I suppose I did morph into this stage of grieving although I can’t really place my finger on specifics. We always come up with a myriad of “if only’s” regardless of any situation. “If only I hadn’t been working so much”; “If only I had paid closer attention”; “If only I had made more money so we could afford regular doctor’s visits”. You name it, I am sure everyone has bargained away thoughts and feelings…or accountability and responsibility…at some point in their lives. I suppose my main bargaining excuse was about getting quicker medical attention, but even that was out of my control.
My husband had no pain or inflammation, seepage, or anything prior to the culminating, searing, pain in his head which spurred us to the doctor’s. Yes, he had had issues with his right ear before, but there had always been some kind of indication something was wrong. Not this time. He just woke up one morning with this debilitating pain in his head that wouldn’t go away with Tylenol or Ibuprofen, sleep, coffee, or anything else. He couldn’t lay down and he couldn’t put pressure on his head. For a solid week, he slept sitting up in his recliner chair, and I didn’t push him to go to the doctor’s. I was too busy. I was working. He was working. Kids were in school. It was just a headache, right?
After about a week of the pain, I finally made the decision to get him checked out so it was off to RediMed (the first course of action to be taken according to his (then) insurance coverage). A simple check in his ear and the diagnosis was an inner ear infection. He was given a wide-spectrum antibiotic and sent home with the follow up instructions to return if the pain doesn’t wane within 48 hours. The pain did not decrease. As a matter of fact, it increased…AND…a weird looking contraption came out of his ear as we were sitting in our living room one night. It almost looked like the stem of a nose ring or some other piercing…or like the “y” shape of Fallopian tubes. I had never seen anything like that before in my life so…72 hours later, we were sitting in the ER (having been sent there by RediMed because they felt they were no longer able to help). Pain meds brought him some much needed relief and sleep. Then came the cat scan and they wheeled him off to radiology. He returned and promptly fell asleep again and I sat there, in his room, for hours. Not just one or two hours…but FOUR HOURS…waiting for the results of his scan. (It turns out that the hardware that had fallen out of his ear was a tube that had been put in almost 10 years before. Really?? Those things fall out??) And in the pit of my stomach, I just knew…something wasn’t right. It just doesn’t take that long to read a scan.
The doctor finally came back into the room, and with no explanation or diagnosis or suggestions, he simply says, “You have an appointment tomorrow morning at 9 a.m. with an ENT specialist. Don’t miss it”. That was all. No suggested follow up directions. No “call if you aren’t feeling better in the next couple of days”. Just…”go to this appointment no matter what”.
And so we went.
My husband, bless his heart, has the tact of a brick (he’s British) and doesn’t like to mince words or pussy-foot around. He sits down in the chair and tells the specialist, Dr. Schreck, to “just tell it to me straight”. Dr. Schreck’s six word response literally stopped my breath…”Either we operate, or you die”.
He then went on to explain that all of this was caused by an inner ear infection that we had NO idea my husband even had. He could have had it for months, or even a year or two, and we had no clue. There had been no pain. Some wax build up, but who doesn’t get that every now and again? The infection had made it’s way into the mastoid bone behind his right ear and had been eating away at the bone so much that all that was left was a very thin layer (about the thickness of a fingernail…and not a strong fingernail either) of honeycombed bone separating this infection and the cranial cavity. As it was put to us, had that infection made it’s way into the cranial cavity, it would have then been diagnosed as meningitis and, once it penetrated the brain area, there would have been no stopping it. It would have killed him. And in not so little time.
And the guilt set in.
I suppose bargaining is another way of blaming or feeling guilty for what we could or couldn’t have done. Had I made him go for his annual check-ups, would they have caught it sooner? If I had paid closer attention, would I have noticed the seepage on his pillow in the morning? If I had been more aware, would I have noticed the odor of infection coming from his ear? If, if, if…
Bargaining. “The normal reaction to feelings of helplessness and vulnerability is often a need to regain control–
- If only we had sought medical attention sooner…
- If only we got a second opinion from another doctor…
- If only we had tried to be a better person toward them…
Secretly, we may make a deal with God or our higher power in an attempt to postpone the inevitable. This is a weaker line of defense to protect us from the painful reality.
Two weeks later, I sat in the ENT outpatient hospital as my husband was wheeled back into the surgery room where they cut behind his ear; from the top to the bottom, and folded his ear forward and they proceeded to grind down the mastoid bone, with all the infection living in the honeycomb pockets, in an attempt to get all the infection out. In order to relieve the pressure on his brain, they had to drill a hole into his skull so now he, literally, has another hole in his head. It was this pressure on the brain that has caused the TBI and left my husband in the forever state he is in now. The damage done to the frontal lobe has left him with memory and processing issues which can never heal. He lost all hearing in his right ear, and he has permanent vertigo and balance disability. His brain has to work much harder than ours to even complete the simplest of tasks. Even something as simple as walking from the bedroom to the kitchen to make a pot of coffee can leave him exhausted and sweaty. Sounds crazy, doesn’t it? I would have thought so, too, if I hadn’t seen it for myself.
I no longer wait to see what will happen. If he is experiencing pain or needs a follow up (well, once we have insurance again…he is currently awaiting the outcome of his medicaid application so he can start getting treated again), he goes to whatever doctor can take care of the issue. I don’t want anymore “what if’s”. I don’t want to bargain or question or make deals anymore. I will not leave any stone unturned. His life depends on my vigilance and our combined fortitude. There are no more bargains to be made. Every issue is a major issue and each answer will be sought out come hell or high water.