I have to tell Carol about that

It has been over 20 months since the ambulance came and took my wife away for the last time. Even after that long, it amazes me that I still see or hear things that I think to myself - "oh man, I have to tell Carol (my wife's name) about that. A former boss, friend, and somewhat of a mentor of mine passed away late last year. I just heard about it within the past weeks. The first thing I thought of when I heard was telling my wife, and how amazed she would be.

My wife was from South Florida (by way of the Pittsburgh area, but from age 4 a Florida girl), the Ft. Lauderdale area to be exact. We made many, many trips from N.C. (where I am from, and where we lived as a couple for most of our marriage) to the Ft. Lauderdale area over the years. Then as her mother and a daughter of ours moved to Central Florida - to I-4 and to the Orlando area. I still make the trips to Central Florida quite often. I am writing this from that area, already my second trip this year.

The reason I bring that up is I am very familiar with the wonderful "Main Street East Coast" - I-95, at least from Richmond, Va to Miami. The first trip I took to Florida as a teenager was before most of I-95 was there. As my wife and I made the trips over the years we saw more and more of the highway being completed until it was done (not counting all construction - that never ends!). I know a lot of the exits, a lot of the scenery, a lot of the attractions. I have regular exits that I frequent on my travels. So, when I see something new and interesting it stands out. But as on today's trip, one of my first thoughts is - "I have to tell Carol about that."

So, Carol - you should have seen what I saw! And, David Moore died in late November.

I guess I'll just keep "telling" her. Miss you.

HELLO...?

I have mentioned before that communication for my wife (and those of us trying to communicate with her) is a very, VERY frustrating thing. I am travelling again this week and one of the things I always try to do is call her at least once a day just to "check in". This is so frustrating for her and me. She has trouble holding the phone to her mouth/ear, and that combined with her inability to speak clearly and with volume makes a phonecall a frustrating experience. She actually does not get many phonecalls now from anyone but myself just for that reason. I know she likes to hear from me (and others) so I make a point to call.

It always makes me so sad to hear her, actually to not be able to hear her. I am constantly saying "I did not hear that" or just "what" or "excuse me"; at almost every comment. I end up cutting the call short just because of the frustration level for her and myself. What is the saddest to me however, is when I call her and she does not answer. What I get (or now got, because Verizon changed our voicemail service and her message was erased) is her voice from three or so years ago. It would tear me up to hear her bright, cheerful, clear voice with volume telling me she was not available. As I have commented before, it is amazing how quickly this disease takes away that which those of us that are not afflicted take for granted; like eating, speaking, walking, driving, etc. It always amazed me that her voice could change so much in such a short time.

We always get some form of conversation in, however; and she made my day today when I said "I did not have anything particular to tell you. I just wanted to say hi". Her response was "I am glad you did".

Like I said, we are just searching for the shade.

What did you say?

I know I have not posted for a while. As I said previously, without making this just a daily or weekly report of the disease, I just cannot be motivated to write. Most of the posts prior were "of the moment" type. I am still wrestling with this. Here are some thoughts today however.

Most, if not all of you reading this can turn to someone else in the room and make a comment on it. If you want to send me your thoughts on this post, you can type a comment. When your phone rings, you answer it and have a conversation if it is someone you want to talk to. Now, imagine none of that were possible.

That is where my wife is now. I tell her that her world is slowly getting smaller. It started by her not being able to drive where she wanted. Then it became so she could not walk where she wanted. That restricts her physically. Slowly, her ability to talk is being taken away. I have said "excuse me", "what did you say", or just "huh" 8,468 times in the past month. I know it annoys both of us.

What does it mean when you can't speak? You can't let people know what you are thinking. There are schools of thought that profess speech as one of the defining features of our humanity. She can make known what she needs, and most of her wants; but the act of discussing what she feels or being able to hold a conversation is gone. Like I said, she lives in a little world. People don't call her because they cannot understand her on the phone. People don't talk to her because they cannot understand her responses. When we go to the doctor now, they end up speaking to me because I am usually translating after the first few words anyway.

So, modern technology has given us many other ways of communicating - right? Texting, IMing, email, blogging, etc. That has helped some, and still is a bit. But, try doing any of those things when your tremors are so bad that you cannot hit the keys. It can take her two to three minutes to type a text with one sentence - and then it will be mostly mispelled words. Emails are OK, but for her to answer one can take all evening and would fail a second grade writing class.

I can only experience this through her frustration. I feel so bad for her. I have tried to think of anything that might help, but I am at a loss. I see her world slowly (or actually to damn quickly) closing in around her. Not being able to communicate with family and friends is horrible for her. We continue to do what we can. She continues to do less and less.