I have been in the hospital, getting video EEG monitoring to check for seizure activity. I sprained my ankle on Wednesday, actually as I was leaving my house to come to the hospital.
For some people, being in the hospital is a good time to rest and be taken care of. For me, it often means I do more educating about blindness than I sometimes do in the course of my daily life. One of the things engraved on the limited space on my Medic Alert bracelet is “blind, detached retinas.” There are two reasons for this. For one thing, I need for people to know that retinal detachment is an existing problem if someone is looking at me for signs of injury. It saves an unnecessary rush to an eye doctor.
But the primary reason I listed blindness on my bracelet was so that hospital staff would understand that I need assistance and accommodations they would not ordinarily give. If I don’t reach out for something being handed to me, it may be because I didn’t realize there was any reason to take it. A cue like, “I’m giving you back your insurance cards,” gives me lots of information in that case, and I can request more if I want it.
I sometimes have to spend time explaining to nurses what blindness does and does not mean in terms of normal functioning. Depending on their own exposure to people who are blind, especially people who have been blind throughout their lives, some people may perceive that it is normal for me to need objects identified, including the ones I brought with me. It is often the case that nurses and staff do not expect me to be able to navigate the room where I am staying without a cane or my dog guide. I don’t expect people to learn all the workings of my cuing system–it is something I have developed over a lifetime, something that is intuitive to me. I do need for people to recognize that I have one and that it normally works fairly well. If I report something that is abnormal, it must be differentiated from a blindness problem. If I am disoriented, it is not necessarily because I didn’t understand the space in the first place. Under normal circumstances, I file spatial information quickly and am able to navigate well both inside and out. I go into unfamiliar areas and use a rather massive set of cues to determine what is going on around me and where I have come. When I need another cue, or when I discover that my information is not adding up, I ask more questions. So being unable to process this set of cues and determine that I am traveling in the same direction that my body thinks I am traveling in is very frightening. Likewise, it is disturbing if I pick up an object that should be part of my normal catalog of objects, and I don’t recognize it. It does not take long for me to develop cuing mechanisms for objects.., and I don’t need to do this for every single object I encounter every day. A coffee mug, for example, is readily identifiable even though mugs come in various shapes and sizes. The drink inside is another story–it could be hot tea instead of coffee, but even those possibilities have limits. If I order coffee, I don’t expect to be given a different drink. Sometimes my cuing system works better than sight.
Anyone who has ever gotten the wrong soft drink at a restaurant will understand that sight is not always a foolproof cuing system…
As part of this testing, I press a button to alert to time indexes when I am symptomatic. This morning, I sat holding the cup of coffee from my breakfast tray and wondering why there was no straw and why I was not getting milk. There were numerous cues allowing me to know the difference: coffee is hot and milk is cold, coffee is in a mug and milk in a carton, etc. I pressed my button to record the event and called the nurse to give her some description. This prompted a discussion of my cuing system as the nurse tried to reacquaint me with the location of items on my tray.
This is a necessary but distracting part of my hospital experience. It has been a great relief to have a few nurses at times who are quick-thinking and have caught on to observing my “normal”‘ vs. not so ok episodes, especially regarding my balance and navigation during monitored events.
This same general concept applies in its own ways to the experiences of people with other disabilities… In order to define problematic symptoms, it is necessary to strip away whatever perceptions the medical professional may have about imagined limitations. Without doing so, important things may be overlooked or diagnosed incorrectly.
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