The unexpected: challenges & gifts

Today I find myself with a lot to process. There are many things that catch us off guard in life, and this journey is no exception. Some of those things are very hard and demand to be weathered. Some are unknown riches that we stumble upon.

This morning something hit me hard and I found myself struggling with MUCH to process out of nowhere: I found out that an acquaintance with CF who I've known since high school and who received a lung transplant 10 years ago passed away last week. I knew that her health had been declining and that the post-transplant life had presented some major challenges. She remained a kind, strong, full-hearted, courageous woman who advocated faithfully for transplant, CF research, and awareness. Her journey had a profound impact on my own over the years as we were close in age, but she was facing challenges much earlier than I, and her journey offered some hope and wisdom. It is strange to feel so connected to someone with whom I had so little contact, especially recently. However, her life left a significant impression on me. 

When I read the news, I honestly felt overwhelmed, lost, numb. It felt a little like losing hope or purpose, even if only for a short moment... Starting this journey, I definitely felt inspired by her walk. And now... what? What was it all for? I had to let myself feel this, feel the Ecclesiastes lament, "Everything is meaningless...completely meaningless! What do people get for all their hard work under the sun? Generations come and generations go, but the earth never changes....We don’t remember what happened in the past, and in future generations, no one will remember what we are doing now." (chapter 1, verses 2-4, 11; New Living Translation)

Extreme reaction? I do not think so -- grief is real and loss needs to be processed. Did I camp out here? Thankfully no, I was able to find momentum (more on that below). However, I will not use that as an excuse to breeze past such uncomfortable questions and feelings. They linger... It is hard to wonder what will be the impact, the legacy of all this work, the pain, the recovery...

Thankfully I do believe that there is more to all this: my friend's life and death are not in vain -- she impacted MANY people and made a difference in this world. And even if future generations never know her name, I believe there is still a lasting purpose to her life, and mine, beyond this world. But that is a truth I had to REACH for this morning. 

By God's grace in timing, I was part of an online CF mini-conference last night focusing on transplant. How inspiring and incredible to hear from so many more people who are facing or have faced similar paths as I am now! Their stories, their honesty not only buoyed me up and made me genuinely proud to be part of this incredible community around the world, but also gave me some important insight and "homework" to consider as we prepare. It was a genuinely strengthening and equipping evening. All that on top of the huge gift it is just to connect with other's living with CF (and their support people) -- it's an isolating disease because of some medical factors, so online interaction is a major unifying tool for us!

This is not what I was expecting when I embarked on this journey. I was not prepared to have the journey, the wins and losses of others become such a part of my own. Sure, to an extent, I likely thought about this (I love the power and importance of "story"). But these back-to-back experiences juxtaposed like this, it was a roller-coaster and sucker-punch. More importantly, it was like the wardrobe door being opened to another realm, to realize the depth of my personal experiences are both deepened further and paralleled by countless others around the world now, by those who have come before, by those who will follow... all connected. 

- Anna

Green light...

We recently got the word we had been waiting for: I am into the lung transplant program! We have an appointment next week with one of the surgeons where we will complete some paperwork and the final details required before listing... and then active waiting begins! 

What will this look like?

I will begin regular physiotherapy appointments (3/week) to condition my body for the transplant and monitor my overall health. For the first month (12 sessions) I will be heading into Toronto for all of these appointments. After those 12 sessions I will be able to complete 2 of the 3 appointments per week in a nearby clinic (Guelph or Kitchener). This physio will continue until transplant and then begin again after discharge from the hospital. I will also have regular appointments with other members of the transplant team which they will try to coordinate on my physio days. These appointments have the similar purpose of monitoring all aspects of my health and well-being as we wait.

Timeline

There is no way to say for certain. The "average" is from 6-12 months of waiting. However, this is a very "loose" estimate given that so many variables are at play. Some people receive a call much sooner than 6 months, others can wait much longer than 12 months. So, it's a complex wait, needing to be ready at any moment, and yet treating it as a marathon, preparing for false starts and long hauls of waiting and attending my appointments.

How can you help?

I'm glad you asked! ;) We need support in many ways, from drivers to pray-ers and everything in between! You can see a starter list of roles here (and sign-up).

How am I doing with this?

As you can imagine, there's a complex mix of emotions. Upon receiving the call I felt relief and joy wash over me. Prayers had been answered! Gratitude! We live in an incredible country where this is possible and Toronto's program is one of the best in the world, top in North America! And so soon! The process of listing really is moving right along without any delays. I feel God's hand of provision and it is beautiful and overwhelming. I am excited to think about having fuller lung function, better quality of life, to be able to run and swim and play with my dog without becoming winded almost immediately. Even being able to do basic chores (change the sheets, vacuum) without lugging oxygen around and resting every minute or so will be such a delight (oh yeah... for those of you who didn't know, I really do like cleaning). Thank you God! I started crying tears of joy...

... then the second wave of emotion hit with fear, grief, resistance. I started weeping. I had a renewed realization that transplant will be a death in a way, leaving old lungs behind, and an old way of life with them. Yes, these lungs are tired and pretty used up, but they've enabled me to get this far. They are fighters, and I know them inside out. CF has taught me a physical awareness that I value deeply and it is scary to think of having to "learn" new lungs (not to mention recovery from such a major surgery). In addition, my medical routines will change. There are many current treatments that I will (hopefully) no longer need. But there are other things I will need to adopt and adjust to as I live post-transplant. And there are no guarantees that all will go smoothly (in fact it is likely there will be a rough patch of adjustment as the correct balance of meds is determined through trial and error). 

So those are the two sides of the coin... and I find myself trying to balance them, embracing this opportunity as the best way forward, and still preparing for the difficulty ahead. I hope that by preparing now, we (my support team and I) can build up some resources to get us through the desert of drawn out waiting, pain, healing, and adjustment. 

Prayer

Please pray for continued strength and health as I keep up with work, fight for health, and seek the fullest life day to day. Pray for Drew and my Mom especially, as they support me in this and bear much of the burden. Prayers of PRAISE for our incredible community of family and friends who have already been carrying us in this season with their caring meals, offers to help clean our house, conversations of encouragement, and so many prayers offered up. 

Finally, I am praying for God's healing, and I invite you to pray this with me. I am praying that God will prepare me to receive His healing, in His way and in His time. I pray that my healing would be all about His glory, that through this process (whatever lies ahead), He would be made visible and would receive all the praise. I pray for those who are part of the healing or witnesses to it, that they would see Him and come to know Him more. I pray that this challenge would build in us even more of the character of Jesus.

I recognize that His healing can come in many ways: the routines of physio while we wait could in fact elevate my health to a point where I no longer need a transplant (and for that level of health to remain); a well-timed and "perfect fit" transplant (how incredible is it that we can recycle and reuse organs?!); miraculous and medically inexplicable restoration of my lungs (this is what I keep coming back to, knowing that our God is Creator, Healer, Restorer); and perhaps most difficult to receive, healing through death, shedding this life for eternal life. That's going to sound weird to some of you. It is weird in a world where we are so focused on what is directly in front of us or on the surface and don't consider if it might be for a bigger purpose or part of a bigger reality. I would LOVE to talk to you about this, especially if you have questions, comments, tears...

Thanks for making it to the end of this post! I am so grateful for your care and support!

- Anna

CBC's The Current: a glimpse into life with Cystic Fibrosis

Today I heard this incredible interview on CBC's The Current. It was like hearing much of my own story being told across our nation! As I learn to tell my own story, this was such a huge encouragement to me and captures a lot of my own experience and perspective.So I wanted to share it with you all, for your education and amusement.  

Disclaimer: Bear with the opening story, it's totally worth it!! (Also, it's a glimpse into some of the not-so-glamourous realities of CF and illness in general).

"Every person, every one in the entire world in some way is affected by illness, or affected by death, or affected by just hard circumstances.... We all deal with those things in our own way." 

Sickboy podcast tackles chronic illness with laughter

(click the listen icon)

"We're trying to bridge the gap between people who are sick and people who are not."

Waiting on the road

Since my last post I have truly set out on the road toward lung transplant. I had my assessment week in Toronto during May. It went quite well from our perspective: we met a lot of the team, and some other possible candidates; we got to know more of the hospital and recieved many friendly offers to help us navigate when lost; I had enough energy to enjoy some downtime exploring areas of downtown that I hadn't been to before; and in general my mom and I loved having extended time to connect. The week was steeped in peace. 

Over the last 6 weeks I have been waiting to hear about a decision, whether I'll be admitted into the transplant program or not, and then whether I'm ready to be listed yet. It is weird to wait for such life-altering news. So much hinges on that outcome. It has felt like we can't make many plans because almost everything is up in the air. In some ways this is tough, especially for a planner like me who loves to always be moving forward.

Unexpectedly this time of limbo has been rich. My health is holding steady and I'm finding rhythms of work and connection with my community that are life-giving in a simpler and deeper way. My capacity is expanding rather than shrinking from anxiety of the unknown. The waiting seems to be focusing my attention on what I can do and investing where I am instead of looking ahead. Slowing down is showing me to value opportunities, moments, tasks for themselves, not always needing to precisely place things in a bigger, busy picture. 

 Today we are road-tripping and hit some slow traffic. It gave me time to reflect on this journey and the joy I'm finding in the waiting, doing what I can while I have this focused lens. I'm enjoying each breath, talking with my hubby, thinking, and reveling in beautiful summer days. 

Story

It is an early April morning following a wintery attack on Southwestern Ontario, and on a personal level, a similarly tenacious cold/flu bug. Fuelled by midnight pizza and a restless mind, I find myself returning to this blog after a year, where two streams of thought are converging:

1) I love writing but never seem to carve out the time for it as a regular practice. It is my favourite mode of communication and I want to develop it, to bless others with it, and in my bolder moments, to really let my voice out into the world to speak truth and challenge injustice. I am simultaneously terrified every time because of the vulnerability of such a large platform. An email or letter between friends, posting on Facebook and Instagram only what I know will be "social media friendly" (i.e. not make anyone uncomfortable), these are less risky and have big rewards! Yet I'm feeling challenged to risk a little more lately with my writing. 

2) I have an innate desire to help others realize their narrative. I experience deep meaning and honour in being invited to witness another's story and I am equally honoured to get to share my story with others. As a result I have journeyed with many incredible people over the years. More and more I realize that we all need this! There is power in story-telling, in sharing our experiences as a community. It brings things into the light and lets us heal. We find a place to be safe and where we are no longer "the only one". Let me be clear: I am well aware that the internet is not a safe emotional place and if you don't have strong in-person (real-life, not virtual) relationships, trying to get this need filled online is going to end badly. However, like any tool, it can be used for great things and my desire is to practice putting more of my journey out here, partly to keep many friends and family updated, and partly to invite others into the conversation, the journey, so they feel less alone. I have been enjoying the platform of Instagram especially for this, as I find it is full of more positivity and encouragement, especially when it comes to supporting others through struggles like health challenges.

These two streams are converging on this blog. Here I will attempt to process and chronicle my journey for the foreseeable future. I would be honoured by your care in journeying with me. 

Since my last post, it's been a harder year than I anticipated health-wise. Much harder. I have shared some of this through Facebook and Instagram, that after 33 years of relatively healthy life with Cystic Fibrosis, I am in the process of moving toward a lung transplant. It has been a roller-coaster. Yet, it has also been one of the most stabilizing seasons I have experienced. This is thanks to God's grace and provision in surrounding me with the family, friends, coworkers, healthcare, and church community that I have.

Still, it is becoming more and more of a reality and the impacts of that are deep. I am recovering from a nasty wallop of a flu and realizing these things take much more of a toll than they used to. Every time I fight desperately to keep it under control, to not need IV meds because the more often I'm on them, the more we have to vary them so I don't develop a tolerance. Paradoxically, I know that being at this point means they're likely my best bet. Decision-making is challenging (thank goodness for an incredible health team!). It is also taking a massive toll emotionally. It's easy to forget how a lack of sleep and ongoing pain, discomfort, or shortness of breath can turn me into a different person, someone I don't recognize or like very much. Externally there doesn't appear to be much change (I'm an Internalizer), but it gets pretty bleak inside. It's good for me to share this here. It's also good for me to remember that I have shared this here, because I get wrapped up in thinking that no one can know I feel this way... well, that cat is out of the bag.

When health starts to come back, everything gets brighter, the seas calm and I can think clearly. I hope I continue to feel better over these next few days (so I don't have to go on IV antibiotics, please only Cipro!). Already the difference a day makes is extraordinary. It is good to write out these cycles so I can remember there is a season and a time for everything. Sometimes the dark doesn't need to be explained are escaped, it needs to be endured. 

And if you are still reading this, thank you!! I hope you will find comfort in knowing that there is a time and season for everything, even if the time is SPRING and the season is... winter.

Onward and Upward...

After a challenging Lenten season, and a big creative push to participate in an artistic interpretation of the Stations of the Cross (Lakeside Downtown's Art of the Cross), I am celebrating Jesus' resurrection, His promise of new life, and feeling the glow of that promise while creativity flows once again. He faithfully got me to this place and it feels like a real triumph to now be launching this redesigned site on the heels of Easter! Spring fills me with hope and new energy as I walk out the seasons both physically in nature and spiritually in the Church. All these weeks (and months and years, really) have brought me to a place where I feel a new season of putting myself and my work out into the world. 

There may be much to refine and develop (I hope to add an area for my writing this summer), still this is a big accomplishment for moving forward. So I am celebrating (and now wish I had my paints with me for this work-week in Montreal...). 

Thank you to everyone who has been encouraging me in this and who will journey forward as I develop these creative sides. Deep breath. No turning back now. 

- K. Anna

Under Construction, but Coming Soon

These past two years have been full of change and growth, in beautiful ways. However, it has meant that I have kept pushing back my deadline on this (if you've noticed). Now, after a much longer hiatus than expected, I am gearing up for the "official" launch of this new art site to improve my web-presence. After almost 18 months, I think I am finally reaching a point where I will be pursuing my art practice more intentionally, and am hoping to launch by Easter 2017. 

Thank you for bearing with me! Please continue to stop by, as your support and feedback are hugely welcome!