting for my transplant, I was noticing how unique some aspects of my life were. After all, how many people do you know who are breathing with another person’s lungs? Kim and I had to go through such a steep learning curve as we prepared ourselves for transplant, that I figured maybe others would also want to learn about this. But at that time, I really didn’t have the strength or ability to write (I was never into reading or writing; I barely passed English 12). However, during my wait for transplant, I did a lot of journaling. Also, I started a blog to keep family and friends updated on how I was doing (I have included excerpts from that blog in my book).
After my transplant, especially between 2012–2018, I had the opportunity to do many public speaking engagements about CF, organ donation, and the philosophy of person-centered care. After my presentations, I was often approached by people in the audience encouraging to write a book about my health care journey. However, with many other things in life going on, I still didn’t feel the motivation to do so, but I felt that one day I would.
That day finally came in March 2020, as the COVID19 pandemic began taking hold of our world. With not being able to perform some of my duties as a pastor and needing to think of creative ways to keep in touch with my parishioners, I suddenly felt the motivation and creative impetus to begin writing. And so I did.
I set aside two hours every afternoon to write, and all of a sudden, the stories and memories from my childhood and youth began coming back. I took out old day planners from 2008, old journals from 2009, and reread my blog. The memories of those days, being sick in hospital, the lead up to transplant, and just how fragile my life was, all came rushing back.
Each time I would finish a chapter, I asked Kim to read it. Each time she would encourage me to keep writing. After three months of writing, I had a very rough draft of my manuscript. Little did I know, however, that with the manuscript complete, now the real work began.
Over the summer of 2020, I was engaged in editing, editing, and more editing. I hate editing! Kim would reread everything after I had edited it, providing notes and corrections.
In the fall of 2020, Kim and I told our families that I had this manuscript. It was Kim’s sister-in-law, Sonja, who connected me with a local self-publishing company, FriesenPress. After speaking with Sonja’s contact and weighing the pros and cons of going through the traditional stream of publishing vs. self-publishing, I decided to go with FriesenPress and the self-publishing route. This would allow me to maintain control of the project, which was important as this is my own personal story and my family's story.
Going this route has had its ups and downs, especially with the life-altering events of this past year. There have been parts of the publishing journey that were more difficult than I thought they would be, and others that were much easier. But overall, it has been an empowering experience, and it has allowed this publishing dream to actually become a reality!
I have no clue where this project will lead in the future and if it will open unknown doors, but it has been a great ride thus far. I hope that my book can be an inspiration, or at least a companion, to someone on their own journey in life.
I invite you to stay tuned to this blog and my social media feeds for more info on the book's release. In my next blog post, I will detail what I’d like to do with this blog and the kind of content you can hopefully expect to find here going forward.
George Keulen's Blog
Welcome to my blog, where you will find general ponderings about my life: Of living with cystic fibrosis and a double lung transplant, being an advocate for person-centered care, being a widower, and of course, reflections and news about my book, Big Breath In.