Living, Grieving, and Leaving a Legacy

Living Grief

Like many of you, I was raised in a culture where death was darkness, morose and devastating.  When we wore black and spoke in hushed tones around the topic, bit never directly about it. IT... the word was taboo. Analogies of "going to sleep forever" and "crossing over to a better place" made the subject unattainable.  My arm’s length relationship with death shrouded its mystery in a dark cloak.

And then, at 37 years young, I learned that PAH was taking over. I hit pause on life and looked in the mirror. What looked back? Here lies the fork in the road: living or dying...but wait, why OR? Can there not be a third option: living AND dying? I sat with this fundamental question for months.  During that time, those around me learned about pulmonary hypertension (PH) and PAH. And I realized that we were all in mourning.  That the same hushed tones and awkward handshakes that usually accompanied a visit to the funeral home were being shared openly with me - the one living and dying.

This was the revelation: if we mourn a life, the process of feeling and learning how to proceed is called grief. Grief shows up daily in new and unexpected ways, and it is a living and evolving beast... like me and like PH. 

Therefore, is it not logical that grief be part of life, and that we be able to grieve together now, not solely after all is done and I am gone? For almost 5 years, I live and I grieve and I die and I grieve. This is not a linear process. It's not a neat little bundle; it's a messy tornado. Every day I remember what was, I celebrate what is, and I acknowledge that an end will come.

Help

I have been extremely fortunate amidst this unfortunate life situation.  I have been blessed with a sharp mind and a stubbornness to fight and find solutions.  Those around me say that it inspires them to do the same. This is my legacy.

Through a family member, I have partnered with an extraordinary life guide - a social worker who strives to accompany patients and their families through the challenges of chronic illness.

During our first visits, she explained the difference between palliative and terminal care. That there was a distinct system in place to ensure comfort and support during life. That i did not have to go at this alone and that help was available in many different ways. 

She also explained that one of her goals was to accompany us through living grief - that we did not need to wait until a death to process the multitude of feelings that accompanied this moment.

Fast forward 5 years.  I have ongoing therapy, as does every member of my family. We also benefit from home help services with a professional support worker.  The goal is for me to save every ounce of energy for the most important things: myself, my healing, and my family.  It does not matter who washes the dishes or peels the carrots - but if I spend my energy on these tasks, I then require extra rest during game night or dinnertime.

Asking for help was a huge hurdle - and accepting it was another distinct challenge.  Before PH, I "got it all done", and my independence was my superpower.  Suddenly not only was I unable to accomplish simple tasks without being breathless but I also needed to rest and recover from these small things. Preparing a meal took all day, then I was too exhausted to eat. I couldn't finish making the bed before I needed to crawl back under the blanket. 

So the solution became two-fold: ask for AND accept help from others. I learned to sit with a cup of tea while someone else emptied the dishwasher.  I understood the importance of an afternoon nap while someone else vacuumed the floor.  My energy became my currency; there are days when I am richer that others, but I now spend and save wisely on the important things. 

Legacy

My spouse and I often talk about the hard things. Our mutual grieving has helped us to communicate with each other throughout challenges.  A recurring theme is death - the logistics, the feelings, the after. These chats always come back to the same question, the ultimate question: "what do I want?"

There is an incredible sense of empowerment that comes with choice. It is an ability to reclaim your independence and choose yourself. In the last moments of my life, I want to honor all the preceding times when I showed up for myself. I want to celebrate every challenge that I overcame with dignity, every ounce of energy that I prioritized to get this far. Throughout this chapter of my life, a series of life choices will ultimately culminate in a conclusion,  and I have an opportunity to write these last lines before ending the book.

As I have been a guiding force for those around me in life, I wish to continue to do so in my final moments.  I imagine them opening a folder and following instructions, like so many of the to-do lists that came before. No guess work, no suppositions.  Just a series of clear, concise, step-by-step instructions.  A gentle, guiding hand through the last steps.

I have come to realize that my choices are my legacy.  MAID will be my final gift to those whom I have guided and shared by life with. My words. My handwriting. My voice.

My hope is that this final set of instructions will both remove the burden of decision making and give space for grieving and remembrance. Rather than questioning the how and the what, I hope they can remember the when and the why.

The MAID process has also given me an opportunity to speak with each of my family members now, hopefully with many, many days ahead of us. The sense of urgency and related emotions of pressing decisions are absent. And yes, there is still sadness and grief - it still stings! But we get to do this together. 

View the recording of our recent MAID webinar on our YouTube channel