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BACKGROUND: I have a sister who was born in the late 1980’s with a relatively common (1 child in 2000 to 4000 children) genetic defect. My sister’s genetic sequence is missing snippets that controlled how her prenatal body set up her heart (and potentially her brain). I was born in the early 1980’s, so I was 7/8 years old to 16 years old more most of it. I admit to being 32+, so let’s go with that:)
In the simplest terms, the 2 main branches of her heart were swapped and there were hole(s) in her heart where there shouldn’t have been. She stopped breathing at 3 weeks or so in my mom’s arms because enough of the holes in her heart had closed up so that there wasn’t any openings for oxygenated blood to get dumped into traveling around her body. It would have been nice if the MD that signed off on discharging her from the hospital at 2 days old hadn’t missed that there were problems here.
It took 5 open heart surgeries over an approximately 8 year span to get my sister’s heart to maintain function. But that 8 years also includes periods of operation prep, and dealing with regression fallout setting back developmental milestones by months and years.
The “switch” operation that they used to swap the Aorta and Pulmonary so that the oxygenated blood went to the body and the unoxygenated blood actually made it to the lungs without the scenic body side tour was cutting edge surgery for that time and one of the first ones at the prominent hospital. They had to apply a patch that extended the Aorta, and then go in and replace that patch with a heftier patch that could survive puberty and adulthood.
The doctors actually think that she had a heart attack while being operated on during the last surgery (I was 16 at the time). She spent 6 weeks on a machine to handle all the blood circulation while her lungs did not move for her gray, still body. I visited my sister a few weeks after she came off the machine and got to celebrate her drinking a few ounces of milk while sporting steroid-induced facial hair with a skeletal frame that anorexic models would envy.
It all “worked out” – my parents are still married and my sister is still alive (though her heart functions as well as a 70 year old women’s typically does). Doctors literally wrote case studies about my sister’s heart and what they did to fix it. On a lot of levels, we got a pretty amazing “happy ever after” ending…
My sister is still alive and has the developmental age of around 8-10 years old.
– Doctors think that her base IQ had to be in the 120-140 range to be so robust as it now presents based on the number of times oxygen didn’t make it to her brain and her brain got damaged.
All of us siblings still talk to each other – which is insanely impressive after the trauma and upheaval that happened in our lives.
I was in my late 30’s and into several years of counseling before I started realizing that it had negative consequences for myself too and that vastly informed how I interacted with the world (at least on a paradigm-setting worldview level). It literally hadn’t dawned on me what it would be like to have a non-broken-heart informed worldview and a bird’s eye view of what it takes to keep a broken heart beating.
It makes reading about “A broken heart” from my perspective a little… out there. I don’t know how to mourn “a broken heart” very well in part because in my ears, the statement functions as a visceral call to get the harmed person to the professionals to scope out the functional changes that need to happen to stabilize the individual and correct the situation. No non-professionals need apply:)
“Broken hearts” are plumbing problems requiring care-giving patient-centric systemic solutions from the environment. Period.
NOTE: I don’t treat my teenager’s emotionally based broken hearts that casually in direct conversation (usually). I prescribe ice cream before I prescribe getting a better social system:)
[Yes, try bringing that pragmatic experience to your standard Relief Society or Gospel Doctrine class. At 12. At 17. At any adult age since then.]
It’s “reading the signs” of a baby being “a little blue around the lips – but fine”.
NOTE: My dad still scans the room every 30 seconds or so to double check that my middle-aged sister is still breathing.
It’s the default stance of “what is the problem” and “is your solution actually going to work to solve the problem?”. (Especially when the answer is usually “You’re the problem” and the answer is “No”.).
It’s also a rather intense way to develop a love of medical jargon and case-management. Watching my mom advocate for my sister made it easier for me to advocate for my family in a variety of systems (once it dawned on me that is what needed to happen anyways).
I guess I don’t see a “broken heart” as something that a person has control over, for example when talking about “a broken heart and a contrite spirit”. Do we really want to do the work that having a “Spiritual Broken Heart” would entail to get the spiritual circulatory system functional?
Are you willing to graft non-you spiritual pieces the way that scientists used living tissue that wasn’t my sister to extend a major artery? I think they used graft(s) made from pigs actually.
Are things “spiritually bad enough” (and you want to be honest enough to admit it and drag yourself to the spiritual ER) that that is even possible?
And sometimes you might not be in “right place at the right time” and need to change locations (even spiritual locations and be outside church). My sister’s heart care in the 1988 – 1996 centered around the local hospital and GP and 2 prominent hospital systems before as much structural reconstruction as her body could tolerate was completed. I do know that one of the hospitals sent my sister to the other one for surgeries that they scoped out needed to happen that were beyond their expertise. Now, her care is handled by routine scans and medications at smaller hospitals.
It actually made this passage from C.S. Lewis make more sense to me because we use the “spiritual broken heart and contrite spirit” wording where he is using the “living house” wording.
Quote:Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make any sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of – throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were being made into a decent little cottage: but He is building a palace. He intends to come and live in it Himself.
As we invite God into our “broken heart”, we understand some of what is going on. We know how things work around our soul to a certain degree.
But we rarely get a detailed blueprint of God’s plans including all the grafts that are going in place.
But whoever got deep into someone’s physical heart and decided, “hey – it looks like these 2 big pieces are going in the wrong direction, let’s just swap them and stitch it all up” – it’s dicey enough on a physical level – but taking it to the metaphysical level? Scary.
Thanks for sharing. I’m sorry for you and your family’s trials. My family has had our share as well, I suppose we all have. I walked away from my trials slightly different, which is expected, we’re all unique.
One thing I truly struggled (and continue to struggle) with is not letting my trials become my identity… if that makes sense. Well I shouldn’t say that, in a strange way there were times where retreating into my trials brought some comfort. There is a season.
I certainly don’t want to undermine anything you’ve said but I caught myself thinking, which is always dangerous.
It’s a little more obvious in the physical world when things are out of harmony but less so in the spiritual world. Who is to say what a heart looks like in the spiritual world? Could we run the risk of trying to swap someone’s spiritual heart because it looks backwards to our own? I know it’s not that cut and dried, not that simple. Just a thought.
Church can feel that way at times. People convinced that my heart is backwards and me returning the favor. It makes it incredibly hard to come together. Maybe church was meant to be more like a family because the more positive aspects of a family that I’ve seen is when people decide to stick together when the going gets tough. Not every family is like this but I think being a family raises the tolerance level of sticking with it, sharing burdens, and overcoming divides. Essentially this:
AmyJ wrote:
All of us siblings still talk to each other – which is insanely impressive after the trauma and upheaval that happened in our lives.
I’m not sure how I feel about the C.S. Lewis quote. What if I didn’t want a palace? What if I wanted a cottage? There’s always the case for god having plans that we can’t see or don’t understand, like if I had that palace I might discover that I love it more than I could ever love my cottage. Then again, maybe not.
In the spirit of things I’ve read here, it doesn’t have to be an “either or” thing, it’s can be an “and also” thing. In other words I can both cherish my cottage but not be completely closed off to the idea of change. After all, change is how I got here and change is how I’ll go forward.
nibbler wrote:
Thanks for sharing.I’m sorry for you and your family’s trials. My family has had our share as well, I suppose we all have. I walked away from my trials slightly different, which is expected, we’re all unique.
One thing I truly struggled (and continue to struggle) with is not letting my trials become my identity… if that makes sense. Well I shouldn’t say that, in a strange way there were times where retreating into my trials brought some comfort. There is a season.
I certainly don’t want to undermine anything you’ve said but I caught myself thinking, which is always dangerous.
Thanks,
I think I get what you are saying – in general, it is easy to let our trials provide framework for “labels” that we use to be proportionally out-of-balance when we look at our selves and assess ourselves.
I have been a loss for words for a long time about that foundational impact that these specific challenges had on my perspective because we all walked away from them, so “it’s fine”, right?
nibbler wrote:
It’s a little more obvious in the physical world when things are out of harmony but less so in the spiritual world. Who is to say what a heart looks like in the spiritual world? Could we run the risk of trying to swap someone’s spiritual heart because it looks backwards to our own? I know it’s not that cut and dried, not that simple. Just a thought.
I think that there is a big pitfall for us humans to judge that we know when pieces of the physical world are out of harmony. We are known for assuming more then we know.
I have struggled for a long time to see how so many people missed that my sister wasn’t getting enough blood circulation for the first few weeks of her life. There were nurses, a doctor assessment, potentially a follow-up assessment with a GP, and my dad was a certified EMT due to volunteer firefighting he did while living on a mountain that caught fire regularly.
The final conclusion that I came up with is that if things “aren’t quite bad enough”, structural integrity can be mimicked to a specific degree and mask the extent of the damage. My sister could have looked “a little blue” but present in the range of “mostly normal”. And that there usually isn’t enough time to deal with murky stuff due to the way that our systems of healthcare are set up.
In terms of spiritual “heart repair”, I think we can ask general questions to trace the general direction(s) one’s spirituality is going. “Is the fruit good” and “Is this leading me to a healthier, connected, more spiritually balanced person?” – and similar questions.
nibbler wrote:
Church can feel that way at times. People convinced that my heart is backwards and me returning the favor. It makes it incredibly hard to come together. Maybe church was meant to be more like a family because the more positive aspects of a family that I’ve seen is when people decide to stick together when the going gets tough. Not every family is like this but I think being a family raises the tolerance level of sticking with it, sharing burdens, and overcoming divides. Essentially this:AmyJ wrote:
All of us siblings still talk to each other – which is insanely impressive after the trauma and upheaval that happened in our lives.
Some individuals at church have really helped me improve my spiritual heart at times, but a lot of the time – the church members and I didn’t speak the same spiritual dialect – so a lot has been lost in translation on both sides.nibbler wrote:
I’m not sure how I feel about the C.S. Lewis quote. What if I didn’t want a palace? What if I wanted a cottage? There’s always the case for god having plans that we can’t see or don’t understand, like if I had that palace I might discover that I love it more than I could ever love my cottage. Then again, maybe not.In the spirit of things I’ve read here, it doesn’t have to be an “either or” thing, it’s can be an “and also” thing. In other words I can both cherish my cottage but not be completely closed off to the idea of change. After all, change is how I got here and change is how I’ll go forward.
It’s an interesting question of “mortal consent” in the afterlife.
We were sold that what we seal on earth is sealed in heaven (and vice versa?) without regard to “what if I (as the other person) don’t want that”?”.
But I am not sure that our church doctrine does well in the “Spiritual Ethics – Consent” arena at all because it uses the general “Choice & Accountability” lens to view all consent questions under.
AmyJ wrote:
I have struggled for a long time to see how so many people missed that my sister wasn’t getting enough blood circulation for the first few weeks of her life.One thing that gave me a little hope in your story was the following:
AmyJ wrote:
Doctors literally wrote case studies about my sister’s heart and what they did to fix it.
Your sister’s sacrifice has likely helped others who have or will face similar issues. Hopefully the medical practice has gotten better over time such that things won’t be as bad for others.
I think the rarity of the condition also factored in, that and it went unnoticed because everyone’s guard was down. People just assume things are alright. Those phenomenon occur with matters of the spiritual heart as well.
AmyJ wrote:
In terms of spiritual “heart repair”, I think we can ask general questions to trace the general direction(s) one’s spirituality is going. “Is the fruit good” and “Is this leading me to a healthier, connected, more spiritually balanced person?” – and similar questions.
First thing first, I think it would be helpful to know a healthy spiritual heart functions. At church it feels like the definition of a functioning spiritual heart is one where someone has a testimony of all the “correct” things, in other words when someone believes as we believe. That can lead to a misdiagnosis or even mask spiritual health issues.
To state it explicitly, when someone doesn’t have a testimony of the things we believe they can still be 100% spiritually healthy. Or when someone does have a testimony of the things we believe we can assume things are alright but they really aren’t.
Back to the cottage/palace. I’m sure it’s human nature because it exists in more places than just our church culture, C.S. Lewis gave the analogy and he isn’t a member…
At church there’s a belief that permeates a lot of our faith, hopes, and dreams. This idea that more is better. We strive for stronger testimonies, more baptisms, a better kingdom in the afterlife, a mansion above. If we obtain a “strong” testimony would we even know it or would we continue to chase a testimony that’s even stronger?
Always having something to chase can be motivational but it can also leave people feeling perpetually dissatisfied. It is not the man who has too little, but the man who craves more, that is poor… in spirit.
Do I need my own planet/universe to feel satisfied, or can I be spiritually content in my broken body in a fallen world?
THE ‘WHY” OF MY SISTER’S HEART In the case of my sister’s heart, I eventually “made peace” with it being a variety of factors including:
– Sometimes “good enough” covers over from what is really happening.
– I think that the professionals who could have picked up on something being “off” didn’t have time to follow through on it and that the expert whose job it was to check everything both may “have fallen for the mask” and been out of his league – maybe a resident completing training.
– I agree it’s a factor. It’s not super common (but still common) and my sister’s presentation of the genetic disorder isn’t necessarily that common – especially in terms of severity.
– The nurses and my parents were looking for a “healthy newborn”. My father had critical care training – but his perspective includes all the “supporting a mom and new baby” stuff with 2 kids already at home. We didn’t have a robust support system -so my dad was the care-giver for all of us at the time.
“HEALTHY” SPIRITUAL HEART FUNCTION:
– I agree that “testimony” is not a good marker.
– I think that “how you treat others” is a better marker in the sense of how you relate to others.
Part of the situation is that when we talk about “spirituality”, we are also talking about “the state of the mind” and “the state of the body” and potentially bringing more frameworks into the conversation. In this conversation, we are talking about how and individual’s “state of mind and body” interacts with the communal “state of mind and body” and the “state of mind and body” of others who are also there.
MORE IS BETTER:
On the global stage, “Capitalism” and “Colonialism” were defining how countries traded and interacted with each other and “hierarchy” was the name of the game. Religion incorporated (or already had) those themes into how theologians defined God’s dealings with humans – and our origin story didn’t disrupt those Christian origin traditions. I think a case can be made that the “Prosperity Gospel” is “Spiritual Capitalism” repackaged (or that there is a considerable overlap). Some of the themes in “Patriarchy” mimic themes of “Spiritual Colonialism” to a pretty impressive degree also.
I get why these themes were used to establish and transfer “Spiritual Certainty” throughout communities (in part to build those communities).
For my part, I have refused to reclaim “Spiritual Certainty” because I can afford to choose how I spend my spiritual resources, and “Spiritual Capitalism” and “Spiritual Colonialism” aren’t in line with my personal values (especially colonialism). A key aspect of these choices is that I am “old enough” to have experiences in a variety of ways to see what that looks like.
Quote:Do I need my own planet/universe to feel satisfied, or can I be spiritually content in my broken body in a fallen world? – Nibbler
Similar statements/questions come up in my life quite frequently (here of course), some news, and in a lot of TV shows, movies, and video games that attract my attention.
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