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Wednesday, October 27, 2010

Me and the elephant again

Everytime I look, it has been over a month since I posted here. For my fan (I know you are out there), I am sorry. As I have said previously, it is hard to get motivated to do this. Emotion and passion drove the beginning and most of the earlier posts.

The melting continues. MSA is a cruel, dastardly illness. It is evil in the way it affects EVERYTHING! I feel so bad for my wife as she is dealing with being able to do less and less. Her speech, posture, grip, facial expressions, vision, movement, and overall comfort are affected in ways you cannot imagine if you are not going through it. To deal with it second hand is bad, to be the person afflicted has to be hell on earth.

One of the ways we have dealt with this disease has been to try to have something in the not too distant future to look forward to. When my wife was first diagnosed, we made a deal to go on a cruise. We did late that year. We have since been on another cruise; and are leaving on yet another in a week and a half.  By the way, if you are the caregiver of someone with a similar affliction, I can recommend cruising as a good vacation. Every modern cruise ship I have looked at has handicapped accessible rooms, family-style restrooms, and are generally workable for a wheelchair bound person. With the meals, entertainment, and travel happening all around you, limited mobility is not as big an issue. The pricing is very competitive with a stay at a decent hotel. This is especially true when you factor in that the food and entertainment are included for the most part. I also recommend NCL. The "freestyle" cruising is the way to go. Our last three cruises have been on NCL and it is the only way to go. (OK, NCL - a free or discounted cruise for my wife would be welcomed)

I am looking upon this trip with some sadness however. Although we are both looking forward to it, we both realize that this could very well be our last "big" trip. My wife's condition is making it tougher to do the daily things that have to be done, especially when in new and different surroundings. Now, we have not discussed this. I have mentioned the "elephant in the room" problem that occurs (at least for us) when acknowledging this disease. Unless you have been in the situation of having a loved one diagnosed with a progressive and fatal illness, you probably cannot imagine how discussing it is avoided. I just know that we are having more and more problems dealing with day to day activities here to realize that future trips like this probably will not be possible. I know my wife understands this as well.

Facing this realization, among all the others, is one of the things that makes this disease so damn evil. My wife and I have been married for 37+ years. We have raised six kids to adulthood. We did without a lot of things over the years, especially for us. We had a reasonable existance and tried to give our kids a life they would and could look back fondly on. We finally got to a point that we could have enjoyed life with each other when MSA came in. Again, we have not discussed this a lot. This is not just an elephant in the room, but an entire menagerie - rhino in the room, lion in the room, etc. As I have said before here, we still enjoy what we can, when we can. We still laugh as much as possible, just maybe not as long or as loudly.

Anyway, think of us on the ship in the blue waters of the Caribbean sea in early November. The snow is melting anyway, we might as well go to the tropics.

2 comments:

  1. I hope you have the best time on your trip. You both deserve it. Enjoy each day and don't worry about the next.

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  2. Please add myself Greg (I suffer from this disease) to your emails. I appreciate you taking the time to write this blog. Yes, we do suffer in silence.
    I hope you are planning another trip in the near future. My email is gspangler_2@yahoo.com. I would enjoy keeping in touch.
    Greg

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