Written by Lileya
Sunday, 23 August 2009 at 18:08
The rarer forms of migraines and the rarer symptoms are often neglected and goes unmentioned just because it’s rare and there seems to be this whole concept around ‘rare’ being so unlikely that it can just be done away with. Aphasia (a partial or complete loss of the ability to articulate or comprehend written or spoken language) is a rare symptom mainly associated with the aura-phase of a basilar type migraine, but may also be experienced as a symptom of either the aura or headache phase of any type. It’s temporary and completely reversable, but I have headaches on most days. During the aura and headache phase, language becomes difficult and it doesn’t feel so temporary.
Difficulty understanding language: I occasionally have difficulty understanding either spoken or written language. Having APD (Auditory Processing Disorder), I’m rather familiar with the weirdest things coming out of people’s mouths, but my love for books makes it very difficult to look at a text and not be able to read it. I know the effect is temporary, but being able to read some days but not every day, is a difficult adjustment to make, even though I can’t tolerate enough light in a room anyway to be able to read with a headache. Things that help me to understand spoken language better:
- Start topic specific conversations by stating the obvious – start with a summary then follow with details.
- Use shorter sentences, slow down and be patient.
- I don’t mind talking about various topics simultaneously, but be clear about switching topics by either stating which topic you’re talking about when you switch or retaining the same order.
- Type particulars out, such as a particular name and use visual clips. I adore links thrown into verbal conversations to either text, screenshots or video.
- Accompany names with descriptions. I may not recall a film, book or game by its title, but give me the tagline or a clip or a screenshot and it all comes flooding back.
- Minimize background noise.
- If I say I don’t understand, rephrase rather than repeat.
- Summarize and rephrase when summarizing. I sometimes think I understand but misheard something or missed something and unless the gist of the conversation is repeated at some point, I don’t necessarily realize that I’m not quite getting what you’re saying.
Inability to understand the emotional content of written or spoken language (Receptive dysprosody): I rely heavily on the emotional content of language for understanding as a result of APD. I can’t always process words, but I can infer meaning and formulate an appropriate response based on the emotive tone. If the emotional tone is suddenly absent, I’m lost. Communication that happens via the internet means language is all there is and it’s challenging to maintain meaningful conversations and relationships when words are often incomprehensible and emotion is entirely absent. Things that help me:
- Emotes. The more the better. However, don’t expect me to get sarcasm, humour, irony or inferred meaning. Be literal with the use of emotes and try to actually type what you mean to say.
- Tell me how you feel if you want me to know, don’t assume that I’ll know otherwise.
- Be explicit and blunt. Yell, swear, type in capitals etc. I’m much happier being yelled at than I am worrying about whether someone is angry with me or not.
Difficulty with speech: I often have issues related to talking. Some headache days, talking is extremely difficult and limited to single words, very short sentences or even just made-up words. We’ve created our own pretty concise vocabulary of made-up words, gestures and inflection and so the frustration of not being able to communicate is not as prevalent as it used to be. That said, I have a tendency to grab whichever word I can find and speaking more languages than Chris does, the word isn’t always part of the English vocabulary. I find talking on most days pretty difficult and rather frustrating. Practised phrases are easiest and it makes using recognition software easier to use. New subjects are the most difficult. Some days pronunciation is difficult, other days speech are slurred a little or a lot. Sentences aren’t always completed and I may have issues either naming things or recalling particular words. The jumbled up days are hardest, when speech is there but unreliable and incomplete. When it’s absent, there’s just a vast emptiness in the complete chaos headaches create in my head and it’s almost comforting. I stop talking, sometimes for days at a time and it’s one less thing to worry about. Things that help me:
- Contrary to popular guidelines that advocate space and independence, I’d much rather focus on understanding than the process of communicating. If I’m struggling, don’t just sit there and wait patiently, help. Complete my sentences for me, suggest the word I may be looking for and if you know me well enough to know what I’m about to try and say, feel free to talk for me.
- Don’t correct unnecessarily. I’m aware that I got the grammar wrong, and sometimes I may even deliberately do so. I’m aware that my pronunciation is off, that I just used the wrong word or phrase or said yes when I meant to say no. If I’m talking to you and you get what I meant to say, then leave it be. If you don’t, by all means, ask for clarification.
- Don’t ask me to verbally answer long or complicated questions, I’ll just say no. If I can talk, I will without being prompted. Accept that when I say “I know” or “I get it” that I do even though I can’t necessarily explain it back.
- I don’t always say what I mean. Don’t assume I’m not paying attention just because I said something was funny when I meant to say sad or because I come across as confused or seem to get the details wrong. I usually know what I’m talking about, I just don’t have the right words at hand to say what I really mean to say.
- Shape conversation when I have issues so that you can do the talking and I can respond in a monosyllabic fashion.
Difficulty with writing: Writing is much easier than talking, but still problematic at times. Common issues that crop up are words left out, words used inappropriately, grammatical errors and sometimes formulating longer sentences are just not viable. Emotes and fixed expressions make it easier. On most days I can get away with typing as long as I keep it short and to the point and concentrate very hard on what is being said and how to respond. Talking to more than one person isn’t an option, it just gets too complicated, but talking to a single person for a little while on a well-known topic is doable. Things that help me:
- Replies take longer. If I can type but not talk very well, I can’t use speech recognition software and typing is often a slow process. When language is difficult, I may also need to think more before I type and so replies may be rather slow even when they’re short.
- Read over errors in grammar, syntax and vocabulary if possible. As when talking, I know I’m making mistakes, but can’t always help it. Pointing it out doesn’t help me. Only refer to errors if it affects your understanding of what I’m saying. By all means, ask for clarification when needed.
- Don’t be offended if I don’t talk. Mostly I can only do one conversation at a time and so if I’m talking to someone else already, I may say just that and not talk to you until I’m done talking to them. Sometimes I’m happy to listen/read, but typing is difficult and so the conversation will rest entirely on your shoulders.
Communication is an integral part of life. Over the years I’ve become quite skilled in both the art of subterfuge and avoidance. I’m not a very social or talkative person. I have few friends and mostly keep to myself. Finding communication a hurdle hasn’t helped. It’s easier to talk about and explain things like dislocating joints, breathing problems or even headaches. Trying to explain transient yet persistent and variable problems with language is very difficult. Today you can read and tomorrow you can’t? Now you can type but five minutes later you can’t? Yesterday you spent hours listening to me talk on vent and today you don’t understand a word I’m saying? A Chris favourite “You have a degree in psychology and yet you can’t tell that I’m angry with you?”
Yesterday I wanted a neck massage and the request was done mostly by gestures accompanied by something that may have sounded like “neck – hurt – fix – there”. Today I can say “Could you massage the sternocleidomastoid muscle? Particularly at the insertion points, you know, on the lateral surface of the mastoid process and where the aponeurosis insert into the lateral half of the the superior nuchal line of the occipital bone?” Most days, I don’t get it myself. It’s frustrating when words are just there to be taken for granted and then, suddenly, inexplicably, they’re gone or turn chaotic and I sound like the village idiot. Or maybe that’s just the way it makes me feel. Language is important. Some days, I sit in silence and touch the empty white screen waiting for words, unable to acquiesce.