Let's Go Make Some Plans!!!!

The Bandit Update 
It's been a little over three weeks since Bandit got out of surgery. We're headed up north, finally, for what would have been our final weekend there, but instead has become... well... our only weekend there. It will be a strange trip for me -- an actual vacation of sorts -- since Bandit requires so much care, for once, I'm not actually working while I'm up there. I mean, I am working, at my regular job, and taking care of him... so I will still pretty much have two jobs. One of which requires a night shift. But it's the closest thing to a vacation I have had in a long time.

We finally have a plan. His last appointment will be in Madison next Friday, and then we'll head home. "Home." (I came here to come "home," too, incidentally).

That will give me a few days to get him settled before I have to go up to Baltimore for my next conference the following weekend. I'm dreading leaving him for a long weekend, if you must know. I am convinced no one can take care of him as well as I can. Not when he's like this still.

At this point, I have seen him stand on 3 legs once, for about a second. I have seen him walk with me supporting his back end, where he actually puts weight on his back, right leg once. His left back leg has begun to move a little bit more sometimes when he walks, but it doesn't actually get used as anything other than a balance for when he sits up. He is still in diapers. He's not dribbling pee literally every second, it's more like every ten minutes or if he moves at all. But he is also unable to go to the bathroom outside, and gets very stressed out when I hold him outside to give him a chance to try. It's great that he has some urinary strength back, but we won't know for another month or so if it becomes a meaningful amount of control that would allow him to go potty on his own, or if it just means he'll pee every half-hour instead of every second. As far as his back-end goes... he can tell when he's pooping, which is very distressing for him... since he can't stand or squat, and seems to have no ability to stop himself. But it's great that he can feel what's happening. And he is also not pooping every 20 minutes anymore, which is a sign his body is regaining some amount of control over the process. Though again, whether that is meaningful to the point of not needing diapers ever again is pretty up in the air.

He can't walk to a water or food dish by himself. He cries when his diaper is dirty. And he gets visibly frustrated that he can't follow me from room to room or go run outside. Sometimes vocally frustrated. He cries to ask for help with walking. But getting across a room, with assistance, wears him out. And even then, he's mostly just pulling with his front legs, while I hold the weight of his back-end for him. It doesn't really look like real walking yet. He's in physical therapy to help him relearn how to use his body. And I do work with him every day. Sometimes I worry I should push him harder somehow or get him to do more. But I see him shake with exhaustion and know he's really trying as hard as he can. We don't overdo it. He's been through enough already.

The physical therapist asked me my goals for him. I said I didn't think I got to choose how this turned out, so I didn't have any. I loved him how he was. I said he might be happier if he could move around on his own again. She said she understood.

The Sandy Update
As for me? I came up here for a respite. A break. Some peace. Perhaps this weekend will provide some.

But otherwise, I might in fact be more tired than when I arrived. Watching him heal and get new skills back is very rewarding. But my body needs to be in one stable place, and to sleep through the night. My mind wants to be sharp enough to finish projects at work -- the job market looms before me, and I try to be excited for beginning a new life. But I can't imagine any of it. This past year will probably ache in my bones for a while.

It makes me happy to talk to people getting married and starting new jobs and beginning new lives... I love to hear about their happiness. But then I struggle to talk about my life. Because I know I'm doing my best. But what about my year can I bring up that doesn't sound like a horrible year? And I worry that somewhere between my brother shooting himself and my dog becoming crippled, there aren't any nice ways to frame things that make me anyone's favorite person to hear from. It's scary to think these things can all happen. Who wouldn't rather hear an inspirational story instead? Congratulations on your new baby, your marriage, your first home. Mazel tov. Life brings rich fruits.

To some.

Sure, I can feel some seeds sprouting. I am no longer living in the brain fog I had for so long after my brother's death. I can do work. I can make decisions. Nothing is permanent. Not even this. My days are probably a lot more up and down emotionally simply because I am overtired and my life seems like one big giant question mark. But, my life is also much clearer. I have choices ahead of me. There are things I could look forward to. I just have to decide what they will be.

I posted the other day about how my life this year has come close to being unrecognizable. And something about that felt like a relief. Maybe, whether I help things along or not, new beginnings come.

But let's not sugar-coat it all. What if we didn't make this sound hopeful and balanced and even-keeled?

The truth is that this was the worst year of my life.

In every dimension of my life.

The real truth is that I can't even think of things to look forward to.

The truth is that I break down in tears in public places when people ask me to recap what happened, because if you actually make me walk through my year, I lose any sense of distance from everything that has happened. I feel sorry for myself. I think "what is NEXT?" and "does it ever really get better?" because even though so many things have changed, honestly, it's all been kind of shitty. It has. It has. It just has.

And I'm tired of telling myself that one hour of yoga was GREAT. I'm tired of trying to be grateful for cozy sweat pants (HURRAY!!) or some tea (TASTY!). I'm tired of meeting new people. And no, I don't care. About anything. I'm tired, I'm tired, I'm tired.

(This may also be known as depression).

It took until about a month ago for it to finally hit. I kept thinking all year "isn't it strange that I'm anxious and whatnot, but not depressed? It would seem like depression would make sense."

Yes Sandy. People have limits. You have hit yours. Welcome to the bottom.

Or perhaps I am finally well enough to even experience something as deep as depression. When you're living in brain fog and have trouble reading People magazine, you might not be really capable of something so much more complex.

And it's not like everyone is getting married and buying houses and starting dream jobs. People are also sick, and dying, and dead, and grieving, and unemployed, and in the midst of their own depression/existential crises/breaking down. In fact, in the network of my friends, I've actually been struck, blown away, by just how many other people are really struggling this year too. I know it's not just me. This is both comforting and terrifying. I'm so thrilled to hear from people doing well. But I have to tell you: they are rarer than I'd like them to be.

So let's not pretend. The truth is that I'm not looking forward to going home. I'm not looking forward to today or tomorrow or next week. I'm not looking forward to my conference circuit. I'm not looking forward to the job market. And I don't get excited about my work like I once did.

I get up. I make myself. I take care of Bandit, first thing, because he needs immediate attention. Then I drink coffee and begin a new day. I do work. I take care of Bandit. I see friends. I do work. I take care of Bandit. I see friends. I read. I go to bed. Some nights I get more sleep than others.

If you are One Of Those People Who Gives Advice, if you are already carefully crafting a reply of to-dos and hopefulness: let me pause you now. One thing I have learned this year is that advice usually only makes one person feel better. And it isn't me. You might like to DO something. But whatever answers you think you have, I encourage you to use them, but realize:

I will have to find my own.

If you want... You can send a card.

Cards are not like Advice.

Cards are Reminders I'm Not As Heartbreakingly Alone In All Of This As I Feel.

 

But I don't want to pretend. Because even if things feel better in an hour (they often do) or a day, or a week. Even if they feel better in a more lasting way, I think we should all be honest with each other for once. Depression makes every little thing feel harder than it otherwise would. Every little thing. I ask what the point of everything is. What's the point in drinking coffee, or drinking tea or going to yoga?

What is the FREAKING POINT?

And then I ask myself: Sandy, can you live with not knowing? Can you find a way to live with the pointlessness?

I know what to do. I know the things I'm supposed to do so this doesn't become worse than it already has. I know how to take care of myself. I am a fighter at heart, and nothing has ever actually completely beaten me yet. So some part of me doesn't worry. I know I'll be OK, through this thing, too.

But my old advisor asked me yesterday what I would like to wake up in the morning and look forward to. And like so many questions he has asked me over the last few years... I didn't have an answer for him.

I want Bandit to be happy again -- not just OK. I want to be excited about and for things. But what those things might look like? I am not sure. When you are grieving, you can't really separate that out from much else. Everything is bloody. It's hard to know where the blood is coming from. You just have to have faith that the major wounds will heal and you'll be able to see what was actually ok all along. Not everything is wounded. It's just hard to tell anymore what's the good stuff and what is broken.

I look at my life, and there are things that used to be in it that I miss terribly. I carry things in my heart that are heavy, and of uncertain soundness. But I also know that I am in no condition to take on more, to love more, to be more. My job is to take baby steps. My job is to reclaim my life. My job is to find agency again, because I'm no more a victim than anyone else is. I want to look at my life again and think "wow, here is fulfillment. And over here -- inspiration! I have done things I am proud of. I am doing them. And I will. Again."

But until that time when I look around in satisfaction and smile (even knowing how horrible things can get), I just wanted to document this. I wanted to be real about this. So many of you have told me privately about your struggles. So however well I'm doing in a week or six months, I don't want to pretend this part didn't happen. Because it did. And it hurt like hell. And it didn't feel like there was any point. And anything I think of that might help it to feel better also seems like it might make it all worse.

So. Here. This is where I'm at.

Meanwhile... I am better at meditating than praying. Which is why I'm so grateful so many of you have had us in your prayers. But, there was one time before this, when I kneeled by a bed in the middle of China, alone in a hotel room, after a friend had committed suicide, and at a loss for what else I could humanly do to move forward, and finally prayed for help.

It was a great turning point in my life.

Maybe this will be one too.

Until then.

Send more cards?**

Namaste



**We don't have a real address. But the post office likes a good challenge, I think.