Thursday, May 13, 2010

Honesty, Not Kindness

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.


yanub said...

Sorry I haven't been around the past few weeks. I've been pretty much coming home and conking out, too tired to respond intelligently to anyone. But I have been wanting to talk to you! Don't ever think there is something wrong with you or your family that you somehow deserve the maltreatment your community has given you.

FridaWrites said...

Oh, yanub, I know people get tired or can't respond--I've been having difficulty getting much done in any capacity other than being up lately. I've been hesitant to make more direct requests of non-internet friends because I can't know if someone is too overwhelmed already (lots of people work or volunteer in extreme capacities). It seems to me that a lot of people do way too much. But when there's help that's been organized and people are signing up and I've been left off... My internet friends are there for me, even if they can't always be.

FridaWrites said...

Oh, and as far as being left off goes, we directly told a lot of people we need some help or at least some company. Some of these are helpers on this committee.

Lene Andersen said...

So sorry that you and your family are feeling left out of the "Caring Committee" - not so caring, after all, are they?

People don't get it. Or maybe it's that when things get hard or require us - not us, as such, the generic us - to stick with something/someone while going out of your way to lend a hand or an ear and do so more than a few times, we/they wander off. When my RA flared and the many years after after it took for me to get back on my feet, I lost many friends, as well.

Can't believe these people in your network let it ripple to your kids, as well. That's low.

FridaWrites said...

We do have some helping us--I should say that. My parents are, my grandmother called in to check on me, and one friend from school woke me up at 6 am to ask about taking the kids to school when my husband was out of town.

I also have other friends who are not local anymore but would be here if they could (and I with them). Some of them I can't see regularly (and some are working multiple jobs--very understandable, their busyness) but they are always there for me if I call on them.

Human contact, though, wow. Things have improved but late Dec. through mid-March I could have used more visits from people. Heck, we'd have made *them* dinner!

Elizabeth McClung said...

It makes me angry, that your children are being left out, are being left out of parties because their mother is not cool, or has some rep. That you have become the 'Boo Radley' house, when instead of being left alone you WANT contact.

The guilt too, that they try to throw in your lap (and where as much as we try to dump it, it remains) that it is OUR fault. Someone getting ill, chronically, quickly ill isn't enough, suffering isn't enough, losing our dreams isn't enough but the stealing bits of the dreams of those we love because others just don't care enough to find out the reality of situation, or have the 'What have you done for us lately' attitude.

However, bodies run by the able bodied, for the able bodied, with standards set by the able bodied usually mean you are supposed to be TRYING to be able bodied (and see, you aren't trying to do scout things! You are actually being just chronically ill and taking care of your famiily - bad you!) - they are always self congratulatory. And those who openly help the 'disabled' are worse, with condescention mixed with the 'look at me, how noble I am, I didn't just help a friend or a Christian....I helped a CRIPPLE!'.

There is something pathetic that I could get more help as two able bodied Christians than we could as a disable Christian. But then, in our last church Linda was the only person to EVER visit the 4 people read weekly on the 'housebound' list, who had been for YEARS before we came.

Please, vent more!

FridaWrites said...

The Boo Radley house--I guess that does explain all the doorbell ringing and running, lol!

Yes, I do get the sense that while some people understand, others don't get it at all. As one person said, she wants to see evidence of someone's abilities, not disabilities--what they can do. ...said when I got out for the first time for nonmedical reasons in three months.

Thank your for listening and understanding--I worried about venting too much. It just hurts a lot sometimes.

I know Linda's visits to those people stuck at home meant a whole lot to them.