“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.