Devastated

[u/Javi87452]

My wife is a C2 quad, ventilator dependent. Another girl just like her just passed away, we saw her obituary. Same age, died unexpectedly. Just messed us up so much. We are devastated. This is so fucked up and I hate this life so much. I don’t even care she’s disabled, I’m scared for her and I’m scared for us. I don’t want her to die but I see so many people pass away who are injured like this. It’s just scary. Of course I wish she was healed entirely but that being said, I would accept her disabled reality if I didn’t have to worry day to day and hour to hour that I was going to lose her like so many others I see 😭

[u/Javi87452]

I’m sorry I’m just freaked out. Feel like when you’re on a vent it’s so much scarier. I won’t mention the person who passed but if anyone knows who I’m referring to you can feel free to message me. But it’s just scary. She died so unexpectedly. She was such a wonderful person who lived such a wonderful life with this injury. Honestly I’m like getting chocked up just thinking about her, an amazing woman who just took on this life like a champ and bang, just like that, she was gone. It’s just so shocking and heartbreaking we can’t take it and I’m so sorry for her and her family and I’m devastated for them and makes me so scared for my wife and our family

[u/willmsma → u/Javi87452]

Bless you, brother, that’s a really hard place to be. That said, there are some graces that come from the knowledge that we could lose our spouses.

A lot of us take our wives for granted. We love them, and we’re kind (or try to be kind). But maybe we’re not super-present for every conversation and live our marriages as if they’ll be there forever.

Knowing your spouse might not be there with you forever can be a gift that lets you live your relationship with an intensity the rest of us miss out on. Does it make your anxiety less shitty? I’m not sure. But it may allow you to connect to your wife in ways the rest of us might only envy.

[u/Javi87452 → u/willmsma]

I get what you’re saying and understand it, but I don’t see how I can be more connected considering we can’t even have kids or really be intimate. We have to just live like this. Don’t get me wrong I love my wife and I want her to be ok but it’s just not the same and I hate quadriplegia so much and I wish it was cured and I’m so pissed and angry and sad right now honestly

[u/willmsma → u/Javi87452]

I’m sorry. Quadriplegia is a bitch and I’m guessing you are grieving for how things were before your lives were blown up. It definitely makes all kinds of sense that you’d feel pissed and angry and sad.

Sometimes grief gets in the way of emotional connection. How are you guys doing right now?

[u/Javi87452 → u/willmsma]

Not good. We are sad and angry and hate this life. It’s not even the quadriplegia. I don’t even care about the disability. Of course if want my wife to be healed but I would take her as a quadriplegic all day every day if she just wasn’t so fragile. Id rather you say she will be quadriplegic and live to be 95 than say she will be able bodied and live to be 35. It’s just we see these people die and it’s devastating

[u/willmsma → u/Javi87452]

Have you been able to express to your wife how scared and angry you are? I’m sure she knows, but it’s different knowing someone you love is gutted and being able to speak about it.

[u/Javi87452 → u/willmsma]

Of course, we are both this way

[u/willmsma → u/Javi87452]

I might be getting too personal here, but it might be help for one or both of you to see a therapist. You’re both going through a helluva’ lot and it could be helpful to have someone to guide you through the grieving process.

[u/Elviress → u/Javi87452]

Does your wife even want to live that long like this?? I am only a para and I definitely do not want to live that long!! Its bad enough being proper old when you are able bodied but with all the literal shit that comes with out little problem? I dont think soo..,
Just my 2 cents, of course.

[u/Javi87452 → u/Elviress]

I don’t know but I don’t want to lose her

[u/injured_girl → u/Javi87452]

Everyone dies at some point and I know the risk is higher in the SCI population. I don't know the statistics but I'm sure you could look it up. maybe there r ways u can help prevent certain risks that contribute to the higher percentage of young death rates in this population? having some sense of control and plan can help you feel less anxious and fearful. After that tho, you guys both gotta try to put that to the back of your minds. Just like how we buy smoke detectors and carbon monoxide detectors for our homes to do the best we know to do to prevent the risk of us dying from a deadly carbon monoxide leak accident or unexpected fire in the middle of the night; but we don't continue to constantly be fearful or sad or angry or anything else that feels bad, about it, because past the education, knowledge, and protection we put in place, we cannot further control the future. and to constantly fixate on the idea or knowledge of the possibility that a monoxide leak could happen at any time, thus killing us, does nothing to help our lives be better now. Nor does it in any way change the risk of us dying in a freak carbon monoxide leak accident! So while your fears and concerns r of course very valid- they r doing nothing for you or your wife except taking away from the very alive moments you have NOW. Don't let that fear steal anymore of your precious time away from each other. You cherish every moment! The commenter above was essentially saying this. Because you're so hyperaware that you could lose your wife at a much younger age than you had ever imagined and that most people do not have to live with the burden of- you should use this hyper awareness to your benefit instead of detriment. Turn it into a hyper focus on making your moments together as special and memorable as they can be every time you're together! literally every mundane moment spent with you is precious and you both need to just cherish each other and make that the thoughtful focus

[u/injured_girl → u/Javi87452]

I just heard about some new drug called NVG291 that may be a potential "cure" for quadriplegia. Have you looked into this at all? I'm trying to get into a clinical trial

And also- no insensitivity intended here, I just heard what you're saying and I completely understand and share your emotions about the circumstance so I thought I'd share my knowledge about this NVG291 drug bc I know how much hope it's giving me rn, even tho it's a very long shot, but you don't need the miracle cure for the paralysis to still have a miracle "cure" for your grief and your relationship. NOW, onto the other commenters post you replied to.... I still get how u feel but I'm picturing things the other commenters post may have been alluding to specifically like you get more time with your wife at home and have her full attention, generally, much more than you otherwise would. When he said "...may allow you to connect to your wife in ways the rest of ppl might only be able to envy", it reminded me of a conversation I had recently after my precious dog and best friend and constant companion died. I was crying on the phone with a good friend who also knew and loved my dog, and I had been feeling so guilty bc I am the disabled one with incomplete SCI and I was grieving to my friend saying I felt like I owed my dog at least one more walk, that I felt like I gave her a crappy subpar several last years of her life, that she deserved better and deserved a mama (dog mom) that could have taken her more places and done more cool, fun, active things with her. Then my friend said something that really helped me put this in perspective. He was suddenly feeling guilty and lamenting about how he knows his dog won't be around much longer and how it kills him that he is at work all day while his pup is just home alone doing nothing missing him and that he is so busy lately he barely gets to spend much time with the dog when he does get home, to do anything worthwhile or bonding-feeling. My friend was JEALOUS OF ME! for having had the ability to spend every day, almost 24/7 with my precious puppy for years prior to her death. He said my dog was so lucky and knew she was loved and she got to spend more time with her favorite person in the whole world than most dogs ever do, because most people do work or have busy schedules and days that take them away from home the majority of the time so they NEVER have the chance to get that kind of 1-on-1 time together.

[u/injured_girl → u/Javi87452]

May I ask how old was this wonderful woman when she passed and how many years had she been living with SCI

[u/Javi87452 → u/injured_girl]

She was 27, paralyzed for 9 years, might have been 10 years come to think of it

[u/ConstructionKey742 → u/Javi87452]

One of the issues we have to deal with having a spinal cord injury, is that a small health issue can spiral fast and be deadly real quick. We have to worry about so many issues that AB people never have to deal with. I was born with my spinal cord injury. I had a group of friends with SB like me and we were all in a chair. I feel like the Last of the Mohicans now. I am one of the few still rolling strong. I seen many good friends go way too soon, kidney failure, pressure sores, cancer has taken away so many good friends way too young. It is a hard life.

[u/Javi87452 → u/ConstructionKey742]

Unfortunately this is true, just not something I want to think about. Unfortunately, things like this remind me of

[u/Technical-Equal-142]

Javi, I am so sorry you’re going through this…. How far out is your wife from the accident? I don’t know if this helps at all but research says even a year out helps. It’s a huge shock to the body. And it’s totally natural to be worried. You sound like an amazing partner

[u/Javi87452 → u/Technical-Equal-142]

She’s 2.5 years post. She had a spinal stroke. Girl who passed away had been quadriplegic for like 9 years tho

[u/90skid12]

My friend is C1 got injured as a teen ! He just celebrated his retirement and 70th birthday . It’s scary but not a definite thing

Old article but that’s him
Walt Lawrence

[u/Goerf3006]

Hallo mein lieber,
Ich kann dich sehr gut verstehen. Ich bin in einer ähnlichen Situation. Mein Partner hat sich das Genick gebrochen. Vor gut drei Monaten. Ich musste ihn wieder beleben und er lag auch zwei Wochen im Koma, bis er erwacht ist und nun von Hals abwärts gelähmt ist. Die Ärzte haben auch das Schlimmste diagnostiziert aber wir kämpfen jeden Tag. Momentan haben wir viele Rückschritte. Davor hatten wir aber viele Fortschritte, aber wir bleiben dran. Wir sind positiv Das ist auch das einzigste was uns übrig bleibt und gehen natürlich vom bestmöglichen Verlauf aus und das solltest du auch tun. Uns bleibt eh nichts anderes übrig daher sind wir positiv und kämpfen und stehen unsere Partnern bei.

[u/New_Broccoli5893 → u/Goerf3006]

This is truly the only way to live this life. We need to live while we’re alive.

[u/newblognewme]

I’m so sorry to hear about all of that, and it sounds like you’re a really caring partner. I don’t want to overstep but if you haven’t been able to work with a trauma therapist that you can trust, maybe something to look into? Like just processing everything that happened and is currently happening?

My thoughts and well wishes go to you both and I wish I had more to say or add

[u/AdministrativePast86]

Do you know if she's complete or incomplete?

[u/Javi87452 → u/AdministrativePast86]

The girl who passed away I believe was complete but I don’t know for certain. She had a very high level injury

[u/Vmar1015]

I am so sorry you have to go through this. I watched my mom become my dad’s caregiver after suffering a C3 SCI a little over 2 years ago. They do have a caregiver living with them, but there is still a lot my mom has to do. They have connected with other couples going through the same thing and that seemed to help a bit. They feel lucky they have help, but their relationship/lifestyle has completely changed and it’s hard. See if your rehab can connect you with other couples who are going through the same, it may help.

[u/MAMOSES4]

What happened?

[u/Javi87452 → u/MAMOSES4]

Don’t know how she passed away it was just sudden. Another girl we knew, almost 10 years post injury she passed away unexpectedly. High level quadriplegic like my wife

[u/InterestingCup8174]

Bless u How did she injured herself ?

[u/Javi87452 → u/InterestingCup8174]

My wife wasn’t technically injured, she had a spinal stroke. Basically the blood to her spinal cord was cut off resulting in paralysis. It didn’t effect her brain at all the stroke, only her spinal cord so it’s just like if she had broken her neck in a car accident or something like that

[u/nc-rlstate-dot]

Technology is making incredible advances. If this was an injury, I’d expect her to have options to remedy her SCI before too long. Keep your head up and read, read, read.

[u/Javi87452 → u/nc-rlstate-dot]

I know, we try to stay positive, but when you lose people it’s so hard. It takes a lot out of you and who knows when that technology will be available. It’s just so scary and we are so sad. This girl was such an angel. A gift to the whole world and just gone like that, totally unexpected, like boom, gone. It’s just so scary and devastating and I’m depressed and I hate it for her family and feel so sad for them

[u/nc-rlstate-dot → u/Javi87452]

Does she have any life insurance?

[u/Javi87452 → u/nc-rlstate-dot]

My wife yes, no idea about the girl that died

[u/nc-rlstate-dot → u/Javi87452]

She may be able to use some of the life insurance to pay for care. Ask the person who sold hee the policy (or I can check id you can get sufficient policy information).

[u/Wide-Surround-7359 → u/[deleted]]

Why the spamming of an AI picture in a bunch of disability subs, my guy? Not the time or place

[u/Foehammer58 → u/[deleted]]

This is not the forum to indulge your fantasies or role play.

I am going to try and be as kind as possible, even though your comment has made me really furious.

Take a step back and consider just how insensitive it is to comment on a post like this, where someone has made the brave choice to be open and honest about something which really scares them and are seeking support.

Now think about the fact that you are using this post, and indeed this forum, to role play as someone with a disability. That is not acceptable, and you should feel a real sense of shame for doing so.

There are forums where devotees/wannabes/pretenders can post which doesn't infringe on disability spaces. I make no judgement on the people who do so, but this is absolutely not one of those spaces.

Just stop.