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My dad died and I am sick of being disabled

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  • My dad died and I am sick of being disabled

    Maybe someone else can relate. Most of the time I am ?ok? with being disabled. When shit hits the fan I am not ok with it at all. My dad died on Aug 7th. I knew it was coming, but still. I can?t do what I would want to do in the aftermath. I can?t go on a solo road trip, or go anywhere by myself, really. I would have wanted to go on a walk about. Instead I am in my room, looking out the window. Occasionally I look at nature photos online. I feel so trapped. My condition is degenerative, and it?s taking the use of my hands and arms now. Stress makes it worse, so I am feeling weaker that even a few days ago. To make things even worse (they can always be even worse) my dad died the night before he was to sign paperwork setting up a special needs trust for me. So now it will be years, lawyers will be involved, hopefully I won?t lose my Medicaid, etc. My disability has even infiltrated this. I am so fucking sick of it all.
    chair user since 2009 from a neurological disorder

  • #2
    Sounds like you are in a dark place. Get a grip on yourself and begin to formulate a new plan with your self. Situations can mount up and consume any of us. Everyone of us on this forum is tired of being handicapped. Everyone of us has been to the point of where you are at right now. Chin up, make a plan to get things straightened out. You know you can do. God bless.
    I refuse to tip toe through life, only to arrive safely at death.

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    • #3
      Oh I'm so sorry. My condolences on your dad. Lucky to have that close relationship for so long .. but it will be a long time before you can see the positive. The pain's too fresh and raw.

      There may be another relative that steps in to take you places .. or you may meet a new friend. We can't tell what the future will bring.

      One day at a time for now. That's a great way to manage stress. Take extra care of yourself and don't worry about the future (too many of us do it).

      Came back to add ... I could do nothing when my mother died. Small town - inaccessible funeral home (had to be lifted in/out but they have a ramp now). Couldn't choose flowers or casket. When they were lowering my mother into the ground, my dad leans down and asked if it was alright? What was I going to say? No!??!? lol
      Last edited by lynnifer; 08-11-2018, 01:16 PM.
      Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

      T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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      • #4
        I'm so sorry about the loss of your father, Sarafino. You won't be able to think clearly for awhile, so be gentle with yourself - as lynnifer says, the pain is too fresh and raw for you to have perspective on what's happened. One day a time is good advice.
        MS with cervical and thoracic cord lesions

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        • #5
          Sorry for your loss. Take your time and allow yourself to heal. <3

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          • #6
            OMG, Sarfino you are living in a nightmare. I am so sorry for you. Whatever your best second source of strength was in the past, lean there now.
            I have had periodic paralysis all my life. I lost my ability to walk in 2011 beginning with a spinal block, which was used for a hip fracture caused by periodic paralysis.

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            • #7
              Very sorry for your loss.
              As others have said, give yourself time to grieve in whatever way you need to.

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              • #8
                We are be people who experience a lot of loss, but this sounds extraordinary.
                I've had my share as well, like losing my son at 23 years.
                I'm a sober alcoholic; that makes things simple! Every day, when I get up, I choose whether to live or to die. So far I've chosen life no matter how difficult or painful.
                Normal people, it isn't so black and white. You have the luxury? of not handling things. Life is difficult. There will be inevitable grief, but the suffering is optional.
                I truly hope you work your way through this and if so, some day you will see the parts of it that were gifts, maybe from your father or your life force.
                Good luck on your travels!

                Seems from your post and bio you're a nature girl that's lost her way into the woods. Me too.
                You're looking at nature photos. Consider this nature-boy's answer to losing the stream, the rocks, and the creatures.
                I keep three planted freshwater aquariums. I brought the stream inside. I spend a lot of serene time watching things grow. I recommend it highly.
                You can start with a complete 10g setup for <$150, complete except inhabitants. Mine is called Bathroom Biotype. You'll never guess where it is
                69yo male T12 complete since 1995
                NW NJ

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                • #9
                  We are be people who experience a lot of loss, but this sounds extraordinary.
                  I've had my share as well, like losing my son at 23 years.
                  I'm a sober alcoholic; that makes things simple! Every day, when I get up, I choose whether to live or to die. So far I've chosen life no matter how difficult or painful.
                  Normal people, it isn't so black and white. You have the luxury? of not handling things. Life is difficult. There will be inevitable grief, but the suffering is optional.
                  I truly hope you work your way through this and if so, some day you will see the parts of it that were gifts, maybe from your father or your life force.
                  Good luck on your travels!

                  Seems from your post and bio you're a nature girl that's lost her way into the woods. Me too.
                  You're looking at nature photos. Consider this nature-boy's answer to losing the stream, the rocks, and the creatures.
                  I keep three planted freshwater aquariums. I brought the stream inside. I spend a lot of serene time watching things grow. I recommend it highly.
                  You can start with a complete 10g setup for <$150, complete except inhabitants. Mine is called Bathroom Biotype. You'll never guess where it is
                  Attached Files
                  69yo male T12 complete since 1995
                  NW NJ

                  Comment


                  • #10
                    My other one is a little bigger:

                    CripZen it's called, and a great place to retreat to. There's so much going on, you just need to get present to it.
                    I spend at least an hour a day with it. It certainly shuts down my freight train brain for a while, just like nature used to.

                    I know you're probably in no place to think about this now.
                    I hope you go (grow?) through this loss and find your bliss. Sometimes life seems impossible for us.
                    And sometimes there is great joy.
                    Be gentle with yourself, and be generous.
                    It will get better
                    Attached Files
                    69yo male T12 complete since 1995
                    NW NJ

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                    • #11
                      Pfcs, thank you. We are indeed people who have experienced a lot of loss. Sometimes it feels like I have lost too much and I just can’t do it anymore. Most of the time I choose life, but if I am being honest there are times I would choose death if it were easy. I made a promise to myself not to take myself out while my dad was alive. Not sure where I sit with that now. I also never planned for this part of my life because I thought when I started having significant issues with my hands and arms I’d kill myself. Yet here I am.

                      Many decades ago I had a freshwater plant tank. At that time I lived in a small city with no view. I moved in 2001 and am incredibly fortunate to have lovely natural views. Most days from “my” room I can oberserve deer and other critters. Lately the does have been bringing their fawns out. There is nothing more adorable that fawns running and playing. So I do have that, but still, I used to do so much outside and for a variety of reasons not all related to my disability I just don’t get to do as much as I would like anymore. There is something about moving through the natural word, like walking, driving, horseback.....that helps with the “freight train brain” as you call it I just wish I could be doing that, now.

                      I partly suspect my dad had some help exiting. He never wanted to set up a trust for me, and was deeply embarrassed by disability, illness, emotion, etc. He had cancer and had fallen the day before. The hospice people had brought a walker but he refused to touch it. He was fine the day before, drove himself to Walmart and everything. My suspicions only make me feel worse about my disability and that in some way I was the cause of his death. If I hadn’t of set the wheels in motion for this trust he would still be here, for a bit. Of course I am not saying this to anyone in my family.
                      chair user since 2009 from a neurological disorder

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                      • #12
                        Sarafino-you aren't that powerful. Please let it go! I guess even adult children may take on their parents behavior, like when they feel responsible for a divorce.
                        As I said before, it get's better. Don't leave five minutes before the miracle! (and I'm an atheist!)
                        Put one foot in front of the other and do something. Recovery implies action! You can't think yourself into good behavior but you can behave your way into good thinking!


                        And, one thing about keeping a planted tank: you won't be a spectator, you will be connected with, and cause in the matter of, the life inside. It's different than watching
                        69yo male T12 complete since 1995
                        NW NJ

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                        • #13
                          Atheist here, too. I probably won’t be able to let go of my suspicions. This was an ongoing thing my whole life, my dad was very uncomfortable talking about my disability and nothing in the world was worse to him than being disabled. At any rate, I am going to try to do some art stuff today which is a whole other story of loss. I can still do some stuff with my hands, but I know the day is coming that I will need to start learning to do it by mouth. Some days that is ok, even something to look forward to, and other days I just want to bail on the whole thing. I thank you, though, for your thoughtful and heartfelt comments. Perhaps someday I will get another tank. I love reef tanks, but those are not for beginners
                          chair user since 2009 from a neurological disorder

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                          • #14
                            My dad thought I would never amount to anything and told me such after the chair at 12. What a thing to tell your kid.

                            That you miss him and he did things for you speaks of the love he had for you. Do you have siblings? Maybe that's why the delay on the trust.

                            You're going to need months to heal from this and it sounds like you're doing the right thing via 'art therapy.'
                            Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                            T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                            • #15
                              Your signature indicates you are married, but you haven't mentioned that in your posts. Possibly you have not updated that part of your signature for some time. If you are no longer married coupled with the death of your father, you have a lot of loss to deal with. Sorry that you have these loses in your life and you are finding life difficult. I hope you find a way to cope. All lives matter, your life matters.

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