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Finding connections

I wasn’t sure what to do this year about mother’s day. Last year I sent Hub off to his mother’s house without me, and I spent part of the day with my brother and his then wife (now ex-wife). I talked with T about this on Friday, because I feel some guilt about not going to my mother-in-law’s to be with her, but I just am not ready yet this year. I know she understands–as does Hub–but I am at heart a people-pleaser, and so the guilt sat heavy with me. In the end, though, I couldn’t make myself go.

My father had mentioned to me Friday evening that he was going to go to the cemetery to visit my mother’s grave and he asked if I wanted to go. I didn’t answer him at that point, but Sunday morning when I saw him, he brought it up again. He said he knew it made me feel “uncomfortable”, but he wanted to make the offer for me to join him. I tried to be gentle in responding when I said to him, “I don’t feel uncomfortable about going, but the truth is, I don’t feel a connection to Mom there. I don’t feel it to Nana and Papa, either…it doesn’t work that way for me.” (my grandparents are buried in the plots next to my mother). For real, I feel more of a connection to my mother in her “den” closet, where she had a bunch of books stashed on a bookshelf…gardening, trees, cookbooks…I stumbled on them at one point and ended up crying. Because that’s my mother. The cemetery is just a marker for her physical body’s last resting place, but it has no history for me with her. My father only said OK and that he was okay to go alone, which I had to trust was true.

Somewhere around ten a.m., I texted my brother (the one with the ex-wife) to see what he was doing that afternoon. He said “nothing”, so I asked if he wanted to do something. What I really wanted to do was go back to the nursery where Mom and I used to go all the time, and where he and I went after she died. I also offered up the opportunity for him to come to my house to help me bake peanut butter cookies, which he (and my other brother) scarf up as fast as I can make them. His response was a preference to go to the garden center, so in some corner of my mind I knew it was the right thing to do. Even Hub said as much when I told him my plans for the afternoon while he was with his mother…he said my mom would be happy to know I was spending time there with my brother.

So after lunch, my brother and I set out for the nursery, which is about 20 minutes away. We talked a lot in the car about how he’s been doing with his depression and his medication, as well as some other health issues he’s dealing with. But once at the nursery, we talked about plants. We walked around the big place for about two hours–which leaves me exhausted and in pain today unfortunately–just chattering and touching plants and gagging over the high prices. We bought absolutely nothing, but it was worth the time and energy and pain, because it felt right. This brother and I, we have always been the closest of the siblings–with the exception of his married life where he withdrew from the whole family…and even then I tried to stay in touch with him as much as it was possible–so this connection felt good to renew. I know he’s struggling with his depression and his newly single life and his desire for a partner and…well, lots of stuff. And part of today was to remind him that he’s not alone. Doing that for my mom and for him made the day work for me.

I miss my mother so terribly. Every day. I feel like my identity without her has been lost. I don’t know how to get it back…yet. I’m still searching, and maybe someday I’ll find my purpose again.

I described (to T and a friend) the run-up to mother’s day as “being poked with a cattle prod when you’re already on fire”…and it’s true. That’s so much how I felt with all the television commercials and the holiday displays in all the stores and the radio commercials and facebook and instagram and on and on. I worry that it will always feel this way, this painful, this sad, this lost. Living without my mom has changed my life and changed me at my core. I don’t know how to adjust to that, or that adjustment is even possible. Somehow, I have to find a way forward. Last night I watched Bad Moms on television while Hub was still at his mother’s. There’s a point in the movie where Mila Kunis is talking to her movie daughter and she basically says, “I know you can make it through this because I’m your mother and I know what you’re made of.” It was such a dumb, funny, stupid, crazy movie, but that scene and those words (which I can’t remember exactly) really hit me hard. I know my mother believed in me and believed in my strength and my ability to persist. I hope I can find a way to continue to make her proud in that aspect as I try to find my way.


 

As a minor update, I finished all my bactrim pills successfully. I don’t know how much I feel better, but so far it seems the smell is gone, so I take that as success. I wasn’t too much more itchy the last day and half, so that was good. My stomach isn’t entirely back to normal yet, but I know the bactrim stays in your system for several days following the last pill. So hopefully another couple of days and my stomach will be better.

 

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Today’s challengers: But v And

 

ANDNot sure if it will be a knockout or not, but here we go.

I spent almost ten days trying to track down a blog post I am POSITIVE that I wrote and published…and yet I’ve been unable to find it. Say, if any of you come across it, let me know! Anyway, I’m going to go ahead with this post and if I repeat anything, you now understand why it was so.

During my last therapy session with T, we went on a track of talking about accomplishments and the past. I told her that I knew I’d made a list of accomplishments, and that at the same time as writing the accomplishment (and/or thinking about it), I always ended with a “but…” For example…

I moved out of my parents’ house at 21 years old by purchasing a townhouse on my own, about 30 minutes away from my family. BUT, less than a year later the person I thought was my once-best friend, broke into my house, ransacked it, and purposefully stole items she knew were sentimentally important to me. Therefore leaving me feeling violated and vulnerable, and forcing me to install bars on my windows in order to continue to live on my own.

So I basically negated my accomplishment in the same breath as I made it. Why? Why do I feel the need to cancel out my accomplishments with negative follow-ups? The negative follow-ups ARE true. They did happen. But they don’t cancel out the actual accomplishment, because those, too, are true. An old Dr. Phil (don’t judge me!) ism was, “saying but cancels out everything you said before the but.”

So T told me that I need to learn to replace the “but” with an “and” because both parts of the statements are true. There was an accomplishment. AND something else happened.

I moved out of my parents’ house at 21 years old by purchasing a townhouse on my own, about 30 minutes away from my family. AND less than a year later the person I thought was my once-best friend, broke into my house, ransacked it, and purposefully stole items she knew were sentimentally important to me. Therefore leaving me feeling violated and vulnerable, and forcing me to install bars on my windows in order to continue to live on my own.

Yes, it’s TRUE! Both those things DID happen. And they were both important parts of my life. And one does not cancel out the other. What a light bulb feeling. So important to me that I wanted to use it as a writing exercise, to more firmly implant the idea of AND into my mind and life. And when I told T that, she got up from her chair and grabbed a pad and drew me the “And…” that you see above. She told me to take it home and keep it as a visual reminder, because I can be a very visual person. I scanned the image into an electronic file and cleaned up the background (it was a fancy notepad). It’s on my desktop to look at as often as I need, and the hard copy is in my bedroom.

I’ve spent much more time since that conversation with T thinking about the words I use when I speak. I had a long conversation with Hub over dinner last night talking about how we speak to ourselves (in regards to an issue HE is grappling with)…not just negative self-talk, but in regards to the word choices we make. I’m such a semantics type of person, why the difference between “but” and “and” didn’t occur to me before is crazy. Then again, it may have been in my writing repertoire and not in my speaking world. I always write better than I speak because I take much more time to formulate (and edit) what I write, versus speaking. These days, I’m trying to take more time to formulate my speaking words than I used to. More time to consider what my words actually MEAN. I hope that’s a good thing…I hope I can make it meaningful for my journey forward.

 

 

 
 

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A stitch in time

My mom crochets. My grandmother used to crochet (and knit). I, in fact, still have lots of Barbie doll clothing that my grandmother knitted and crocheted for me. I have other pieces that my mother sewed for me. They are in a weird, flowered suitcase straight out of the 70s. The suitcase used to live in my guest room so that I could make sure nothing ever happened to it. Here in this house, the suitcase is in the basement, but on the top of a bookshelf where it can’t be touched by any flood water (our old house had a basement flood once). Those items are very important to me, even though they haven’t been used since my childhood.

My grandmother tried to teach me to crochet. The best I ever did was just as square, because I would get lost or frustrated and give up. I never learned to knit. My grandmother figured if I couldn’t crochet, knitting was out of the question. Years and years later, I discovered a knitting board, which I purchased and became obsessed with for a brief period of time. I made hats and scarves for lots of people, some with fancy fun yarn, some with some cool patterns. Then I started having more muscle issues, and I realized that using the knitting board was bad for my posture the way I was using it. I had to look down, it hurt my neck. I had to hunch over my lap, it hurt my shoulders and back. And the constant stress on my fingers and hands made them hurt. I ended up giving it up because although it was relaxing to do, it made me hurt a lot. I have two different size knitting boards, one is about 18″ wide, the other is 28″ wide. Both of them have half-started projects on them that have been sitting idle for years. I miss it, but every time I try to pick it up, I end up in pain again and I put it away. I took the smaller knitting board with me to the hospital during my mother’s surgery, but I literally used it for less than half an hour total, and even then it was in fits and spurts just to keep my hands busy. Then I put it away again.

My mom was crocheting lots of premie hats with leftover yarn she had. She made them and donated them repeatedly to different hospitals. She had to have made more than a hundred of them over a couple of years. Then she stopped, I think because she was busy with other things and I kind of think her hands started getting somewhat arthritic. But I know she misses it, and I know it helps her relax. And I know she has more time on her hands these days than she used to. I encouraged her to pick it up again and do something small. When we went to her wig appointment, they indicated that a lot of the chemo caps they have are donated because they have clients who can’t afford hats, so they offer the donated hats to those clients. And there was conversation about Mom’s crocheting and the premie hats, and how maybe she should do some chemo caps.

The opportunity to do something, to take herself outside of her own head was good. Mom went to the internet to look for patterns and realized that you basically can do any hat. So she worked some stitches and made a couple of hats. And then I invited her to go to the yarn shop that is about ten minutes away. So off we went on Saturday to shop for some fun yarn. It was so lovely to be in the moment with her, to touch the yarns and discuss the colors. To laugh and talk about what would work and what was pretty and what was soft. We bought four different skeins of yarn, two for her and two for me. And today, I went over to her house and sat at her kitchen table and she tried to teach me to crochet again.

And while she worked on one hat and I worked on the mess I have that may or may not ever be a hat, we talked. We talked about nothing and lots of things. My niece’s upcoming wedding, my brother and his wife, my other brother, my parents’ basement remodel-in-progress. The dogs. The birds. The yard. Her appointments. A drug trial. The yarn. My horrible crochet stitches. My grandmother. My husband. Her husband. Food. Drinks. Stuff. There was no music, no television, only the ticking of the clock over her doorway and our voices (and occasionally my cursing as I struggled with the stitches and her laughter at me).

Time. I know I want more of it. Don’t we always? But at least in these moments, I have them. And I will always have the memory of them, knowing I spent my time in the right way. Not worrying about her treatment or what might be, but being there with her and enjoying the time spent together.

I’m grateful and thankful for this time. And for the friendship I have with my mom.

PS: It will never be a hat. But it makes a lovely doily…if I ever needed one of those (and in this particular color palette). ‘Tis a fine doily, English, but ’tis no hat.

See all the purdy ruffles?

See all the purdy ruffles?

(thanks to Hub for his lovely modeling job)

(thanks to Hub for his lovely modeling job)

 

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Finding happy

Had a session with T last week. Of course we talked about my mom and her cancer situation, as well as the situation with my dad and brother. And gently, but firmly, T reminded me that I am not my mother’s sentry. I want to protect her, but really she knows how to protect herself. I have to take a step back and offer her my support without trying to take over. I had already started doing that before my session with T, but she did reinforce that for me.

So among some other conversation, T and I talked about my relationship with food. I told her how I feel traumatized every time I take the digestive enzymes my nutritionist recommended for my heartburn and stomach issues. The enzymes seem to work (this past week not so much, but prior they were working REALLY well), but they remind me so much of all the “herbal” pills I had tried to buy and take growing up to lose weight. There’s a smell to them, and the look of them is not much better. And I can’t help but smell them every time I open the bottle. She suggested I put a cinnamon stick in the bottle and/or to inhale before I open the bottle so I can’t smell them. We talked about being mindful with my food, but truthfully–as I told her–I either think about it too much, or I think about thinking about it. Which sounds weird. So I’m not sure what direction to go, because I don’t want to obsess over food, but I don’t want to eat unmindfully. One of the problems I have is that I have to think about food constantly because of my gluten/wheat issues. I can’t go out anywhere without spending time thinking about where we’re going and will there be food for me and will I get sick afterward and will it be worth it. I can’t go to other people’s houses without thinking about it, or even randomly pick up a chocolate bar in the store. I can’t even randomly pick something out of my pantry or refrigerator without thinking about the ingredients because Hub is not gluten/wheat free. So I have to think about what I eat all the time.

T asked me to think back to a time when I felt like I wasn’t worrying about my weight or my body image. And there was a time, shortly after we moved into our house from the townhouse we first lived in together. I was deep into my writing and felt that I was a part of a larger group…and that I was touching people’s lives. So she asked me how I could get back there, but I told her I wasn’t likely to ever be in “that place” again, because it was years before I realized I had food sensitivities. Back then we didn’t think about or worry about gluten/wheat. I ate what I wanted to, when I wanted to, and in the amount I wanted to. Now I can’t do that with pretty much anything. I eat too much cheese, I get sick. I eat split pea soup, I get a stomach ache. I eat GF pretzels, it makes my stomach hurt. My favorite cheddar cheese potato chips? They leave sores on the inside of my mouth. Pineapple? Burns my lips. Fritos (which I love but actually can’t eat at all anymore) makes my lips burn, too. Spinach upsets my stomach. Chocolate upsets my heartburn. Tomato sauce upsets my heartburn. Popcorn gets stuck in my teeth and gives me toothaches (stupid delicious movie theater popcorn that I haven’t had in about ten years.) I avoid sugar substitutes, so a lot of foods are off limits because I can’t take the sugar substitutes in them. I literally never pick anything up at the grocery store without reading the ingredients and searching for items on my no-no list. I’ll never be able to just eat what I want to eat. I’ll never not have to think about it. And it sucks, because it makes food an obsession of sorts for me, which is one of the last things I need.

And I miss writing. I know that I’m writing here, and I hope that I’m touching people’s lives…but I miss the writing that I loved so much. I miss being buried in those words, in my characters, in the worlds that I created. But I can’t seem to find my way back there. I can’t seem to be in that place anymore. And that hurts me, too, because that was a happy, comforting place to be. It made me feel like I was doing something good, offering something to people, and I felt fulfilled. I want that again, too.

 

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How we deal

We are all different. We all deal differently with things. Some of us learn new ways to deal, some can’t ever change that part of themselves.

My way of dealing used to be researching everything until I was cross-eyed, sick to my stomach, and anxiety to the point that I couldn’t breathe right. I’d read everything I could on whatever the subject was (generally relating to my health, or someone else’s health), even when one thing contradicted another. I’d come away with probably less knowledge or understanding than I’d started with, and I’d be filled with stress and anxiety. And then when I was done trying to figure out how to breathe again, I’d dive right back in and start researching again. I thought I was doing something and that I was helping myself. I thought I was educating myself and learning how to fix what was wrong with me…whatever that might have been at the time. It was all a lie. Although I might have learned a few things, most of it just made me worry more and I ended up without any resolutions to anything I was researching.

I’m not researching anything anymore. Not for me, not for my mother, not for anyone. I don’t want to live that way anymore.

My brother started researching things as soon as he heard about my mother’s surgery. He’s tenacious and smart, and he thinks he knows better. Than pretty much everyone. Maybe even the doctors. He’s aggressive and angry, all of which comes from his abject fear. He needs to feel in control…I understand his quest, but it’s difficult for me to deal with. My mother’s pathology came back before she even left the hospital. Other than the original findings from the original uterus scraping/biopsy, they found nothing else in the organs they removed during her hysterectomy. But one lymph node had “microscopic” cancer cells. Her uterine cancer was diagnosed as stage 3, with a cancer that is generally aggressive. I want to say the doctors seem positive about her prognosis, but honestly I did not get the chance to ask because the last time I saw him, it was so brief and we were almost out the door when he showed up to see my mother. But his recommendation is for chemotherapy…a full course. He has already set her up for a second opinion with a colleague (my father is sure the colleague is just a “yes” man for the original surgeon and will rubber stamp his recommendation) in about ten days. She has chosen to focus on her recovery from the surgery, my brother has decided to spend the next ten days on the internet, reading and questioning everything…including the doctors. He sent me an email this morning (and to my father) with the subject line “opinion.” I skimmed over the first line of the email, then directed Hub to respond to the email, requesting that my brother not send me anything that has to do with his internet research. Then I asked Hub to delete all the emails to and from that might include anything that the original email said. Hub did it, and I went on with my day (after crying for a few minutes because I felt like I wasn’t do anything to help my mother because I wasn’t participating in the researching).

I went over to see my mother after lunch today, bringing over some groceries that Hub and I picked up this morning for them. Almost immediate I was attacked by my father. My father researches, but he only reads what he wants to read, and only understands what he wants to understand. He only hears what he wants to hear, and is just as likely to misinterpret and/or misremember things. He questions everything, but from a place of conspiracy and from the expectation of the worst. He thinks every medication out there is only to make pharmaceutical companies bigger and richer. He is sure everything that happens is going to be the worst case scenario. And he’s scared shitless. And driving my mother crazy. She doesn’t want to discuss this every day, or spend the next ten days until her appointment worrying about it. She wants to recover, she wants to live, she wants to do normal things. He wants to talk to her and spend his days researching and questioning and thinking and worrying and looking for the worst that could be. He wants to question the doctors and tell her everything he thinks they did wrong. He wants to tell her that she’s not worrying enough, or thinking enough, or planning enough. She wants to find faith and hope in G-d and in the future…in the daily workings of her life.

I told my father that nothing was certain. That the doctors wouldn’t be able to give him any certainty, even if he would believe them if they did (which he wouldn’t). They could give him probabilities and percentages, but even those are guesses. Because every person is an individual, and everyone is going to react differently. The doctors can’t give him what he wants, which is for his wife not to have cancer. My father argued with me every time I opened my mouth. And with every statement or attack he made, I could see my mother sinking down in her chair. I finally told him to stop talking to mom about this stuff. I told him that he might need to deal with it this way, but she didn’t want to, and he was just making things worse for her. I told him to go talk to my brother and to my uncle, both of whom want to do research and talk endlessly about everything. But to leave me and Mom out of it. He stomped off, angrily, and went to talk to my brother on the phone.

I turned to my mother and told her that she needs to take care of herself and her headspace. That she wasn’t responsible for how my father feels or what he does, but that she IS responsible for how she feels and what she does. And if he continued to talk to her about this stuff, she needed to reiterate that she didn’t want to hear it and that he was upsetting her. I then offered to let her come stay with me for the ten days, which we both knew was just a joke. I don’t want him to bring her down. I want her to feel positive and up and enjoy each day she has. None of us has anything promised to us. If she doesn’t want to spend her days worrying and reading the internet, she shouldn’t have to.

I want to be able to spend time with my mother doing normal things. If it helps her to feel normal by talking about every day normal things, I’m good with that. If she wants to talk about health stuff, I’m good with that. But I’m not going to spend my time thinking and worrying and researching and making myself ill. I can’t do anything for her by doing that. I can do the most for her by being in the moment and helping with everyday things. And if necessary, reminding my father and brother to go talk in another room where we can’t hear them.

 

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Outside influence

So my last session with T was spent talking about my mom and her illness…and how I’ve been handling it.

There are a few good things that have come out of my mother’s illness, which is a pretty difficult statement for me to make. I know that I have been able to say that about my history with physical and mental illness, but to say that about my mother’s illness makes me very uncomfortable. I would never ever want someone to be ill so that something good came out of it, if that makes sense. But since the illness happened, at least something positive has come out of it. A few things, I guess.

I can handle it. Years ago, my grandmother got sick. She was pretty old by this time…in her late 80s I think. She started falling into dementia, and then had a stroke and went deep into the illness. She had caregivers 24/7 taking care of her in her home. She didn’t communicate anymore, which made it difficult to spend time with her. God bless the amazing women who cared for her. And God bless my mom, who went to my grandmother’s house every single evening to spend time with my grandmother. She would work a full-time job all day, come home and cook for my brothers and my father, then go spend several hours with my grandmother, who lived about fifteen minutes away. This went on for years as my grandmother’s health declined. My mother told me she wanted to have no regrets, so she did what she felt she needed to in order to live that way. I was sick during a lot of this time, but I tried to see my grandmother as often as possible considering I didn’t drive and lived over thirty minutes away. I struggled to be with my grandmother…which is a terrible and difficult thing to admit. I loved that woman deeply, but the person huddled in the wheelchair all day was not my grandmother anymore. Anyway, all this made me wonder how I would be able to handle my mother as she aged. Fortunately for me, she lives very close so I can walk to her house, so driving isn’t an issue, nor is weather. And with this illness–which is much less severe than what my grandmother lived with–I have been okay. I’ve been able to step up and go with her to doctor appointments. I’ve bought groceries for her. I have spent time taking care of her at home and outside the house. I have been able to handle seeing her laying in bed  or on the couch, and being with her at an ER/urgent care facility while she was prone on a gurney. I was even able to handle seeing vital statistics on a monitor and not get obsessed with the numbers in the urgent care facility.

I can handle illness without obsessing over it. I can handle numbers without obsessing over them. More good news for me. I also didn’t Google anything while my mother was sick (except she ASKED me to once, and I spent about two minutes attempting it, then suggested that she contact her doctor instead). I was so proud of myself because although I wanted to turn the monitor away in the urgent care so I didn’t have to see her pulse or blood pressure or heart rhythm, I didn’t because I knew my father was watching it. And I handled it. I was able to turn it off (figuratively) and allow the fantastic doctors and nurses to care for my mother in that way. And I cared for her mental health. I kept her in a good space as best I could. I changed her physiology by changing her brain chemistry, by keeping her in a good mental space. I have been able to keep her on an even keel when it comes to what food she can and won’t eat. I’ve been able to keep her grounded when it comes to food and her stomach issues. I told T, I almost feel like I went through all those food and mental health issues in order to be prepared for this very moment. The moment when it would allow me to help my mother through her health struggle. A silver lining.

I told T how pleased and proud I was to be able to handle so much that directly attacks my anxiety levels. Especially when the doctors thought my mom was having heart issues…which is a huge trigger for me. But I handled it without a single moment of anxiety or panic. I gave over all the control for my mother’s physical health to the amazing doctors and nurses who were caring for her. They were attentive and confident, and I did not give one thought to second-guessing them.

Then it happened. My uncle, who is a vet, had been attempting to contact my mother because he knew she had a cough. And when he continued to get the run-around from my parents, he contacted me by email. He and his wife are very much into health issues. They have many health issues and they feel they have the best doctors and the most knowledge on this earth. It’s like health and physical issues are a hobby for them, you know? It’s what they want to talk about, it’s what they harp on…they love it. So the day we take my mom to urgent care (the 2nd time), I was with them for several hours…four or five. Then I came home with my dad while my brother and SIL went to stay with my mother. Then I spent the rest of the afternoon keeping up communication between my parents and my siblings. So I didn’t check my email until 11pm, and there was the email from my uncle. And in that email, he basically vomited some of my worst fears all over my computer screen. If I had been prepared (which I will be now), it wouldn’t have been so bad, but I wasn’t. The email was titled with my mother’s name, so I figured he was emailing to ask how she was REALLY doing and could he offer any help. Instead, I got a long dissertation on how she wasn’t being treated properly (which there’s no way he could know this) and how dangerous her potential illness could be and did I know that SHE COULD DIE?

AAAAaaaiiiiieeeeee. FUCK ME. I had spent so much time NOT googling her symptoms and allowing the doctors to do their jobs. I was taking notes for my parents during the time Mom was in urgent care and listening to what the doctors were saying so we had a record of what had happened. I asked questions where I felt it was needed, too. But I was keeping myself in check and not going panicky or nutsy. And I wasn’t looking ahead, I wasn’t thinking of the worst scenario. And along comes my uncle and just pukes all over me, so to speak. It actually took me quite some time to respond to him. I understood how frightened he was and that he was responding the only way he knew how (and with what little information he had), but it was really difficult for me to deal with.

Luckily, I was able to restrain myself from obsessing over the email (I skimmed it first because I was really tired, and boy am I glad!), but I was angry with him. I answered him very briefly, basically telling him that Mom was being properly cared for but that it wasn’t my place to share her medical information with him. That was her choice and so he had to talk to her directly.

T reassured me that I handled things well, and that she was proud of my success. I am proud, too. I’m also glad that my mom is on the mend, albeit slowly.

 

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Essay of me

When we’re young, we get scared, and we go to our parents or people we love for support and comfort. We cry, we talk about the boogeyman, we complain of feeling sick, of things that hurt, of things that frighten us. At what age does that stop? And why?

An essay on ButYouDontLookSick.com titled, “It is 5am. It’s a horrible, ugly hour to wake up, not yet morning, not quite night.” by Christine Miserandino inspired me to write this essay of my own. I have a 5am, only for me, it’s 1am, 2am, 3am…it’s any hour after a normal person’s bedtime, namely my husband. When he sets off to dreamland, my waking nightmares tend to haunt me.

I am a night person, but the night is the worst time for me. In the darkness, things hurt worse and I feel the pain exponentially more. And I know that it is my anxiety that heightens the feelings, but I am helpless to stop or change that fact. I worry…I worry that the pain in my arm and my chest and my jaw are because of my heart, despite having been checked out by a cardiologist. I worry that the headache and the pain in my neck that I know is from clenching my teeth when I sleep (and am awake) are signs of an impending stroke. And the anxiety makes my heart beat faster and my breath come less easily…but I worry those things are signs that I’m dying. The pain the back of my thigh, is that a blood clot? Will it race from my leg to my heart or my brain?

And what will happen to my husband and my parents and my siblings if I die? How will they suffer with the pain of loss? How will they cope with the hurt of never being able to see me again? What will happen to the friends I’ve made that I may not have spoken to recently? Will they be haunted by guilt of not staying in touch more often? Will they be crushed by their conscience that often told them I wouldn’t go out or spend time with them because I wasn’t well…and they didn’t believe me? Who will watch my precious dog all day when I’m gone? She can’t go 8-10 hours without time outside during the day…my responsibility since I work from home. Who will comfort her when the storms rage and the fireworks explode nearby?

And in the darkness, these thoughts come to me, compounding the pain and anxiety I’m already feeling. I feel crushed by the weight of all of this, and yet I am unable to make any of it go away. I sit up—in the only position that comforts me—shoulders hunched, body curled over, legs crossed, knowing that even as I do, this will only intensify and lengthen the duration of my pain. I cannot tell you how many nights I’ve spent like this, sometimes struck with dizziness that keeps me off-balance and feeling like I’m on a rocking sailboat, since I first became ill. Diagnosed with multiple syndromes that are invisible to everyone else but me. Though there are names to categorize what I deal with, they are mostly incurable, and I am unable to take medication for any of them because of my sensitivities. So when I’m flaring, I suffer through my days by hiding away, either physically or figuratively, from the people around me. My husband sees most of it, my mother recognizes a lot of it, my siblings offer polite sympathy, but no one else lives all of it but me. And at night, I suffer alone, because the guilt of dumping any more of this on my husband—my main support—is too much. He wakes early, works long hours to support us, spends much of his time taking care of me and himself and the dog when he is home. I cannot wake him at 1 in the morning to tell him I’m hurting, or I’m afraid. He can’t fix it—which is what he wants to do—and telling him only to have him feel helpless is even more of a burden to both of us.

Alone in the dark, I do not reach for my husband and his comfort, I cannot sleep, I can only be awake with my demons. And for those of us who suffer with diseases and syndromes and…well, life, sleep is what rejuvenates us, what refreshes us, and what repairs us. So not being able to sleep only makes everything worse. There have been nights when I never set my head on a pillow, and when my husband wakes, I am quick to put myself in a prone position so he doesn’t know I’ve been up and in that horrible physical position all night. And to my shame and embarrassment, there are mornings where I wish I could beg him to stay home with me, so I am not alone in the light. Because alone in the light when I’m feeling this way is equally as frightening as being alone in the dark with him beside me. But I keep my thoughts to myself, because he is the bread-winner, and he has to keep his job. Asking him to stay home is a luxury we cannot afford often, and I must save it up like he saves his sick-days to take care of me. I must only ask when I really really need it. But he never hesitates to offer, and he never hesitates to come home early. I am thankful for these things, don’t get me wrong. I am lucky in this instance, because although he doesn’t have the capability to really understand, he does try.

Reading Christine’s essay brought tears to my eyes, because I could literally feel her pain, and I could feel her distress, because it is my life as well. And when I tried to post a comment, I wrote three, and deleted them all. Embarrassment raced through me because I didn’t want people to know how I feel in the darkness of my illnesses. It was embarrassment because I couldn’t admit how I feel, and embarrassment because I was embarrassed. So I posted nothing, and I tried to explain to my husband why I needed the extra few minutes to read Christine’s essay before turning off my laptop. And I reminded him of her “Spoon Theory” so he would know who I was talking about. And I admitted to him that I understood everything Christine had written, because I’ve lived it myself. And I admitted to him that I’ve never really shared all these intense and intimate fears even with him. Because I was embarrassed and ashamed to feel those ways.

And in the light of the morning, I was thinking about children, and how they can admit their fears. How they seek the comfort of those they love to help them assuage their fears. And yet, I, as an adult, can’t even admit to or seek comfort from the one person in the world I know loves me more than anyone in the world. He’s never put me down, he’s never made me feel weak, and yet I never told him the things I’m admitting here in this essay. Why? What am I afraid of? Why can a child speak so easily of their fear, and ask so easily for comfort, when I can’t?

But I know deep in my heart it is the fear of being a burden. I am already that, I cannot dump even more on the person who cares for me, who works hard for me, who needs to be healthy because I am not. And it is the fear of how people will treat me. I don’t want to be pitied, or coddled, or seen as a “disease”…and I don’t want to be treated differently.

I’m sitting here writing this and I can feel the tears dripping down my face. I’m not sure if I’m crying for the life I have lost, or what I feel I’m taking away from those around me. I only know when I’m in the middle of a flare, my life is different, and I hate it. I hate the fear that engulfs me and the anxiety that plagues me. I hate that it changes me into someone I would never want to be. And I hate that it makes me secretive about how I feel and who I am. That, most of all, is why I’m writing this.

(written 7/2010)

 

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