I have decided not to ask anyone for help for anything, for a while. I just feel like I am constantly asking for help, begging for support, needing, needing, needing. If I want to get in the truck, I need help. If I want to do something on the BBQ, I need help. I ask for help with my laundry. I ask my guests to help in the kitchen, to cook, to clean. I ask my friends to take me places, to pick up things, to help with repairs in my home. I ask. I ask. I ask. I get turned down, or I feel like people are helping out of some sense of obligation, some sense of pity.
It is the most difficult thing with this disease, this constant need for more and more help. I no longer dress myself. I no longer clean my own home. I no longer visit friends in their homes. Everything revolves around my inability, my need for concession, my need for help.
Each day is a bit of grieving for a loss, sometimes a big one, sometimes a small one. This grief, this sadness, never goes away. This is not depression; it is sorrow. As the song says "I feel like a part of me is dyin'." Except this is no song, this is my everyday reality. A part of me actually is dying. With each of these small deaths, I need more help. I become more needy; physically, emotionally, financially.
What have I become? What kind of man am in now, afraid of so much, asking for so much? My image of myself has become so lost in this cruel reality, my mind and spirit detached from my failing body. I am not depressed right now, not over this. I am just sad at what I have turned into. I look in the mirror, seeing someone I don't know, someone I don't recognize. I don't know that person, not at all.
So, for a while, I am simply going to throw my needs into ether, asking nobody, expecting nothing, waiting for nothing. I will do what I can. What I cannot do, I will find other ways of doing, other approaches to living, other ideas to get what I want. This is as good as it gets these days. Until something else is taken from me. Then, I will need even more. Then I will be sad again, lonely again, afraid again. And I will have to start all over, again.
No two ways about it, this disease is nothing but a downward spiral. Nothing about ALS is easy,
ReplyDeleteor fair... my husband slow as it is, progression
Always gives me a reality check. Mentally I hope tomorrow's a better day for you.
To 3 1/2 years I had to move into a nursing home. Still very difficult to be so out of control. To have to eat the food here is one of the most depressing things. Blew up at a friend today who said I should learn to like it and clean my plate! The loss of control is one of the hardest things ever and I don't think anyone can truly understand it until they go through it. Good luck, my heart goes out to you.
ReplyDeleteI don't have ALS but have been paraplegic since I was 17. It's been 37 years and some people cannot understand why I am tired, why I feel sad, why I have chronic pain ( and why I take meds for pain...)and why I have depression and all . Yesterday a dear friend said : starting tomorrow you won't ask for anybody's help ( unless it is a therapist, a doc, etc). You say you have nobody, you won't need anybody.
ReplyDeleteAnd if you need home care, ask! Whatever you need ask your doctor. Ask those who can give you what you need in a professional manner. Because, at least with me, everybody, one by one, left and keep living.
On the other hand, there might be the few of the few who will show up offering friendship. I am one of those crazy people who like to help their fellow humane being.
It wasn't always like that. I was way too much selfish like most humans are. But suffering allied to....let's call more suffering, is calling more and more attention to other people's suffering.