Note: This chapter is a bit long and a bit rambly. Sorry.
Sorrow, depression, grief––these are all disorientating experiences that often leave one feeling like they are swimming in a swamp of their own emotions and experiences. It has been difficult to force myself to sit down and write this chapter of my journey with grief because it has been challenging to try and process and organize these more recent emotions and experiences into something that a reader might understand. It is like trying to reconstruct a meal after you have just vomited it into the toilet. But here we go...
To try and make sense of the six weeks following Kim’s memorial, specifically the month of October, I will try and compartmentalize this time into three topics or categories. What I am writing about here are emotions and experiences I've had since Kim passed, but I am placing them within the chronological time frame of October as they were all triggered and intensified within one week in early October.
On Oct. 8, the Friday before the Thanksgiving long weekend, I had a meeting with my publishing specialist. Among the things we discussed about my book, we decided to push the release date up to early November. There were a couple of reasons for this, one of them having to do with supply chain issues and making sure the book would come out and be available for shipping before Christmas. But it was quite a startling moment to realize that this journey of publishing my book would end within a month. And with that, as soon as I hung up the phone, a wave of sadness washed over me.
Part of the letdown that I experienced is, I think, the same as what many people have after a big project is completed. You are pushing and pushing, focused on this one big thing, and then there is an emotional letdown once finished. It is as if our emotions have nowhere to focus anymore, and we begin to slip into this sad or dark place. But more than this for me, what especially tripped me up and sent me down this slope of depression, was the meaninglessness of the accomplishment that I felt. Without Kim to see and experience this with me, it felt empty.
Now don’t get me wrong. I have been humbled and so incredibly appreciative of all the positive feedback for my book. It is the only thing that is now keeping me excited and proud of this project. But the joy, the excitement, the sense of accomplishment I expected to feel, was absent.
What kept me focused during the difficult early days of writing was Kim’s excitement and positive feedback to my early drafts. If you have read my book and read the very last page, you will know that when Kim was diagnosed for the final time, in August 2020, she made me promise to finish the book and to get it published. At that time, we had hoped we would have been able to do this together, but of course, that didn’t happen. Kim had a hand in editing my manuscript and giving her thoughts on the physical shape and design of the book, but she didn’t get to see any of the proofs.
This sense of the emptiness of accomplishment was not new to me in October. Already in the summer, I shared with some people how it felt like nothing was worth doing if I couldn’t share it with Kim. Not until Kim was gone did I realize how much I enjoyed the things I did because I could share them and talk about them with Kim. Last week I met with my spiritual director and shared with him that I am not yet at the point where I can enjoy something just for the sake and dignity of it. I trust and hope I will one day get there, but still, now, my sense of accomplishment in life is attached to being able to share it with Kim. With her gone, my accomplishments don’t mean all that much. They are just a way to pass the time.
I feel guilty for feeling this way, especially as it relates to my book. You, as my readers, have been purchasing my book and spending your money on it. Many of you are taking hours out of your life to read it, and I appreciate that so much! I don’t want to disrespect that. But when life changes so radically in the middle of an emotionally charged project, it’s hard to maintain the original spirit of accomplishment; it becomes tarnished. When I began writing, the dream I had was to do this with Kim. That dream is unfulfilled.
Over the Thanksgiving weekend, a couple of people texted me, communicating their support and sorrow that a weekend so focused on the theme of gratitude must be difficult for me. That idea never actually really occurred to me until I got those texts. I’m not one for major holidays. I value the meaning behind them, but I'd rather focus on cultivating a spirit of thanksgiving throughout the year rather than artificially manufacturing it on one weekend. The same goes for Christmas. I like getting together with family, and that it feels special, but overall, whatever, I’m a bit of a scrooge.
Therefore, I floated through the weekend without much thought to the contradiction of my grief and the weekend's theme of gratitude. All of this, however, left me unprepared for what did happen. My family got together the Sunday evening. We had a nice dinner, and we all had a good time. We finished up dessert, coffee, and drinks and were cleaning up. I then decided to make my exit. However, it was then that something I had done so many times before without too much thought or emotion hit me: I was going home alone.
Now, of course, this was not the first time we had got together as a family since Kim died. And it had nothing to do with Thanksgiving. But that five-minute drive home served as a reminder and manifestation of just how lonely and empty my life, my future, felt. No matter where I went––family dinners, social outings, drinks with friends, work, or church––I was always coming home alone and walking into an empty house.
It is as if the joy and laughs experienced during times of community, with family or friends, disappear into a vapour as soon as I get in my truck and the passenger door remains closed. When I leave the house for the evening, I always turn a light on so that at least there is some sense of warmth, of life, when I come home. But no matter how many lights I leave on or how good of a time I have when I am out, it can’t compete with the empty, silent house that awaits me.
Often, which is a common thing for widowed people, when I come home from work, I will turn on Netflix or some music right away, and then I will go shower. I do this so that there is at least some noise in the house when I come back downstairs.
Again, this wasn’t something new in October, and it is not always a painful experience to step into the house. Still, the grief about this reality was so much more profound, so much more depressing throughout October, especially on that Thanksgiving Sunday. And this leads me to my third categorization of the ever-deepening grief of that month.
On Experience & Time
Before these two experiences happened, another one actually set up the slide into the depression that I felt I was falling into for most of October.
Since my transplant, I have been involved in advocacy work for Cystic Fibosis Canada, and for our local clinic here in Vancouver. During the summer, I decided to plug myself back into that advocacy work. Over the past couple of years, the big push in the CF world has been getting access to new medications coming online that are a real game-changer for people with CF, especially the latest one, Trikafta, a miracle drug for many people.
The downside of these drugs is they are costly, therefore it takes a while for publicly funded healthcare systems to get on board with funding them. When I re-entered the world of advocacy this past summer, I joined in on the final push to get Canada and the province of BC to approve Trikafta and make it available for CF patients. To say that Oct. 5 was a milestone in CF care here in BC is an understatement, as this was the day that our provincial government approved Trikafta, thus changing the lives of hundreds of people here in BC.
For me, however, this day came with mixed emotions. I was thrilled to be part of this final push to get this drug approved; I was happy for my CF peers, who can now have access to this drug, but for me, it comes too late, as being post-transplant, I do not qualify to be on it.
On Oct. 6, there was a Facebook Live event to celebrate this momentous day, but I felt myself slipping into a pit as the meeting wound day. It was as if the bittersweet emotions of the day cracked open a dark door that was then quickly flung wide open by the realization that Kim would never know that this day in CF history happened.
This idea and sorrow over Kim not knowing something was not new on that day. Already back in the spring, I came to the painful realization that everything that happens in life from here on out, Kim will not know about. Kim’s knowledge base, her experiences stopped on the day she died. I find it very painful that Kim doesn’t know what's happening in the world or in the life of those she loved. Kim doesn’t know about the heat dome or the wildfires of this past summer. She doesn’t know about the flooding and how it is affecting our family in Abbotsford. She doesn't know about the mundain ordinary things in life. She doesn’t know how my book is being received. And she doesn’t know what is going in the CF or transplant world, or even about my own health (which is fine).
This idea is almost the most heartbreaking part of my grief, other than her not being here. Kim loved knowledge, and she loved to know what was going on with people, and she loved real-life stories. Learning and experiencing things she hasn't known or experienced is where I feel such a significant separation from her now.
I continue to change, but she stays the same. The world keeps going; life goes on, but Kim stopped. I want to stop. I want to hold time back, tell others to stop, hold on, and not go any further without her, but that is impossible. Time can’t be stopped; whatever is coming will come, and whatever is past will continue to grow further and further into the past.
These three events: the upcoming release of my book, leaving Thanksgiving dinner, and the approval of Trikafta, all happening in one week of each other, sent me into one of the darkest and most inconsolable times I've experienced over the past eight months. It was a time where I began to experience and understand things about depression that I never had before. I think I looked fine on the outside, and those closest to me might likely be surprised to read all this. But it was a time when I began to get scared that this darkness was what life was now going to hold for me. Hope had been shut out.
However, as unpredictable and quick as these moments of disorientation hit me in early October, so too was the unpredictability in which a ray of light began to scatter some of that darkness away. What brought on this next chapter of my journey with grief, you ask? Well, it might take a certain kind of person to understand it, but it was simply 148,500 gallons of shit (literally).
“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.