I just returned from a trip back east. For most of the four days, we enjoyed gorgeous, sunny weather, but one afternoon we had a storm.
This thunderstorm rolled rapidly across the bright blue sky, transforming the scattered, puffy, white clouds into a bank of dark gray in a few moments. The sudden decrease in atmospheric pressure (that’s the thing measured by barometers) that accompanied the storm sparked a sizable bout of phantom pain in my missing leg.
I wasn’t actually surprised; I have told a couple of pain doctors and other amputees that my phantom pain gets worse when it’s storming, and they all agreed that this weird phenomena is quite common among amputees. To my knowledge, no scientific evidence supports our claim, but anecdotal evidence abounds.
And during this thunderstorm, the anecdotal evidence was plentiful — that is, my missing limb hurt a lot. My traveling companion, one of my aunts, was compassionate and eager to help. Unfortunately, all I could do was wait it out, so I tried to distract myself by reading, answering some email, and then talking with my aunt.
A couple of hours later, my aunt asked, “How is your phantom pain? Are you feeling better?”
“No,” I stated, shrugging. “It’s still pretty bad.”
My aunt looked surprised by my response, and it occurred to me that I wasn’t acting like I was in pain. I mean, I wasn’t giving off any cues that the pain continued to be a problem.
I’m not a martyr; I often let people know I am in pain by gasping when it spikes or groaning or even crying if it gets bad enough. On the other hand, I’m also pretty used to being in pain, and I don’t always bother to express the pain on my face or body if it isn’t too bad, particularly if I’m teaching or in a meeting or giving a presentation at a conference or really enjoying a conversation with a friend. It’s not that I don’t feel the pain in these instances; it is that I don’t need to perform feeling the pain.
I think that the “rate your pain on a scale of 1 to 10” is a fairly limited approach to pain assessment, but it’s all I’ve got. On a scale where 1 is a paper cut and 10 is when (true story) the recovery room nurse shuts off your morphine drip after major orthopedic surgery because your breathing is so shallow they are afraid you will stop breathing entirely, then this phantom pain caused by the storm ranged from about a 4 to a 5. It was definitely noticeable, couldn’t nap through it, exhausting after awhile but not incapacitating, like bad menstrual cramps or walking home on a definitely-twisted-but-not-really-sprained ankle.
So the pain I felt was considerable, but at the same time, it did not necessitate an outward performance. Not that my aunt would doubt me, but it was reasonable to assume that the pain had passed since I was sitting there without grimacing or gasping or yanking my prosthesis off to massage my leglet. A dear friend who visited earlier this summer told me that she had not realized that I was still dealing with phantom pain all these years later, until she read one of my earlier posts.
It occurred to me that involuntary expressions of pain are not my choice; when the pain gets bad enough, my body performs it whether I want to or not. And when pain first begins anew, I often frown and sigh or gasp, even if the severity remains on the lower half of the scale, signaling pain’s reappearance. But in the middle of the scale, I have some discretion, some choice over the performance.
My recognition of choice in the matter triggered my OCD-ish tendencies. Am I being dishonest if I hide the pain? Am I asking for pity if I give cues that aren’t completely necessary or involuntary? Am I just feeling sorry for myself if I let others know I am in pain? Is it possible that it helps people to be patient with me if I give them occasional reminders that I am often in pain? If I let people know I am in pain too often, will that make them not want to be around me–will they think I’m negative, whiny, needy? Will they think I’m strong or just lousy at managing a chronic pain condition?
I never pretend to be pain, but how to perform the degree of pain I experience, and whether to perform it at all, are often (but not always) a choice. I find that both comforting and a burden.