2.2. Communication

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Chapter 2.2.

Communication

• Beginnings of Communication
• Alphabet Transparency
• Basic Computer-aided Communication
• Refined Computer-aided Communication

Eh, the story of my establishing communication in LIS’s (un)conditions is quite long and complex (as in most LIS patients, after all—even similar to them in some critical details).

Naturally, communication requires at least two parties (in our case, two real people). But that is not enough: these parties (persons) must be interested in establishing communication. They should firmly desire it and somehow show the intention to initiate it. (And subsequently maintain it, of course.) Without such desire, these people can be outstanding babblers—communication is missing! But if this intention is expressed on both sides, the situation will undoubtedly develop favorably. (Of course, a positive atmosphere is also necessary, at least one that will not hinder the process.)

Beginnings of Communication

That essential prerequisite for meeting my communication challenge was very much fulfilled. At first, my wife, Lidija, and I were the two parties! Lidija immediately intuitively gathered from my look that “I am still completely myself”; that I was aware of the situation and wanted to say something. Rudimentary yes-no communication spontaneously imposed itself as a meaningful beginning. However, the only willingly movable body parts that could signal yes or no were my eyeballs and eyelids. Blinking wasn’t reliable support at first, but luckily, I could still move my eyes left and right quite a bit. Thus, I could unequivocally express my binary choice: look to the right (at the clock on the wall) = yes; look to the left (the rest of the room) = no! (Soon, children’s blocks eased the left-right uncertainty: green for yes, red for no. )

Due to the limiting inaccuracy(There is a wide range between yes and no, and the impossibility of quick, direct communication was annoying of that system, we developed an alternative one—based on spelling. I would imagine a keyword, mentally break it down into letters, and then we would “hunt” each of them. Lidija would start to spell the alphabet out loud, and I would blink (by then, this became reliable) to signal that the currently searched letter had been reached. (Lidija significantly sped up the process very quickly by dividing the alphabet into thirds—”in the first, second, third 10?”)

Alphabet Transparency

A drastic improvement came during the rehabilitation in the spa, immediately after the hospital stay in the ICU. More precisely, it was then that a new system of communication was introduced—an alphabet printed on transparent foil (initially, on a glass plate). The interlocutor would position himself facing me at a distance of approx. 50-75 cm holding the foil between us at face height. I’d stare at the desired letter. Since the foil is transparent, the interlocutor could estimate which letter I am looking at and say it out loud. I was able by then to move my head slightly, so I’d wave no for a wrong pronounced letter. And in the case of a hit, I’d move on to the next one. By blinking or nodding, I’d signal the end of the word. Punctuation is ignored, i.e., discerned intuitively. After returning home, many improvements to this system followed before its finalization.

Of course, such “conversation” requires some practice, but it is a very quickly and easily mastered skill! (A laser pointer mounted on my glasses would probably make the job easier for the interlocutors. Yet, it is better to practice this without aids because they are not always available.)

The next stage was :

Basic Computer-aided Communication

Before stroke(s), I dealt with computers professionally and still had a PC at home. So, as soon as I regained more control of head mobility, I got motivated to use this for typing. My inspiration for this was the late famous physicist Stephen Hawking, who was heavily disabled due to ALS. I remembered seeing one of his older photos. A photo from the brief time-chunk when he still controlled the computer with a stick attached to his forehead. Several stages of improvement of such an aid followed, from loose initial improvisation to fairly solid and functional solutions.

Refined Computer-aided Communication

It soon became apparent that this horned solution, as helpful as it was, was neither very handy nor complete. The IT geek in me cried out for a mouse or similar device for easier computer control. (Imagine doing anything on a Windows system without a mouse. It is feasible in principle but costs an unimaginable amount of patience, nerves, concentration, and time!) About that time, a good friend of mine, a seasoned computer programmer who had recently moved to the USA, entered the scene. He offered me a mighty hands-free mouse system—Smartnav by Naturalpoint. In light of the previously highlighted note, it was a new and unheard-of concept for me at the time, bordering on science fiction. Curious as I am, I accepted the offer and cast off, heading to the unknown…

To summarize, after ten months of persistent practice, adjustment, and modification, Smartnav has become my indispensable partner. A simple, barely noticeable “crutch” that allowed me to use a normal computer and standard programs without any modifications. You can find out the principle of its operation from this video (extracted from the documentary Cast Both In Heaven And On Earth):“

The combination of computer+Smartnav+internet enabled me to function in the‘’realBoth within the immediate environment and around the world‘ world, to write larger texts (e.g., this one), Substantially helping me to manifest many new projects (see Chapter 3. Unlocking LIS). Alphabet transparency is still in daily use for immediate and simple communication.