No Hope in Heaven

There are many moments where I catch myself saying, “we’re in the future!” whenever I’m excited about some sort of technology related thing or heard interesting science news. One of the really wonderful things about our scientifically progressing world is that medical care is getting better and better. Many diagnosis are no longer death sentences and are becoming more manageable and can have a higher quality of life than in previous decades. Centuries ago many genetic conditions were often seen as something like a punishment from God or some sort of abomination so babies were left to die, so it’s great to reflect on how society has now moved past that and science is constantly advancing. When I reflect on that sort of thing it gives me a lot of hope for the future of humanity, especially for the future of people with special needs.

I would describe the hope I have as a realistic and sensible type because there is evidence for what I’m saying. I have a problem with the type of hope that comes from things there are no evidence for, could call that false or delusional hope. A good example of that is the hope people get from the belief in heaven.

A sense of hope partly comes from a desire for things to be better, and what sounds better than how many have described heaven? Especially in a situation where a child doesn’t have the ability to walk and is told they’ll be able to run and play when they get to heaven. That is one of the things that five year old Julianna Snow of Oregon was told by her parents when they described heaven to her because she has a neurodegenerative illness called Charcot-Marie-Tooth disease. She has very weak lungs because of the disease and under certain circumstances may need hospitalization in order to live, and her doctors think in some cases things might get risky and there are quality of life issues. So her parents asked her if she falls ill would she want to go to the hospital or stay at home and go to heaven where she was told her lovely great-grandma would be there and be able to run around, and not surprisingly Julianna is saying heaven. To put it simply, their religious belief makes their little girl want to die. That breaks my heart that these parents are fine with giving up on the possibility of more time with their daughter because of a comforting delusion. They say they are giving her what she wants by listening to her, but she doesn’t know anything beyond what they’ve told her.

There have been many times where people have told me to not be so critical of the hope religion gives people because it doesn’t do much harm, but I think it can do a lot of harm. I think it’s harmful to make someone want to die. The CNN article about her and her family referred to her as dying in the title, but none of us know when we’re going to die so if you think about it we’re all dying, but by referring to her like that they’re essentially giving up on her ( Many people have been diagnosed with disorders that were told they were terminal as children but lived well into adulthood. Some of them are writing to Julianna on this Facebook page and I think it’s really awesome.

Giving up on people for silly religious reasons should be a thing of the past, I want to move further into the future with more sensible hope.



13 thoughts on “No Hope in Heaven

    • I think the comfort is false for those left behind. If we are willing to question the easy issues about religion and the harm it causes, we MUST be willing to question the more difficult issues too.

  1. This is a difficult one. But as I’ve said on elsewhere, I value quality of life over quantity of life, so I agree with her parents decision to abide by her wishes.

    My problem lies with the fact that her decision was made based on skewed information… Well, not to put too fine a point on it… Lies.

    I would have much preferred that they gave her the proper information in term s that she could understand and work with her to come to an informed decision.

    The truth, however painful can be dealt with sensitively and gently without resorting to lies… Even for a five year old child.

  2. Interesting read. Where I have heartburn is when religion interferes with getting proper medical attention for a child. If an adult wants to pray his or her way to death and not seeking medical attention…knock yourself out, but a child can’t make the right decision. Its why we don’t let an 8 year old drive or drink alcohol or join the military.

    Humans wrestle with death. They have created beliefs to cope with their mortality. People fear death, even though it is going to happen no matter what. I am from the southern United States. Jesus is huge here. To quote Lewis Black, “he’s bigger than Coca-Cola”, so I was bombarded with religious dogma from my earliest thought. The afterlife. Where are you going when you die. That type of stuff was yelled from the pulpit every week. I struggle with religion because here, everywhere I turn, there it is. As a father and grandfather, I would do everything in my power to comfort my child or grandchild through death. Rest assured, it would not be denying them medical treatment.

    I enjoy your writing very much.

  3. Julianna and I (possibly) share the same disease, and I’m 41, rocking it on a ventilator. If it is CMT she has, it isn’t a terminal disease! It’s actually the most common inherited neuromuscular disease and is about as common as diabetes. It’s often so mild that people don’t even know they have it (and just think they’re clumsy). The real danger is when it affects your breathing muscles; it could lead to respiratory failure if you don’t have breathing support like CPAP, BiPAP, noninvasive ventilation or ventilation through a trach. But you can live for decades that way, and many do.

  4. This is a bad case to use to promote skepticism. If it would make her feel better, I would lie like a son of a bitch.

    The Invention of Lying – Ricky Gervais

  5. Yes! Excellent post. When faith is not innoculous at all…
    Plus this can extend to what some consider the civil right to die at one’s choosing of a time sufficiently ‘appropriate’. Hope and faith. Not only in religion but about technology and political expediency must be weighed out when endnof life decisions are made for one’s own desires and those of loved ones.
    Those frames of reference if not very informed are subject to judgment errors. Many undereducated people when faced with severe disabilities arising in their own lives or family or friends use their own frame of reference often backward and ill informed to make irrevocable decisions about the fate of theae lives. I truly believe any right to die legislation should include a required counselor or several group sessions with similar peers for the purpose of informing in such situations the actual real world rational and informed models of realistic and hopeful outcome possibilities as alternative choices. Some people having no associations with such aspects as living a successful and satisfying and fulfilling life with certain conditions may not see any hope but only what they see immediately before them. I have seen this fateful thinking and unenlightened mindsets and general culture attitudes unrealistically influence the decisions of people caght up with narrow perspectives about life and worth and success.

  6. How aggravating that I just left a long commentary and confirmed it but… No post showed I guess we’ll see if this one does. Disappointed not going to try to re-create it.

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