Chronic Illness, Chronic Pain, Dying, Health, Life

My Final Journey

At my core I am an activist. I am an advocate. Most everything I’ve done over the course of my adult life has been in service to something larger than myself (whether it centered around sexual assault/domestic violence; issues related to the different nonprofits I worked for; changing perceptions about aging as a woman, or in more recent years chronic illness and chronic pain, and political and social justice). I’ve worked from my little corner of the world to effect positive change. To encourage conversation and consensus. To make things better.

I’ve often used myself in this advocacy work – not out of a sense of ego or need for attention – but because sharing my personal experiences is a way to help tell a story. It is, after all, people’s stories (raw, authentic, vulnerable) that move us to action. That inspires. Encourages dialogue. Educates and breaks down misconceptions and stereotypes. And if we’re fortunate, changes minds and laws. It’s stories that connect us…

As many of you know, I’ve had significant health issues for the past 20 years. Throughout that time I’ve done my best to live as fully as I could within the confines of serious disease. I’ve ‘fought’ the good fight.

In 2011, after years of living with chronic pancreatitis, I had my pancreas, spleen, gallbladder, duodenum, and part of my stomach removed and my GI tract reconstructed. As a result, I have diabetes that is uncontrolled and rely on insulin to live. I have gastroparesis, GERD, daily nausea and vomiting, malabsorption and malnutrition, intractable and under-treated pain, and am experiencing the beginnings of diabetic neuropathy. I’ve lost most of my hair, my teeth are decaying and falling out, my bones are getting more brittle – more subject to fracture. There isn’t a single minute of a single day when I’m not in pain. It is relentless. It has no compassion.

There is no ‘cure.’ There is no ‘recovery’. I’ve had 10+ abdominal surgeries since 2006, three of which were to repair previous procedures. I’ve had a gastric stimulator implanted for my paralyzed stomach muscles along with a spinal cord stimulator for pain. Both have only been mildly effective. Both require future additional surgeries to keep them functioning. Additional interventions such as a feeding tube add more layers of intrusion that are in-and-of themselves life-changing, aren’t financially sustainable and don’t ‘fix’ the underlying issues.

Over the past 2 years, things have gotten steadily worse, and based on conversations with my doctors that will continue. My body is failing to thrive and everything at this point is meant to ‘manage’ what cannot be cured or undone. The list of things to ‘manage’ has grown too long. I am suffering.

I don’t want to go where my health is taking me, but if I have to, I am determined to meet the moment with courage. After talking with my doctors, I applied for and was approved for medical aid-in-dying which will happen in early November (exactly 6 months from today). This isn’t a sudden decision, although some might think it is. I’ve been weighing this, assessing this every year since I became ill – pushing forward with hope for a better future, but also looking into the tank to see how much emotional and physical juice I had left to move forward. Knowing there’d come a time when I looked and found the tank empty. That time is now.

We have a death-denying culture. Our views on dying (and the right to decide the when and how) haven’t kept up with medical and technological advances. 100 years ago the average life span was 25 years less than it is today. Living longer isn’t inherently good or bad, and given the option, most of us would choose to live a prolonged life if our overall quality of life remains healthy and fulfilling. What constitutes fulfilling (and necessary) is unique to each person.

What’s necessary for my being fulfilled?: Strong relationship with family, close friends, loving relationships, physical touch, my ability to work and contribute, traveling (yes! to the Camino Trail, to exploring the canyons of the Southwest, the mountains, the beach and so much more), spending time in nature hiking (the physical-ness of it), good health, laughter, learning, tending to my garden, being able to drive myself places, mobility, self-determination, financial security, the sharing of food, the ability to eat, playing with my grandkids, being a good citizen, spiritual grounding, living in alignment with my values (even – and especially – when they’re put to the test). How many of these things, these abilities, these intrinsic needs, do I have to lose before it’s no longer fulfilling? Before it’s ‘acceptable’ for me to say no more?

An assisted death is not the path of least resistance. For many, it is the path of most resistance. Those of us who pursue it face a range of barriers and judgments, at a time when our health is rapidly declining. We are faced with the realization that our decision to die is causing those we love pain. Some of us navigate these waters successfully (and hopefully with some self-compassion and support) and manage to secure life-ending medication and a dignified death. Others give in to the opposition or simply run out of time. I choose to decide before I run out of time, because a week too early is better than a day too late when it comes to having choice.

I want to spend these final months with family and friends, getting to know more about the wonder that is each of my grandchildren, and making sure they know how much I love them (and always will – no need to be in a ‘body’ for that love to surround them). I want them to know how unique and amazing they each are; how much I learn from them; that I will always, always be their champion. There is immense sadness that I will not be there as they’re growing up. Never having had grandparents who were alive and in my life as a child, I understand the value they can add. Yet I also know that how they remember me has less to do with the length of time I was physically with them and more to do with how I made them feel when I was with them. Hopefully they will have good memories to carry with them through their lives.

I want my daughter and son to know their mom lived true to her core values; that she tried her best; that she was willing to explore end of life options and speak out about the importance of facing death head on despite being in totally uncharted territory, despite not having a clear roadmap. I want them to know she held on to hope, even with her last breath (that she was never hope-less, she did not ‘give up.’). I want my grandchildren to have more choices about their own lives when they’re adults. I hope they are able to see me through eyes of compassion and void of judgment. I hope my decisions inform them positively as they make choices about their own lives in the future. I hope they forgive me.

This isn’t about depression. Despite my health issues, I’ve had a wonderful life. Truly. But the things that matter most to me: autonomy and agency, are getting lost in the frantic push to simply keep me alive regardless of what that day-to-day quality of life looks like. The only other thing that matters to me beyond these two key tenets is love (my kids, my grandkids, my family and friends) and it’s the only reason I feel sadness at all around my decision. I ache knowing my decision will cause them pain.

Note to self: Everyone dies. EVERY ONE. No one escapes this fate. My decision to end my life is not a moral failing. It is not a character flaw. It is not weakness. It is not a mental health issue. It isn’t giving up. I’m not a coward for making this very personal, very considered decision. There is courage to be found in knowing when you’ve endured enough. I don’t love my kids, grandkids, family and friends less because I’ve made this decision. The quantity of my life must be balanced by the quality of it.

There are some things we cannot change. Death is one of them. But we can change how we die. We can die with dignity. Without suffering. ❤️

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s