Something happened on Monday. It pierced my heart, opened my eyes, and gave me one more of those perspective adjustments. One of those moments when you realize you’re looking through one lens, and that you need to flip it around and look through the other end. Or maybe change lenses. And this something made me weep through a flood of conflicting emotions.

My heart catheter ablation isn’t scheduled until February, and while I continue to hope for an opening on the cancellation list so I can get in sooner, I’m forced to find ways to try to keep living and functioning in spite of a greatly reduced supply of oxygenated blood flowing from my heart to my body. If you’ve been following this journey, you know that I am very short of breath always, and sometimes it’s so bad that I feel like my chest is being crushed and I’m being suffocated. I’m so weak that, at times, I have to have help even walking to the bathroom, and walking any distance at all has become pretty much impossible.

I can’t keep borrowing my kids’ wheelchairs because they need them. So we decided it was time to rent one (fighting with insurance and hoping they will cover future months, but we paid for this first month while we pursue that battle). But first, I had an appointment with a doctor I see several times a year. I’ve known the receptionist there for years, and we regularly swap stories about our kids and grandkids. She is quite a bit younger than I am and only has two little grandbabies. I hadn’t seen her in awhile, but I didn’t really know why.

When I arrived for my appointment, I was struggling to walk and to breathe. Scott had to help me onto and off of the examination table. I was feeling a little sad and frustrated about all of it. This receptionist, concerned by this drastic change in my health, asked for more details. During that short conversation, I learned that her husband, who was only in his fifties, died suddenly just a few months ago from similar heart issues. Died. Gone. That’s why I hadn’t seen her recently.

Unlike me, he got no warning signs. No months of trying to breathe. No drastic loss of strength. No hours scheduling appointments with specialists and fighting for more testing to find the problem. No struggling to find new ways to keep functioning. No moments sitting with his children and grandchildren when he’d rather have been up playing with them. No talking and crying with his beloved about how hard the waiting can be. No more holding any of them in his arms.

I can’t even really describe the power behind the force that hit my body, mind, and soul as I heard and tried to process to this news. I was speechless and filled so deeply with so much grief and sadness. I hugged her and then Scott helped me to the van where I let the tears fall. I couldn’t stop crying. I was feeling so many things.

First and foremost was tremendous heartbreak for their family, followed quickly by gratitude for the crippling symptoms I’ve been living with all these months. This wasn’t the first time I’ve realized that I’m one of the “lucky” ones to have had symptoms to warn me, but I was able to see in a new and stark way what a blessing all of these symptoms are as they keep driving us to search for answers and treatment. They felt like a beautiful gift that’s been placed in my hands with so much love.

But even while I was feeling that gratitude, I was also asking, “Why!?”

Not why am I having to struggle, though. All I could think of was, “Why did I get this chance to keep looking for answers and living when he didn’t?” It seemed so unfair. It still seems so unfair. None of us deserves this chance more than others.

Life here in this world is so messed up and broken and has been since sin entered it and flipped everything upside down and inside out. This world is not our home. This is not all there is. Someday all the bad, all the sad will come undone, and beauty and joy will shine, shine, shine! No more tears. I long for that day.

But until then, this is where we live. I pray I learn more and more not to waste this time. That I learn to keep caring about other people, loving them better, trusting an all-loving and all-knowing Father with the parts I can’t figure out, and seeing beauty every minute. Right now. In the midst of the brokenness.

We left there and went to get my wheelchair, and then we went to choose this year’s pumpkin for designing and carving our Jack ‘o Lantern with the kids for Halloween — a family tradition for over forty years. I was still feeling so many emotions, but I wanted to focus on the gratitude at that moment. I was choosing a pumpkin for my kids. Holding it, smelling it’s kind of stinky smell, and I was out with my husband on a chilly, beautiful, fall day — in spite of a little rainy drizzle.

That evening, as we snuggled in our family room and read to our kids, I looked at the younger ones all bunched together in their pajamas, squished against each other and our dogs, focusing on the story. My heart was so full of joy at that moment. And Scott snapped a picture for me as I tried to read even while having to pause frequently to catch my breath, and whispered in my heart, “Thank you, God, that I’m still breathing, struggling, fighting, living, looking into my children’s faces.”

The next morning, a dear friend, knowing nothing about what was going on in my heart at the moment, sent me a message, reminding me of her love and prayers and sharing something she had read that morning. One portion really stood out to me:

“I love fall. Leaves transition from green, revealing all their brilliance — vibrant yellows, oranges, and reds. Their beauty is most apparent right before their death. Winter soon arrives, and they drift down to the ground. This year, they feel like a startling representation of my heart. I’m looking back on a year full of devastating sickness, loss, and grief — a year of desperate prayers, seemingly left unanswered. But somehow, God reveals his beauty in it all — in the falling leaves and in the unanswered prayers.

I could so relate to this. “Even in the unanswered prayers.”

He is holding us. He is writing our story. He is close beside me always. And he sends me reminders minute by minute so I don’t forget when it’s not so obvious.

Enjoy a couple of these reminders from this week. Kathryn and her service dog Mozley love to head out into the neighborhood daily with her special trike and collect fall leaves for me. This is the highlight of sweet Kathryn’s day. When she gets home, her sisters help her sprinkle them on the wheelchair ramp in front of our house. Just for me. Just because she loves me and knows I love fall.

“Embarrassment is the feeling of discomfort experienced when some aspect of ourselves is, or threatens to be, witnessed by or otherwise revealed to others, and we think that this revelation is likely to undermine the image of ourselves that we seek to project to those others.”
~Psychology Today

“. . . The image of ourselves that we seek to project to those others.” This sounds to me like embarrassment rooted in pride. Not the good kind.

It’s so easy for me to spot hints of this in my children as I try to guide them through living a life of joy as a person with disabilities in a world where they are in a minority. It’s much harder to admit it when I see it in myself.

Yesterday was Friday. Date day for Scott and me. And it was such a gorgeous fall day. I wanted so much to return to our favorite paved trail that winds through the woods along the Little Miami River. We haven’t been there in months. Ellie loves it, and it’s always covered with crunchy leaves starting about now. But I can’t walk well enough to do that anymore.

So I spent the morning having an uncomfortable and straightforward conversation with myself. About pride. About embarrassment. About not being honest with my kids or myself. I could visit this trail if I borrowed one of the kids’ wheelchairs and Scott pushed me (which I knew he would be honored and happy to do). But what was holding me back?

Embarrassment. Pride. I felt being pushed in a wheelchair would make me look weak and pathetic. Old and fragile.

What kind of hypocritical message was I sending to my kids?! I never, ever saw them as weak or pathetic or fragile when they “walked” this same trail. In wheelchairs. They are courageous, brave, strong. My heroes.

I was ashamed of myself. So I talked to myself the same way I would talk to them.

I am weak right now. So, so weak. And I’m getting gradually weaker. So what? That’s not who I am. It’s what I am. I can’t control that.

Pathetic? I can control that. I’m only pathetic if I’m wallowing in self-pity, hiding away in my house on a perfect fall day, whimpering about not being able to walk a trail that I love so much. Trying to act like something or someone that I’m not — projecting an image.

Every week, before one of my virtual appointments with a Cleveland cardiac team member, I have to fill out the same annoying pre-registration form. One of the questions on that form — a question I have to ponder every single week — is “If you had to live the rest of your life at the level of function you have now, would you be satisfied?”

I always answer no to that question, because we are all still hoping to find answers that will improve my function, even if we can’t return it to my pre-heart-failure state. But I spent more time examining this question yesterday while I was talking to myself.

What if? The truth is that it would take some grieving and adjustment, but that eventually, I believe I would choose to live joyfully and with all the gusto I could manage even if I had to accept the fact that nothing could be done to change things. I don’t expect that to happen. But if I can’t find joy and happiness no matter the circumstances around me, I will never really find it even if things are going great in every area of life.

So yesterday I chose joy. And to go sit in a wheelchair in front of my favorite old tree, Ceorl, and look at his ancient, drooping branches that always seem to exude wisdom and contentment and strength.

I chose to allow Scott to push me along that trail, dappled with sun and shadows, covered with deliciously crunchy leaves, my Ellie girl trotting happily beside me. I chose to look passersby in the eye and smile at them. To lift my face to the sky and hungrily drink in the fall sounds and breeze and colors. To laugh. I chose to live my best life yesterday. It was a good day.

This is the choice I want to make every day. I may have to talk sternly to myself, but “when I am weak I am strong” because “. . .[God’s] power is made perfect in weakness. Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.” 2 Corinthians 12:9.

A very quick update to close this post. We went to Cleveland this week and saw the electrophysiologist. We really liked him a lot. He explained things in a way that no one else has up to this point, making it clear to us why I am so weak. There are multiple problems with the left ventricle causing the heart to send much less blood to my body than it needs. It seems that this is all being caused by not only the high frequency of PVC’s as my heart tries to beat, but also by the specific type of PVC’s.

I will need to have surgery (ablation – not open heart), and they are trying to get that scheduled as soon as possible. I would love a 100% promise that it will work. He said he can often give people a 95% prediction. My heart is a little more complicated, though, so he can only give me an 80-85% chance of success. But we will take that and move forward, continuing to take things one step at a time.

My kidneys are still not handling the heart meds well, so they changed those doses again, and although they didn’t seem to be helping the heart issues anyway, I am feeling worse since those changes this past week. More proof that the answers for me don’t lie in medications.

First, though, I return again next week for a right heart catheterization in the cath lab. I was told to come prepared for the possibility of being hospitalized then, depending on what they see in that procedure. We didn’t ask enough questions to understand this part fully (we were trying to process a lot of info at once). We will keep everyone updated as we learn more.

Thank you, always, for the prayers, for the financial help as we try to manage the extra expenses these trips bring to the family. A generous gift has covered those trips for us so far, but it is almost gone now. And thank you for helping the kids with meals here while we are gone. They are all showing signs of stress from all of this, and it helps so much to know that this practical piece is covered. We will continue to need that help if anyone wants to know how to come alongside us. We are looking for help with two meals this coming week.