Saturday, August 20, 2011

The Alphabet Board


That was the first sentence I saw my dad spell with his alphabet board. My mom worked with him, patiently asking: "Is it Red? Blue? – Blue? Ok, F?...G?...H?...I? – I? Alright, next letter. Red? Blue? Orange? Green? – Green? Ok, P?...Q?...R?...S? – S? Ok, is the word, IS? Alright, next word..."

I had learned of my dad's new mode of communication a week prior to this, when I was sitting in a cafe in Tel Aviv, Israel, reading my emails. There was an email from my mom titled "A Breakthrough" and at the time it occurred to me how rare it was for 1.) My mother to write a group email and 2.) for her to use such a bold title. I remember shaking as I read each sentence in this email, tears spontaneously rolling down my cheeks as I learned:

Dear Family,
After watching The Diving Bell and the Butterfly, I decided to Google "Locked-in Syndrome." I found and watched a You Tube video that showed a young woman who could not speak, and she was choosing letters from an 8 x 11 inch colored alphabet board. So, I decided to make one just like it and see if it would work with Chuck. We have tried alphabet boards with him before, but I thought that the colors might be more enticing.

Each row of five capital letters is a different color (red, blue, orange, green, purple). Chuck nods at the correct row as the color is spoken. Then he nods at the letter in that row that he wants.

In the last hour, he has spelled the following sentences:
To nurse Janet: "I have something heavy on my stomach. Also tell Mary."

To me: "Tell me if you know who has been calling this morning. Can you help me make a phone call this afternoon?"

To me: "Last evening I had a strange experience. I was walking."
When I asked him if it was a dream, he shrugged his shoulders and smiled.
I read, and re-read the sentences that my dad had spelled. I could not stop reading them. It was strange how the wording actually sounded very Dad to me, in his way of speaking proper, thoughtful English.

Reading the sentences my dad had written was like discovering messages in a bottle from passengers of a sunken ship... A ship that had sunk over two years ago.

Last month marked the two-year anniversary of my dad's painful journey locked in a motionless body with a rare disease called Critical Illness Polyneuropathy. This wildly cruel condition somehow came as a by-product of surgery to remove a small cancerous tumor. Cancer is a word that, with all due respect, sounds like a common cold in my world. At least with cancer, there are doctors who know what they are doing. At least with cancer, there are fundraisers and ribbons and support walks. At least with cancer, you get to unite with other patients and families who understand what you are going through.

But what my dad has is strange and rare. What my dad has makes neurologists scratch their heads and consult each other. Perhaps it is not fair to call our experience with cancer and its after-effects a journey, because sometimes it feels like we are going no where. It is one thing to be physically stable and it is another thing to be physically improving. I feel that my dad is stuck somewhere between these two states. He certainly is stable, he certainly is getting better, and he is noticeably starting to move more and more, even if just in the changes of his lip and tongue movements or his growing ability to shrug his shoulders. But my dad is still very much paralyzed and very much a quadriplegic.

There is now this one very different thing, though, and had you asked me last summer or even the summer before what it would be like to "hear" my dad speak through the use of a rainbow-colored alphabet board, I don't know if I'd have been wise enough then to know that the idea, although exhilarating, would also sound terrifying.

Within the short span of a month, The Alphabet Board has changed things. My dad now has the ability to give specific feedback regarding his physical needs. He can now tell a nurse to add a pillow under his head and he can express that his breathing is not feeling right. When I saw him spell: IS THE MACHINE ON, I got the chills because I knew what that meant. I knew that my dad, who breathes through a tracheotomy and a ventilator, must have been having trouble with his breathing.

I remember that, at first, I did not want to spell with my dad. In fact, I was afraid of it. I was afraid of what he would say to me because I wondered if he might be disappointed. I knew (and still know) that I am disappointed in myself. I'm disappointed that I have not cracked the code, have not had the breakthrough moment of communication and delight that would set the tone for hours, days, and months, of in-depth communication and connectedness that I have been waiting to regain with my dad ever since July 31, 2009. That was the day my dad went silent.

My dad still doesn't talk, but now, in a way he does "talk." And oh, does he have things to say.

In some ways, The Alphabet Board has shot my dad straight to the top. He has gone from the silent no-opinion patient to the All-Encompassing Chief of Staff, able to comment good, bad or ugly on the care he receives. Now – Let it be known that my dad has the most fantastic care I could ask for, and for that, we feel very fortunate. It is a miracle to go from visiting my dad in a downtown nursing home to visiting him in my suburban childhood home (the former TV room, actually).

But when I say good, bad or ugly, I don't think it should come as a surprise that in some ways, perhaps in many ways, my dad is downright angry. Only now in this past month has he had the ability to specifically express certain feelings of resentment, and I don't think he'd be too upset if I told you he has even spelled out a few F-bombs here and there.

It is painful beyond belief when he spells things like:


Or even things like:


But, on the flipside, there is a moment of complete elation when I come home from a business trip to see my dad spell:


and then experience the warmth of his smile as I start from the very beginning, describing the make and model of the airplane I flew on, the city I was in, the hotel, the project, etc.

Using The Alphabet Board is pretty easy. First, you make sure you are holding it up so he can see it. My mom put the same alphabet on both sides so that as you are holding it, you can see what he is seeing. You hold a notepad and write out the letters as he spells them. Sometimes it is confusing because you don't realize that he has finished one word and is beginning another. On more than one occasion, I have mistakenly told my dad, "No, dad, that word doesn't exist" only to realize that he is not spelling ICANT but rather, I CAN'T.

My very best night of spelling with my dad was my first one. I had willed up the courage to use The Board with him but I was nervous as he lay there, so sharp and attentive. We started to spell, and the thrill of guessing certain words before he was finished spelling them was addictive. My mom, being a teacher and lifelong librarian, is particularly good at this. My dad might start with WH – and you know that he is spelling "WHEN" or "WHY." But, on the first night of spelling with him, I jumped the gun a few times, and I guessed words that were completely wrong and not what he was intending to spell. Each time I would do this, I involuntarily slapped my forehead and yelled at myself. Pretty soon I said,

"Dad, I am like, the worst contestant on Wheel of Fortune, aren't I? It's like I keep saying, 'I'd like to solve the puzzle please' with only one or two letters in place and then I get it completely wrong!'"

With this, he laughed, and I started laughing too. His eyes were shining and he looked like... my dad. If I had heard his voice, he might have had that silent, scratchy laugh that he gets when he is laughing really hard. It is the laugh that I have inherited from him.


In writing so candidly about my dad, I run the risk of offending him as well as my family. But I also have things to gain, like giving my dad a voice and giving myself an outlet for my pain. Somehow the idea of complete strangers maybe reading about this bizarre experience helps me feel less alone, because lately alone is how I feel about this situation.

My mom is of a different generation and age, where ladies know to ask about the health of each other's husbands. Women of a certain age become the wise observers and victims of heart attacks, car accidents and (multiple) divorces, so they know what to do when a chronic, never-ending tragedy strikes. Women like my mom's friends know that they should take my mom out to dinner just because. They know that they should sneak miniature bottles of wine into a rehab center or hospital just because. They are women who have experienced life, so they just know.

In all technical terms, I am a woman of a certain age, too. An age where my peers are getting married, buying houses and having kids. But the one thing that is very, very uncommon for women of my age is to have parents who are in desperate need. Rarely do I hear one of my peers discuss their concerns over the health of a dad or the psychological well-being of a mom. No, women of my age are still just too goddamn young to really get it.

So, as you might have guessed, I'm not getting any miniature bottles of wine.

Tonight has been a difficult night for me, because I have learned that my dad has had a particularly angry, sad day and he has been spelling some poignant, hurtful things. I cannot say that I blame him. But tonight, after talking to my weary (yet always strong) mom and after having my own little woe-is-me cry, I am caught feeling conflicted about what to do next with The Alphabet Board.

I want to connect with my dad. I want to somehow convince him that we are in this together. I want him to feel less alone. But I also feel scared. I feel scared for him and sometimes scared of him. I'm scared of the reality of vulnerable parents, and scared of the reality of, well, a shitty reality. What do you tell your dad when you don't know what happens next?

How do you comfort your father when you still want comfort from him?

Sometimes I imagine sentences that my dad might spell to me and I think about how they would make me feel. I don't know if I could handle it if he said something hurtful, but that is not what I really think about. No, like the child that I will always be to him, I imagine sentences that he has said to me in the first 28 years of my life, and I picture the scene where I would slowly write out the letters and then smile in delight if he spelled:


RUNSKY (his nickname for me)


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