Note: this was written about the several months when I was completely bedbound before I received the wheelchair; we asked people to visit us, but no one would. Friends of many years dropped away when the going got tough. Day after day of lying in a single spot with almost no contact with the outside world messes with your mind and well being like nothing else, similar to the disorientation people get in ICU.
I know much of this venting here is a repeat of other things I've said, but I just needed to bleed here. Before my son's concert tonight, someone mentioned how the Caring Committee at the school has helped all the parents with chronic illness or with other needs (one woman's husband died this year). This help is extensive and people are scheduled at specific times, all very organized. All except for, yours truly... So venting here...this is representative of many of our networks, you can apply it to our jobs, our extracurriculars, our (former) church, most family, long-time friends.
Dear Caring Committee:
I am asking for honesty, not kindness: why won't anyone help us?
Here's what went through my head since we begged for company in December and January, since some of you called me directly and asked how you could help but didn't:
People think I'm lazy. People think someone, anyone, has helped out or visited. They think I'm a hypochondriac or have Munchausen's. They don't believe that I am ill. They don't believe I am sometimes seriously ill. They think it's too awkward to talk to a wheelchair user. They are depressed by being around me. They avoid me because of gossip about me. They don't like my husband. They are still angry with me about the tasks I could not accomplish. They just think I'm a total b*. They think that I'm more physically capable than I am, that I don't have to do without meals or dehydrate myself. They don't realize sometimes we are living in squalor (well, not quite, but it is really out of hand at times). They think we have a pattern down and can handle it. They just think I'm a complainer. They think we have bad karma. They think I haven't helped out enough people. They think an ongoing illness is a deserved punishment and that I'm someone to avoid. They think I've adjusted to everything and don't need human contact.
And I continued to be bedridden then. It wasn't over. I just didn't keep asking, not after being turned down or ignored so many times.
My children have lost most of their friends (they have two each). My son hasn't received a party invitation in two and a half years and has only been invited to someone's home once. He's either a terrible kid or I'm a terrible parent, or both. People in all of our networks dropped us, not just fellow parents. Our children are having to do a quantity of tasks no child should have to do. My husband can rarely sit down except at work. My daughter looked back at me with pain in her eyes tonight when you talked about all that's been done for others, as did my husband. They're alone. It's not just me.
But I was suicidal, I wanted to die. The aloneness, the solitary confinement, was truly killing me. Where were you? We were friends. You've left me behind. I couldn't cope with the same four walls all day, every day, just me and the computer (when it was working). I begged for help, for company. You all let me know that you were going to lunch the next day. You let me know you were going shopping and to fun nights out. I didn't complain. I didn't ask for much. I didn't ask for meals or maid service or help with housework or laundry, as you've been doing for other moms. I just asked for a little company. My house is on your way to and from school, on your way to lunch.
I definitely am not asking for help from other parents now--we'll muddle through, as we have. There's got to be something sadly deficient in my character or our family for people to want to avoid us this much.
This week someone asked me in a pointed way what I had done for Scouts this year. I said that I had been on bedrest and we need help. No answer. What I should have said is that being there at all for my son was extraordinarily difficult for me, that's all I could do, with all the strength I could muster, to attend two events before I got the wheelchair. I was dying from the pain. Others complained about the food or the way this or that was handled. I was grateful to be able to leave home for the first time in months.
One of my friends is going to help with some things when my husband has long days, one person wanted to help recently but got sick herself, my mom helps out as she can. We can get some household help for a while--but at the cost of a van. I see that slipping away.