An updated account of how things have played out

When I last updated, the diagnostic neurologist had referred me back to the internist for cancer screening. The internist ordered a vertebral biopsy, said it could take a week to get it done, and told me to expect a phone call from whomever he referred me to. Unknown to me, he faxed referrals to three specialists (he apparently had doubts about which one was appropriate). When I received no call, I called the internist’s office repeatedly—or rather the internist’s office answer machine—to ask what was happening. I finally learned that two of the specialists had declared the procedure too risky (I have no idea why despite my best efforts to find out) and that the third specialist was insisting upon an open incision instead of a needle biopsy. I got the name of the third specialist and called her office. I was told that no referral had been received, so I commenced more calls to internist’s office. His referral clerk finally called back, and insisted that the referral was faxed a week ago. And so it goes, and so I wait… A procedure that was supposed to take one week won’t be done in two.

My dealings with doctors and their employees have led me to be more surprised when things go well than when they get fouled up, so I am far from childlike naiveté. Even so, having to struggle continually just to get people to do what they said would do, what they were hired to do, is awfully wearying. Clearly, if I had not badgered the internist’s office, I would not have heard from anyone. I have no doubt but what sick people die because they get lost in the shuffle and lack the strength to fight their way to the top. My problem is that the longer I have to put up with all this bullshit, the more obnoxious I am tempted to become. I can imagine calling twelve times a day to rub myself in their faces for being such fuckups. I don’t do this only because I know it would hurt rather than help.

My father had a spinal tumor removed in 1955. The surgeon told him that there was a greater chance of death than of recovery, but Dad said he didn’t really care as long as he escaped the pain. For months he had only been able to sleep standing in a corner propped on crutches. I always thought of my father as emotionally weak. Now I am in awe that he was able to keep from blowing his head off. Doctors then were even more reluctant to provide adequate pain relief than doctors today.

I took three different pills last night to knock myself out, yet I awakened five hours later in pain. I took a Vicodin when I got up, and wish I had something stronger, although I hate taking any narcotic because of the side effects and because the more I anesthetize myself now, the harder it will be to anesthetize myself after I start having surgeries. I had to get the Vicodin from the diagnostic neurologist—my surgical orthopedist just told me to go home and apply ice. I wish for him that he will someday feel the pain that I am experiencing.

It is hard for me to accept that I am but one patient among scores to my many doctors, and that most of them really and truly don’t give a rip. If they see me at all, it is only as whatever body part they specialize in. I can call their offices all I please, but I rarely get a real person, and when I do finally hear back, the caller is often someone who knows less than I did before I called. Then when I go in for an appointment, the typical doctor is in a hurry to get rid of me. I don’t take this personally. That’s the problem; the system is impersonal. No one means to behave badly; they’re just not rewarded for behaving well. The more patients, the more money and the more praise from their employers. The average doctor visit lasts six minutes.

Even so, I can’t say that all this has been a totally negative experience because it has given me a greater appreciation of my strength. Even with Lexapro, there are days when I am obsessed with suicide, and find a strange comfort in fantasizing how I would accomplish it (my latest plan is to make a paste of my medications and wash it down with cognac). Yet I know I won’t harm myself, at least not until I’m pronounced hopeless, and maybe not then. My reasoning used to be that it would hurt Peggy too much. That is still true, but I have also learned that good can—and already has—come from my suffering, and that it would be a mistake to block that good.

I used to be too willing to blame other people for their pain, to think that all they needed to do was to exercise, or think positively, or clean up their diet, or stop taking so many prescription drugs. Now, I see that it’s not the Army Rangers who are the toughest of the tough but the people whose lives might appear to be a complete mess. City buses invariably contain old people with walkers and bent up people in wheelchairs. With all my pain and disability, I look at them, and I don’t know how they do it. Their bodies are shriveled, yet their spirits keep moving. I can still walk, and see, and hear, and use my arms for something other than pushing a knob on a motorized wheelchair. No one has to shave me or change my underwear or cook my food. What I can no longer do is a loss, but what I can do is a miracle. There are times when several minutes pass during which I don’t think about how much I hurt, and I am more grateful for those minutes than I used to be for my entire life. There truly can be redemption in suffering, not that I would wish for another moment of it if I had the power to choose.