I’m an atheist, I’m also a Humanist. So, in 1998 when my then husband realized that he was dying from lack of affordable healthcare and untreated diabetes, he felt the need to get back to his religious roots and start going back to church. The Salvation Army Church was one that his parents had attended with their four children and the one that he felt was the right place to be. He was certainly scared of dying, and in looking back over the previous decades of being a free spirit/hippy, he realized that he had quit going to church in his teens. (about the same time he started drinking beer and smoking marijuana, go figure.)
So, at about 44, he realized that he was dying. Diabetes is a slow, painful dying off of various internal organs. He had a partial paralysis of his upper GI, diabetic neuropathy, diabetic retinopathy, hepatitis B, and in late 1999 he had end stage renal failure and went on dialysis. He was in constant pain from his nerves in his legs and feet dying off and firing constantly to try to tell his brain. On bad days, his upper GI was in a state of perpetual Reverse. he couldn’t even hold down water, would throw up everything in his stomach, then have dry heaves for HOURS. Diabetics need to have food regularly, for their medications to work properly. Without holding down food, or even the medications, he was only going to get worse. The only time he had any relief was when his cousin came over and shared a joint. (Two puffs and within seconds, his dry heaves STOPPED and didn’t start back up for hours.)
Back to church. Having come to that realization that he was going to die, he decided that he needed to “get right with God”. This was news to me, as we never really discussed religion, but I loved this hippy husband of mine and knew that he needed to do something to ease his mind. That was my only concern, letting him ease his mind and so that he could have something to focus on other than his last few years, knowing he wasn’t going to see his son or mine reach adulthood. So, I left a decent paying job that had me working on weekends for a job that would give me Sundays off. It would have been better if the first job could have let me just change to different days off, but it wasn’t possible to get any one person to cover the tasks I covered alone. They would need two and they knew it. (So, I moved on and they still needed to find two people to cover my one shift!) That was early 2000, about the same time my husband started dialysis. The new job wasn’t that great, small office, and I lasted a year. I’m certain that they canned me because they realized that my husband’s medical bills were going to cost them more than they thought I was worth.
In 2001, just weeks after finding a new job, he had a stroke. The signs were obvious, so I took him to the hospital near his family, so they could also visit, but that ER sent him home stating that the MRI didn’t show a stroke, even though ALL of the typical signs were there! It took two days for me to trick him into going to another hospital. This one started to bitch me out for not getting him there sooner, until I told them what the first hospital had said/done.
Now he was helpless, in the hospital, then in a Rehab hospital for a couple weeks, then home. No one along the way, in the hospital, rehab or his dialysis caseworker said ANYTHING about different state programs that were available to us as a low income family. I had to quit work to stay home to take care of him. Not even the church could do anything but pray, which did about as much good as nothing at all, other than make them feel like they were helping. Living on $685/mo with Rent at $600/mo isn’t possible, people. Finally, the caseworker at dialysis asked “why don’t you use AZ Long-Term Care System?” I was like “Why the hell didn’t anyone tell me about this before I had to leave my old job!?!?!?!?!?!!” Seriously! I could have used that info about 2 months prior, while he was still in Rehab, learning how to use a wheelchair.
I found another job, had some minimum wage guy come cook his meals and take care of him while I worked. Speaking of meals, a Diabetic Renal diet is NOT affordable by any means. No Salt, No Sugar, Low Potassium, Low Phosphorus, Double or Triple portions of LEAN meats. The most expensive cuts are the leanest. Low Phosphorus means no dairy products. No Potassium means no green veggies. He was eating so many eggs a day that he swore he was going to start farting feathers.
While he was at home all day and I was working, he started watching TBN, and was believing everything that Paul Crouch, James Dodson and all the others were spouting all day. He became even more religious, wanting to be in church both Sunday services, Wednesday nights and in the Pastor’s weekly radio ministry aimed at the prisoners in the local jails and prisons, trying to help them get away from gangs and straighten out their lives. So, I took him to all these places whenever he could physically attend. Because I loved him, I knew he was scared, and I understood what he was doing – He was like a college student cramming for finals, except these were the Final set of Finals that he’d ever encounter. What can a person do, when their loved one is dying, but help them find solace wherever they can?
On February 7th, 2002, he mentioned a new health issue, so I brought him back to the second hospital that he went to for the stroke, they knew him fairly well by then, with all his frequent flyer miles in their beds. This time, it was Colon cancer. They went into surgery the next morning, and removed the tumor. While he was still waking up, the doc told me that it was stage 4. Even if he fought it with chemo and radiation, he would only have 6-12 months to live. I said “With everything else he has going on, he couldn’t fight his way out of a wet paper bag.” Hospice of the Valley was called, they were remarkable, bringing out a hospital bed, bedside commode, and oxygen the day before he was due to be released. He came home on Valentine’s Day. More prayers, the pastor even came out to see him in the hospital and then at home. Morphine had him knocked out most of the time, and delusional most of his waking moments, but the pastor stuck around and prayed anyway. (Yeah, that’s going to help when he’s seeing not only the pastor but Batman and Robin in the room.)
On February 21st, just one week after coming home, he fell down in the bathroom (he refused to use the bedside commode, as there was no privacy.) I called the ambulance, they saw that he was on Hospice and asked him if he wanted to go to the hospital or just get help back to his bed. He wanted to just go to bed. We didn’t know it then, but the fall had caused something to tear open in the surgical site, and there was some internal bleeding. The next day was Dialysis day. He said he didn’t want to go, but I told him that he needed to go, anyway. Heh. I should have let him stay at home. He got there, and his blood pressure was so low, they couldn’t read it. They sent him to a third hospital, close to them and then called me. His family and I all met, to discuss what we should do, if the hospital should perform any live saving measures if he were to code out. We determined that we would wait until the next morning to decide whether they should do anything or not. We would meet up at 9AM the next morning. But before 6AM, I received a call that he’d died. When we had his memorial service, it was nice to see all the family & friends come from near and far, but where were they before he died? That was the last day I stepped in a church for any type of service.
Why don’t I believe in god? Why the hell should I? Why should I believe in something that didn’t make any substantial difference in my life, in my child’s life or really anything more than a little bit of comfort to a scared dying man? I don’t need to believe in some afterlife, I have this life, and I need to make the most of this one life that I know I have here and now. Because the one thing I learned when he died at 46 years old, was that Tomorrow is not guaranteed to anyone and we cannot live for a possible tomorrow in some other life after this one when we only have right now. Saying I’m sorry to the person I’ve actually hurt, instead of saying the lord’s prayer later over dinner doesn’t help ease the mind of the person I’ve hurt. Saying Thank You to the people who are there for you right then, instead of just remembering them in your nightly prayers. Actually helping someone out when they need it instead of the useless “I’ll pray for you” which doesn’t help one bit. Help with some housework, help with some shopping or other chores, help with whatever you can afford to do, but “I’ll pray for you” is worse than useless to the family caregiver who doesn’t have the ability to get half a night’s sleep, much less a full night’s sleep because there’s too much to get done.
I’m not angry at any god, I’m angry at people who think they can help by only praying. Praying away their own sense of mortality, of helplessness, and of their own fear of dying some day in a similar fashion. I’m angry at all the people in his church, and to some extent in his family, who were never around when he was alive to help, but offered empty condolences of “he’s in a better place now.” How about the truth? He’s not suffering any longer. He’s not in pain any longer. That’s the better euphemism, honestly.
To say he’s in a better place? No, his cremains are in a box in the laundry room closet, that’s not necessarily a better place. Ok, some of his cremains are on a favorite mountain side of his, some are in the ocean off Hawaii and some are scattered hither and yon by his family, but the rest, they are in a box. It’s not anything fancy, in fact it’s a Pop-Tarts box.