30 Days of truth: Day 15

Day 15 → Something or someone you couldn’t live without, because you’ve tried living without it.

I don’t like this question, either. The only things I truly could not live without are air, food, water, and probably sleep (since a complete lack of sleep can drive people insane). I tried briefly living without air when I almost drowned while trying to boogie board when I was much younger. That didn’t work out so well. It was exciting to get saved by a lifeguard, I suppose, but the throwing up seawater aspect of it really wasn’t particularly pleasant.

There are a lot of things I don’t want to live without. Xander is the primary one. He makes my life better, and I am happier with him than I have ever been before. Family is, of course, important, as are friends. Nyx, Eris, Loki. Our house. I like having a job and I enjoy doing it. I like having the physical ability to swim, dance, and hike. I like being able to read, play computer games, write, watch movies, and a lot of other things.

When it comes down to it, though, there are very few things I truly can’t live without.

Next: Day 16 → Someone or something you definitely could live without.

30 Days of truth: Day 13

Day 13 → A band or artist that has gotten you through some tough days.

I don’t have a specific band or artist that has gotten me through. When life gets too hard or weird or complicated, I listen to classical music. I can lose myself in the complexities of Swan Lake, sink into a waltz by Strauss, or drift along with Mozart. I really enjoy Camille Saint-Saëns’ Carnival of the Animals, the different instruments showing the animals and some of their traits. I have listened to Ravel’s Bolero for long stretches of time, sometimes just on repeat, and Purcell’s trumpet works have always made me happy.

When life gets too hard, I want music that expresses the emotions it is trying to convey without words. I want to close my eyes and let the power or sweetness or simplicity or complexity take me away from whatever is causing me grief. I don’t want a musician singing at me, telling me what I should be feeling in no uncertain terms. I want the music to flow over me. Sometimes I get wrapped up in listening to the different parts, where the viola swells out to strengthen a theme, the flutes dancing above, the drums holding steady underneath, and the violins feverishly flying through the melody.

There are pieces I love because I’ve heard them so many times that I know what is coming next, and there are pieces I discover and love because of the surprise, the unexpected chord, the moment of joyful silliness in the midst of a dirge.

I grew up listening to classical music, and it still helps ground me when the world is too strange.

Next: Day 14 → A hero that has let you down.

Funny story

Last weekend I was wandering a local mall-like place with a six year old. As we walked, a song I recognized came on over the speakers mounted on the light poles. I’m not sure what the song is called – Jenny or 867-5309 – but I know it well enough to sing along, and I did. The six year old thought it was funny, so I kept singing. A man was walking in front of us. He heard me singing and turned around to grin at us, then kept walking. I saw his steps slow for a moment, then he seemed to come to a decision and turned so he was walking backwards.

“Want to hear a funny story?” he said, grinning.

“Sure!” I said, and smiled back.

“I used to work as tech support for a big hardware company. Whenever we hired anyone, the first ticket that came up was for them to call Jenny at 867-5309. We figured the people who didn’t get it by the time they finished dialing were not very smart.”

I laughed, and he turned and kept walking, humming along.

The six year old looked up at me. “Do people usually stop and talk to you?”

“Pretty often, if I look like I’m having a good day.”

It’s funny how many people will talk, really. I rather like it.


I’ve been unable to write for a while, stuck in emotions too big to think about or deal with lest I get overwhelmed. It isn’t better, not by a long shot, but I’m beginning to move back into familiar rhythms, and writing is one. I will try to write, even if it isn’t particularly long or interesting. I think I need that piece of the pattern back again.

I’ve been thinking about grief and joy and venting and how I approach the world. I heard about a study that shows that venting actually extends anger rather than helping it, and I’ve been thinking about that a lot. Hitting a punching bag makes you more angry, not less. I’ve been thinking about how I talk when I am angry and how I can get myself wound up on the same subject again, even several hours later. I think I need to play with the difference between working through issues so I can let them go and venting, which just prolongs the frustration, irritation, and anger.

I get angry more often than usual these days. It’s almost a knee jerk reaction. My temper is much shorter than I’m used to living with and I have to take deep breaths and think through things that I used to be able to brush off. I’m slower than I used to be, too. Someone described grief as being like shoveling frozen molasses, which rings very true to me. It feels like an impossible task.

I am trying hard to look for joy, even if it’s in odd places. I sat and watched rain fall. I watch silly TV and relax. I play with Nyx. I clean and organize, and that satisfies something in me that desperately wants some order and some control over my environment right now. The good side is that the house is getting clean, at least.

It’s hard writing with no plan. I’m trying stream of consciousness, since writing with a purpose leaves me stuck, mired in complications and feeling like I should write something important or useful. I’m not sure I have anything important or useful to say right now, but just writing is good practice.

There are days I just want to curl up in a hole and pull it in after me. I don’t want to have to do anything except let the world go by and nurse my hurt. This doesn’t seem to help, though, so I continue to move. Work. Swim. Walk. Breathe. Eat good food. Work on the house. Now, write. Soon I will be dancing again. It isn’t much. It isn’t living fully in many ways; all I do is continue to move, even if it doesn’t feel much like I’m moving forward or in any useful direction.

There are nights I wake up paralyzed by grief, tears leaking out of the sides of my eyes. I am learning to go back to sleep and to get up the next morning and move on.

In flying, the most important thing is the next thing. If you screw up enough of those, you crash.

One step. One more lap. One length of butterfly. One piece of work done. One cupboard organized. One piece at a time. Nothing important. I can’t handle important or amazing or wonderful or tragic. All I can handle is the next step.

Pieces of joy

I’ve been reading a lot lately. Some of it is fluff – silly sci-fi and fantasy, letting myself ignore the world for a while. Some of it is books about dealing with grief. Most of them are anecdotal, stories about people dealing with grief or, in some cases, really not dealing with it. One was a look at the physical side of grief, which was basically 100 ways to take care of yourself. That was rather nice, since the physical side of grief (not sleeping, random cramping, muscle and joint pain, headaches, loss of appetite, and that’s just a partial list) is not talked about much. It was basically a book about how to take care of yourself while you are grieving. I didn’t agree with all of it, but it helped a bit.

Another book I read was The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After Loss. This helped me more than the anecdotal books did. The authors actually studied how people handle great losses and discovered that, for the most part, people are resilient. Until about six months after a loss, it’s hard to tell how someone will handle it long term, but humans get through things. A lot of what it said helped because I felt like what I am going through was strange, too much emotion, that it wouldn’t let up, but at the same time normal life is settling back in, and I feel almost like I’m betraying my brother’s memory by being able to move forward.

My friends have been helping me a lot, too. When I am overwhelmed by fury, they tell me they’ve been there. It’s a normal reaction. When I can’t do more than one thing at a time, when I feel like I can’t keep up with the world, they tell me it gets better, eventually. The pain of loss doesn’t go away, but it eases, though it will take time.

I saw one therapist and we did not fit at all. I have another appointment this week with someone else; hopefully she will be able to help more, give me tools to help get through this. I don’t have any issue with experiencing the pain and dealing with what I need to deal with, but I don’t know how to handle feeling like I’m in deep water, toes just touching the sand, and waves keep knocking me down.

I’ve also been trying to keep up with the people I usually follow, reading their blogs and laughing at silly Twitter posts. I read something on Stop Motion Verbosity recently which made me think about what I write and how I write. “When a lot of what you read, when many of your friends, put so much negativity out there it is easy to feel that the world is a much darker place than it is….There’s good things happening all the time, even through the really shitty times, and the best way to get through those shitty times is to recognize the good. And yes the good times are often smaller and far more fleeting, that’s the nature of the good bits, frankly. It’s a great sandwich, a smile on the street, a tiny memory when a song you love plays – those are all great moments of happiness that need to be cherished and recognized.”

I’m dealing with some hard things right now. I will not pretend otherwise, and I’ve never seen the world as all roses and sugarplums. There are good things, though. Last night Xander made BBQ sauce from scratch and grilled shrimp and pineapple on skewers for dinner. He cooked down some of the sauce and put it on rice. It was exceptionally good. The shrimp came out a little bit smoky tasting, the pineapple’s sweetness was emphasized more by cooking, and the BBQ sauce was very good. We sat, ate, and talked, relaxed despite the heat, and it was a good evening.

A few days ago, I was puttering around on the computer and Nyx was in the office with me. She stood at the door and opened it by pushing against it with her nose. Then she closed it partway. Then she opened it again. I sat and watched her do this for about ten minutes until she shut the door a little too hard and couldn’t open it again. I thought it was quite funny.

Yesterday morning I got up early and weeded the strawberry patch, weed whacked the front yard and the courtyard, took a shower, and we ran some errands and went to see a movie. When we got back, I cleaned house, and it felt good to be tired. I got rid of a chair that has been falling apart for months, and I enjoyed physically pulling it apart, breaking it into manageable pieces.

I am de-cluttering. I feel the need for more organization, more space, more clarity. I am donating books that I won’t read again, giving some of them away, letting go of things I don’t need. It isn’t a bad thing.

There is still grief. Sometimes it slams into me like a freight train and I have to find somewhere to sit and fall apart for a while. Sometimes a song will stick in my head and I will miss my little brother terribly, just wanting to be able to see him again, to give him a hug. Sometimes I think about my smart, witty, funny grandmother who adored teasing Xander and I find myself mourning the loss of that person. When we saw her, she seemed a little afraid of him, uncomfortable, not sure why he was there. I miss the person she used to be.

With all of this, though, as overwhelming as it can be, and as painful as it is, there is still reason for laughter. There are still good things. I’m sore today from pulling weeds and making the house a little nicer. It’s a good kind of sore.

Spider Robinson, one of my favorite authors (Callahan’s Crosstime Saloon is one of those books I have several copies of, one to re-read, one because I’ve had it for years and it’s falling apart, and one to loan out), said, and was quoted in the blog post I mentioned earlier, “Shared pain is lessened, shared joy is increased.”

Here’s joy in the midst of a hard time. I am trying to pay more attention to joy even while I’m dealing with the hard parts and working through them. I hope you find a little bit of joy today, too, no matter how hard the rest of life can be.


My younger brother Daniel has Down Syndrome. While I was growing up, the focus was on helping him, as it should be. I’ve noticed over the past ten years or so that people are recognizing the unique challenges faced by the siblings of people with disabilities.

Daniel was the focus of the family from the time he was born. I was almost seven, and I felt fiercely protective of him from the moment our mom brought him home. My older brother had threatened to run away if she brought home another girl, so when Daniel was brought home they had their bond, too. Since I don’t know my little sister well I will mostly leave her out of it, but she put as much time and energy and love into raising him that the rest of us did.

We reworked the house to adapt to Daniel’s needs. We lived in the top two stories of a three story apartment building, with the two stories connected by a spiral staircase from a bedroom to the basement. From that basement to the front door of the apartment stretched a road made of carpet where Daniel, with our encouragement (resulting in a lot of jeans with holes in the knees), learned how to creep and crawl. An overhead ladder was set up in what would have been a living room, and we all had calloused hands from swinging on it. We started home school about that time, too. That made me happy, since I didn’t much like people and I really didn’t appreciate my teacher not letting me read when I finished my work before anyone else. We did patternings, which taught Daniel how to move better and how to breathe more deeply.

I slept in the room next to his, and when he had night terrors I would get up to help him calm down. It got to the point where I’d wake up a little bit before he did so I could calm him as he woke up. I still hate being awakened by loud, strident noises. Adrenaline, while useful, is not a rush I need to wake up.

People often said “I’m sorry!” when we explained that Daniel had Down Syndrome. It made me furious. I didn’t want anyone to be sorry about him. He was my little brother, a wonderful person with a wicked sense of humor, and by saying they were sorry they seemed to be implying that I should be, too. Someone used the word “defective” in my hearing once and I yelled at them. I think they were a bit startled by that, as I was generally fairly well behaved.

I was sometimes embarrassed by him. He was terrified of ceiling fans for a while, and he’d hide under tables to get away from them. I’d glare at anyone who had the temerity to stare, but part of me wanted to pick him up and take him away where no one would judge him, or me, anymore. I never showed him that he embarrassed me, though. His feelings were, and still are, much more important to me than mine.

He knew he was different, and I saw it hurt him, and I couldn’t protect him. I still sometimes have nightmares about that.

I want the best for him. I want him to be happy. I wanted him to be fully part of the community, which was rather funny, in retrospect, because I’ve never been particularly good at that.

The most important graduation I have ever attended, far surpassing my own, was Daniel’s high school graduation. He was part of the class. He walked up with them, received his diploma, and walked out. I have never seen him so happy, never seen him smile so hard. He was shaking from the emotion when he hugged me, and I was very close to tears. I was deeply proud of him. He was a valued part of that community, that school, and that meant so much to me that I stumble when I try to explain it.

He makes his way through life with blocks I can’t fathom. My father once said that he would never be as proud of any of the rest of us as he was of Daniel, because Daniel had to fight many times harder to achieve the same things. That hurt at the time – however true it is, and I understand the feeling, I still wanted to be able to know that my parents would be as proud of me as they were of him. It’s an odd place to be, knowing where the sentiment comes from, agreeing with it on some level, but always wanting approval for what I worked so hard for, too.

I wasn’t angry at him growing up, but I was angry at the rest of the world and how cruelly he was treated, sometimes thoughtlessly, sometimes with complete awareness. Even now, the word “retard” makes me angry.

I think I took a lot of things for granted before he was born. I don’t take nearly as much for granted now. Everyone’s experiences are different, and often those experiences are not visible. Looking at me, people generally see someone reasonably smart and relatively confident, but underneath there is the person who still wishes desperately to protect a little brother from a world that doesn’t bother looking at him past what his face looks like. They make judgments based only on that and move on.

Having him in my life has changed how I see the world and, I think, made me less quick to judge. I try to understand people for who they are based on who they show themselves to be, without making quick assumptions based on appearance. I’m not always great at it, but I am always working on being better. I sometimes get burned because I trust too much, but I made a decision that I’d prefer that to hurting people by making assumptions.

Daniel is pretty stable these days. He lives in a good situation and seems to be happy, or at least content. When he and most of the rest of my family moved to another state, I thought long and hard about joining them, but eventually decided that I needed to make a life separate from them. It’s probably better for him to not have his big sister hanging over his shoulder and butting in all the time, anyway. I miss him a lot.

It’s an interesting journey, loving someone with a disability, and one that pulls reserves I didn’t know I had. I am still very protective of him, love him dearly, and would do just about anything to make his life better, but I also understand how much he changed our lives, and I can begin to understand why people said “I’m sorry” about Daniel. I still don’t agree with them, and I’m still not sorry he’s in my life, but he did drastically change how our family worked and how we lived our lives, and I can understand people thinking that must be a bad thing.