Update on wife and a litte venting (long)

I know some of you here know about what's been going on with my wifes health. She has slid back some more and lost the use of her voice again. Don't know if it will be temporary or permanent, the last time it was over a year I guess. Her intestines still are paralysed so liquids only. Her legs are weakening and her walking is limited to short distances again. Looks like we need to start brushing up on nonverbal communications skills again. Please keep her in your prayers as she is pretty upset about all this again and if there is one thing she really hates it will be if she needs a wheelchair again.

What really chaps my rear end is how people pull away from people with MS, especially at this stage. Heck just the handicapped in general. The stares, talking slow and loud like they can't understand, on and on. She basically has no friends left except a few long distance friends from our past that she keeps up with via e-mail. Even all the local "christians" from churches we've been involved in locally have disappeared. They are uncomfortable with people who are not "normal" I guess, whatever the heck that is.

Family, I don't want to get started. We do have some younger folks who might read this but since my sister in law made the statement "I think it's all in her head" that sort of sums up my family.

At least a few of my shooting friends are around but we seem to be running separate schedules these days. I have to say some guys at the local IPSC club have been fantastic. Their gunsmith has helped me set up two 1911's now and won't let me pay for anything. I've also been given a full Dillon loading setup since they figured I should stop paying full price for ammo. Last trip to the range the manager told me that trip was a freebie, I looked like I needed to blow off steam I guess.

We are still looking to find a live aboard boat. We decided that since her future is such an unknown we might as well make it as happy as we can and we would rather live on a boat than the biggest mansion on land any day. We spent the bulk of our adult lives out there and while far ports won't be reached anymore we'll take what we can get.

Sorry if some of my posts lately have sounded a bit anti-social but my mood hasn't been the best and my tolerance for the foibles of my fellow man are not at an all time high at the moment. When listening to some people bitching about some inanity the other day I wanted to slap 'em up side the head and explain how shallow and stupid what they were complaining about was. But I guess some people have never experienced real trials.

We've gone from living a life most only dream of to my wife being alone and often confined indoors. It was not always fun and often times hard and occasionally dangerous but I find I'd rather be back there any day than facing this. But without me there would be no one left to take care of her and after 25+ years I ain't going anywhere. My wife even offered me an "out" because she knows how hard this is. Most couples with MS in the marriage last less than two years. I may not like it but I love her and will stick it out whatever comes. I guess it's the way I'm made, I would have thought there are more like that but I've been proven wrong before.

So these days she pretty much is at home with her art and while she has lost the ability to do much of what she used to do she still works with polymer clays. I try to create a nice, quiet little world where she can be comfortable despite the horses tail ends of the world around her. If you want to see some of it go to

http://www.marylexhibit.com/

I think she still has some of her writings there as well.

Ok, I've blown off a little steam and I'll shut up now........

We wish you both well & are in our prayers..........


Stay Safe.........
Chris

You're a good man. My family and I will continue to keep you and your wife in our prayers.

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Originally Posted by ELCruisr

Even all the local "christians" from churches we've been involved in locally have disappeared.

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I will continue to keep you & your wife in my prayers. God bless.

I also pray that no bitterness will develop regarding those in the church. You're dealing with too much right now than to have to deal with Satan dropping some bitterness and resentment in there to add to your trials and tribulations.

Sorry, please forgive me for preaching when all you wanted was to vent, release some steam, and share with your CC family.

I hope and pray that the next update that we receive will be one of improvement and healing. Please keep us informed and continue to feel free to vent - that's what we're here for!! :smile:

Hang in there and He will give you both the strength you need.

You wife is a very talented lady...

You're on pray lists here too...both my wife and I...I had shared info about you with her...

Still looking forward to lunch in Ocala...during this next week? (If you are still able...)

ret/Ken

It's sad to know that her friends have not been around for her. I'm glad that she has you to count on, to console with, to lean on. You can come here anytime when you feel the need to talk and just get it off your chest. We will listen.

I went to your wife's site. WOW! I like what she can do. Very talented. I can take a lump of clay and when I get through with it, it doesn't even look like clay anymore, nor anything else. LOL.

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Originally Posted by ELCruisr

What really chaps my rear end is how people pull away ... They are uncomfortable with people who are not "normal" I guess, whatever the heck that is.

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BTDT, having seen such withdrawal myself, first-hand.

I know that many (most?) folks simply don't know what to think, say, how to behave, what's verboten or off-limits. Without guidance as to what has / hasn't changed, folks often don't know how to proceed. Nobody teaches this. There's no acceptable way to deal with it when illness occurs. Withdrawal is often easier than to be the one responsible for bringing up a sore subject, or bringing it up badly.

Suggestion: If she's got a few good friends (locally) that simply haven't been through "the discussion," perhaps giving them the benefit of the doubt (as to their friendship) by calling them up to invite them over to spend time with her might be effective. By "the discussion" I mean informing them that she still needs their simple friendship, engagement/banter/whatever, and of the parameters for discussion (if anything's off-limits or simply too painful to discuss). Likely, nothing's really off-limits with friends ... and those folks simply don't yet understand that.

The simple reality is this: she hasn't changed. She's the same person. She's got wit, wisdom and interests in life just as always. They're missing just as much as she is, by this withdrawal. Helping them to see that might be all that's needed.

As for the artwork ... yes, many of the pieces are wonderful! It is amazing what some people "see" in their heads and can put into form, whether in clay, paint, bronze, photography, drawings. Impressive. :urla9ub:

You and your wife are in our thoughts and prayers.

Your statement that you will stick it out with her and her statement that she would give you an out if you want it shows the love, honor and committment in your relationship.

It sounds to me like it would be an honor to know you both.

It is your "friends" who are missing out.

God bless.

my prayers to you and yours.

my best friend has ms, not that bad yet. he's on avonex, it helps, but he still has bad days. its a tough, tough thing on everyone involved. hang in there, the good lord doesnt put more on you than he knows you can handle.

he moved back to new york, said the heat and humidity made it worse, though he loved the area. because of him, ive met alot of people afflicted with ms, and theres one trait that stands out in all of them, and those that take care of them, and thats true compassion and strength of character.

you, sir, are a true man. :salute:

Wishing you both the best. Hang in there.

You are both in our prayers.

Hang in there and let her know we are thinking nothing but good thought for you both.

I agree with ccw9mm. Most people jus don't have the experience in how to react to people with the degree of problems your wife has to deal with. It very well might help if you contacted some of her better friends and let them know that she could benefit by seeing them again. Hoping this will pass and she will start improving again. Keep us up to date and by all means, feel free to vent if you need to....

Yeah, I've had this conversation so many times that I hear it in my sleep. I keep it polite and positive but it seems pointless anymore. They always promise to come visit and talk about how concerned they are but they never show up. Wrapped up in their own little fantasy worlds and don't want to see anything negative I'm beginning to think. So many shallow and self centered people these days. The shame of it is we have some incredibly close and supportive friends but because they're old cruising friends and the like they are spread out all over the globe but not here.

Her very best friend she has not seen in person for over 10 years but they still are very close via e-mail and cell phone now and then. She also is dealing with some extreme health issues. Most of our other good friends are half a globe away. Sorry, but in many ways many people in some parts of the third world are some of the warmest and most supportive people I know. I think because in their world they are the only support they have for each other and they still understand the closeness of friends. Not bitter, just sometimes apalled at the direction my home society has taken and the effects I see.

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Originally Posted by ELCruisr

They always promise to come visit and talk about how concerned they are but they never show up. Wrapped up in their own little fantasy worlds and don't want to see anything negative ...

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That's the core of the problem.

IMO, the ill are like any other identifiable group that's involved in non-standard situations. For example, military and LEO types can deal with the bombs, getting shot, the blood and the stress, but what's difficult is being treated as a pariah because of the job that's performed, as if that has somehow magically changed the person. Same thing with folks that are sick. It's the stigma, of sorts, that goes with being ill. Folks seem to think that being asked to "come visit" is actually a request for some huge involvement or commitment (emotional or otherwise), when in reality it's a simple plea to continue as if nothing has changed ... to continue the basic friendship and not get hung up in the illness or its effects. Granted, MS isn't the common cold, but the principle's the same.

I've witnessed a few individuals experience that amazing moment when a dramatic sense of clarity spreads over their faces once they realize they are only being asked to continue a simple friendship, not to move mountains (which is the family's problem). After the embarrassingly obvious sense of relief passes, now the table's been cleared for something simple: spending time as a friend. Nothing more; nothing less. True friends won't have any reason to not spend time, after that realization has been made.

Suggestion: To those handful of friends whom she still might like to see and who might have an ounce of honor left, consider sending each a simple "gift of friendship" of this book ... Tuesdays With Morrie, by Mitch Albom (or the film version, with Jack Lemmon. One who can't be swayed by this simple story is no longer human. It's that poignant. Her true friends might actually appreciate (and ultimately value) a loving push in the right direction.

You and your wife are on my daily prayer list. I'll be lifting you in prayer daily. God's blessings on the two of you.