Ask the Spouse of a Disabled Person

Yes, it’s another “ask the…” thread. I was reading an on-line blog about a man with just one foot who was musing on when the proper time to let a prospective date/mate know about his missing bit and in general relations between the disabled (however defined) and normal people. it occurred to me that this is a subject I know a little bit about, though certainly anyone else married to someone disabled is welcome to chime in.

My husband was born in the 1950’s with spina bifida. His is a relatively mild case, although it certainly has had a significant impact on his life. But this isn’t about him - it’s about being the significant other of someone with a disability. I’ve had weird comments, rude questions, and heard some strange notions along the way. And people seem to often have questions - sometimes blurted out, sometimes tip-toed around.

So… um, ask away. If you don’t, this thread will sink like a stone.

Was he disabled when you met? What is the extent of the disability now versus then?

Is your hubby employed ? What sort of job is best suited for him ?

What is his normal sleeping position ?

Broomstick…I’ve long admired you as a poster, and I happen to think this is a great idea for a thread.

[li]So, what was YOUR reaction when you first learned about his disability? [/li][li]Were you friends before you started dating, and in either case, did his disability have any impact on your willingness to be romantically involved? [/li][li]Had you ever dated anyone with a disability before you met him? [/li][li]Did your family have any negative reaction to you getting involved with him due to his disability?[/li][li]Are there any ways in which his disability causes you any discomfort or unhappiness?[/li][/ul]

Since spina bifida is a birth defect (it actually occurs something like 5-8 weeks after conception, very early in the development process) yes, he was disabled when I met him.

When we met he walked with a significant limp and he had some trouble with incontinence (now there’s an awkward thing to mention to a prospective significant other). Fact is, though, I couldn’t keep up with him, he was overflowing with energy. He couldn’t take me dancing (well, he could take me to the dance, but he couldn’t himself dance), but that was about it for limitations. Oh, and walking on icy/slick surfaces was quite hazardous as his legs aren’t as stable as an able-bodied person’s legs.

Now, though, he’s over 50. In addition to the normal aging issues he has abnormal joint wear due to an abnormal gait, so his hips are wearing out and causing him trouble. Repeated bladder and kidney infections due to the urological problems inherent in his birth defect have sapped his strength and energy. He’s diabetic now - which has nothing to do with his spina bifida but is a further and serious problem. He also has severe carpal tunnel syndrome and has lost most of the use of one of his hands.

When I met him he was “disabled” but did almost everything that young men do, and was quite active physically. Now he is really disabled and unable to do a lot of anything. He’s trying to stick to walking as much as possible, but we may need to get him a scooter in a few years, though Og knows where we’d put one in our apartment. On occasion, going to venues that do require a lot of walking or when he’s having a particularly bad day, he’s borrowed one.

He used to be employed. When I met him he was working as a design engineer at a coil-winding company. After that company went out of business he started a music school and marching band (yes, the guy who walked funny used to lead a marching band - and the able-bodied folks were always surprised at how fast he could limp). Music agreed with him more.

Unfortunately, he can no longer walk long distances, and certainly can’t walk fast any more, and he can no longer play most instruments because of his hand/wrist problems. I’d like to get him a tuba, which he can still play, so he could continue to make music and get involved with some local playing, perhaps even perform some, but alas we just don’t have the money for a horn.

On his back or side.

I met him at an Irish ceili or dance night. Here’s this guy with a bad limp approaching me at a dance to say hi - I thought it was pretty ballsy. Of course, he was there to watch the girls (and their various bits) bounce up and down, but he’d heard I played bagpipes and used a recruiting message as an excuse to talk to me. It was successful, and I joined his marching band. Several months later, he asked me out on a date. Later, I found he intended to recruitment me not only as a band member but as a girlfriend all along.

I knew something about spina bifida before he told me that was what he had, so my reaction was “Wow - you are really lucky. Most people with that are in a wheelchair or at least on crutches, you’re not.” As I had some knowledge of the problem beforehand I wasn’t too surprised at anything else, like the incontinence issues. My reaction wasn’t typical because I had more knowledge than the average person to start with.

As I mentioned, I was a member of the marching band. We did get friendly before he asked me out, the first date was several months after we met.

No, I don’t think his disability inhibited me much, if at all. But then, I’m probably not typical. I know some women in the past had been very nasty to him. In a lot of ways the romantic risk was his, not mine. After all, I could walk away from it all, he’s the one who was stuck with the disability.

I dated a man with a severe stutter for about two years. It’s a different sort of disability.

There was considerable concern about whether he’d hold me back, the effect of his health on a long term relationship, that sort of thing. Some relatives had a “uncomfortable around disability in general” issue but probably not as much as typical. I have a cousin who married a quadriplegic, so that barrier had already been breached in the extended family.

Yes, several. People with spina bifida have nerve damage, and it causes chronic pain. It is troubling to have a loved one in pain, and my husband is in pain every day to one degree or another. He’s starting to have a lot of health problems, some due to age and some due to his disability and some to both and that’s not fun at all, particularly with being poor right now and the dysfunctional US health system. At the time of his birth, people with my husband’s degree of spina bifida (it’s a variable defect) generally had a life expectancy of 6 weeks. Obviously, he has exceeded that greatly. He knew about a dozen other kids with spina bifida growing up (he went to a school for the disabled) but none of them lived to adulthood (they all had more severe forms of the disorder). At one point he was believed to be the oldest living person with his degree of spina bifida in Illinois. What I’m getting at is that no one has any idea of his life expectancy. When I married him I was aware that I was more likely to be a widow at some point than the average new bride, but maybe not, and certainly no one could say when. Certainly, without modern medical care he wouldn’t be around right now. It’s a sort of uncertainty that isn’t pleasant to have, but I deal with it.

I’m not happy that he is unable to do much these days. He has never stopped me from, say, hiking (he can’t keep up or handle rough terrain) or skiing or doing physical things he can’t do, but there is less and less we can do together. Going to a shopping mall, for example, can leave him completely exhausted. It’s even more frustrating for him than me. We’re trying to keep him as active as possible, but that’s changed from a 3 mile march with a band on the 4th of July to going out to the movies (when we can afford it, which isn’t often these days). Back when I could afford to fly I took him with me as often as possible, but there were some aircraft he couldn’t get into or out of on his own.

But these are things that can’t be helped, there’s nothing personal in any of them. What has always hurt the worst were the negative reactions of other people. There was the woman who, upon learning I was married to someone disabled, said “You’re young enough to divorce him and marry a real man who can give you children” (as it happens, my husband is sterile but there’s no way that bitch, who I had just met, could possibly have known that, she just assumed). People have declined to invite me to events or activities because they didn’t want my husband there, or assumed he couldn’t participate. Or they’ve invited me and ordered me to keep my husband at home (needless to say, I do NOT find that acceptable! I’ve terminated “friendships” over that nonsense) I’ve been accused of having a “sick fetish for cripples”, or for scars in a way that is pretty hostile - yes, my husband is a cripple, he walks funny, and he does have a lot of scars from surgery, some of them pretty ugly, but that’s not what attracted me to him. It pains me when people don’t treat my husband as another human being, or as another adult - the classic one is people in a service job (waitress, retail sales, that sort of thing) who refuse to talk to him and instead address all questions through me. WTF? I am happy to say that this has become less of a problem over the years but it still happens occassionally. My husband has relatives on his side who, when he was younger, insisted on putting newspaper under him wherever he sat down in their house or limited where he was allowed to sit - yes, he has control issues but it’s not that bad and there are things he does to control such problems. We certainly have not felt a need to “protect” OUR furniture in such a manner!

So, in sum on that last question - it’s other people who have always seemed to be the greater problem, not what he can and can’t do physically.

Thanks for this thread. The reactions from others you’re describing are absolutely shocking. I guess I’m lucky that I’ve never had to witness anything like that.

If I had the money, I’d buy your husband a tuba. I used to be in marching band (trombone) and it’s very rewarding.

I know you have mentioned you’ve fallen on hard times financially lately. Has having a disabled spouse added to the financial burden in any way? More generally, do you feel you’ve had to sacrifice financially over the long-term because of his disability?

I don’t want to stomp all over broomstick’s thread, but can also chime in on this particular topic.

I’ve mentioned before that Mr Kitty has CF; he turned 50 this year, but wasn’t diagnosed until he was nearly 48 (yes, he has a full-blown case, and yes, doctors are utter morons). He’s been ill our entire marriage (13 years this past October) but didn’t start really going downhill until about 3-4 years ago. When we met, he had breathing problems but was still able to get three college degrees and hold down full-time jobs. Now he’s on oxygen 24 hours a day, receives disability, and we’re waiting to hear about the transplant list. He spent 38 days in the hospital last summer (8 on a vent) and another 2 weeks this summer.

My biggest complaint is other people thinking they know how I should feel/act about his issues. Both Mr K and I have a very, very realistic outlook on his prognosis, and a fairly dark sense of humor about it (this is a man who bought a 1972 Cadillac Miller Meteor station wagon- yes, that’s a hearse. No, I don’t know whether he’ll be around long enough to finish fixing it up). When they finally diagnosed him, they literally said “Sir, we simply don’t know why you’re still alive.” My immediate response was “Have you MET him??? He’s too MEAN to die! He’ll outlive all of us JUST TO PISS US OFF!” Basically we’re at the ‘acceptance’ stage, and are simply looking to enjoy whatever time is available. Yet a lot of people think that I’m cruel/heartless because I joke about his situation, or because I went to work every day when he was in the hospital (of course, these same folks weren’t willing to pay my bills if I’d decided to sit by his hospital bed wringing my hands the whole time).

My boss’s boss actually ‘dressed me down’ one day over this; she’d accused me of looking pissed off during some activity with the kids, and I told her that we were waiting on some tests for my husband (this was pre-diagnosis, and there were a lot of scary words being tossed about) and I was simply distracted. I then made a comment along the lines of it being silly to worry, since we were all going to have to die of something, and she just flipped out and went on and on about how I was being insensitive to my husband and I needed to have a better attitude and joking about it was JUST WRONG. I finally just told her she didn’t really know anything about our relationship, and while I appreciated her opinion, it wasn’t accurate for us. I think she’s still sorta pissed about that.

My other complaint is more selfish, and I rarely bring it up unless I’m at my wit’s end. Because he’s sick all the time, and because his stuff is obvious and life-threatening, he gets a lot of attention from people (especially medical folks). As a result, a lot of my stuff gets pushed to the side, or I’m told “well, at least you know you’ll only have that 104 degree fever and hacking, painful cough for a few days; he has to live like that!” Or worse, when I do drag myself to the doctor, I have to spend precious time and energy answering questions about how my husband’s doing. I used to joke that I could drag myself into the doctor with compound fractures of both legs and before they’d stop the bleeding/set the bones, I’d have to update them on what’s up with the hubby. :rolleyes: Hell, I’ve been vomiting daily since June, and by the end of the summer was down from a 36" waist pant to a 32"… who wants to guess how long that went on before I actually went to the doctor to get checked out?

olives, I can answer the financial question. We ended up having to declare bankruptcy after Mr K lost his job and had his lengthy hospital stay (our portion of the bill last summer, after insurance, was $350,000). We went Chapter 13, and the only thing we’re paying off is the house and the fed/state taxes. ‘Financial burden’ doesn’t even begin to cover the difficulty his situation causes… his pharmacy bill alone each month is several hundred dollars, and we don’t qualify for any outside assistance because I make too much money on paper (they don’t look at what I actually bring home, which is miniscule after the bankruptcy garnishment). Compounding the issue is the knowledge that we are really, really, really screwed if anything happens to my job… and there are always whisperings in my sector. It certainly shifts your priorities… and you have a lot less tolerance for financial stupidity (ie, my coworkers who kept harping on me to go to a hair salon to get them to cover over the blue hair dye I’d used for Halloween, instead of just waiting for it to wash out. Dumbasses- I can’t pay for my husband’s medications… why the FUCK would I spend money on a hair salon???).

Wow… this was actually quite cathartic. Thanks, broom! :slight_smile:

I suspect encountering any type of prejudice new to oneself is shocking.

There are costs to managing a disability that the able-bodied don’t have. For example, supplies to deal with incontinence and urological problems are a constant monthly cost that he has always had. When I had a good job with good benefits this was an annoyance more than a burden, we could easily deal with the cost. When I lost my job it became a problem and a significant drain.

Over the *long *term no, I don’t feel we had to make sacrifices, though currently there are problems. When I first met him and for most of our marriage he was employed and often made more money than I did. It’s the last ten years where that has changed. Now it’s a problem because we aren’t and can’t be a two-income household. We are trying to get him on disability but it’s very difficult, particularly in his case. The attitude is that 'well, he used to be able to work, why can’t he work now?" THAT is causing problems. Also, when we went to apply for food stamps some people in the welfare office were very negative, saying things like “Well, there are people in wheelchairs who have jobs, and you can walk, so you aren’t disabled” or “We have people with no fingers who have jobs, you can still use one hand so you aren’t disabled”. Well, yes, it would be great if we could find an employer willing to accommodate ALL his current limitations, but such does not, apparently, exist. There is also an attitude that since he has a college education he should be able to gain employment where he is simply required to think and not do anything physical. I suppose Stephen Hawking is such an example, but there is only one Lucasian Chair in Mathematics at Cambridge and, as my husband is NOT that level of theoretical physicist he is not qualified for the post in any case.

That illustrates the problem of the myth of the super-gimp. Just because ONE disabled person is able to do a certain thing does not mean ALL disabled people can do that, or that all barriers have fallen, or that people don’t still have limitations. And, again, there really is significant prejudice out there. There have been instances where people have clearly refused to hire him due to simply not wanting the disabled around, occasionally saying directly to his face that even though he was fully qualified to a do a job they wouldn’t hire someone crippled.

So, right now, as he is NOT officially declared disabled what’s hurting us is the limbo status. Half the welfare office insists he must come down and look for work and the other half is convinced he is truly disabled and this may well result in our benefits being terminated until he either gets a job (which he can’t - I’m able-bodied and have a horrible time finding work in this area, the disabled are pretty much SOL) or gets officially on disability. I have already had one of the Welfare Office Bitches muttering about disability being a scam and he’s just lazy where/when she thought I couldn’t overhear her. The attitude with some people is that if you can stand upright and walk at all if you don’t have a job you’re lazy and have a bad attitude. There’s much talk of employers being required to make “accommodations” yet this “work center” doesn’t even have seating that he can use without risking pressure sores and will not make that accommodation, seeing it as unnecessary. As my husband can’t realistically drop his shorts and show off the scars from skin grafts required to repair the damage from prior encounters with bad seating this is just one more example of an insurmountable attitude problem. Nor can he pass most drug tests for jobs requiring them due to the medication required to handle chronic pain from damaged nerves - and offers to get him into “drug rehabilitation” just display a total lack of understanding. He does not abuse drugs, he uses them for legitimate medical reasons. He requires that medication to function at his peak ability, it’s like suggesting a diabetic should get off the insulin. People who ask “why doesn’t he get this/that problem fixed?” don’t understand that much of his problem is unfixable - that’s why he’s disabled, it can’t be fixed! Again, he has only the use of one hand, but for all their talk about how employers can get keyboards for the one-handed they don’t have one, and won’t get one. It comes down to telling people that accommodations are required yet refusing to make any accommodations. Just looking around the place I can see that anyone in a wheelchair would have a terribly difficult time with their doorways, hallways, and the layout of their rooms which simply do not provide adequate space, ditto for anyone with a walker or other mobility difficulty yet they prattle on about how being disabled is no longer an obstacles in finding work. They’ve also rather archly informed me that since it is not legal to discriminate due to gender or age such things no longer exist. No doubt they also tell black people that there is no longer race bias in hiring.

And I’ll stop that there, because I don’t want this to end up in the Pit.

In sum - if you have a middle class income or higher being disabled is a financial annoyance in our case, but if you’re poor it’s a fucking nightmare. Without insurance his medication runs about $285 a month. His incontinence supplies around $60 a month. That’s several hundred dollars a month that are NOT counted in “essential expenses” when calculating household aid. Sure, they’ll take into account rent and utility bills and even the cost of gas for the vehicles but NOT the costs incurred by a disability! So it winds up that we supposedly have all this “extra” money and we don’t. The assumption is that if you ARE disabled you’re officially stamped so and if you aren’t so stamped you’re not disabled and you are “choosing” to spend your money on these things. The system totally ignores that it takes YEARS to get onto Federal disability in most cases.

Currently, he’s in a bizarre limbo, as I mentioned. He’s got a handicapped placard and state subsidized insurance that covers his maintenance medication, but nothing for the incontinence supplies and there’s that bullshit with the food stamps/welfare office/looking for work. Sorry for going on about that, but it is THE biggest source of stress in my life right now.

He would like to work - he has started and run three successful businesses, he’s quite the entrepreneur - but he can’t. He’s tried. There have been many people who have tried to find a way to accommodate his limitations so he could be hired (in sharp contrast to some of the prior mentioned bigots) but it’s not possible any more.

I notice that when you see someone on TV saying their disability is an inconvenience they are invariably middle class or better. Being poor and disabled just sucks. It’s definitely worse than being able bodied and poor.

I’ve also had medical people suggest with a straight face that I should divorce him in order for him to be officially destitute and get onto Medicaid (apparently they are unaware that the welfare office thinks he’s able-bodied so that wouldn’t work anyhow). Since he has become “unable to work” level of disabled I have had some people tell me to divorce him so he won’t “pull you down”. Appalling, really.

However, MOST people don’t do that.

I hasten to add that he does continue to do what he can. It’s just that “what he can do” is much less than it was 20 years ago. One reason I’ve been very careful about my own health and body is that I am the only strong back in the house. If the driveway needs to be snow shoveled or a car pushed or something heavy lifted or moved I’m the one who has to do that. Paradoxically, his disability has been an enormous motivation for me to remain as able-bodied as possible. I might not be as strong and healthy as I am today if I had not been living with someone physically disabled. When I was severely ill in 2007 and took a couple months to recover he was having to recruit a friend to help him around the house while I recovered my strength, it was in many ways frightening to realize just how dependent he was on my good health. That’s when he finally woke up and started applying for official disability status, just in case something happened to me. I wish he had started the process years earlier, but that’s water under the bridge now.

Oh, please, stomp away! I opened this up for anyone who is a significant other of someone disabled.

Oh, gosh, yes - I’m not a saint, I’m not a martyr - I’m just a human being trying to do my best in life.

And yes, there is definitely “gimp humor”, some of it VERY dark. But really, sometimes you have to laugh or you’ll start crying, and sometimes things are just funny. Josh Blue and Adam Hills are both comedians who use their disability in their act at times (though not as their whole act) and it’s one of the reasons my husband and I find those guys funny, we can relate even though my husband’s disability is not at all like what theirs are.

Oh, yes, this - I went through it with my mother, who started seeing cardiologists 5 years before I was born and whose last 20 years were one medical crisis after another. After a certain point you shrug and say “I’ll come to the hospital ICU after the blizzard is over, if mom dies before then it’s HER problem, I’m not risking a car accident” and then you’re regarded as a heartless person, BUT if you ran to her side every time there was a problem you’d be “unreliable” and never be able to hold a job. Ditto for me getting on with life while my husband is in the hospital with a kidney infection or whatever. I do go sit by his side when I can, but the world doesn’t stop when someone is having a problem. When he had (yet another ) bladder surgery two weeks ago I was able to be at the hospital the whole day, but that’s because I didn’t have any other work that day. If I had, I would have dropped him off in the morning, gone to work, and picked him up afterward from outpatient surgery. The medical stuff is NOT a sprint, it’s a lifetime long marathon.

This is why, when someone’s loved one is sick, my first advice to them is invariably "take care of yourself" - because the tendency is to focus on the “poor cripple” and ignore the caregiver’s needs. This almost killed my dad a few years ago, literally. Both my parents got sick with pneumonia, but all the attention was focused on mom, the patient with multiple heart surgeries and post-stroke and with the emphysema. No one caught that her 76 year old husband was ALSO sick - dad collapsed at home, in their kitchen, and if my sister hadn’t walked in on him the next morning he would have died there, HIS problems ignored. As it was, he wound up much sicker than mom that time.

One thing I like about my current doctor, who is also my husband’s primary doc - my appointment time is mine, we don’t discuss husband’s problems during my time.

Yeah, it does shift your priorities. We were always more careful with money both because we had expenses regular folks didn’t and because we were more aware than most that at some point we might become a single-income household.

Think we all need that.

Have either of your spouses, or you on their behalf, had problems with people not believing they were disabled?

I’m thinking of stuff ranging from getting The Evil Eye for parking on a disabled spot to someone who’s only seen him at distances greater than 50yd and sitting down saying “oh c’mon, no he’s not!” if his disability ever came up in conversation - and even insisting, as if they knew him better than you do (hello, who’s the one married to him?)

ETA: sorry, I see Broomstick already answered this one. So, bobkitty?

Oh, gods yeah, especially his (!) family members who haven’t seen him since the significant decline. I think part of the problem is he spent so long hiding/denying the depth of his problems, that they got kinda used to thinking of him as more functional than he was. I’ve had arguments with various friends/family about exposing him to Things That Can Kill Him, with them getting genuinely angry that he’s not willing to visit for a few hours in a smoke-filled house, or that he’s not willing to hold the crusty-eyed, snotty, obviously feverish baby. :rolleyes:

The parking space is the worst, though- usually we’ll part in a ‘cripple spot’ because he doesn’t mind walking into a store/medical office/whatever, but inevitably by the time we’re done he’s too winded to walk back out. I’ve gotten a LOT of nasty comments going to get the car to pick him up, from people who (understandably, but geez) can’t figure out that maybe the disabled person is in the building waiting.

Thankfully, we didn’t get too much grief from the ‘official’ disability folks… the head of the CF clinic that he goes to- who is also on the transplant board- told him, when we started the SSDI process, “With these numbers, we don’t need to give you a piece of paper proving you’re disabled. We need to give you a piece of paper proving you’re still alive.” :smiley: And he wasn’t far off… we got accepted on our first appeal.

Wow. I really don’t know what to say. The stuff you guys are dealing with on a daily basis is incredible; I can’t even begin to comprehend what kind of strength and resourcefulness and humor that would require. bobkitty, I love that you guys are in the acceptance stage, even if others aren’t. Oftentimes our unwillingness to face harsh realities can deprive us of the direct experience of life, prevent us from living in the time we do have. That you guys have decided to cut the bullshit and directly experience your lives is… powerful.

I appreciate your willingness to fight my ignorance by opening up about it. I will recommend Sr. Olives read this thread as well. I think any person would benefit from knowing about the challenges that your families are facing.

I am repulsed by the behavior of these people – how do these jerks live with themselves being so awful to your husband? I am sorry you had to put up with such nonsense throughout the years, especially from relatives who should know better.

This is such a great thread that I wish I could come up with a question about something that hasn’t been addressed already. Is there anything that you were hoping people would bring up that hasn’t been yet?

That’s part of the problem - they don’t see themselves as the bad guys.

Broomstick, have you considered seeking legal assistance in securing SSDI benefits? I understand that some law firms will handle the task on a contingency basis (with a federally-capped limit of 25% of the beneficiary’s lump sum of back payments, up to seventeen months, IIRC). This is in California; I don’t know if any firms in Indiana operate that way.

Ok, this question might sound insensitive or offensive, but is not meant that way:

Does his disability sometimes make you, perhaps in the back of your mind somewhere, regret marrying him? Or has anyone ever asked you if you do? Do you ever feel stressed out by his disability? Please don’t take that the wrong way. I only ask because Mrs. kidneyfailure has a serious illness which, on top of being expensive to treat, is potentially-fatal and extremely stressful for the whole family. It didn’t happen until after we were married, but it came as a huge shock to all of us. We all stood by her, of course (“for sickness and in health”), but I did have a co-worker who once asked if I regretted marrying her. I absolutely do not regret marrying her in any way, shape, or form though, admittedly, I do sometimes think to myself, “man, this whole problem is just too stressful for me to handle.” Does it make me a bad person for thinking that way? I’d like to think I did the right thing when she got sick, handled it well, was supportive…but thinking things like that makes me feel guilty.

Yes, we have had a lawyer for 18 months. I am getting pissed off at said law firm, and so is the husband. We’re on the verge of firing the assholes and using a different one for our next appeal.

Note that bobkitty’s husband got his SSD on first APPEAL - not first application but rather first appeal. And that’s a guy on a transplant list!

Well, can’t say I was hoping for it, but no one has asked any questions about sex with disabled people here. People do get funny notions about sex and disabled folks (the Adam Hills link touches on that) though perhaps Dopers are more enlightened than average in regards to the notion that yes, cripples can and do have sex lives.

Well, a lot of people in this world deal with difficult situations. A single mother raising several kids probably has an equal load of worry and stress to what I do, as one example. What makes our situation so unusual/novel is that most people do have our particular problems.

That’s OK - this thread is for asking questions you might not normally ask.


Yes, more than once.

Oh, yes, certainly. Particularly when he’s in the hospital, or having a really bad night when he can’t sleep due to pain flaring up or something else like that.

It’s a normal, human thought. Inevitably, there will be days you feel that Fate has been terribly unfair to you and your loved one. And it IS unfair but you still have to deal with it anyway. The fact that I can walk away (though emotionally and morally I won’t/can’t do that) also makes it hard some days. Every so often I do want to run away. So does my husband, but he can’t.

I don’t think I have a question here, but it is fascinating seeing this from the other side. I just am what I am, physically, it’s been true my entire life. My coming to terms with it is a very very different experience (and an ongoing one) than somebody getting to know me who has to come to terms with it and how the world treats me because of it.