Friday, September 26, 2008

It seems I'm still a little pissed

If angry ranting turns you off, this might not be a good day to read. If you're reading this via LJ or a reader, sorry the whole thing is visible! Readers of the blog have the advantage of a cut.

It's weird how something will come at you out of left field and remind you of old wounds, pouring into them a little metaphorical salt, and suddenly, you're pissed at something that happened years ago (but was never resolved). That's me today. There was this very simple question on Ravelry the other day, simply asking for recommendations for yarn to knit chemo caps. And just like every other damn thing (on any forum, really, not just Ravelry), someone comes out of the woodwork, not to answer the question, but to ask what the point is. And there are tangential/meta discussions wondering if knitting for sick people is offensive because we should really be driving them to the doctors and cooking for them, and shouldn't assume that they want chemo hats or prayers shawls or socks, and shouldn't they try to be more fashionable anyway?

I had to add to one of those discussions because, while I couldn't knit for my mom when she was sick (I didn't learn until years later), I remember how much she loved hats. She decided against wigs and scarves, and would probably have gone bare-headed, but she was always cold. Always. So she wore hats, and loved them! She stole at least one of my cool winter hats, and we were always looking for cute, soft and warm ones for her. I hate the idea that some stranger sitting in another life, in another part of the country/world would declare that Mom should really have been more worried about her appearance than to wear a hat, indoors, letting everyone know she had cancer. (If a person that is losing their hair to chemo doesn't like hats, by all means, they shouldn't wear them! But no one else should have any say in the matter.)

It's very true that knitted gifts aren't the answer to every crisis. But from a long distance or, if closer by, in conjunction with a cooked meal or a ride to the doctor or something, the gesture can help both the knitter and the recipient. Most of the participants in the main thread were more than happy to suggest yarns and patterns. Some of them are cancer survivors or are fighting cancer now and were able to add some genuine perspective. Overall, the discussions were positive, but it's got me thinking.

The short version (which has nothing to do with chemo caps) is: even if you have to write it down in your calendar to remind you, don't forget about sick folks after the initial crisis has passed, and if you know them too, don't forget about the caregivers! The long version is below.

The talk of providing meals, etc., led me to remember the early days of my mom's illness, when both our church and my brother and SIL's really came through. Of course, after several days that kind of thing stopped, but I don't think anyone expected to be fed by others for weeks or longer. What I didn't expect was to be all but forgotten in a matter of weeks. In that area, my mom fared better. She had close friends who were stayed in touch and checked in. After awhile, hardly anyone from the church called or visited, and that was disappointing, but not a huge surprise (said the cynic). There was one member of the church staff who made it his personal mission to visit my mom every week. He genuinely liked talking with her, and frequently brought his young son. (So he could meet a saint, the man said once. (My mom was no saint, but she was very generous and sweet to others.)) When he left the church, that was the end of the visits.

Meanwhile... a month or so in, I was persona non grata to my church. My mom required round-the-clock company/care when she wasn't in the hospital, and we split it up. My typical day was: get up from my mom's house, go home and shower, feed Sheldon, go to work, stop for Chinese take-out on the way home, stop at home and scritch Sheldon (sometimes I took him with me), then go to my mom's (I lived 2 doors down), where I stayed until morning. A couple evenings a week, my brother and his wife stayed with mom, but I still had to go there to do her IV and then be back at 9 PM to stay the night. My dad was with her during the day (he worked midnights). I literally had part of Saturday and part of Sunday "off" (and of course still visited her). I came really close to having a complete physical and emotional breakdown, and there weren't many people that gave a damn. Honestly, I thank God my boss gave me the option of "go to therapy or you're fired." It probably saved my life. I know it saved my sanity.

Because I didn't go to Sunday School or regular services any longer, I was written off, and pretty quickly. Most people that I'd thought were friends, including some I'd known for more than a decade, were gone by the second week. The co-leaders of my Sunday evening group (our church was split up into "cells" for small home Bible studies) announced that I'd opted to join a different group (not true - they were just tired of calling me and finding out that I wasn't able to attend). Some hung on longer, but either couldn't take it or I pissed them off. Mom was diagnosed in January. By summer, I had - quite literally - two friends (who hated each other) up until my mom passed away more than a year later.

There were two friends (the ones that I think I drove away) I was able to patch things up with later, and I'm grateful for them. The rest, screw 'em, because if they could walk away just because I couldn't attend church they were never real friends, obviously.

By Easter, I was done with church. They wrote me off first, but church had always been a big part of my life and I wasn't able to give it up so easily. But, Easter came that year and I found myself looking forward to hearing the traditional message. I thought it might give me some hope/peace. I guess it might have, if the pastor wasn't so attached to his serialized sermons. He wasn't about to hit pause on the next one in the series for Easter, so I sat there - for a few minutes - as he preached about something (don't remember what exactly), and started talking about cancer, and then used my mom as an illustration. I was up and on my feet and to the door before I knew what I was doing. I heard someone calling to me, but just kept going. I got home to find a tirade on my answering machine, from the intern/junior minister who had chased after me. (Also, someone I'd babysat for when I was a teenager.) I got quite an earful about what an ungrateful person I was, how he prayed for me, how no one would visit or call me unless he made them, etc. He named names -- said that the two friends I mentioned in the paragraph above had to be forced to call me. (Not even a little true.) Since that day,
I've only stepped foot in that place for my mom's funeral, two weddings and a baby(?) shower.

When my mom's cancer went into remission, she wanted to go to church. She knew she'd been forgotten, and was hurt, but was too tired to find another church, and HAD to go to church.
So, I'd drive her over, get her seated (they were nice -- found a recliner for her and set it up so she could be comfortable) and went to my car to wait until it was over.

Her dying wish was that my dad and I would try church again. Dad tried at the same church. He'd come in after it started, head for the balcony, and leave before they were done with the final hymn. It was just too hard for him I tried another church, and attended for at least a year, even getting involved with the music ministry (I used to be able to sing a little), but couldn't stay after certain events. (This story is already too long to go into that.)

For weeks after mom died, the (new) pastor of the (old) church visited my dad, and always asked about me, wanted to talk to me and see if I would come back. My dad wouldn't put him in touch with me, but told him he'd pass on the message, which he did. Finally, to get my dad some relief, I wrote the pastor a letter, explaining all of the above. I made it clear that I had no intention of coming back; but
I explained my suspicion that a lot of this was probably a result of everyone assuming someone else was doing it. I begged him to consider rethinking their shut-in/sick program, and to not forget the caregivers. I never heard back.

In closing, in case people wonder why I don't go to church, this is it. It's why I still get sad and hurt when I get reminded of all the peripheral stuff around my mom's illness. It's why I hope against hope that I don't ever forget to check in on someone going through a rough time. And, oh yes, why I still wear a little chip on my shoulder. I lost more than my mother during that ordeal. I lost most of the support system I needed to get through it.


gwensmom said...

When my dad got Alzheimers most of this friends, golf buddies and patients disappeared. But a few didn't and I have never forgotten it.

I expected the same thing to happen to us when Gwen was born with so many health problems. But it didn't! My church stuck right there with us and still does. It made such a difference and I wish you had had this kind of support when your mom was sick.

Katy said...

My dad is a Lutheran Pastor. My mom got sick 15 years ago with Cushings Disease and my parents both had to leave town for about 4 months while my mom was in the hospital getting the surgery and care she needed to get a handle on the life threatening disease that was crippling our lives as a family. I was 14. You have no idea how disappointing it is to see how few people will rally around you when you are still so vulnerable to the ways of the world. My desire to belong and to be supported by the church died shortly there after.

My brother still takes active stance in the church. My dad is still a pastor, my mom is still there every sunday supporting him. But we as a family have fewer friends who we let into the inner sanctum.

I don't attend church. I find respite in my knitting and other quiet contemplative moments I find in life. Some find solace in church and going to church, others often run. Life changing events show you who your friends are.

My parents are going though another change just as dire as getting sick. My dad will loose his position/job at the end of this year. Merry friggin Christmas. Again, this is a sign of who true friends are. It is alot of the same people who stuck by us when mom was sick (the friends from outside the church).

I feel your pain when someone says that why do sick people need care.. That's when Humanity needs it the most. I donate to the chemo caps thing, and I also make Prayer shawls (just the name of the pattern) for those sick in the hospital. I take time to visit friends when they are sick, cause mine weren't there when I needed them most. I genuinely listen when people tell their stories. It's part of life, and someone.. ANYONE should listen. It will make that one person feel better.

Oh, I also made some of the fake boobs for the breast cancer walk. The survivors got a kick out of them. I got asked to make more for next year. It was a pattern posted on

Yours in sympathy and understanding.

turvid said...

*virtual hug*