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I can tell when I’m starting to get anxious. Or be overwhelmed. Or be overwhelmed by anxiety.
The first thing that happens is I start snapping at people. I do this both in my head and out loud. My road rage, which is typically… not pretty, gets a wee bit out of control. The person at the check out line where I buy my lunch looks at me wrong and I think hateful things about her outfit. Like she had any choice in it. I get crazy judgemental about everyone I see. Things that don’t typically annoy me make me want to jump off buildings. I guess you could say my fuse gets a wee bit short. I work on controlling it, so most of the stuff stays inside.
Another weird thing happens. And this may peg me in the crazy category. I start counting letters in my head. It’s this weird thing I do with vowels and consonants and I can’t really explain it. But when I get overwhelmed, anxious, and anxiously overwhelmed, my brain just starts going on auto pilot. I think I start doing it when there are things I want to keep my mind off. Things that, if I dwell on them, may just do me in. So my brain works double time to keep me distracted. And then it starts to get on my nerves.
There are a very limited number of things I can do to keep my brain clear of letters. The things I do have to be all consuming. Watching TV, if it’s good, sometimes can help. Talking to Khalil sometimes helps. Eating almost always helps. A few other things.
I want to turn it off. But if I do, the things I am working so hard to avoid will crowd in. I might have to deal with what is going on with my father. I might have to face the fact that I will be saying goodbye to my grandmother this weekend, for quite possibly the last time. I will deal with the fact that I will be leaving my father this week. I will have to process all of this information, which means more than just typing it out in a cold, hard fashion.
The thing is, I just can’t process it. My brain has no idea what to do with all of this information. I’ve started to cry a few times in the last few weeks, and I always have to shut it off. I can not let go and cry. There’s never the right time, the right place, the right state of mind. There’s really no letting go. Where do you start? And once I start, where can I stop? When can I stop?
So I just hold on. For dear life.
Half of a bag of Lime Tostitos and six Oreos will briefly make you feel better.
Then they will make you feel very, very ill.
Or the right ones, at least.
There has been a silence, I know. There are many reasons for it. Khalil was here, which made for less blogging time. Some painful things were going on. Some things I didn’t want to talk about and some things I didn’t have the words for.
It occurred to me the other day that this blog really started as a weight loss blog. I don’t even pretend right now to be losing weight. I make efforts to exercise, and that has been happening a few times a week, for the most part. Eating right has gone out the window. If I think about it too long I will break down, because it is frustrating. But I just do not have the mental or emotional space to think about it for too long. I just don’t.
I don’t know what to say about my dad. Right now, my dad is not my dad. He used to say something that made me hugely uncomfortable, and I find it coming to haunt me these days. Whenever people who couldn’t care for themselves, who were losing their mental sanity or independence were on TV or talked about in conversation, he would tell us what to do if that happened to him. “If I’m ever like that, shoot me. Put me to death. Something. Don’t let me live like that.”
He’s now living like that. I never promised him anything. His attitude right now, thank GOD, is one of wanting to live. He wants a liver desperately and he wants to make it through this. But his words haunt me. Every time his dependence is highlighted, every time he loses his mind…. I hear his voice in the back of my head. It makes me want to sob.
I don’t know what to say about my Grandma. My heart hurts when I think of her. I have been irrationally angry with my mother for the last year for leaving and moving to Kentucky. I understand why her and her husband did it, and I understand just how selfish and irrational my anger is. But she dealt the latest blow this weekend when she decided she could best care for my grandmother with her husband in Kentucky. Far, far away from me. My first reaction was that she is taking my grandma away from me. Is it the best decision? Possibly, quite possibly. Am I still angry about it? Yes.
My sister said, and I agree with her… she’s having a hard time crying. Because you feel like once you start you may not be able to regain mental sanity. You may not be able to calm and come back to a place where you are not crying. If I fall apart will I ever come back together again? This is how I feel right now.
Last night I finally got to spend some time with my husband. Over the phone, but time nonetheless. It was wonderful.
Then today happened. Today was a hard day, but for some reason I handled it much better than I did the hard day that happened, oh, two days ago.
My sister and I went to the hospital first thing to see Dad, so she could say goodbye to him. He was slow, very Underwater Dad, but seemed fairly lucid. They said their goodbyes, and I told him I’d see him later. Drove Shannon to the airport, and went to Target.
I mostly went to Target because I needed cash. And I figured what better way to get cash than at Target? Except now they only give $40 back. Argh. So I went to Walmart for a bottle of water and got some cash.
Went back to the hospital. Chatted with some of the girls from work on the way. I got to the hospital.
I met my stepmother at the elevators, and she looked… tired. And stressed. She told me that dad was confused.
He did some weird things today. To save his dignity (not that he reads here) I’m not even gonna get into them. Also, when I one day am able to relive this experience by reading these posts, I don’t want to be reminded of the specifics. I just want to note that my dad was not my dad for much of the day. When he finally got settled and took a nap, and woke up, he was at least a version of my dad. Which was better. It’s hard seeing him when he’s like that though. Although I have to admit, sometimes I just wanted to laugh. It just seems silly and so ridiculous.
And what is there to do, but either laugh or cry??
Yesterday was one of those no good, terrible, very bad days. Not in that any one huge thing happened.
I woke up in a bad place. I was tired and had cried before going to bed because I missed my husband. And my cat. And my life. I woke up still sad. I didn’t exercise. It was not a good start, all the way around.
I stayed cranky. I swore at other drivers. I was quiet. I had a hard time snapping out of it and really, I never did. I felt bad because when you’re in this kind of situation, one person’s mood affects other people. It’s not like at work when you can just kind of be to yourself. You’re on top of one another and you’re around to support each other. One’s in a bad mood and it’s going to affect the other. I felt bad for my stepmom. I tried to snap out of it and just never really did.
I wanted to cry every time I looked at my dad yesterday. He just… I don’t know why but he was just breaking my heart. Every time I looked into his eyes and saw the shadows and the person he used to be, my heart shattered. He finally had a procedure to lessen the fluid in his body, mostly his stomach. We left for a while and he got confused- he got out of bed without having the nurse disconnect him, and pulled it all out. Something he had been waiting for for almost 10 days, and one moment of confusion, and he only got about 1/4 out of it what he should have.
When we got back to the hospital, he was so frustrated with himself, disappointed. My stepmom and I both felt guilty. She does a better job of staying in denial/ positive thinking. I was so upset- at the confusion, at his frustration, at the nurse’s concern, at him not getting 100% relief.
Today was a better day. I woke up in a better place. Exercised. It’s snowing and icing here today, but I still managed to get my sister from the airport safe and sound.
Up and down days. Good and bad days.
Lastly, my stepmother’s sister (step-aunt?) and the nurse from the hospital they were working with in our home state, both told my dad when he’d be getting the liver. Predicted it. They told him it would be tomorrow.
They said that Valentine’s Day afternoon.
If he doesn’t get it tomorrow, and I don’t think he will, sorry for the negative thinking, I won’t be able to bear his disappointment.
My dad is Dr. Jekyll and Mr. Hyde.
He’s always been this way, on some level, but that’s a whole other conversation. He’s now this way not due to alcohol, but due to the liver failure (which I guess is due to alcohol still, but… well, that’s splitting hairs.)
When we arrived at the hospital initially, dad was being wheeled by another patient’s stepfather. He announced to us he was going to church (!!!). We decided to head to Target while he was at church with his new friend.
When we arrrived back, the energetic mood was gone. It had been replaced by someone else. He had a hard time answering questions. Sometimes the questions went unanswered. Sometimes they were answered a minute or two after they were asked. (Try doing this with a friend. Ask a question and then make them wait one full minute before answering. It feels like ten minutes go by.) Sometimes he’d start to answer a question and then get distracted by something else. Once he has something in his mind, there is no getting around it until it is resolved in his head.
His smiles were more sad, anxious. I told him he seemed slower today, and he did the ‘crazy’ sign by his ear and nodded. When he is in this mood, he does less for himself. He lets others do for him if he can get away with it. (My stepmother will do more for him. I let him do or try something- if he can’t, I’m more than willing to help. If I know he can do it, I want him to do it. Simple things- as simple as shaking the can of Ensure. He can shake it but not open it. Which is fine.)
When he’s this person, Underwater Dad as I think of him, he can only talk about things in the immediate. What he’s eating for lunch. What the nurse just said. He repeats things over and over. He moves as though moving through molasses.
Then he took a nap. And he woke up.
And my dad, though more subdued and aged, reappeared. He answered questions as they were asked. He was less stuck on one thing or another. He still repeated things, but he does this now. He didn’t do it to quite the same extent as Underwater Dad. He gave attitude when he didn’t like something. Dad could talk about things that had happened, that were happening, that went beyond dinner.
This is so hard to explain. If you’re not watching it, I think it’s hard to understand what the difference looks like. It is blatant, in some ways, but it is so subtle in others. You can tell in about 15 seconds if you’re dealing with Dad or Underwater Dad. Underwater Dad makes me want to curl up in a ball and cry. This can’t be my dad, I think. Dad just makes me sad, but not quite as devastated.
My stepmother and I were talking a little bit about his good days and bad days, and how he can change so much in the course of one day. I mentioned how scary it was. She said that’s she’s kind of used to it by now, but it’s still hard for her.
This is not something I can ever imagine getting used to. Any of it.
You spend your days, all day every day, wishing and waiting.
For someone else to have a tragedy.
So you can avoid your own.
My world has shifted. In three weeks, or four, or something, it will shift back to the reality I am used to and love. Work, love my job (mostly). Home with hubby and cat. Mostly quiet weekends. Mostly quiet life.
It looks so different right now.
It’s filled with hellos to strangers. Many of whom also have family members in the hospital- a hospital. We’re in an area where there are five of them.
We meet lots of people who are transplant patients or who are with transplant patients.
The patients themselves look tired. Worn around the edges. If they are pre-transplant, they are yellow. Everywhere. The whites of their eyes have become the yellow of their eyes. Their skin is jaundiced. Nail beds are yellow.
The move slowly, as though moving through putty to do anything. Their mouths are dry, and often they open them and move their tongues from side to side as though… hoping that will wet their mouth?
They shuffle along the halls in what seems to be a futile attempt to keep the swelling in their legs and feet down. Some push IV poles and others push empty wheelchairs. Some have large, distended bellies and other’s bellies have been tapped and don’t look so bad.
Then there’s the family members. They walk around looking worried and guilty. If we’re in the hospital they look worried. If we’re not in the hospital, they look guilty. Most of them are wives. They are tired. Some of them are watching every bite their husband (or family member) puts in their mouth. Others are feeding them food they most definitely shouldn’t be having.
It’s a world of “Will the doctor stop by today?” and “Is Stephanie on? She’s his favorite nurse”. A world of what did you eat for lunch? Did you drink anything? Did you poop? Your pee looks like iced tea.
It’s a whole other world. Not my world, although I seem to be doing ok. I hope this is a world we’re all not a part of for long. It’s not a bad world in that people are nice. But everyone here is waiting. Hoping. Crossing their fingers for one call, or one person to walk in the door and tell them a transplant is coming! Waiting waiting waiting.
Who woulda thunk? I wouldn’t have.
My mom warned me, and I didn’t know what she was talking about so I kind of blew her off. But there are alot of really steep hills in Pittsburgh. Huh.
This won’t be long, because I’m tired. But I need a way to start processing all of this.
It was hard to see my dad today. It’s hard to see him sick, in a hospital. When I saw him right before he left to come here, he was in his bed at home, sleeping. I remember stopping at the door and watching him sleep, and thinking that was how he would look in the hospital. And being scared by that thought.
And it is mostly how he looks. Yellow, with a very distended belly. He’s in his 50s? 60s? I’m REALLY bad with ages, sorry. But he looks almost like an 80 year old man. He’s aged so much in the last year. His feet are swollen. His eyes and skin are yellow.
He talks really slowly, and he loses his breath often. He walked down the hall to “give me the tour” (here’s the community room. here’s the nurse’s station.) and he ran out of breath often. He couldn’t walk and talk at the same time- to talk, he had to stop walking. Did I mention how slow he talks? So. Slow.
He’s so confused. Survivor has been his favorite show forever. Tonight, when talking about what he wanted to watch when he left, my uncle and stepmom mentioned Survivor. He looked at them blankly the first six times. Then he finally asked, “What’s this Survivor?” At that point my heart may have broke into sixteen pieces.
My dad has always been full of piss and vinegar. He’s always been larger than life. That has sometimes been painful and difficult, I won’t lie. But he is who he is. That’s who my dad is- loud, opinionated, could give a rat’s ass who he hurts in the process. But he has a great smile and a soft spot. Charming as can be.
He’s the same, but in much, much softer shades. Blurry around the edges, you might say. It’s hard to watch him be in a room with people talking about him without talking to him, and him just sitting there. Not really caring. Or if he does care, not having the energy to mention it. In the past, he’d be telling everyone to talk to him, and not in a polite way. Hard to watch him be poked, prodded and moved like a child.
My stepmom and uncle tell me that he’s full of his normal piss and vinegar in the mornings. I think it’s because he has the most energy.
This is hard. Hard to watch. I’m so glad I’m here, though. I miss my husband and cat, and can’t think about my grandmother. I just can’t. But I know I am where I’m supposed to be.
My father has gone to the out-of-state transplant center. He went last week, planning to go for preliminary tests and be placed on the waiting list. They were well aware that there were one of three options: 1. not make it onto the list, 2. make it onto the list and be sent home with a pager, or 3. get on the list and the transplant center telling him he needed to stay there.
There are pros and cons to that last option. Well, one pro and one con. The pro is that if and when a liver comes, you’re there are ready to go. The con, and to me it’s a biggie, is that there is always an IF. No matter how sick he is, there’s no guarantee a liver will be available. My dad and stepmom had still been hoping for the third option, regardless.
They got their wish. He finished the preliminary testing and they are having him stay there, for one month. They told my stepmother that he needs a liver and he’s very sick. It’s the one month part that really scares me. What happens after one month, if he doesn’t get a liver? Either my stepmother isn’t answering me or the doctors aren’t really answering her. “We’ll see” is not an answer.
So I’m going out of state to see him. I was talking to my stepmom, and she sounds down. She needs the support to support my dad. An uncle has been there but he has to leave late this week.
Since it’s my blog, my journal, I’m going to be real honest about how I feel: I don’t really want to go. I don’t want to leave my husband and my cat. I don’t want to spend Valentines day with my dad and stepmother. I don’t want to leave work right now- it’s a busy and stressful time right now. I’m stressed because what if I’m out of state when I ovulate? Just- what if? That would suck.
The real reason? The real, honest-to-God truth of it all? Is I don’t want to face my father’s illness. I don’t want to go and see him in a hospital, every day. I don’t want to watch how tired and ill he is. I don’t want to be shocked by his skin collor (yellow) and his voice (quiet) every time I see him. If I could stay, I could pretend like it’s all happening to someone else’s dad. I’m also scared to leave my grandmother. My husband will check in on her, I know that. There’s only one of me, but right now I wish there were two. Two of me. One to stay here and one to go there.
So late next week I’ll be going on a road trip. I wish it was under better circumstances.


