I stopped the Fentanyl (a strong painkiller) this week and spent a sleepless night in withdrawal, wired, nauseous, hurting, shaking, shivering, and unable to lie still or get comfortable in any position, even with a sleeping pill. The next night was a little better, and on the third night, I took both a Neurontin (a non-narcotic pill for nerve pain) and an Ambien, but even that didn’t enable me to stay asleep, so at 3:00 a.m., I got up and asked the Internet, “Why should I continue to live?” The answer was basically because of Peggy. I’ve talked to her about feeling that, in order to keep going, I must find some reason for optimism. I know that three months isn’t enough time to justify such hopelessness, yet no one who hasn’t lived day-in and day-out with severe pain has any right to judge me because only they can understand what it means to live with minutes that drag like hours, and hours that drag like days, day after day after day until all one can do is to cry. It’s also true that when one lies away for most of the night, desperately tired, but in too much pain to sleep, one’s thoughts go into the pit, and my own pit contains statements like, “There being no god, life is pointless at best, and as for my own life, it will only go downhill from here until such time as I kill myself, or worse yet, Peggy dies,” and, “The people who are supposed to be my friends never call or come to see me, and this means that I’m all alone except for Peggy and my blog buddies,” and, “It might take her awhile to realize it, but Peggy would be better off if I were dead because I have nothing left to give, and everything I try to do to help myself only throws good money after bad.

Today—four days after stopping the Fentanyl, I realized that I simply had to take something, so I took a fair-sized dose of oxycodone (the ingredient in Percocet), and since I hadn’t had any for awhile, it took the edge off. I’m still resolved to stay away from the Fentanyl if at all possible if only so I won’t have to face going through withdrawal again.

As most of you know, I’ve lived with pain for years, but this is far worse, not in intensity, but because it never stops. In order to understand my discouragement, it’s crucial for you to know that, instead of getting better with time, the pain is getting ever more severe, and I keep telling myself that It’s not supposed to be this way! My shoulders have been a major problem for nearly a decade, but the pain is nearly always worse at night and can be eased by taking a moderate dose of pills and sleeping in a recliner with ice packs on both shoulders and a heating pad on my chest. Nothing but a high dose of Fentanyl touches this pain much, but a life on drugs is a life spent treating the symptom rather than the problem, yet what choice do I have? I can at least be glad that I have access to good drugs, but they’re scary because the dose that I need to ease the pain is such a high dose that I live with the fear that I might either accidentally overdose or that my liver and kidneys won’t be able to sustain the amount of drugs I take, and then what?

I’m also taking Fosamax (a bone thickener) for a month; I start physical therapy on Monday (I’ve waited nearly a month to get in); doing physical therapy exercises that I got off the Internet; and I see a new neurosurgeon the week after next (I fired the old one). I also get a BIPAP on Monday. I have severe sleep apnea, so I’ve slept with a CPAP for years during which the apnea has gotten worse and worse. Now it has suddenly gone off the chart, so much so that the new $3,000 CPAP that I got in December can’t control it. This means that I’m exhausted all day because of the pain keeping me awake and then the sleep apnea interrupting what little sleep I do get (a major reason I stopped the Fentanyl is that pain killers—and any other drugs that relax you or make you drowsy—worsen sleep apnea). I also started going to a massage therapist today, and while I don’t know how much she can help, I’m well aware of how little doctors have done (it’s either drugs or surgery with them), so it seems worth a try even if insurance won’t cover it. She talked to me about my posture (which I already try mightily to control), suggested that I ice my back frequently, use a foam roller for back stretches, do an exercise that she showed me, and have Peggy massage me both with ice and with a car-wax buffer (being massaged with a buffer actually sounds damn good, although it weirded Peggy out when I told her). That massage hurt like hell, but Sylvia comes highly recommended, and I told her to do whatever she thought would help.

I went back to pruning the apple tree today (it being the tree I was pruning when I broke my back). I can’t say that it wasn’t scary going back up a ladder, plus I did it while Peggy was at work, which meant that if I fell again, I would be alone again. Still, today was as good as it gets for tree pruning; I don’t want to wait until the buds appear; and I don’t want to feel that I need a nursemaid to do work that I’ve always done alone. Besides, work gives me meaning.

Bridgeport, Alabama, 1898

Tommy Lee married Kathryn on February 8,1948, and the two of them moved from their “cute little bungalow” in Jackson, Mississippi, to an unpainted shack without electricity or running water at Route 4, Bogue Chitto. Tommy’s parents lived in that shack, his 72-year-old mother, Fannie, going blind and his 76-year-old father, Tom, becoming senile. The plan was for Kathryn to take care of  “the old folks while running a little country store that Tommy built in the front yard, and for him to continue working 55-hour weeks as a carpenter.

On March 1, 1949, Dr. Bob Massengill delivered their first-born at daybreak while a light snow fell. He remained my doctor until he died of a heart-attack at an Ole Miss game some eighteen years later. He stands out as being one of the few people I grew up among who had more than a high school education if that (my father dropped out in the 8th grade). Doctors were more approachable then, and my mother respected Dr. Bob in a way that she didn’t respect other men, so maybe that’s another reason I remember him.

Tommy’s younger sister, Annie Bel, lived within sight of our house, but she disliked Tommy and he prided himself upon his indifference to her, so her six children—who were the only kids I had to play with—disliked me. As alienation went, my mother did no better than I—with the area women, anyway—partly because she assumed that the short-pants she had worn in Jackson would be appropriate in Bogue Chitto. Since the neighboring women wore longish dresses, sometimes bonnets, and regarded skin as sin, it was a strange assumption that led to her being called “Tommy’s City Girl.” She always was exceptionally naive, which seems strange given that she was born to an unmarried fourteen rebel who moved her from pillow-to-post while working as a prostitute, a madam, a fortune teller, and a thief.

Kathryn had been married before to a man named Dustin who missed the birth of their second child because he was fifty miles distant in the bed of another woman. He died not long afterwards leaving Kathryn broke and with two children during the latter years of the Great Depression. She couldn’t support the children, so the boy went to live with Dustin’s sister in Texas and the girl with his brother in Mississippi while Kathryn strove for better times through her job at Sears. My father was supposed to insure those better times, but the caretakers of Kathryn’s children opposed the marriage because they considered Tommy scary if not insane. I don’t know the details of their complaints, so I can only provide a few possibilities, namely that he was bisexual, paranoid, morbidly shy, given to berating God loudly and with frightening profanity, prone to frequent bouts of irrational rage so intense as to threaten violence (which sometimes occurred before I was born), ran bootleg during the ‘30s, was married at least four times, and wore women’s clothes under his carpenter’s overalls. Given all this, the marriage looked like an act of desperation on my mother’s part, which seems likely given that she was a woman of 35 with little self-respect, two children, and no obvious affection for her husband.

When her children’s caretakers saw the shack that their niece and nephew were to live in, it was the final straw. The younger child, Jim Billy, was spirited away to Port Arthur, Texas, where he grew up, and his sister, Anne, was instructed by her aunt to say that she wanted to stay where she was. I’ve heard that a custody battle followed, and that the court agreed that the children were better off without Tommy in their lives, but I have no particulars. I never had a relationship with Jim Billy because he never wanted one. I did enjoy occasional visits with Anne, but the last one was in 1993 when I visited her at her home in Florida. We’ve since corresponded, but even that ended today when she wrote to say that I would not hear from her again. For decades, we had been bound primarily by our differences over religion, with her being a liberal Christian and me an atheist. Over those years, I perceived her as becoming more and more attacking. She consistently denied this, and I refused ever more vociferously to accept her denial, so it seems that she had had enough. She was the last blood relation with whom I had a connection. 

Carol Gay was born in 1954, and the five years between us constituted too big of an age difference for us to be playmates. Looking back, I wish I had found it in me to be her protector, which is my image of what a good brother should be, but it never occurred to me at the time. I just saw her as a shrill, sobbing, screaming, door-slamming, out-of-control hellion who left my shins black-and-blue with kicks that my mother expected me to ignore while she did her best to “get some food down the poor little thing.” Indeed, Gay looked like an anorexic long before most people had ever heard the word. Think Death Camp inmate, and that’s what Gay looked like except that Gay had hair—or at least she used to; I wouldn’t know anymore. I didn’t hate her, but I felt little affection for her either. The feeling persists, for we have not spoken in twenty years, and I have no thought that we ever will speak. The final blow to our relationship was caused by her disappointment with our father’s will, and the only way she will feel better about it is if I share the inheritance, the problem being that I had rather see the money burned than for a penny of it to go to her.

My Grandpa died in Whitfield State Mental Hospital when I was four, and I have but two memories of him. One was when he and Dad accompanied me as I searched the weeds and outhouses for my Easter Basket (Easter being a major event in my childhood), and another when he scolded me for eating chicken feed alongside the chickens. The sunshine of my life was my Granny, and I was the sunshine of hers, but I wish she hadn’t made a point of telling people that she loved me more than she had ever loved anyone, including her children and her other grandchildren, because it made my situation with my aunt and cousins more difficult. Aside from Peggy, I love Granny above anyone, although she died when I was twelve. I didn’t realize she was ¾ American Indian until I grew up because no one told me, and because, as a child, I didn’t think to connect her features with her ancestry. In the Bridgeport, Alabama, photo from 1898 (note the beehives in the left of the picture), she is standing next to my future grandfather, Thomas, who is holding their first child, Pat. His parents, James and Caroline, are seated. People sometimes comment on how unfriendly Caroline looks, but I just want to crawl onto her white apron because all I see in her face is sweetness. She died unexpectedly in 1908, three days after her husband’s death and 41 years before my birth. I grieve that I never knew her.

My Grandpa and Great Grandpa were Church of Christ preachers, and I have long wondered how they would feel about my atheism. If they did what Church of Christ people are supposed to do, they would hate and shun me, yet if they were open enough to meet me at a heart level, they would understand that I live by the best light I can muster based upon decades of diligent thought and study. Still, I worry about this. Just leaving the Church of Christ was enough to cause some people to turn against me, becoming an atheist led still more to drop away. As to true intimacy, Peggy has been the one constant in my life, and I trust that, as she is, so would my Granny and Great Grandma have been. If only they might still exist, and I might someday meet them.

You need it the most when you have it the least

I go to my neurologist and say that my back still hurts like hell 73-days after I crushed my first lumbar vertebra, and I ask him what I should do. He proposes a kind of operation called a kyphoplasty in which a balloon is stuffed inside the vertebra, inflated with air, and filled with quick-hardening cement. Now, I know that the AAOS (American Association of Orthopedic Surgeons) doesn’t much like kyphoplasty, but I also know it’s commonly done because there aren’t a lot of great alternatives, and because it’s a low-risk moneymaker that doesn’t require a high degree of doctorly skill and intelligence. Still, it is surgery, and no surgery is so minor but what it can’t mess you up.

So, I ask him if maybe he could he hold off on the surgery for awhile and send me to physical therapy first, and he says that, yeah, that might work, and he gives me a PT referral. I then ask him whether an AAOS-recommended drug named Calcitonin might help, and he says it might, and he gives me a prescription. He no doubt realizes by now that I’ve been reading about my problem on the Internet, and a lot of doctors hate it when that happens because it’s ever so much easier and more profitable when sick people keep their mouths shut and do as they’re told.

Next, I ask him what he thinks of radio frequency ablation as a less invasive alternative to kyphoplasty, that is if it turns out that PT and Calcitonin aren’t enough to get me back on track, and as soon as I say this, he groans and puts his head in his hands. I’ve never seen a doctor do that before, so I just sit there looking at him and wondering what his next trick will be. Not a very good one as it turns out, because all he does is to change the subject. I don’t remember what he changed it to, because I’m thinking, wait just a damn minute here, there’s a question on the floor, so I interrupt him as gently as I can (doctors tend to be childish and fragile) by saying, “From your reaction, I assume you consider RFA too absurd to discuss, but before I consent to surgery, I very much want to investigate less invasive options, and from what little I know of RFA, it sounds promising, plus it’s a whole lot less scary than having my vertebra stuffed with a cement that might escape and wreak havoc with my spinal cord and surrounding vertebra.” He says, “I have two colleagues who perform the procedure, and I will refer you to one of them if you would like.” You will note that, if I hadnt made some suggestions, only one treatment would have been proposed, and it wouldnt have been the preferred one. He showed no empathy, volunteered little information, and became impatient with questions. In other words, he behaved like a typical doctor except for the groaning and head-holding part, idiosyncrasies that brought his grade for the visit down to a D+.

If you’re new to being a patient, you need to know that you can get better treatment if you take an active role in researching every aspect of your problem. Here’s why:
1) You will better understand what your doctor is talking about, and you will know what questions to ask in response.
2) Your doctor will take you more seriously even if he resents your unwillingness to treat him like a demigod.
3) Doctors sometimes fall behind on the latest research, so it's possible that they might learn from you.
4) Doctors like to stay within the confines of a limited number of well-beaten paths that they can walk without thinking, and this means that they tend to employ a surprisingly limited number of drugs, tests, and procedures.
5) Doctors tend to know little about treatments that fall outside their area of expertise.
6) You’ll be less likely to submit to a dangerous and expensive procedure that offers little if any promise of helping you.
7) If you run into an authoritarian doctor who takes the attitude that, “I AM A DOCTOR. How DARE you learn on your own; how DARE you question anything I say; and how DARE you suggest other treatment possibilities,” it will enable you to find a good doctor sooner.
8) You will feel strong, smart, and in control.
9) You will gain interesting knowledge that you can use to your own benefit and the benefit of others.

On the downside, it’s emotionally difficult to assume what verges on an adversarial relationship with your doctor, but, sad to say, the alternative is oftentimes to allow your doctor to run all over you by treating you like you’re worthless and stupid. Obviously, not all doctors are callous, arrogant, unsupportive assholes, but based upon my experiences with scores—at least—of them, I can but observe that most are. Yet, you need them, so the trick is to find a way to relate to them that is as beneficial to you as possible. I’ve learned that this means taking an active role in your own care even if they don’t like it, and being willing to find another doctor if they dislike it enough that it’s impossible to work with them. If this should happen, it won’t be your fault. You will simply be doing what your doctor gets rich from charging hurting people for, which is to see that they get the care they need.

A relative named Patsy broke her back at the same time I broke mine, only her break seems to have left her in considerably more pain. Her doctor prescribed Vicodin, a weak painkiller, that would have been adequate even if it had worked, which it didn’t due to the fact that it made her too sick to take it. So, what does her doctor do when she tells him she can’t take her medicine? Nothing. Despite the fact that he had myriad painkillers to choose from, he left her in pain for no fucking reason. If he had been my doctor, I could have proposed a half-dozen alternatives off the top of my head, but because Patsy knows nothing about pain control, or medicine in general, or how doctors tend to behave, she went home assuming that this man whom she had gone to for help when she was frightened and in pain, had done his best to help her and was out of options. This is what happens to people who are ignorant or passive, and Patsy was both. I can find a lot of reasons to mistrust and despise doctors and very few to regard them positively. So, yet again, I will tell you that you have to look out for yourself. Ironically, you need strength the most when you have it the least.