Handling severe illness as a NOM

[Evil Monkey]

Morning my NOM family and Happy 2026,
Its been awhile since I posted. I have been through the ringer lately over the past 4 months. Dealing with three hernias at once. Two of them ignual (abdomen) and one of them hiatal (near the esophagus). I recently received emergency surgery for the two ignual hernias just before Christmas. Recovery is not going as planned. Instead of feeling better I actually feel worse. Convincing Doctors of that though is like pulling teeth...i won't bore you with all the frustrating details of my post surgery but it has been hell. My question for you is as a TBM I would get a blessing and be filled with false hope but at least its something, what are my options as a NOM? Where do I turn for some comfort. I will give you some details..i have spinal Stenosis for about a decade. There has been MS scares. I could have it early stages but its definitely undiagnosed. Anyways the hernia surgery woke up the sleeping dragon in my spine. And now I cant sleep without a severe neuropathic episode. I have been to the ER and my surgeon all this week. They have ordered an MRI to take a closer look and see if perhaps the mesh repair implant they used is causing nerve compression. Where do I turn for comfort as a NOM? Im not looking for false hope that prayers will miraculously reverse anything...i just want comfort and peace and a community I czn talk to that has walked the same path I sm now walking. If anyone has suggestions please let me know. Happy 2026. It may not seem like it for me but i am coming to term as this year I will be only 1 year away from 50 that this is life. Faith to me is all about peace and love and not about false hope and praying for miracles. Why do I deserve a miracle when my first born only got 21 minutes of life on this Earth. Why do I deserve special treatment if my baby couldn't get the time of day. I just need people to talk to who have been there. The faith I have left as a NOM believes in people and that we can help each other come to the reality of whatever life throws at us. Peace and Strength.

[alas]

I am so sorry you are going through so much right now. I can give you some real empathy on the neuropathy. Mine has a different cause, but the pain is just as real. And doctors do not take it seriously. Somehow they seem to think that neuropathy pain is false pain, so therefore it doesn’t hurt. They will give opioids for “little” pain after major surgery, but somehow how think neuropathic pain is just fixable with aspirin. . .oh, you can’t take aspirin, oh well. Shrug. To doctors, neuropathy pain is just something you live with and don’t seem to realize that when you cannot sleep, EVERYTHING goes wrong. Your whole body breaks down and people die from not being able to sleep, but just live with it. I hope your doctors are taking you seriously, if not, have a good crying/screaming breakdown in their office. It usually wakes them up to something needs to be done about the pain.

As far as where you go for comfort or reassurance, friends, humor, find some little ceremony that can be just as fake or meaningless as a blessing, but you give it meaning. If Mormon ceremony no longer works for you, come up with new ceremony. You can invent it or borrow from other traditions. My daughter, who the doctors are trying to figure out what the blank is wrong and is also being tested right now for MS among other things, has herself a little tea ceremony. She comes home from tests or another frustrating doctor appointment and stops all interruptions (lock up all animals, turn off all phones, and shut the world out) then she goes through this process of fixing her favorite herbal, sits down, and has quiet time. She makes her own comforting ceremony. Another daughter borrows pagan ceremonies. She lights a candle for prayer, and makes it into a full blown ceremony. When her spouse died in May, she cut her waist length hair very short. Several pagan cultures give meaning to cutting hair, from Norse to American First Nations. My son who has stage 4 cancer is planning to wear a funny wig (to celebrate hair loss, not that he isn’t totally bald to start with) after each of 12 chemo sessions and take pictures to put on social media. So, you invent something that has meaning to you and you make it into your own ceremony.

See, part of what makes a Mormon blessing meaningful is the ceremony aspect. It is not true at all that it does nothing. It tells you that somebody cares enough to pray over you. It is why people have funerals, baptisms, weddings. You do something in a purposeful way that you give meaning to. You involve other people or not. Involving others gives you the feeling that others have your back, which can be very important and is part of most ceremonies. Other ceremonies are private, like the tea or lighting a candle or saying the rosary. Just the process of doing whatever you do gives comfort. Most traditions teach ceremonies for all important life events and Mormonism is a bit short on the whole ceremony thing, so it is a bit foreign to us. As a therapist I used to teach this to my clients and have them invent the ceremonies they needed. Need to tell a parent to go to hell? Write them a letter telling them exactly why you are sending them to hell and then make a ceremony out of burning the letter and the smoke going up sends the massage to them and the universe. We would invent new ceremonies to mourn the childhood they should have had or to cut off relationships with abusive family members. Need to divorce a parent. Have yourself a divorce ceremony. You can cut up photos or copy your birth certificate and burn it. (I don’t recommend destroying the original, Trump might deport you) My clients didnt need ceremonies for physical healing, so I don’t have recommendations off the top of my head, but I know there are Native American ceremonies for healing.

Another suggestion is reaching out to friends. Do not suffer this alone. Ask for whatever kind of prayer they believe in. Ask for food to be brought in or any kind of physical help. You need to know people care about you. This has been scientifically proven to help with healing. So reach out.

So, sending cyber hugs and I will look up a good Paiute (I live in Paiute country) healing ceremony that I will do on your behalf.

[Evil Monkey]

I am so sorry you are going through so much right now. I can give you some real empathy on the neuropathy. Mine has a different cause, but the pain is just as real. And doctors do not take it seriously. Somehow they seem to think that neuropathy pain is false pain, so therefore it doesn’t hurt. They will give opioids for “little” pain after major surgery, but somehow how think neuropathic pain is just fixable with aspirin. . .oh, you can’t take aspirin, oh well. Shrug. To doctors, neuropathy pain is just something you live with and don’t seem to realize that when you cannot sleep, EVERYTHING goes wrong. Your whole body breaks down and people die from not being able to sleep, but just live with it. I hope your doctors are taking you seriously, if not, have a good crying/screaming breakdown in their office. It usually wakes them up to something needs to be done about the pain.

As far as where you go for comfort or reassurance, friends, humor, find some little ceremony that can be just as fake or meaningless as a blessing, but you give it meaning. If Mormon ceremony no longer works for you, come up with new ceremony. You can invent it or borrow from other traditions. My daughter, who the doctors are trying to figure out what the blank is wrong and is also being tested right now for MS among other things, has herself a little tea ceremony. She comes home from tests or another frustrating doctor appointment and stops all interruptions (lock up all animals, turn off all phones, and shut the world out) then she goes through this process of fixing her favorite herbal, sits down, and has quiet time. She makes her own comforting ceremony. Another daughter borrows pagan ceremonies. She lights a candle for prayer, and makes it into a full blown ceremony. When her spouse died in May, she cut her waist length hair very short. Several pagan cultures give meaning to cutting hair, from Norse to American First Nations. My son who has stage 4 cancer is planning to wear a funny wig (to celebrate hair loss, not that he isn’t totally bald to start with) after each of 12 chemo sessions and take pictures to put on social media. So, you invent something that has meaning to you and you make it into your own ceremony.

See, part of what makes a Mormon blessing meaningful is the ceremony aspect. It is not true at all that it does nothing. It tells you that somebody cares enough to pray over you. It is why people have funerals, baptisms, weddings. You do something in a purposeful way that you give meaning to. You involve other people or not. Involving others gives you the feeling that others have your back, which can be very important and is part of most ceremonies. Other ceremonies are private, like the tea or lighting a candle or saying the rosary. Just the process of doing whatever you do gives comfort. Most traditions teach ceremonies for all important life events and Mormonism is a bit short on the whole ceremony thing, so it is a bit foreign to us. As a therapist I used to teach this to my clients and have them invent the ceremonies they needed. Need to tell a parent to go to hell? Write them a letter telling them exactly why you are sending them to hell and then make a ceremony out of burning the letter and the smoke going up sends the massage to them and the universe. We would invent new ceremonies to mourn the childhood they should have had or to cut off relationships with abusive family members. Need to divorce a parent. Have yourself a divorce ceremony. You can cut up photos or copy your birth certificate and burn it. (I don’t recommend destroying the original, Trump might deport you) My clients didnt need ceremonies for physical healing, so I don’t have recommendations off the top of my head, but I know there are Native American ceremonies for healing.

Another suggestion is reaching out to friends. Do not suffer this alone. Ask for whatever kind of prayer they believe in. Ask for food to be brought in or any kind of physical help. You need to know people care about you. This has been scientifically proven to help with healing. So reach out.

So, sending cyber hugs and I will look up a good Paiute (I live in Paiute country) healing ceremony that I will do on your behalf.

Thanks Alas for your kind words of empathy and all your suggestions. Several of your suggestions are things that i have been doing but not to the same level of diligence. Like I have found meditation to be comforting but lately the pain has been so great following my hernia repair surgery that I at times have abandoned peace and meditation for anger and scorched earth aiming my anger every which way and when I'm done I only feel worse not better. Leaving me depressed and falling back on trying to seek calm as a better solution to managing my pain. But like you mentioned, it is hard to stay calm when the people who have gone to school for over a decade and are employed to help you with your neuropathy know so little about it unless you meet specific markers in your blood or imaging tests...if you can even convince them to order those imaging tests which is a battle in its own right. So when I mentioned anger and scorched earth thats what Im referring to, my reaction to recent doctors i have seen lack of empathy to help me.

You mentioned that you are from Paiute Country. I have mentioned it before on this board I believe but it has been awhile since I have posted but I have been posting off and on this board since about 2009, and my wife is full blooded Navajo, making my only living child my 22 year old daughter half Navajo. We live about 4 hours from where my wife was born and raised on the Navajo reservation and where her Mom and Dad still live. So I know alot about there Medicine Man ceremonies cause my Mother in Law who is baptized Mormon goes to church occasionally for the social aspect of Church but mainly puts much more stock in Navajo tradition and there religious ceremonies. Only I don't know how its done in the Paiute Nation but in the Navajo Nation Medicine Men services are quite expensive. I mean not as much as you would pay out of pocket at a hospital if you had no insurance but it is up there. For instance the big ceremonies that involve multiple days worth of prayer, smoking, tea and silence in your Hogan under the supervision of a Medicine Man can cost a couple of thousand dollars. And just to schedule an initial appointment with a medicine man for him to make an assessment and offer advice is a couple of hundred bucks if you go to a medicine man with a good reputation on the Rez. I've been through all of that over the past nearly 26 years married to a Navajo woman. When are first born child was diagnosed with anencephaly at his very first ultrasound and we were told he would most likely live while he was in the womb to full term there was zero chance of survival outside the womb... however that didn't stop family and friends filling us full of false hope till the day our son both was born and died 21 minutes later. But my Mother in law insisted on taking us to medicine men and had multiple ceremonies performed before our son was born. I never stopped to think that she was doing it because she cared though. I was too busy being frustrated that it did no good and we still lost our son. Your words are comforting because it provides me context of what happened decades ago when my wife and i were first starting out and all this that was done for us i shrugged off in mournful anger but in reality they were doing it out of empathy and love. Thanks again for your kind words. If you ever wanna swap more stories about the differences between the Paiute and Navajo Rez let me know. I know very little about the Paiute but have a wealth of knowledge about the Navajo. I will take your advice to heart. Thanks so much.

[Angel]

As an atheist, I’m comforted by the knowledge that whatever harm comes my way is not judgment or punishment from “God,” sent to refine a rebellious soul. It’s simply the laws of nature—no cruel, hidden meaning behind it.

Empty boat:

There’s a Zen story in which a man is enjoying himself on a river at dusk. He sees another boat coming down the river toward him. At first it seems so nice to him that someone else is also enjoying the river on a nice summer evening. Then he realizes that the boat is coming right toward him, faster and faster. He begins to yell, “Hey, hey, watch out! For Pete’s sake, turn aside!” But the boat just comes right at him faster and faster. By this time he’s standing up in his boat, screaming and shaking his fist, and then the boat smashes right into him. Only after the collision does he see that it’s an empty boat - he was yelling at an empty boat. No one to be angry at. It is up to us to move, to fix situations. There's nothing to be angry about, just need to see things as they really are and do what needs to be done.

Some suffering comes from real, physical pain—but much of it comes from believing our thoughts. When we observe thoughts without attachment, we can recognize which parts aren’t real and let go of pain that doesn’t actually exist.

I focus instead on what I can truly fix: diet, stretching and physical therapy, research, and connecting with others who have made it through similar conditions. I no longer waste time on superstitious nonsense. I spend my limited energy educating myself and acting on things I can genuinely do—then I feel good when I accomplish a real task, however small.

Rest. Stretch. Eat well. Learn. Take small, real steps. That’s real comfort—the kind we can actually give ourselves.

[alas]

Even an atheist can find a ritual or ceremony that helps. See, placebos work. Really. There is a reason scientists never have a single control group that gets no medication. They may have 3 groups, the real medicine group, the placebo group, and the nothing group. I took classes in psychology where we actually studied the placebo effect. But, if the placebo group knows they are the placebo group, it doesn’t work. So, atheists know that in a religious ceremony, it is just a placebo.

For this reason there is a tricky balance for getting atheists to believe that a religious placebo will help. Even religious people know that there are some things that blessings just don’t help with. They seriously never expect a blessing to fix something that even the best modern medicine can’t fix. Likewise, we don’t give a pill to fix an amputation because nobody believes that. And I am pretty sure your Navaho relatives didn’t seriously expect your baby that died to be completely healthy. But, you know, if it comforted your mother in law, then it was worth it. I know I would have gladly paid over a thousand dollars for some comfort when my son and his wife lost a baby. I seriously don’t think my son is over it, because early in that pregnancy she had some trouble and he gave her a blessing. He felt so strongly that the baby would be fine. Months later, she went into labor. One week before the “viable” date. One crappy week and they probably could have saved that baby. Baby still had a heart beat until birth, but couldn’t draw in that first breath.

So, we have to pick something that does not repeat what we disbelieve too closely. And we don’t ask for impossible miracles or we won’t even get comfort. So, exMormons who are unsure God even exists shouldn’t go to an Evangelical preacher for a miracle healing. They just won’t believe it.

And we shouldn’t borrow a ceremony from someone’s culture if we are around someone who still believes or was raised in that culture or they might see it as mockery. You know, cultural appropriation really can be offensive, so you would need to be really careful borrowing from Navaho culture. And this borrowing needs to be done with utmost respect because we are treading on sacred ground always. This is why I would never do something like burn sage if I had First Nation members next door. Luckily my 1/2 Shoshone neighbor is down two and she would just roll her eyes.

The second thing we need to understand about “borrowed” herbal ceremonies is that they are not just religious. Those plants have medicinal value. Now, Evil Monkey, you know all this I am sure, but I am writing it for others. For example, almost every ceremony in most Native American cultures starts with a sage smudging. They fumigate with sage smoke that has properties that will really drive out some of the invisible “spirits” and other monsters that can make us sick. Yes, burning sage can really protect you from stuff like black plague. So, there is more than placebo effect.

Often it is just best to invent our own ceremony. Or ASK for help and let your Native American support person lead you in figuring out how to incorporate things in ways that will not be offensive. You are not really USING their ceremony, so much as looking for ideas that help you find what works for you. I have this neat book of Ethnobotanical traditions and science, written by somebody who is really from some southwestern tribe (I forget which and his name is very Hispanic) but he tells you what the plants contain as well as uses. But you can take any knowledge of plants, for example, lavender is calming, and get some essential oils or scented candles and some tea that fits your purpose and take advantage.

So, let’s invent a simple ritual. Situation, you come back from a frustrating doctor appointment. Angry!

Step one. Drive out the dark feelings. Now, I do burn sage, but not often to fumigate because I believe in modern cleanliness to drive out plague infected rodents. But I use it to drive away dark spirits. Practical advice. If you live with most people, they will gripe if you do it in the house. Yeah, it drives away people too. So, as you are waving the burning sage, you picture in your mind the dark ugly anger being driven away by the smoke. The visualization is what makes this work. If you paint a good enough picture in your mind, it tricks your subconscious into believing the placebo. Yes, scientifically proven. So picture either evil spirits, dark clouds, something that represents the smothering dark anger. (I usually can’t resist picturing the doctor choking to death on the smoke as well) Watch as the smoke drives out these evil nasty dark things. Breathe it in, slowly. Let it out slowly and picture the dark things leaving you. Relax and breath and picture the dark things leaving. Some people use incense, but I find the sage branch more effective as you can wave it as you visualize.

Step two. Relax and move forward. This is where you can find a safe place, with your relaxation tea and your relaxation candle. And for me, there

[alas]

Rats, that last post was too long and cut off the last and I can’t seem to retrieve it and right now, I have to go. So, I will come back later and rewrite

[Wonderment]

Hi, I am so sorry to hear about the pain you are having as a result of your hernia surgery. It is agonizing when it interferes with sleep and daily activities. While I don't have any recommendations for books or information on spiritual practices for healing, I have a secular suggestion. By chance, could you ask or insist that your doctors refer you to a specialist in pain management ? They focus their work specifically on keeping patients on a routine that provides round the clock comfort. When my relatIve was recovering from cancer surgery and was in severe pain, this specialist was extremely helpful , much more so than the cancer doctors. Pain specialists actually believe the patient, as opposed to other doctors who may be skeptical. It's a relief to work with a doctor who actually believes you.
Sending lots of positive healing energy to you. Please take care and keep us posted. Wndr.

[alas]

During the relax and move forward step from what got cut off above was basically to find what for you helps you relax and then move into any problem solving. Sometimes there is really nothing you can do and then it is a matter of finding support and dealing with feelings.

So, on to what can be done. The pain specialist is an excellent suggestion. Another thing is to ask for some kind of medication. There is medication specifically for nerve pain. One is Gabbapantin and I am on one that is an off label use of a tricyclic antidepressant. Don’t be afraid to ask your doctor for what you feel you need. And something you can do on your own is to try CBD. It is over the counter and helps both with pain and sleep.