Though speaking has become difficult and exhausting it’s a little difficult for me to give up. Large portions of our brains are dedicated to it. It comes naturally. Almost an entire lifetime spent having words that tumble out. Some of them are stitched together in a way that conveys knowledge, some are for instruction, some leap out before they are ready, causing just a wee bit of trouble, but perhaps the best purpose of this mental activity is for the attainment, and enjoyment of social bonds. Some animals grow great big plumages of tail feathers, others, great big antlers, we devote much energy to impressing others with our humor and wit. Besides, it’s just plain fun.
The most enjoyable conversations oftentimes are less about the information nuggets and more about the back and forth flow of people pushing the cart along a path with many possible branches. Backtracking, changes of direction that are too abrupt or pauses brought on by losing track of where the cart is, are things that can spill the apples. It’s best to leave each contribution open ended.
Of the various milestones to cross, loss of speech is a big one. Joking banter, repurposing the memories of life for present joy and wisdom, hearing about other peoples antics, and most of all, the participation in the sport of conversation, are the activities where someone with other handicaps can feel completely normal.
I now use my eye gaze computer to convey my thoughts. This is an absolutely wonderful thing, when compared to nothing, but nothing, in regards to communication, is a pretty low bar. I can type at the rate of about one character every one or two seconds, depending on how tired my eyes are. All voluntary muscles are fair game with this disease and control of my eyes is starting to diminish.
Some of the things that I have been noticing about this method of communication:
It tends to come across as a novelty. It catches people off guard.
In any kind of group conversation, my writing is incredibly slow. Any input that I add ends up being where the conversation was a couple of minutes ago, awkwardly inserted into a completely different environment. Often, the insertion is enough out of context that people become silent, wondering what the pop up string of words is in relation to. This can cause a secondary problem in that often, people will be polite and change the subject of the conversation back to where it was when I started writing. As much as I appreciate people’s thoughtfulness, I sometimes hate to spill so many apples out the conversation cart, awkwardly jerking it this way and that. I am often pressing the “speak” button just as someone is starting something interesting. Fairly often, I write out a portion of some thought and realize that it’s no longer helpful, and hit delete.
Another challenge is that I’m not looking at the person who I am talking to. I’m somewhat distracted, staring at a computer, trying to type and listen at the same time.
This technology does an amazing job when things are going well but once mistakes start creeping in, for a variety of reasons, the speed can plummet exponentially, as mistakes are hard to fix. This is also a time when the predictive aids can start to conspire against you. When get ‘fat eyeballs’ (I just made that up) the predictive aids can bury you in mistakes fairly quickly.
A not so trivial challenge is that of intimacy. We keep struggling to keep a relationship that is as normal and intimate as possible. It’s a difficult and completely unwanted transition to go from husband and wife to patient and nurse. Much delayed packets of information coming out of a computer is not at all conducive to that to which we have been struggling to keep.
With this disease, I find that it’s a bit of a handicap not to be a famous astrophysicist with a type of radiation named after you. Someone without this annoying handicap tends to sport a cadray of people who buzz around asking “what did he say, what did he say?” I, on the other hand, am more inclined to elicit “oh, I can’t believe he said that.”
I never am quite sure what, or how the new challenges will be until I get there. The longer than average life span that I’ve enjoyed with ALS has allowed me to have just a little more time to put certain things in the past and develop mental strategies to make better use of what I have. Just to be clear, there is no utopia here. There is no problem that will remain solved, just a reasonable attempt, perhaps mission, to ‘keep on getting on.’ This is probably one of the most unique trajectories of ALS, absolutely no solution is permanent.