In my leisure I read a lot of Science Fiction, Fantasy, General Fiction, and Young Adult literature. If anyone has read anything dealing with magic, or sorcery, or witchcraft and lore one thing that is a constant is the power of a name. In fact mages, witches, sorcerers guard their true name knowing that someone who knows their name has power over them.
To know someone’s name is to have a power over them. Think about this in regard to your own name. While this may not be true for you I suspect there may be some truth that when someone mispronounces your name you almost immediately, perhaps reflexively correct them even if you follow it up quickly with something like but thats’ alright.
When working in the hospital you run across lots of names, and especially with a growing immigrant population the names can be very different from the usual Anglo-Saxon names that were so prominent as I was growing up. I always felt it was important to try my best to pronounce someone’s name correctly. When I would struggle sometimes people would try to ease my burden by saying something like it’s alright or that’s good enough. Which in my mind was sort of like them discounting the value of their very important identification, their name.
My last name is Jeffus, and it is interesting how difficult that seems to be for people to pronounce. Often though it is because they are trying to insert letters in there to make it be a different name, like Jeffers is one of the most frequent versions. I’ll be honest here, my preference is that it be pronounced correctly, though I will usually accept any bastardization that the person is finally able to say. My first name now is Ryusho after having it legally changed several years ago. That is a difficult name for people to wrap their minds around. I usually give them a hint to ignore the Y since they won’t be able to pronounce it anyway. The difference in sound is subtle and for non-Japanese speakers is exceedingly difficult without practice. Still my internal preference is that it come close.
Perhaps you’re not like that, though as I said most people seem to prefer their name to be pronounced correctly.
What’s this got to do with contemplating disease, you may wonder. Well, it is that when we know the name of something there is a certain feeling that most people get that helps them feel as if they have some ‘power’ over the thing. When I was living in Japan I was nicknamed “nan to iu’n desu ka”, which means roughly what is this called. It was important for my communication survival to know the name of things so I could have some power over my environment, or at least not be completely helpless.
People, in my observation, feel comforted when the doctor gives them a diagnosis and a name for their illness. I used to feel that way too, and I’ll get to why I don’t find it so comforting now.
The name of the disease can mean that well at least I know what I have and that can be comforting. It is also a form of validation, that what ever the symptoms are they are identifiable, known, understood, and have a name. I can now say I have this illness with this particular name. I have a condition of an extremely runny nose that sometimes just flows and flows uncontrollably. The condition has a name rhinitis, and for a brief moment in time when the doctor told me that I felt relieved, it was sort of an ah ha moment.
But then I got to thinking about it and wondered had I been reduced to the single word rhinitis, was I now a small entry in some medical text on page 694, volume 2? Am I not more than that? Does this mean the doctor now quits listening to me because he has filed me away in some medical jargon file cabinet? Sometimes it feels that way.
I have witnessed the relief that can quite visibly flood over a patient’s face when they learn the name of their illness, even when the name is dreadful, there is no cure, and that’s all they have is the name. I understand how that is very comforting on one hand. I also understand and have witnessed and experienced how convenient it is to now dismiss the individual for the disease.
One thing taught to chaplains, and something I had learned working with AIDS patients is that the disease does not define the person, though the person can certainly live a life defined by the illness. You simply don’t walk into a hospital room and say “good afternoon Mr. Pancreatic Cancer”, or “good morning, Ms. COPD.” Yet I have been present in consultations and even had in my own experience a doctor jump quickly from greeting to disease completely skipping the important middle person the patient in the process.
While knowing the name of one’s illness is comforting it can also become a short hand dismissive label. Ah, Mr. Asthma, I know everything there is to know about you, never mind how you are doing, feeling, what your symptoms are I know your illness and I am the master of your treatment, or so it seems sometimes when listening to doctors, or even television commercials.
In each of our lives and even when caring for others with illness try to avoid becoming a label and try to avoid putting labels on others that can minimize their lives.
I spent a great deal of time working in the cardiac ICU and understood much of the medical jargon, treatments, drugs, purpose of treatments and reasons for certain drugs and what they would do. And one of the functions I felt it important to serve was to keep it human and keep it patient related. That is yes all of these symptoms are present and certain treatments and protocols are appropriate and beneath all of that there is a human who is suffering or not and are we communicating with that person or are we communicating with their illness.
Yes I know from years working with geriatric patients many of the illness that beset the elderly. I know many of the common symptoms, the side effects of the medications used, and what it looks like when a patient I ‘non-compliant’. But none of those things are the patient and not every person experiences the same thing and not every thing that appears as non-compliant is indeed non-compliance and not every person wanting pain relief is ‘drug-seeking’.
The patient is a person and the person may be experiencing certain symptoms. And we are the patient. Here’s the critical thing I think in contemplating disease is to remember that you are more than a particular named illness and your symptoms are your own and not those written in a medical text.
Listen to yourself. It is even helpful to record your medical experiences. The mind has a funny way of distorting your perception of reality.
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Some of you may know that I am an avid keeper of a journal or notebook. It’s more than a journal it is everything from shopping list to notes about sunrise to what I bought last week at the grocery store and how much I paid. One thing it does contain is notes about my general health.
Currently I am dealing with a recurrence of a muscle spasm in my buttocks, piriformis. It is extremely painful and walking and sitting and anything short of laying down is very painful. It is both painful and also debilitating and is causing me an increasing amount of stress because I can’t do the things that are important to me and add quality to my life. I’m not taking it lying down though, I’m fighting back.
So, currently it’s been one month now that the pain has been so great I can hardly walk. Sometimes I need a cane to simply stand up. I have found that if I sit on a heating pad and use a TENS unit that I can then walk on flat ground for about 30 minutes and not very far. Since where I live is very hilly I get in my car with the dog and drive over to the large parking lot and field in one of the neighborhood churches and walk on the level ground until it become unbearable. Little by little it is gettin better.
When I get discouraged I sometimes think it has been going on for nearly forever. And that is truly how it can seem. Yet when I look at my journal I can see some progress even amidst the ups and downs, and that it has only been one month. The first time I had this problem I suffered with it for seven months, I survived and got better. So the journal helps me not become despondent.
Keeping a journal is also good medical advice because then you have a record when you talk to your doctor about your health. When you go in to a doctor visit and you have nothing of your own and your recollection is vague or non-specific then it is easy for the doctor to fill-in the blanks with medical text symptoms and thence you became a page in a book of reference.
When you go into the doctor and you can clearly state that 50 out of the last 60 days you have had extreme difficulty doing something and you did these things and took this prescribed medicine and the results were this. All of this information at your hand keeps you real and a person and not some dismissed named illness. You maintain your humanity in the face of simplistic names. You remain the patient and not the disease.
