Pray for Ian latest post so sad...

[oil]

Maybe it is me, but I believe Ian deserves better too.

From the readings you included, yes it appears over time she may go rough on him from her frustration. She needs so much help.

[PurpleSheepleEater]

I don't know if thats true, because she said she would only marry him if he could speak with her, so she made her own criteria for the choice. If Ian didnt learn to speak again, according to her she would marry. So how much influence did the church really have?

I know a big influence is the authority of the husband even if hes disabled, but Im not sure about it affecting her marriage decision.

I write that because of the blog post that this thread was started to discuss, mainly this quote:

there is someone who has already swallowed up my marriage and someone who has already swallowed up my loss. it has been finished and so i can wait with my husband, tearfully, and know that my way has already been made for me. i can wake in the morning with mercies that don't seem new and know that this has already been done for me.

it was done before i was born. done before i knew him. before mrs. murphy.

All this "my way has already been made for me" and "it was done before i was born" says to me that she is now convinced that this was always her lot in life, written before she was born.

[treemom]

desiringgod.org/blog/posts/why-we-got-married

desiringgod.org/blog/posts/a-daily-disabled-life

"I knew where he was and that helped me so much....we were dating very intentionally"

"As long as Ian could communicate, we could make it work"

"Everything primary he can do, like leading my spiritually"

"“Ian’s brother Caleb, who spends 40 hours a week with him, also testifies to Ian’s spiritual maturity: “So, the best way a husband can serve his wife is by caring for her spiritual condition and seeking her sanctification. This is the most obvious way Ian serves Larissa, and he does it well.â€

[oil]

All this "my way has already been made for me" and "it was done before i was born" says to me that she is now convinced that this was always her lot in life, written before she was born.

Oh yes, I see this now.

[treemom]

Okay - yes. That does bother me.

I'm not sure how that shakes out between Ian and Larissa, however.

I posted some of the ways it shakes out below...and I can't find it now, but she wrote a post on being submissive to him.

If it were not for that dynamic, and how that dynamic has been since day one, then I might feel less troubled. but it is hard for me to overlook that when I am thinking about my feelings on the matter.

[treemom]

And it isn't that I think she should think this is all roses and puppy dogs. In fact, I feel like she should be liberated to feel fully and express fully about this.

I think she needs to be able to say it fucking sucks.

[curlytoes79]

I’m a bit disturbed by the number of people here who believe Larissa should have left Ian, her fiancé, after he had suffered a traumatic brain injury. It reads a lot like, “I’m committed, unless you get hurt. Then you’re on your fucking own.â€

She does seem to be suffering from severe (and potentially dangerous) caregiver burn-out. She needs to access as many respite resources as she can so that can carve out a good life for herself even while remaining loyal to her husband.

In Larissa's defense, I will say this: if it was fully and completely her choice to marry Ian because she loved him and wanted to follow Jesus's example (not because she felt pressured by his dad or whatever), then it's probably the closest thing I've seen to Christ-like behavior from any fundy.

Loving your neighbor as yourself ain't for the faint-hearted. Taking on someone else's lifelong burden - like Ian's TBI - is a loving and compassionate act worthy of Christ - again, assuming that Larissa's motivations were as I said above.

Agreed that she will suffer burnout unless she learns to accept help, though.

[moonbeam59]

Burris, give me a break. You responded DIRECTLY to a specific quote of mine, saying "And this is another part of my problem: No one here – not me; not you; not anyone – knows the extent to which Ian’s brain injury affected his cognitive abilities or his capacity to choose." What exactly were you trying to say about my post, then?

ETA I actually would really, genuinely like to know what you meant, if I misinterpreted you. I'm not trying to be snarky (or, um, passive aggressive). You picked apart my post line-by-line, and while I am otherwise more than happy to agree to disagree, I don't think I commented with any amount of certainty about their situation.

[bionicmlle]

Burris-- appreciate your perspective on this issue as it is making me rethink my position.

One thing is for sure: Larissa seems to be in a situation that she doesn't seem to be thriving in. If she is going to stick with it she needs to be sure she puts herself on her caregiving priority list.

[Koala]

Is he being hurt by being married?

Is that the bar? If a person can't consent to marriage they can't consent to marriage. Period.

[salex]

Nope. I'm just a little miffed because I've seen this argument more than once and it always follows the same track: People who have limited experience with disability weighing in on just where they'd draw the line before cutting off all the useless dead weight that used to be their spouse or the fetus in a heretofore wanted pregnancy, etc.

And should someone come along who either has a serious disability or is intimately related to such an individual, his or her words are given no more weight – and perhaps less, since people on the outside looking in are allegedly more objective *snerk*– than the words of individuals whose experience of disability amounts to a patch-quilt of fleeting experiences coupled to a lot of guesswork.

I have stated my personal preference on how I would respond to a couple of scenarios, based on who I am and what my limitations are. I am also not going to provide you with a litany of my experience with / relationship to anyone who is disabled, but we can agree that you are in a more intimate relationship with a person with a disability that I've ever been in, at this point.

However my limited experience may be, in your opinon, my preferences--my choices--my end of life living will instructions are mine to make, whether you approve of them or not. While I'm past the age of having children, I know where I would draw the line, but if you were sitting next to me pregnant with a child that would be born with problems outside of what I could accept, and were talking about your plans to keep your baby, I would never suggest to you that you abort. Because your choices are yours. Your experience is yours. Your opinions are yours. You get to make the decisions in your life, and state your opinions about what you would do, because it is your life.

Likewise, I make the decisions in my life about how much care I could personally give vs seeking outside help. How much disability I personally would be willing to endure, etc.

And frankly, if you had married for a greencard and your husband married for a caretaker and you are both happy with that "contract", I wouldn't care. People have married for much worse reasons. Love is made up of all the pieces of each person in the relationship. (Since IQ is sexy to me, that 170 number caught my eye)

However, I remain dumbfounded by the Ian / Larissa Story--mostly because I'm not buying it. She seems unhappy, he seems far worse off, intellectually and possibly physically, than they seem to suggest in the blog. All these little snippets of things he says and does, but never a picture or film of any of it, despite his reported frequent visits to his "workplace" which is a video company. I am not sure that they aren't both being used by the guy selling the book in their earlier videos or someone else. But, I'd not talking about them and their choices at all if they had not "gone Hollywood" and promoted the blog, the wedding movie sent out to so many blogs and ezines, weren't selling his watercolors, weren't going on speaking engagements, weren't promoting a book. It isn't as thought they don't want the spotlight, and with the spotlight comes comments--both good and bad.

I wonder about the brother as caretaker. I know that in many states, family members can be paid by medicare/caid to care for other family members. Perhaps this is a way to keep that money in the family. Does anyone know if said brother has at least CNA training?

BTW-- I wrote a previous response that apparently didn't go through. Either I still need to learn the mechanics of Freejinger OR this will be double post (or both) so, sorry if that is the case.

[HeckBound]

I think calling poor Larissa a "sexual predator" is ludicrous. I can't imagine sex with him is much more pleasurable than masturbation, and a lot more work. I think it's all part of her "we have a normal relationship" fantasization.

[treemom]

I think calling poor Larissa a "sexual predator" is ludicrous. I can't imagine sex with him is much more pleasurable than masturbation, and a lot more work. I think it's all part of her "we have a normal relationship" fantasization.

I am not sure anyone actually did call her a sexual predator

[oil]

Is that the bar? If a person can't consent to marriage they can't consent to marriage. Period.

Its the bar for me. If I cant consent to having some one take well care of me with love for the rest of my life, I hope some one else would consent that for me in a split second.

[Koala]

Its the bar for me. If I cant consent to having some one take well care of me with love for the rest of my life, I hope some one else would consent that for me in a split second.

I am the exact opposite. If I didn't have the where with all to consent to marriage I wouldn't want anyone consenting for me, and I certainly wouldn't want to marry someone just so they could be a caregiver for me for the rest of my life. I would never dream of having someone make that kind of sacrifice on my behalf.

If I had suffered a TBI before my husband and I married I would hope my mom would have encouraged my husband to start over. I would want more for him than being a full time caregiver to me or possibly in a one sided relationship.

Larissa is a person. She deserves a life and a marriage with an equal partner if that's what she wants. A marriage that isn't born out of guilt. Now perhaps Ian is capable of offering her that, but based on what I am reading on the blog, I'm not convinced of that. Larissa reads as extremely depressed with and overwhelmed by her situation.

If Ian is at a point in his life where he needs his father to orchestrate a relationship on his behalf then he doesn't need to be married. It's that simple. I am very troubled by the notion that people with out the ability to consent should be entered into marriage based on what their parents or whoever decides is best for them.

[dawbs]

Is he being hurt by being married? I think no, so even if he wasnt in position to get married, its a good situation for him to have a devoted woman to love him and care for him. I assume they sleep in the same bed, so thats very good for his emotional well being to have this physical touch.

For Larissa, I admit to Burris that I havent experience with any thing even close to disability caring, so I dont know how to base a judgement on her. I dont know whats in her heart, but I can imagine she loves him very much and I know she needs help for her mental health and relief help to care for Ian..

And to get away from that church!

Honestly, a dedicated caregiver isn't ALwAYS all it's cracked up to be.

I've seen people who, yes, were hurt by having that sort of caregiver--the caregiver was an 'excuse' to isolate, was a crutch to keep them out of what could have been awesome programs. The capable spouse was what kept the handicapped individual fro being able to pursue relationships (friendships and more than friendships) on a more 'even' level.

I think it's 'cheap' logic to say he's better off--rather like saying that the kids from an orphanage are better off with their new adoptive parents. Not that, on one level it's not correct--it probably is 99% of the time.

But it's not always a through look at the nuances of the situation.

(and none of that takes into account caregiver burn out and resentment)

[oil]

I agree with you about Larissa but I was being specific on Ians benefit from it although he could not consent to marriage.

If a person can't consent to marriage they can't consent to marriage. Period.

The judge who consented to him for marriage has not harmed Ian in any way as I can tell. So in my opinion, the consent by him or some one else is irrevelent. He is happy. Thats what matters.

And please Im being clear, Larissa matters too. I at this moment specifically discussing it from Ians side as it relates to the issue of consent. For you, you say you dont want consent on your behalf even if its a great benefit to you as a disabled person. For me I would appreciate the judge giving the consent for me if I cant so can be in a loving relationship.

I think it's 'cheap' logic to say he's better off--rather like saying that the kids from an orphanage are better off with their new adoptive parents. Not that, on one level it's not correct--it probably is 99% of the time.

If its true that 99% of times it is beneficial, then the logic is not cheap. Its a logical assumption I make based on overwhelming statistics.

[dawbs]

If its true that 99% of times it is beneficial, then the logic is not cheap. Its a logical assumption I make based on overwhelming statistics.

right...but it's only one facet that it's right on 99% of the time. It ignores all the other facets.

I mean...

I can tell you that my mother, when she was 8, was in the car, going to live w/ family members who were going to adopt her.

The adoption didn't happen, for a variety of reasons. On the face of it, would mom have been better off? she'd have gotten one-on-one attention. She'd have had money for food, for clothes, for COLLEGE, for all those things. It's easy to look at that and say of COURSE she would have been better off. 99% of the material things would have made her better off.

But that ignores what she would have lost. she'd have lost her mother who, flawed though she was, instilled in her a refusal to break. She'd have lost 4 siblings--and since she was living the J-slave sort of life, those relationships were extra precious to her--the boys were her 'children'. She'd have lost the relationship with her father. she'd have lost her roots. She'd have lost immaterial things.

THAT is what I"m saying.

That, of course if you look at once facet, a dedicated care-giver seems a no-brainer.

But...it's not that simple or cut and dry when you're dealing w/ people and their relationships. there's a 'cost' to those things too.

[Koala]

The judge who consented to him for marriage has not harmed Ian in any way as I can tell. So in my opinion, the consent by him or some one else is irrevelent. He is happy. Thats what matters.

I am curious, what is your basis for the idea that this has not harmed Ian in any way? He is married to a woman who most likely allowed guilt to play a large role in her decision to marry him. Now she is at best overwhelmed and at worst genuinely depressed by her situation. And honestly? His happiness isn't all that matters (not that we know he is happy). To me personally, there is a right and wrong here. A group of adults getting together and arranging a marriage for someone not capable of consenting is horrifying to me personally. Ian's father had no right to push Larissa into marrying his son so that he wouldn't have to worry about him. There are many other options other than marriage. Hell, Larissa could have still been there for him without making a lifetime sacrifice.

For me I would appreciate the judge giving the consent for me if I cant so can be in a loving relationship.

But if you weren't even capable to consent, how could that be a loving relationship that was mutually beneficial to both parties? In your previous post you mentioned having someone to care for you the rest of your life- that's one sided. What about your potential spouse? Who's supposed to care for them? If you can't even consent to the marriage, can you do it? Is that a fair partnership?

If its true that 99% of times it is beneficial, then the logic is not cheap. Its a logical assumption I make based on overwhelming statistics.

Not saying they aren't there, but can you please cite these overwhelming statistics that show it is somehow beneficial to have someone marry you with the purpose of being your sole caregiver for the rest of your life? Also, do these statistics show it to be mutually beneficial or just beneficial for the person being cared for?

[bionicmlle]

One quick note -- "TBI" can refer to a LOT of things. From minor, almost imperceptible damage to devastating physical injuries. One of my best friends was married to a man who had a traumatic brain injury after a minor car accident. He had a major change in personality afterwards. Previously religious, Republican and relatively committed to her to a cheating asshole who started smoking pot. They divorced. I think clarifying what one means about "TBI" or "what kind of disability would I 'tolerate'" is important - TBI doesn't mean nonverbal, on a ventilator and incompetent.

[Burris]

For Larissa, I admit to Burris that I havent experience with any thing even close to disability caring, so I dont know how to base a judgement on her. I dont know whats in her heart, but I can imagine she loves him very much and I know she needs help for her mental health and relief help to care for Ian..

And to get away from that church!

I agree. Burn-out is not some minor, cutesy term for someone who is a little tired: It can be a serious problem - and for someone without adequate respite and supports, it could actually turn deadly. That has happened a few times, especially with mothers and their severely disabled children.

And I doubt their church is of much help there.

I love my husband, and he grows more and more capable with each day – and yet I still need help and respite. It isn’t fair to him or me that other people who are being paid to provide needed services should just sit on their hands. He needs to go out and do his own thing – which he does.

[lipstickgoalie]

One quick note -- "TBI" can refer to a LOT of things. From minor, almost imperceptible damage to devastating physical injuries. One of my best friends was married to a man who had a traumatic brain injury after a minor car accident. He had a major change in personality afterwards. Previously religious, Republican and relatively committed to her to a cheating asshole who started smoking pot. They divorced. I think clarifying what one means about "TBI" or "what kind of disability would I 'tolerate'" is important - TBI doesn't mean nonverbal, on a ventilator and incompetent.

I was just going to say the same thing. In August I will be marrying a man with a TBI. He has more than likely had it since well before we met (likely due to a Humvee accident in Iraq but possibly exacerbated by a rocket attack in Afghanistan after we were together.) None of this was discovered until he entered the VA system for help with PTSD. I know that TBI and PTSD are both things that sound frightening and overwhelming but for us it is a relief. For him it helped explain why school was harder than it used to be and for me it meant he wasn't consciously being a dick when he would drift off in the middle of a conversation or called me 4 times from the grocery if I asked him to pick up things for dinner.

To put it another way his TBI makes it very difficult to multitask, he can not listen to a lecture and take detailed notes or talk about emotional or detailed subjects if the TV or radio is on. His PTSD means that going to the grocery or out eat makes his his stress level rise to an uncomfortable level so now we wait extra time if needed to get a table that is in a back corner away from the restrooms or kitchen entrance and he will go to the grocery at off peak times. When we get married at Disney World and spend our honeymoon in the parks we will be getting an accommodation that allows him to bypass the lines or wait in an area that is separated from the people corrals. He is working with an organization to get an assistance dog that is trained in PTSD and will walk behind him to prevent him feeling as if people are trying to sneak up on him and will recognize when his stress levels rise and divert his attention by doing things like putting its head in his lap for pets. The VA provided him with some tools like a recording pen and notebook that allows his to record the lecture while writing one word "notes". When the lecture is over he can scan the single word and the pen will replay that specific section of the lecture. (I am kind of jealous, that thing is super cool.)

In all honesty the PTSD is much more problematic than the TBI and even that isn't that problematic. In fact our relationship has become stronger since diagnosis. The worst aspect of Mr Goalie's TBI is a very VERY mild aphasia, if he is passionate about what he is discussing he sometimes has to pause very briefly to get the right word or to connect ideas. At its absolute worst it is like having a conversation with someone who is tired. No one would know that he has a TBI unless they were specifically told about it. He lived with it for 10 years before even he knew it was something other than a shorter attention span or a slight difference due to aging.

I guess what I am trying to say is not all TBI means that you need a carer or are unable to consent. Mr Goalie is still an active duty member of the National Guard, a hockey coach, and all around wonderful, handsome, whip smart individual. His specific TBI just means we no longer discuss important subjects while the tv is on.

I hope that this post does not come across as hand slappy. I have just wanted y'all to know that a TBI is not necessarily a one way trip to being incompetent.

*edited for riffles.

[Burris]

SNIP.

I'm glad you guys are entering into this thing with a full knowledge of the consequences.

It might be a good idea for you to arrange for someone else to help him out in social situations should you ever become temporarily incapacitated, however; you can avoid all kinds of unpleasantness that way.

Good luck - and I mean that with all sincerity.

[dora]

Lipdtickgoalie, I am so happy for you and your fiancé that he is able to get that kind of support.

[oil]

But if you weren't even capable to consent, how could that be a loving relationship that was mutually beneficial to both parties? In your previous post you mentioned having someone to care for you the rest of your life- that's one sided. What about your potential spouse? Who's supposed to care for them? If you can't even consent to the marriage, can you do it? Is that a fair partnership?

I was only speaking of from Ians side of the partnership, that he is benefitting from the marriage. Yes, Im being one-sided for a moment, to focus on Ians situation not Larissas. But you make a good point I didnt realize, that if Larissa get burned out she cant be benefit to him.

Not saying they aren't there, but can you please cite these overwhelming statistics that show it is somehow beneficial to have someone marry you with the purpose of being your sole caregiver for the rest of your life? Also, do these statistics show it to be mutually beneficial or just beneficial for the person being cared for?

I only 99% because the poster who questioned me used it. I was only using her number. I really have no idea about statistics of this circumstance.

The marriage part is kind of bizarre but if shes religious, may be she truly want to have that joining with Ian in the church eyes. May be she in very in love with him. I dont know. I was thinking its too difficult life for her, but I dont think its an unfair life since she made the choice. Its definitely uneven. I think this situation is more complicated than any of us can understand.