The Great Dev Contradiction - Desire vs Mortality

[koala]

This is probably going to be a winding jumbled mess of thoughts, but I'm going to attempt to pull together my views regarding Dev/PWD relationships and how difficult it is to reconcile our dev desires with our SO's often impending mortality (morbid, I know, but I really want to know what you all think about this). Hopefully, I can write something that is at least somewhat cohesive.

For me, there have always been two unexplainable contradictions regarding being the type of Dev who needs to be in a relationship with a PWD. The first (which is probably more specific to just me) is the question: as someone who has always been absolutely terrified of the thought of being a caregiver, why am I attracted to men who most likely will require at least some level of care? (While I want to talk about this issue, as well, it isn't the topic of this thread, so I will write more about it later in a different post). The second is the fact that my dev desires inevitably mean I will be attracted to men who will likely pass before I do...leaving me to navigate the excruciating pain and loneliness of grief, possibly multiple times. How on earth am I supposed to come to terms with that? I often wonder why disability had to be the physical trait I am most attracted to. I don't mean the more commonly talked about why: why do we find disability attractive; what causes us to be devs; how can we be attracted to something that causes pain/hardship. I mean the more foundational why: why do I have to be one of the few people who is attracted to disability, and therefore must think about these complicated issues; why, of all the things that a person could possibly be attracted to, does disability have to be mine? Don't get me wrong, I like my dev side and wouldn't want to change that part of me, but sometimes I wish it didn't come with such impossible choices.

When I met my husband, I was naïve and thought that his condition would remain stable forever. I refused to acknowledge the fact that he would inevitably die before me, and I would be forced to deal with the aftermath. I hadn't yet realized this "great contradiction" that is now such a fundamental part of my day-to-day existence. Now that he is gone, and I must live with the pain of being a widow every day, I am faced with an incredibly harsh reality...deciding if my happiness or my stability is more important moving forward. I feel that when it comes to pursuing another life partner, I have only a handful of terrible options from which to choose. How am I supposed to ever move forward in love if I KNOW that means choosing one of the following:

1. Marrying another PWD and experiencing short-term fulfilling happiness followed by excruciating unending pain AGAIN.
2. Marrying another AB and settling for long-term comfortable stability coupled with unfulfilled desires.
3. Remaining single and constantly longing to fill the emptiness with some sort of meaningful companionship.

I don't like any of those options. To me, they all involve making huge sacrifices and, ultimately, ending up in a less than desirable situation. Ugh, what's a dev to do???

[myrrh]

Two immediate thoughts came to mind after reading this.

Regarding your first numbered point- was/is the pain of losing your husband worse than the joy of your time spent together? Loss is brutal; I've lost close family and can relate somewhat. But the loss didn't overshadow what we get out of that relationship when the other person was alive, right? So rather than thinking about becoming a widow again, you can set your sights on how beautiful it would be to experience a deep connection with another human.

Secondly, are you exclusively attracted to progressive conditions? If you are only attracted to progressive disablities (and forgive me if you've said as much elsewhere) that is a tough situation. Otherwise, there are a million disablities that aren't progressive or don't impact life expectancy. You say you'll be "invariably" attracted to a man who will die before you, but there's nothing at all remarkable about an elderly amputee. One thing I'm interested in is congenital conditions that result in unique anatomy, for example limb differences or arthrogryposis, most of which has exactly nothing to do with life expectancy. It is true that many PWD do tend to age a bit harder than the rest of us due to increased strain on their body. I remember an interview I heard once with an elderly couple, and the man had CP. They commented on how aging with CP was very difficult, and how nobody warned them about the extra wear and tear all that muscle tone does to old joints.

[koala]

Apr 1, 2021 2:10:09 GMT -5 myrrh said:

Two immediate thoughts came to mind after reading this.

Regarding your first numbered point- was/is the pain of losing your husband worse than the joy of your time spent together? Loss is brutal; I've lost close family and can relate somewhat. But the loss didn't overshadow what we get out of that relationship when the other person was alive, right? So rather than thinking about becoming a widow again, you can set your sights on how beautiful it would be to experience a deep connection with another human.

Secondly, are you exclusively attracted to progressive conditions? If you are only attracted to progressive disablities (and forgive me if you've said as much elsewhere) that is a tough situation. Otherwise, there are a million disablities that aren't progressive or don't impact life expectancy. You say you'll be "invariably" attracted to a man who will die before you, but there's nothing at all remarkable about an elderly amputee. One thing I'm interested in is congenital conditions that result in unique anatomy, for example limb differences or arthrogryposis, most of which has exactly nothing to do with life expectancy. It is true that many PWD do tend to age a bit harder than the rest of us due to increased strain on their body. I remember an interview I heard once with an elderly couple, and the man had CP. They commented on how aging with CP was very difficult, and how nobody warned them about the extra wear and tear all that muscle tone does to old joints.

It's not that the pain of losing my husband is worse than the joy, but I do wonder if I could go through it again and still come out the other side ok. Yes, the beautiful memories and love that I experienced were absolutely worth it, but the pain of losing him was almost unbearable, and it has created a huge hole in me that will never be filled. It is just difficult to imagine adding to that agony and living with two gaping holes. I know so many widows who are broken and depressed and struggling to find any semblance of true happiness. That isn't me because I work extremely hard every day to not let it be me, but I wonder if I have the mental and emotional strength to pull myself out of that pit a second time.

I am actually not attracted to progressive conditions for the most part, but I think my experience has created an irrational fear that any condition could lead to a premature death. My husband's condition had very slowly progressed over his childhood and teenage years but became stable in his 20s. By the time we met, he had been stable for almost 10 years and could still stand with leg braces and walk short distances with forearm crutches. I thought that's how it would be for the rest of our lives, and it was devastating to see the switch flip and him lose literally everything within about 3 years. There was nothing gradual or controlled about it...it was a rapid and chaotic free fall.

I know my experience is unique and definitely not the norm, so I know most of my fears are unfounded and irrational. Ultimately, I know I will choose true love over stability because it IS worth it, but I think there will always be a certain level of worry in the back of my mind.

[shadow]

Apr 1, 2021 10:49:23 GMT -5 koala said:

It's not that the pain of losing my husband is worse than the joy, but I do wonder if I could go through it again and still come out the other side ok. Yes, the beautiful memories and love that I experienced were absolutely worth it, but the pain of losing him was almost unbearable, and it has created a huge hole in me that will never be filled. It is just difficult to imagine adding to that agony and living with two gaping holes. I know so many widows who are broken and depressed and struggling to find any semblance of true happiness. That isn't me because I work extremely hard every day to not let it be me, but I wonder if I have the mental and emotional strength to pull myself out of that pit a second time.

I am actually not attracted to progressive conditions for the most part, but I think my experience has created an irrational fear that any condition could lead to a premature death. My husband's condition had very slowly progressed over his childhood and teenage years but became stable in his 20s. By the time we met, he had been stable for almost 10 years and could still stand with leg braces and walk short distances with forearm crutches. I thought that's how it would be for the rest of our lives, and it was devastating to see the switch flip and him lose literally everything within about 3 years. There was nothing gradual or controlled about it...it was a rapid and chaotic free fall.

I know my experience is unique and definitely not the norm, so I know most of my fears are unfounded and irrational. Ultimately, I know I will choose true love over stability because it IS worth it, but I think there will always be a certain level of worry in the back of my mind.

Losing a spouse is one of the most difficult things a person can go through in life. Losing one young is also extremely traumatizing for so many reasons (not that mourning the death of any loved one is not difficult or traumatic). I don’t think it’s an irrational fear at all. There are a lot of disabilities that don’t necessarily shorten life spans, but there are a lot that do.  Being with partner who sustained an SCI in the 1980’s, I know life of decades in a wheelchair is rough on a persons body. Even if their condition isn’t acutely life threatening, there are so many complications that can occur over time. Sci doctors used to say 20 years after injury, but I think most people have proven that number to be very low.

I related very much to your post, thank you for sharing your thoughts and experiences. My partner and I are both on the same assumption that he will go before I do and we are planning for that.  I don’t think it’s something you should spend too much time trying to “decide” now tho. We know in our gut that all relationships have a bit of a gamble and when you find someone that you really really want to be with, those risks become worth it. 

ETA: out of curiosity I checked the current life expectancy of sci and it looks like currently they are giving a para injured at 20yr 45 yr life expectancy. Low Quad 40 yrs, high quad 33 yrs and vent dependent 16 yrs. Way better than what they used to say, but still at the least 15 years shorter than someone without an SCI. 

[koala]

Apr 1, 2021 21:04:05 GMT -5 shadow said:

Losing a spouse is one of the most difficult things a person can go through in life. Losing one young is also extremely traumatizing for so many reasons (not that mourning the death of any loved one is not difficult or traumatic). I don’t think it’s an irrational fear at all. There are a lot of disabilities that don’t necessarily shorten life spans, but there are a lot that do.  Being with partner who sustained an SCI in the 1980’s, I know life of decades in a wheelchair is rough on a persons body. Even if their condition isn’t acutely life threatening, there are so many complications that can occur over time. Sci doctors used to say 20 years after injury, but I think most people have proven that number to be very low.

I related very much to your post, thank you for sharing your thoughts and experiences. My partner and I are both on the same assumption that he will go before I do and we are planning for that.  I don’t think it’s something you should spend too much time trying to “decide” now tho. We know in our gut that all relationships have a bit of a gamble and when you find someone that you really really want to be with, those risks become worth it. 

ETA: out of curiosity I checked the current life expectancy of sci and it looks like currently they are giving a para injured at 20yr 45 yr life expectancy. Low Quad 40 yrs, high quad 33 yrs and vent dependent 16 yrs. Way better than what they used to say, but still at the least 15 years shorter than someone without an SCI. 

Thank you so much for your input. I hugely appreciate everything you said.

I often wonder if I'm being judgmental or hypocritical for thinking this way, but the trauma IS definitely real and has had quite an impact on me. For example, I have a friend who has spina bifida and a TBI. I used to never worry about him when he got sick, but now it terrifies me. This past year, he was hospitalized a few times for simple UTIs, but a couple of times, the antibiotics didn't work, and they ended up turning into sepsis. Every time he ended up in the hospital, I was afraid that it would trigger some chain of events that would end in losing him.

This is the same fear I feel now when I think about entering into another committed relationship with a PWD. I know that's what I want and need to be truly satisfied in a relationship, but my mind now equates that to loss. Hopefully, it's something I can work on and overcome in time.

[Deleted]

Let me just put this out there as food for thought. My first marriage was to an AB man who died tragically at the age of 26, the day after our first child was born. Life has no guarantees for any of us. I never expected to be a widowed mother at 25. I don’t think we should ever make choices about love out of fear. Anything can happen to anyone at any time. Choosing to be with an AB partner for fear of losing a PWD might cause two people to miss out on a transformative love. If I had known I would lose my first husband so soon, I wouldn’t have changed anything except to value the time we had even more.

[ContingentlyComposite]

I think your fears regarding pursuing another relationship with a PWD are totally reasonable. I haven't experienced the death of a spouse, but lost in other less terrible ways and have often felt like I wasn't sure if I could handle another failed attempt at love. Sometimes it feels like there is only so much a human heart can take in a life.

I think people have said a lot of sensible things here in response so I'll just add a collection of my own distastefully clinical thoughts I've had while thinking through similar questions/fears in the past that may or may not be helpful to you.

1. On average men die younger than women, and women tend to forge relationships with men that are (a little to a lot) older than they are. So even if you marry an AB dude, you're likely to be widowed again anyway. I share the fear of being widowed, and while in the past I've dated men much older than myself, I actually think it's better to pursue people closer to your age. (Research bears this out.) I have prioritized that in recent years and screened out men more than 10 year older on dating apps, and made it a really high bar to consider messaging with someone more than 5 years older. So one tangible way you can minimize the widow risk associated with a relationship with any man, and a PWD especially, is just to make a concerted effort to date men your age or maybe even slightly younger.

2. When I feel some anxiety about PWD lifespan statistics I try to remind myself that (a) I'm an insomniac ball of anxiety who drinks more than what's recommended and I have no good reason to think I'll reach old age and (b), I'm not powerless: I can help my partner be vigilant about managing health concerns when they arise and make sure I help them do whatever can reasonably be done to live a healthy lifestyle and prevent medical issues from arising. I remind myself that dying young isn't a given, statistics aren't an individual death sentence, a lot can actively be done to lower medical risks PWD face and be as healthy as possible.

3. On the topic of "marrying another AB and settling for long-term comfortable stability coupled with unfulfilled desires," I think it's good to think about what dating a PWD brings to the relationship. Does your desire for a relationship with a PWD go beyond the sexual? Can you meet your dev sexual desires in other ways that are satisfying? I think people often think there's something tragic or sad about meeting some of your sexual needs privately through masturbation and self-play. The attitude is totally unwarranted IMO. A private element of your sex life can be totally awesome. Someone who can't meet all your sexual needs can still be a great partner as long as you're not loath to be intimate with them and still have some sexually satisfying connection, and you can meet those other sexual needs in other ways. These are just things I've found worth thinking about in the past even aside from mortality-related fears since the likelihood of finding a PWD you're compatible with is always going to be kind of slim anyway. Obviously for some devs it's much more important to be in a relationship with a PWD, the desire going way beyond the sexual, but for others I think a fully satisfying relationship with an AB man is really possible and it's worth thinking hard about whether you're really doomed to disappointment with an AB man. On the other hand, I think there's a risk of really overthinking these things. Finding love is hard. There aren't many people that will come our way that really rock our worlds, and the best policy might just be to cast a wide net, do what you can to find people you're deeply compatible with whether AB or PWD, and worry about whether someone is "enough" for you/worth the risk of grief and heartache once you're actually faced with the choice regarding someone in particular.

[feelsunshine]

I also wouldn’t give the live-span statistics thing too much thought.
The post from @curiouscat was very enlightening in that topic. You never know what will happen tomorrow. Seize every day the best you can do.
My lifestyle doesn’t contribute to a long lasting life (smoking and alcohol) and I’m sure I’ve also applied these statistical -15yr to my life. So I’m good to go with a para 😀

don’t bother about statistics. Try to live a happy fulfilled life and let love happen to you. Who ever comes into your life - whether it’s an AB or PWD, if it’s the right match, he’ll be good for you. I think many of us Devs (including me) are too fixed on the thought that the future partner “has to be” a PWD. I’m actually sure, if “love hits us hard” we won’t make a difference if he’s an AB or a PWD guy.

[frenchgirl]

Hi Koala,

Thanks for sharing with us. It is very interesting. I empathise with you a lot. (pardon my bad english). I imagine that having felt so close and so connected with someone, it must be such a tear in the heart to loose him.

I'd have a question for you if you are willing to answer it.

I had never experienced true love as you mentionned in one of your post.

Could you tell me how is true love or how did you know it was true love between your husband and you?

Just if you are willing to share... 

Thanks a lot.

Apr 1, 2021 10:49:23 GMT -5 koala said:

Apr 1, 2021 2:10:09 GMT -5 myrrh said:

Two immediate thoughts came to mind after reading this.

Regarding your first numbered point- was/is the pain of losing your husband worse than the joy of your time spent together? Loss is brutal; I've lost close family and can relate somewhat. But the loss didn't overshadow what we get out of that relationship when the other person was alive, right? So rather than thinking about becoming a widow again, you can set your sights on how beautiful it would be to experience a deep connection with another human.

Secondly, are you exclusively attracted to progressive conditions? If you are only attracted to progressive disablities (and forgive me if you've said as much elsewhere) that is a tough situation. Otherwise, there are a million disablities that aren't progressive or don't impact life expectancy. You say you'll be "invariably" attracted to a man who will die before you, but there's nothing at all remarkable about an elderly amputee. One thing I'm interested in is congenital conditions that result in unique anatomy, for example limb differences or arthrogryposis, most of which has exactly nothing to do with life expectancy. It is true that many PWD do tend to age a bit harder than the rest of us due to increased strain on their body. I remember an interview I heard once with an elderly couple, and the man had CP. They commented on how aging with CP was very difficult, and how nobody warned them about the extra wear and tear all that muscle tone does to old joints.

It's not that the pain of losing my husband is worse than the joy, but I do wonder if I could go through it again and still come out the other side ok. Yes, the beautiful memories and love that I experienced were absolutely worth it, but the pain of losing him was almost unbearable, and it has created a huge hole in me that will never be filled. It is just difficult to imagine adding to that agony and living with two gaping holes. I know so many widows who are broken and depressed and struggling to find any semblance of true happiness. That isn't me because I work extremely hard every day to not let it be me, but I wonder if I have the mental and emotional strength to pull myself out of that pit a second time.

I am actually not attracted to progressive conditions for the most part, but I think my experience has created an irrational fear that any condition could lead to a premature death. My husband's condition had very slowly progressed over his childhood and teenage years but became stable in his 20s. By the time we met, he had been stable for almost 10 years and could still stand with leg braces and walk short distances with forearm crutches. I thought that's how it would be for the rest of our lives, and it was devastating to see the switch flip and him lose literally everything within about 3 years. There was nothing gradual or controlled about it...it was a rapid and chaotic free fall.

I know my experience is unique and definitely not the norm, so I know most of my fears are unfounded and irrational. Ultimately, I know I will choose true love over stability because it IS worth it, but I think there will always be a certain level of worry in the back of my mind.

[AlrightyAphrodite]

Just a note about mortality... You think you know... There are averages and expectations... But you don't. You could walk out the door and your able bodied ass get hit by a bus while he wheels around for another decade. This has happened TWICE in my family. My aunt was obese, diabetic and had chronic health problems for years, so bad she could barely leave her recliner. She got healthy so they could enjoy retirement...he dropped dead of sudden cardiac arrest three years ago. She's still trucking along.

My parents were so sure my overweight, diabetic, cigar smoking, Cheeto eating dad would go first, he had 100 percent of the life insurance. Her chronic health problems took a turn and in three months she was gone and he was shellshocked.

I don't spend any time on this calculation anymore. Day by day. That said, when my partner and I moved in together he was in pretty rough shape so I was happy to get home at all. One week was a gift. Now we are going on a year, but we know the time is borrowed.

If I look at a typical lifespan and focus on what the disability subtracts... That's what you see. If I start the counter at zero and count each day as a pleasant surprise... That's what you see. If you like to spend a lot of your time future planning this might be tough, but what are you missing in the meantime??

Maybe recent events have me a little nihilistic but...we plan, God laughs. I think the joke is on me 😻😜

[em]

Jul 10, 2021 9:50:38 GMT -5 AlrightyAphrodite said:

Just a note about mortality... You think you know... There are averages and expectations... But you don't. You could walk out the door and your able bodied ass get hit by a bus while he wheels around for another decade. This has happened TWICE in my family. My aunt was obese, diabetic and had chronic health problems for years, so bad she could barely leave her recliner. She got healthy so they could enjoy retirement...he dropped dead of sudden cardiac arrest three years ago. She's still trucking along.

My parents were so sure my overweight, diabetic, cigar smoking, Cheeto eating dad would go first, he had 100 percent of the life insurance. Her chronic health problems took a turn and in three months she was gone and he was shellshocked.

I don't spend any time on this calculation anymore. Day by day. That said, when my partner and I moved in together he was in pretty rough shape so I was happy to get home at all. One week was a gift. Now we are going on a year, but we know the time is borrowed.

If I look at a typical lifespan and focus on what the disability subtracts... That's what you see. If I start the counter at zero and count each day as a pleasant surprise... That's what you see. If you like to spend a lot of your time future planning this might be tough, but what are you missing in the meantime??

Maybe recent events have me a little nihilistic but...we plan, God laughs. I think the joke is on me 😻😜

I absolutely agree, you just never know, although some people find more comfort in knowing that something is statistically less likely, I tend to be afraid of becoming "the unlikely statistic" and be the person who gets a rare disease or gets into some weird accident no one expected... I think because that's something you can control the least so it feels most scary.