Well, I’m back. We got hit with the flu bug that’s going around. Gabby and I have been pretty much bedridden for the past couple of days. I feel better today, but still not 100%. I left off with such a downer post – but that’s just how I’ve been feeling lately. Dealing with my family feels like walking through a field of turnstiles, and all the turnstiles are made out of thin paring knives. Each movement gives you a tiny little cut, so tiny you don’t hardly notice at first, but the deeper you go into it the more you notice all the little cuts adding up to one bit messy wound. You can’t really maneuver to get away without getting more cuts. You’re trapped.
Seeing my sister over Thanksgiving was difficult. She has MS and right now isn’t doing very well. She is having trouble walking, she uses a cane most of the time, and she has difficulty with the left side of her body. She was wearing an eye patch for vision problems and I think she has been on Prednisone. For those of you not familiar with this drug, it’s a steroid used for many illnesses, but it also causes all kinds of side effects, including bloating and depression. My sister looks terrible. I can hardly understand what she is saying because she has such difficulty speaking. She has problems feeding herself and trouble with swallowing.
I think the thing most of us never think about – okay I will not assume everyone is like me – the thing I never thought about – was that people with disabilities have all the usual problems that the rest of us have, and then they have their disability on top of it all. So with all of my sister’s MS physical problems she has a huge helping of a dysfunctional family and all the wonderful problems that go with that. I’m talking about her immediate family – I’m not even talking yet about the rest of us – her extended dysfunctional family.
I could talk to you about this situation for days and still not be at the bottom of it. Before my sister was ever diagnosed with MS she was the breadwinner and caregiver in her family. My view of her husband is that he is basically a 15 year old in an adult body. My mom and I used to say it was going to take something tragic before he woke up and helped out – well here it is several years and several tragedies later and although he works, he’s just never going to step up and take care of his family the way they need to be taken care of. I guess he’s not equipped to do that. I’m pretty much over being pissed off about it – I’ve been angry about it for years. Now, I’m just sad.
Two years ago, her three kids (now aged 17, 10, and 6) came to live with David and I for half the year. I thought if we were taking care of the kids, maybe my sister and her husband could get their shit together. It didn’t happen. The kids wanted to go home, of course – they want to be with their parents no matter how screwed up their home life is. So they went home. About a year later, my parents went down and brought all the kids to their home to live because the children’s living conditions had become appalling.
I tried to get my sister to move up here so that she could be closer (I live about 3 hours away) and I could help her out more. She doesn’t want to leave. If she moved near where I live, I would have to go find her a place to live, drive down and pack her stuff and move her, unpack her stuff . . . basically live her life. I would do it too, if I thought that in the long run it would help. But everything I’ve tried to do in the past didn’t make a dent.
It’s just too much sometimes. I mean, I want to help her but I don’t want to live her life. I get angry that her husband is who he is – I get angry with her because she used to want more out of her life than this. Part of what she’s going through, I understand, I don’t have MS but I have health issues and it can make a person afraid, angry, and depressed. I get it. I really do. But I also think you have to keep going. You have to do the best you can for your kids if no one else. I get angry that she seems to have given up. Angry that she’s not the sister I used to be able to talk to. Angry that her youngest child will never know the fun, vivacious person she used to be. Never know how creative her mom was, how well she could style hair, or cook chili, or make crafts. It just sucks.
I feel like there’s a black hole in my life and everything is slowly getting sucked into it. Nothing is ever going to be the same, yet it’s not like mourning for a dead person. At least that way you have some closure I guess. This is like mourning a living person. Maybe people who have loved ones with Alzheimer’s can understand . . . maybe not. Maybe this is nothing like any of those things.
I know my sister’s situation is too much for one person, but when I’ve tried to help, or if my parents have tried to help, it’s like they’re all working against you. Like they don’t want to change. So I’ve tried to let it go. I realize that my sister is a grown up. She can choose to live her life however she likes. Just because she lives her life differently than I do doesn’t make it wrong. I understand that. I just don’t see that they are happy. I worry about my nieces and nephews all the time.
When I see them it breaks my heart. This weekend they came to my house with their stuff packed in Wal-Mart sacks. My niece, who’s in first grade, put on a pair of pajamas that was sized for a toddler. The cuffs that were supposed to go around the ankles came up to her knees. I looked in my nephews bag; he had accidentally packed a pair of his dad’s jeans and a couple of mismatched socks. He did have an outfit, but you can tell that these kids are on their own basically. This is their life, what they’re used to and what they know. I’ve tried to meddle and it didn’t help anything.
For awhile my sister’s MS might “get better” – it has periods where it’s worse than others. When it’s better, she’s more like her old self but it’s not ever going to be enough. I’ve realized that she doesn’t really know how to deal with a lot of life. I mean, there are lots of us that don’t know how to deal with life. We wing it and hope for the best. Sometimes it works out, and sometimes it doesn’t. Luckily, most us don’t have a crippling disease riding our ass at the same time.
If you’re not in the situation, I don’t know if you can understand the enormous amount of stress that everyone in it feels. I want to change everything. I want to wave a magic wand. I want my old sister back. I want the sister that could clean her own house. I want the sister that was my best friend. I want my sister that cooked and joked and fought with me. My old sister isn’t coming back. I can’t fix everything. I can’t fix anything. I’ve tried and it didn’t work.
I think about one of my earliest memories of my sister. This is when we were very young – like four and five. We were city girls from Denver and we went to Kansas to visit my aunt on her farm. My dad and some of my older cousins were going to go fishing in a pond nearby and took us with them. I don’t know if we wanted to go or if someone thought it would be a fun experience for us. We were the only girls and I’m sure we weren’t having fun and we had to use the bathroom so my dad told us to go back to the house. All we had to do was follow the cow path back to the farm.
I said I was a city girl. I had no idea what a “cow path” was, but I was scared of my dad and I didn’t think I had any choice but to do what he said, so we set out. I remember that the grass was so tall we could barely see over it, that’s how small we were. Well, despite my best intentions, we became disoriented. My sister stared to cry because we thought we were lost. I looked over the tall grass and I saw my aunt’s house far in the distance. I was holding onto my sister’s hand telling her over and over not to cry (even though I had tears in my own eyes) because all we had to do was keep walking and we would make it to the house – I could see it up ahead. I realize now, that she was shorter and could probably not see as far as I could. I remember so clearly thinking that we had to stay calm, well however a five-year-old thinks of that, and that we just had to keep going and we wouldn’t be lost. It felt like it was up to me to get us out of that situation.
My dad probably suspected that we wouldn’t be able to find our way back, and the fishing party came up behind us, calling to us. My dad was asking why we hadn’t stayed on the path, all the older cousins were laughing at us for thinking that we were lost. That’s how I always think of my sister, it’s been her and I and we’ve gotten off the path except this time I can’t see over the grass to where we’re supposed to be going.