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Purpose and control

I was watching television and a character said he became a doctor because it was always his way to try to control things. Being a doctor made him feel he was in control of his life and his patients’ lives.

I was sitting there watching and it was like one of those AHA! moments. I started wondering if my fiction writing (which I’d been doing since I was a pre-teen) was my way of controlling things in my life. Or finding a way to have control in a world where I really had no control, especially when I first became sick…which is when I started intensely on my writing career and when I was first published.

When I talked about this with T, it also made sense as to why I haven’t been able to write very much in the last few years. I’ve worked so hard to release my idea of controlling everything, and so my default way of writing–and seeing my writing–is no longer the same. T said she could see exactly what I was dealing with, and she felt the discovery was a very interesting and insightful one. I’m not sure how I will be able to write again, but T thinks I’ll find a way. I certainly don’t want to go backward in order to find my ability to write again, but as I am now, I feel like my solace in writing is gone. I used to be able to disappear into my books and create lives and worlds where everything was the way I wanted it to be. But now, where I see that control really is an illusion–even though I’m still working on that in my own life–I’m not sure how to create stories the way I used to.

At the moment, I even feel like I’m struggling to get my ideas across in this post. I feel jumbled and like the words I want are not here. It’s sad and disappointing right now. The thing that I always went to feels like it’s well and truly gone. I mean, I know I haven’t worked on any of my books in recent years, nor have I really started anything new of note, but I guess I thought it would still be there to save me.

It sounds dramatic, but really my writing did save me when I got sick. There were days I never made it out of bed except to go to the bathroom, and yet those were the days where I wrote my books. Those were the most productive days of my writing career. Through pain and vertigo and fatigue…I wrote my books. I wrote deep into the night, hours and hours at a time, and slept through until noon. I would eat lunch and then go back to my writing. It kept me sane, it gave me a life to live when I couldn’t live my own life. My hands would cramp, my arms would ache (I wrote my books in longhand), my neck would hurt…but I kept writing. That was the first time I ever wrote a full-length book, and it was the first time I persisted in finding a publisher for that book.

And here I am, in need of that solace, and unable to find it.

I’m not the same person I was, no question about it. I just don’t know how to be the person I am and still have the purpose I had then.

 

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What am I going to do

I’m still feeling lousy. There are days when I barely have the energy to do anything, including feed myself. I force myself to get up, do things, take care of the dogs and myself. In between, I rest. I get outside with the dogs for a 10-20 minute stroll every day around the yard as the weather allows so I am at least moving somewhat. I’ve read a couple of books and I’m trying to do some crocheting in small doses.

But I feel lousy. My imbalance, the nausea, heartburn, fatigue, pain…it’s all still here. Sleeplessness, heat intolerance…I’m hot and cold all the time. Sometimes I feel sweaty when there’s no sweat. Sometimes my hands and feet are sweaty and clammy. Today I have tingling in my fingers and face. And always the pain in various parts of my body. Both shoulders are bad, and for one of them I can’t lift my arm up above shoulder height. I’m eating small amounts of food and feeling full, then feeling hungry again later. Rinse and repeat when I eat again…small amounts of food and feeling full, then hungry again.

Our health insurance doesn’t kick in again until May 1st. Even so, the last time(s) I saw my doctor, she found nothing troubling. It could still be grief. I’m sad a lot, but I’m also exhausted a lot. Sometimes I’m not sure if I’m sad or tired. This stuff has all been going on since the beginning of February. It doesn’t seem as if it’s going away…it’s coming up on three months. I can’t imagine it’s just going to disappear anytime soon.

As if I didn’t have enough to think about, the biggest issue looming is that Hub is flying to California soon for his sister’s wedding. He’s going to be gone for five days. And I’m going to be alone, having to take care of myself and the dogs 24/7 for those days. I’m going to be in this big stupid house all by myself, day and night, for five days. I’m going to have to be up early to feed the dogs, and then I’m going to have to be up and alert late to make sure they get out at night before bed. And then I’m going to be alone overnight in the darkness. I haven’t been alone like this since before I first got sick over 17 years ago. The last time Hub traveled–maybe eight years ago–I stayed with my parents with the dog we had at that time so they could help me.

But it’s different now. My mother is gone, and she’s the one who kept everything in line in their house. My heat intolerance is bad and Dad still keeps their house too hot for me, so I’ll feel horrible all day and not sleep at night. Butthead is difficult to keep track of, and I can’t trust my father or my brother to make sure she’s not eating things in the yard late at night or early in the morning.  The friends I have who are local have their own lives, work, families, pets, I can’t ask them to come help me. I considered hiring someone, but having a stranger in the house while I’m here alone is frightening to me. I’ve considered staying up all night and sleeping all day, but the dogs go out multiple times during the day so I’d have to be awake and dressed to do that repeatedly during daylight hours. That means no sleep at night and basically no sleep during the day. I could try to sleep at night but being alone in the house overnight is scary for me and I’m not sure I’ll sleep. Not sleeping will, of course, make everything worse.

This all makes me feel like an invalid. But I’m honestly afraid to be alone 24/7 for five days. I don’t know how I’ll deal with pain and anxiety and exhaustion without any support or reprieve from taking care of the dogs and myself. There are moments when I think I will be able to handle it, and then there are moments when I am positive I won’t be able to handle it. The truth will probably live somewhere in between, in the end. I have avoided thinking about this since February, when Hub bought his tickets, but it’s coming too soon for me to keep pushing it aside.

 

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The 1st of March

It’s the first of March. It’s the first day of the month during which I lost my mother last year to her cancer.

Yesterday I went to see my massage therapist. It was a long appointment and the therapist worked hard on my trigger points. With all the pain I’ve been in, she really had to do a lot of work on my upper body. Arms, upper chest, shoulders, neck, my entire back, my glutes. I came home feeling exhausted and so weary. I probably shouldn’t have driven home myself but I made it successfully. I had the air conditioning in the car full blast to keep me alert, but I think once I turned into my driveway my brain sort of gave up. I drove up the driveway but…when I turned my car toward the garage so I could make a K turn to park in my usual spot, I went just a little too far. And I hit the garage door. Again. I wasn’t going fast and I didn’t hit hard, but I pushed the already damaged door in just enough to break the bits on the inside that hold the panels to the rollers. I did this years ago (like 3 years?), but at that point I had backed into the garage door and the molding at the edge of the door. I broke my tail light and dented the garage door. The repair guys came out then and just repaired the stuff inside and said it’d be okay. Well, it WAS okay until I hit it again yesterday. The guys came out today and said the door parts were damaged beyond repair and we’d likely have to replace two of the panels. They are supposed to call tomorrow or Friday to let us know the cost. I don’t know what happened…and I can’t believe I hit the garage door a second time. I guess I’m thankful that this time I didn’t damage my SUV and that Hub couldn’t have cared less that I hit the garage. He was more upset that I was so upset with myself. We can’t use the garage until we get the repairs done, which doesn’t really affect me because I don’t park in the garage but it means Hub can’t put his car in the garage. Again, he’s totally not upset about the damage, but I am.

So I haven’t been sleeping much at all for the last six weeks or so because of all the pain I’ve been in. I slept about an hour or two (fitfully) Monday overnight to Tuesday because Hub went to an overnight sleep study at our local hospital. Tuesday I had my massage therapy, and Tuesday night I was in extra pain from the trigger points she worked on. Today, Hub worked from home and I spent most of the day on the couch trying to find a comfortable position. I’m not sure I’ve tried to describe this before, but when my massage therapist works on trigger points, I am often left with a feeling of horrible bruising (without any bruises) and like I am resting on golf balls that are pressing right on the bruised points. All my body weight right on those bruised spots with hard golf balls pressing right into those spots. It’s painful. Even moving is painful. The best thing I can do is not move. Find a position that doesn’t put too much pressure on any of those spots (and they are numerous and spread throughout my back, arms, shoulders, and butt) and then don’t move. So I was stretched out on the couch while Hub was working nearby and everything is hurting…and I start crying. I’m exhausted and in so much pain and I just feel overwhelmed.

And I’m sad. I miss my mother so much every single day. And I know now that March was the beginning of the end for my mother last year. And I’m thinking of the things we were trying to do with Mom last March…and how fast it went in the end. The tears just came and I let them. I feel so sad. And lost. I can’t believe it’s been almost a year. I can’t believe how much time has passed without her. How life has gone on for so long without her. It hurts. Physically and emotionally and mentally I am just exhausted and sad.

 

 

 

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Liar liar brain on fire

I’ve been struggling with my health anxiety for over a week. As per usual, it’s pretty centered around my heart. I’ve made an appointment to see my cardiologist, but the online scheduler only had an appointment for NEXT Monday. I’m going to call in the morning to see if they have anything sooner, whether it’s a cancellation or what. If they can’t fit me in sooner, I might also check with my regular doctor–but getting in to see them is pretty difficult these days.

I keep trying to tell myself that if I’m still alive after this week of potential heart pain, then it’s likely just anxiety plaguing me and not a “real” issue. It’s my anxiety lying to me. My left arm hurts, my back hurts, my jaw hurts, I feel slightly off-balance, I’m nauseated. All those things could mean a heart issue…and all those things could be just my daily life. I can’t get around my lying anxiety brain to figure it out. I’m both hot and cold, sometimes feeling sweaty when there’s no sweat there. Right now my palms are warm and feel like they’re sticking to my laptop, but my feet are freezing cold and clammy.

I’ve had a pain in my lower right back today. I always have pain in my back, but this feels different. Is it real or anxiety? I hate that I can’t tell. I don’t understand how I’m supposed to know what is real and what isn’t. I don’t know when to seek emergency treatment and when not to. I don’t want to spend my life in the emergency waiting room…our local ER is terrible and our trips tend to last no less than 6-12 hours there. Most of that in the waiting room trying to get a bed to be seen (usually by a dismissive physician or physician’s assistant).

I’ve been depressed and not acting normal, not moving around much, not eating well, not drinking my water. I know this is all contributing to the fact that everything hurts me, but I can’t seem to get around it. I’m sitting poorly, also contributing to my pain. I’m not sleeping, some of which from pain, some because of the fear of having a heart attack.

I can’t even tell you how many good-bye letters I’ve written. In my previous house, I used to have them scattered around in weird places. Mostly hand-written in the dark of night when I was sure I wouldn’t make it through the night. Sometimes I write them on my computer and drop them into weird folders. Am I the only one? Does anyone else do this? I so wanted to write one the other night because it was that bad. I didn’t do it. I wanted to wake Hub and tell him good-bye, just in case. I wanted to do it before he went to sleep. I write the notes because I don’t want to frighten my wonderful husband…I can’t stand keeping him awake when he’s the one getting up early every morning to take care of the dogs and then go to work to support both of us.

I was sitting here earlier, just waiting for the time to go by. And I started wondering WHY I was hoping for the time to go by more quickly. I know I want to get up first thing and make calls to the doctor, but really, what is that going to solve? I’m not likely to get an appointment right away, so I’m still stuck in this anxiety limbo.

As I type, I’m restless. My jaw is hurting again. My back. My arm. I want to sob, but crying only makes me feel worse. I want to curl into a ball, but it hurts too much. I want to lie down and go to sleep but I’m afraid. I heard once that there are more heart attacks in the early morning hours, so I’m afraid to go to sleep because I’m afraid to have a heart attack overnight or in the early morning hours. For some reason my brain thinks that if I’m awake, I won’t have a heart attack. Or maybe I think if I’m awake, I’ll be able to get help if I start having a heart attack. Probably the latter.

This sucks so much. I hate this health anxiety. I hate that this is one of the few things that I’ve not been able to conquer. Sometimes I do so well, but other times I’m just so suffocated by it.

 

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Who do I do for?

Maybe about a month ago, I said to my father, “What do you think about having the family over for a Memorial Day barbecue?” He agreed, and although I offered to host the dinner at my house, he said it was fine to have it at his house.

I made this suggestion for a couple of reasons.

  1. My aunt and uncle (my mother’s brother and sister-in-law) have been trying to get us to come to gatherings at their house or their daughter’s house since my mother’s passing two months ago. In both cases, I declined, as I was not ready. My father went to the mother’s day gathering, and came back saying it was very difficult for him.
  2. My brother has told me how he wants “the family to stay together” and that he doesn’t want to give up “family get-togethers” even though Mom is gone. (I have so much more to say about this but…enh)
  3. I don’t want my aunt and uncle to become disconnected from my father and/or from the rest of my siblings and me.
  4. I wanted my father to have something to look forward to

I figured this would be very low key, so I didn’t make a big thing of it. I invited my aunt and uncle, my cousins, a friend of my mother’s, and my local siblings. I told people to bring any kind of side dish that they liked to eat, but that we would provide the grilled meats. I didn’t think about anything until I needed to buy the food a few days before, and even then I kept pushing it out of my head.

I thought Memorial Day would be easier because we don’t associate the “holiday” with my mother. In past years, if we ever did anything for Memorial Day, it was an impromptu cook-out at my house mostly because Hub wanted to grill anyway and sometimes my parents and brother would join us. I thought this would make everything easier.

When I went over on Sunday to bring some food ahead of time to my father’s house, I asked him if he wanted help setting up in the dining room, which is where we normally host more than the immediate family. But he wanted to have everyone in the kitchen. We went through a bit of work to make that fit, but he seemed to want to stay away from the formal dining room where we usually have gatherings. I understand, so I didn’t discuss it with him, we just did what we needed to for the kitchen.

There was a snafu with the grill, but we managed to get food grilled and put out on the island for people to serve themselves and then sit at the table together. I felt very disconnected from everyone. I spent most of the two hours disengaged and quiet. No one seemed inclined to hang around after eating.

My aunt–the one who can’t seem to get past her own grief for her mother–put her hand on my shoulder on the way out and said, “It’s a good first step, right?” I wanted to punch her in the throat. Instead I said, “thanks” and turned away.

We cleaned up, then everyone pretty much left. When I thought my father was okay, Hub and I went home. I was a bit annoyed at the “side dishes” that people brought (someone brought a little package of pre-cut fruit, someone else brought a little bowl of cut veggies, and someone brought a bowl of cole slaw), but I really just wanted the evening to be over.

I didn’t want to have this get-together. I didn’t want to be the one arranging it. I didn’t want to be there. I hated the whole thing. I didn’t do any of it for me. If it had been my preference, I would have not had any get together. I’m not ready. I’m not interested. It hurts too much.

My brother, the one who has said how upset he is that the family isn’t getting together? He’s the one who hardly ever spent time with my parents. He’s the one who doesn’t stop by and visit, or instigate any get-togethers. He never hosts anything at his house. He never arranges any family get-togethers. He never even calls to say “we’re heading out to dinner, want to join us?” He says he is going to invite our father out to eat to stay in touch with him, but he hasn’t done it. My brother’s wife saw our mother maybe once in the last difficult two months of her life. She just didn’t care. My brother suffers from major depression. He is being treated for major depression. I want to do what I can to help him. I don’t know how he is helping himself in this arena of staying in touch with the family. I think he is relying on me to do it, and I don’t want to do it. If he wants the family to continue to get together, he’s going to have to participate. Because I’m not going to step into my mother’s shoes and take over. It isn’t me. And I don’t want the things he wants. If he wants those things, he’s going to have to do them.

My father…I don’t know what he wants. I don’t think he ever HAD to do anything with regards to family gatherings, so he just doesn’t do it. If I don’t do it, will the family slow fall away from each other? My father doesn’t want to do anything. He never had to pay bills–my mother did that–so he has no clue what money he has or doesn’t have. He doesn’t know about his the house or car insurance. He doesn’t want to know. My brother–the one who lives with him–is basically doing all the bills. And the grocery shopping. And the cooking.

I basically just spent the last ten minutes sobbing. I’ve cried myself to sleep the last two nights. Today I just feel overwhelmed and completely overemotional and this isn’t even the first time I’ve cried today. Apparently not the last, either. As soon as I catch my breath, I just start again.

I miss my mother so much I can’t even… I just can’t even. Period.

I’m in pain. My body hurts. I saw my massage therapist but it didn’t help and she’s going on maternity leave so I won’t see her for months. I’m not sleeping. The acupuncture isn’t helping. My health anxiety is suffocating me. I haven’t been able to write anything (my books or anything other than the blogs) for years. Since before my mother got sick. I can’t figure out the paperwork for my mother’s bonds.

I feel like … nothing. I don’t want to engage with anyone. I don’t want to do anything. I don’t have the energy to be the person everyone else seems to need me to be. Not right now. Not today.

 

 

 

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Living in it

This morning I had the opportunity to talk to Mom’s oncologist on the telephone. Technically speaking, the phone rang at about 8:30am and when I saw the caller ID I had a moment of panic. What was wrong? What had happened?

Then I remembered that there was really nothing left for me to worry about with her doctor.

The doctor had called to pass along his condolences. He’d been out of the country during Mom’s final crisis and death. He called to talk to me about what had happened with her final days, at the hospital, and then at home. I would guess some of this information would help him build his experience with this type of cancer–which is still pretty rare in the grand scheme of things–and some of it was closure for him. We’ve known him for almost two years, and I really do feel he had compassion for our situation all the way through. On the phone he said pretty bluntly that he wished this had never happened to Mom, that we’d never met, that he could turn back time and change things for us. I thanked him for the thought. Then I fought back tears as I told him how much my mother liked him, how much I like him, how appreciative I was that he fought so hard for Mom. I thanked him for putting up with my brother–who questioned him at every turn and threw tons of trials and homeopathy and other things at him–when he really didn’t have to. He told me it was part of his job, but I disagreed with him and I told him as much. Not every doctor could have–or would have–put up with my brother’s tactics or attacks. My mother’s doctor did so with aplomb, and with great understanding for what my brother was dealing with. I thanked the doctor for taking such good care of Mom, and for giving us two years to be with her. It certainly wasn’t a given considering Mom’s aggressive cancer.

When I hung up the phone, the tears were stuck in my throat. Later, I spoke to my father who had called Social Security to see what he had to do in regards to my mother’s passing. He told me how hard it was to have the conversation, and I told him I understood how he was feeling. It’s hard to talk about her. It’s hard to talk about what happened. It’s hard to talk about our lives without her.

Hub’s friend was coming over tonight to hang out. He’s been Hub’s friend for a lot of years. He’s helped us move a couple of times (and we’ve helped he and his wife move a bunch of times), and he’s even helped us with things at my parents’ house over the years. He’s a good friend to Hub, and vice versa. He and his wife know my parents pretty well. I couldn’t even stay downstairs to say hello, I just wanted to come upstairs and hide. I didn’t want to have to hear another condolence. Another “I’m so sorry”. It isn’t their fault…what else do you say? What else do I say other than “thank you.” It’s just another chink in the armor every time someone approaches with that face or that voice or that head tilt that tells you what is coming. Sympathy, empathy, kind words, compassion. I know why and I understand, but I just couldn’t take it again today.

I want to hide from everyone who knows me because I don’t want to hear the sympathy. I don’t want to hear the pity. I don’t want to be reminded every time I talk to them that my mother is gone. How are you? How’s Dad doing? One day at a time.

It fucking hurts, every minute of every hour of every day. And it isn’t anyone else’s fault. I just want to live in it by myself. I don’t want to tell everyone how I’m doing or how I’m making it through.

Is this the anger? I thought the anger would be at my mother for being sick, or for dying, or for leaving. Instead I just feel ANGRY. And I just want to be alone. I know there’s no wrong way to grieve, so I’m living in it and living with it. And it so sucks.

 

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Everyone has their own story

My mother’s best friend (other than me) is a lovely, wonderful, amazing, loving woman who worked in the same office with Mom for a LOT of years. Sixteen years? Seventeen? I’m not sure specifically but M has been a part of our lives for what seems like forever. She loves my mother like a sister, and she’s basically part of our family. She and Mom used to be early-birds at the office, so they always talked early in the morning as they shared coffee or tea, or breakfast, or whatever. And in recent months, M has told me privately that my mother has shared a lot with her, especially how Mom worries about Dad, and how he will handle her death. Also, as we would have all expected, how Mom worries about all of us. They talk on a different level than Mom and I do, and I’m incredibly grateful that M is in our lives…that M is a part of Mom’s life.

M stopped by to visit on her way home from somewhere today, sort of on a whim. She called from the car and then stopped by Mom’s house. I ran over to say hello and to give M a hug, and I ended up walking her to her car as she was ready to leave. M told me that another co-worker of theirs–who has been living with cancer for something like 8 years–is coming to the end of her journey. That’s where M was this afternoon, visiting that co-worker/friend. She couldn’t bear to tell Mom that the other person had few days left to live. M and I hugged, we cried a little, I told her to come again soon.

I went back to Mom’s to say goodnight, then started my walk home. As I did, I realized that M has a very different struggle than I do with Mom’s disease. M’s husband died of cancer after a long journey (I don’t like the word “fight”), now her best friend is dying of cancer…and another co-worker friend is even closer to dying of cancer. When M and I hugged good bye next to her car, I told her I loved her, and I thanked her for being a part of our family. Her tears were for Mom–as were mine–but I think that we both cried for ourselves a little. She has her story that she has lived, I have mine. Neither is better or worse, just different.

I have my own losses to live with, deaths and grief that I’ve struggled with. This is my mother dying now, but I felt the need to comfort M for her losses. I wanted to make it “okay” for her, even though that is in no way possible. I find myself trying to comfort the other people who talk to me about Mom. My father, my aunt and my uncle, my cousins, Mom’s friend, other extended family members… Not that they are ignoring me, because they aren’t. I don’t mean it that way. I don’t know what I mean. There’s a lot of that going on with me these days. I feel mixed up, numb and emotional at the same time. I can’t tell you how many times I’ve sat somewhere, absolutely silent and still, but inside I’m  wanting to rage and throw things and just go crazy. I don’t, but I want to.

Sometimes I wonder if one of these times when I break down, when I have some outburst or whatever, that I won’t be able to come back from it. I think that’s why I don’t always let go…there’s just this fear that I won’t be able to recover or crawl out of whatever pit I let myself fall into. It hasn’t happened yet, and so I hold on that small ray of hope.

 

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