"Heroes"

eric593 · Post by **eric593** » Fri Mar 26, 2010 2:48 am

I just read Wheelchair Kamikaze's blog describing the "real heroes" as the careproviders to MSer's such as his wife and other partners of MSer's.

....really?

I am trying to understand this (I'm not married but I would like to be) because maybe I have unrealistic expectations for a partner and assume it is not such a big deal or sacrifice. Maybe I think my "sparkling personality" is worth a lot more than it is.

Does having serious MS problems require an extraordinary-type of person to deal with them and support us? I guess I just think that I would have no problem being with someone with difficult health problems and I would not think myself special for doing so. If I loved someone, I would think nothing of it and would not think of myself as a hero for doing it. But I could be wrong. I guess for me, if I called someone a "hero" for putting up with all my health-related problems, that would imply that I was a burden for having the health problems and someone was pretty nice to put up with it, and I just would never think that.

Could others tell me if they also believe our partners are heroes if we have MS and they put up with us and supported us? I wonder if other people have thoughts on this.

gymbuff · Post by **gymbuff** » Fri Mar 26, 2010 3:05 am

I believe my wife and daughters are heroes. They do not look for any accolades but they deserve them.

In general caregivers do not look for accolades but they do deserve them.

"that would imply that I was a burden for having the health problems"
Health problems are burdensome and it takes special people, family members or others, to help alleviate the burden for the sufferer.

eric593 · Post by **eric593** » Fri Mar 26, 2010 3:10 am

Hmmm...

maybe I've lived with MS for so long (25+ years) that I take it too much in stride and no longer appreciate how "normal" people are.

gymbuff · Post by **gymbuff** » Fri Mar 26, 2010 3:14 am

I have lived with MS for over 20 years and the one thing I hope I will never forget and appreciate how "normal" people are

eric593 · Post by **eric593** » Fri Mar 26, 2010 3:26 am

My way of thinking has always been like this.

There are obese people who are as limited as I am. I don't think it takes a "hero" to love and be with an obese person. There are agoraphobics who go out less than I do, the incidence of Alzheimers is waaaay too high, and so many people love and take care of them, even after their spouses don't even know who they are or love them anymore because they don't recognize them or have any memory of them.

These are just a fraction of what goes on in people's lives. So I guess I have never thought that it would take a "hero" to love and be with me because it's just not unusual for people to need care due to health problems for one reason or another. That's the way my thinking has been. I just think it would be unusual to actually get thru life without SOMEthing affecting you so I haven't thought having MS would be any more burdensome than countless other things.

gymbuff · Post by **gymbuff** » Fri Mar 26, 2010 3:57 am

Heroes come in different guises, soldiers, firemen, paramedics but they chose a particular job and got trained for it and get paid for it. That is not to diminish their heroism in any way, they do jobs that very few people want to do but caregivers do what they do out of love and dedication to the sufferer with no monetary reward. They didn't choose to become a caregiver but when it was thrust upon them they choose to stick with it.
Wedding vows sum it up nicely "in sickness and in health 'til us do part'

bigfoot14 · Post by **bigfoot14** » Fri Mar 26, 2010 4:17 am

Let me tell a true story (names are omitted to protect the guilty)

my wife is also a long time ms person. Every year I go one hunting trip with the same group of guys. Several years ago we were sitting around at the end of the day and the topic of our wives came up, and I was asked many questions about my wife's health and the issues it caused. After a brief description of what our life is like, one of the other hunters said " I admire you for staying with her, if that was my wife, I would have left years ago"

I have seen many divorces caused by the stress over one partners health issues, nursing homes are filled with alzheimer's patients who's family drop them off and then never come visit (I used to work in a nursing home and this is sad but true).

So am I a "hero" ? I certainly don't feel like one, and there are many many others out there like me. But I also know that there are many people that cut and run when the going gets tough

Loobie · Post by **Loobie** » Fri Mar 26, 2010 9:25 am

I think his post also expounded on how many people are unfortunate enough to be married to people who don't look at it like you do. They run away/abandon, whatever you want to call it. You can't deny all the stories that are true about the spouse not sticking around. Lots of people are not selfless enough to stay with someone disabled and take care of them and that's just the way it is. When contrasted with those people, it makes you appreciate your situation much more and I also call my wife a hero. I think it's because they CHOOSE to stay that makes me so grateful. They don't have to.

scorpion · Post by **scorpion** » Fri Mar 26, 2010 5:03 pm

Well said Loob....

Bubba · Post by **Bubba** » Fri Mar 26, 2010 8:56 pm

scorpion wrote:Well said Loob....

DITTO!!!

Algis · Post by **Algis** » Fri Mar 26, 2010 9:34 pm

Count me too: well said loobie

eric593 · Post by **eric593** » Sat Mar 27, 2010 9:26 pm

Thanks for the reality check. I don't think I realized that it took someone extraordinary to go through life's tribulations and trials. I thought most people had it in them. I find that extremely depressing. I guess I needed to know that though.

bluesky63 · Post by **bluesky63** » Fri Apr 02, 2010 11:20 am

I read Marc's essay too and thought the timing was great. I had recently written a piece about the profound impact it's had on my children that their dad -- my spouse -- chose to leave us when I developed disability.

To write that piece, I did some research and found some interesting info from national surveys. The divorce rate is already fairly high; among couples dealing with physical disability (not just MS), it's doubled.

I think I would make this distinction: It's not just having MS. It's dealing with the disability from MS. And not only the physical disability, but the cognitive disability. Cognitive disability has to play a big role in a relationship.

The MS Society recognizes how incredibly stressful it is for "caretakers." (We might call them children, spouses, etc.) They try to support them with programs, information, etc. It's certainly easier to handle MS with more resources.

I will say, knowing my own situation, that I think it definitely would take lots of patience to handle cognitive problems. And physical problems can also be difficult and scary. And having to plan every outing around access, etc., is definitely limiting. But if you genuinely love someone, wouldn't you want to learn about those issues and support your partner? Especially if there were children involved.

But each of us is different. I guess that's the point of the essay, right?

P.S. The point of the piece I wrote was that my oldest daughter is what you might call a hero. She's been a caretaker for me and substitute parent for her siblings since she was in fifth grade. I am starting a foundation for curative arts that would benefit the children of people with disabilities, to give them a creative voice and a healthy outlet, and this piece was one part of it.

eric593 · Post by **eric593** » Sat Apr 03, 2010 4:27 am

bluesky63,

Thanks for sharing your feelings on this.

I'm interested to know how you think that cognitive problems affect a relationship?

Regarding the physical stuff, I guess I just think that healthy spouses also "don't feel like" doing things that their partners want to do. Yes, disability is definitely limiting, I can't go jogging with my girlfriend or play a game of tennis, as much as I might want to. I can't go for a walk on the beach. I WISH I could but I can't waste my time on wishing what I could still do, if I did I'd be bitter and resentful. I agree with you for sure that when there's a wheelchair or scooter involved, it can be a hassle. A manageable one, but still a definite hassle. If I was confined to a bed, that would be a different story. My bladder and bowel issues aren't attractive and it's not an easy topic to bring up when first meeting people, but I just don't see it as the end of the world. Frankly, it can be a source of enormous humor as well.

There are plenty of non-disabled people that wouldn't do participate in physical activities either. There are so many husbands that come home from work and sit on the couch and watch t.v. and drink beer all night. So I am trying to figure out why I would be so challenging to live with because my inability stems from disability. What's important in a relationship is emotional support and emotional closeness to me, and if anything, having an illness brings me much more in touch with my feelings and that side of me, connecting with people in an emotional sense. It's made me a lot less judgmental too.

I can see how children would be affected because a disabled parent is far less able to participate, and children would need to take on a greater role, most especially for single disabled parents. This puts a lot more responsibility on the other parent too, I see that. But there was a time when husbands weren't involved in the care of their children anyway, so for one parent not to be able to do activities or get the kids to sports, etc. doesn't seem much different than the way it used to be by choice. Husbands never thought it was "their job". You deserve a medal for single parenting your children while disabled, that must be incredibly difficult.

I agree that children can be heroes, but I also believe that children can grow up to be incredible adults when they learn these kinds of lessons as children. Life isn't easy and maybe I take all of this too much in stride because I don't think life is easy for almost anyone. I guess I just see someone who is mean and nasty or emotionally vacant or lazy or immature as needing an extraordinary person to be with them more than me because I have MS and all the challenges that it entails. I think I might be in denial though.

LR1234 · Post by **LR1234** » Sat Apr 03, 2010 5:36 am

I think it comes down to how we deal with our disabilities.
My partner had a lot of trouble coming to terms with my diagnosis.

He found it hard to cope as my character understandably changed when I was suffering with a relapse and the emotional prospect of having my life turned upsidedown.

He has said he would never "leave" me because of my disabilities but I also know that he would not be able to stay with someone who no longer enjoyed life and became permanently miserable.

Its a hard ask for anyone to see that and not to want to run away especially as there is very little they can do to change the situation.

Luckily its not in my character to give up and I make the best of the situation but I have made him aware that there will be times when I feel down and I don't feel like smiling or putting on a brave face, during those times I want him to support me and when I am happy and feeling well to make the most of it.

Anyone who has this illness will know its a rollercoaster ride, sometimes its hard for the partner to ride along as they never know when they can rely or not rely on someone who is ill.

I think we are all brave and heroes, those that are suffering and the family/relatives/partners who stick around to help.