Monday, January 28, 2013

I haven't told many people

The summer before I got sick.

I haven't told many people what's wrong with me.

When I wonder why I haven't told people, my mind wonders back to the time I first met this girl named Colleen. I was 19, and she was in her mid to late twenties. I was in college at the time. Truth is, I can barely remember any college friends' names now, but recently, images and memories of Colleen keep resurfacing in my mind.  

Before I tell my story, I need to first introduce you all to Colleen. She looked like a normal girl, blonde hair, kind face, mellow looking. Except, she arrived to class every Tuesday afternoon in a wheelchair. One of her friends drove her to class and pushed her up a ramp into the classroom. So, one day during the beginning of the semester, Colleen stood up and told the class about herself. She said that she was very lonely and was looking to make friends, which was the main reason she was taking the class. She shared how she was able to walk, but used the chair when alone due to severe fatigue and dizziness that came on unexpectedly. She shared how she had nausea every day, anxiety, depression, and low blood pressure. She shared how she often felt like passing out due to low blood sugar, so she had to eat in class but promised not to eat crunchy foods that would distract the class. She ended by saying she welcomed anyone to reach out to her who wanted to become a friend.

I introduced myself after class and we arranged to meet up for dinner. I was surprised when Colleen showed up driving her own car. Wait. She used a wheelchair, but could also drive and walked herself into the restaurant? Hmmm. Well. We ate at the Olive Garden, and Colleen didn't say that much or seem too animated. She didn't seem like she was having fun, and she spoke very slowly. Afterwards, we walked over to the local mall and browsed through some furniture. Colleen sat down on one of the sofas and asked if I minded if we just sat there on the sofas for awhile. I said sure, and we sat there with not much to talk about for quite some time. I felt awkward but tried not to show it.  Colleen was apologizing that she didn't speak much at the restaurant. She said that she was feeling anxiety, and it made her weak and dizzy with an upset stomach. I said, "Oh I'm so sorry! I didn't want to make you anxious at all!" I was trying my best to appear calm and cool, so that it would translate to her. But Colleen said that the anxiety was uncontrollable, and came on even when there was nothing to be anxious about. I tried to comprehend that, but couldn't. Then Colleen said that she felt very tired and sick, and that she should head home. When we got up to walk, she walked extremely slowly and didn't speak at all. I was concerned that she wouldn't make it to her car alright, and that it wasn't safe for her to be driving like that. I brought up my concern, but Colleen said that she would be ok once she sat down and relaxed in her car for a little bit. 

I felt awful letting her leave my sight, and stayed in my car trying to watch for her, but I lost sight of her. I didn't call her to see if she made it home ok because I didn't want to seem too pushy, but I could barely sleep that night worrying about her. Later that week I called her and was so relieved when she picked up the phone. Whew! She was alive. We set up a time where I could go visit with her at her house.

Colleen lived downstairs in her parents' basement. It was a nice house, but the basement was dark and gloomy, as there weren't any windows. I felt trapped in there, and felt antsy because I wasn't used to just sitting and talking. We sat down and made small talk. Colleen was telling me how she had hoped to meet a man in class, as her big dream in life was to get married and have kids. A few times during our conversation, she broke down and started crying. We talked about her symptoms, and she explained what it was like to have Chronic Fatigue. That was the name of her illness, Chronic Fatigue. She said that some days she was so depressed, she could barely get out of bed. I told her that walking outside in the sunshine always cheered me up, and she responded that she would love to go walking, but she felt so tired and sick that it was hard for her to do that.

Suddenly, a warning bell went off in my head. Wait. She was able to walk into the restaurant the other day, and walk in the mall, but she wasn't able to go on a walk outdoors? I looked at my friend, who was much bigger and heavier than I was. I saw how gloomy and overweight she was, and thought, "Why, this girl is just lazy and depressed! She doesn't walk, and lives down here in this dark basement. She has herself to blame. She is not trying hard enough." I instantly felt myself withdrawing from her, and wanting to end the friendship. Colleen sighed, reaching into her jar of Hershey's Kisses and offering me one. She said, "I know I'm not supposed to have chocolate, but some days this is all that keeps me going."

"Ah hah," I thought, "She purposely doesn't eat well. She has brought on her weight and depression by herself. I don't have pity for her anymore." I took the Hershey's Kiss but didn't open it. I was worried that if I ate anything with her, I would end up getting nauseous, since she had mentioned that she was nauseous on and off every day. I figured she was one of those people that just got a stomach bug very often, and I didn't want to catch her stomach bug. I made an excuse saying that I had to get going, and that I would call her so we could hang out again. I never called her again.

I went home and told my mom that I didn't think Colleen had Chronic Fatigue. I shared my suspicions with my mom and told her that I intuitively sensed that Colleen was actually just simply lazy, and that she brought her problems on herself. I felt bad for her that she was concocting all this misery for herself just to get attention. Not my cup of tea. I soon forgot about Colleen and moved on with my busy life.

Fast forward fifteen years later. For my entire life, I had been super ambitious, super determined, a super achiever, always active, always busy. I've been blessed with a generally sunny, warm, positive personality and people have often remarked how calm, relaxed and chill I was. I've worked hard, achieved all my career goals, was successful, independent, in shape, healthy, very optimistic, and on top of my game.

Now stop the clock as soon as I turn age 33 and a half.  Take a huge black sharpie marker and cross a big huge X over my happy lifestyle, personality, stability, temperament, physical health, emotional health, and psychological health. Dig that X deep and firm, so that every positive trait and  positive aspect of my life flips over on the page to reveal the dark underbelly of the exact opposite trait.

I used to be fearless. I dreamed big and knew no limits. I rode on the back of motorcycles in the dark with strange men I didn't know. I traveled on my own across the US and other countries, flying by myself and making plans on the spur of the moment. I left my hometown with a guy who promised to marry me, and I didn't tell my parents. Several months later, he ended up tricking me into marrying him for his green card, but heh. I moved from Pennsylvania to NYC without knowing where I'd stay, and without having a job there. I was so psyched that I'd get a job as a teacher in NYC that I moved there by myself without telling anyone, got my own apartment, and was living there several weeks before I landed a job. My dream job at that time, the beginning of my career as a teacher. I didn't tell my family until Christmas, three months after living there. They had no clue I wasn't even in my hometown, and I hadn't told them because I wanted to go out on this adventure by myself, without them warning me not to go. I was fearless. I was out to conquer the world.

But then suddenly at age 33 and a half, my fearlessness morphs and suddenly my body is trapped in an excruciating 24/7 battle with anxiety. I would describe it, but it still feels like such as alien existence that I can't put it into words. Also, pinning it on paper would give me ownership of the condition, and I will never willingly claim this condition as something intrinsic to me. It's not me. It's so foreign and unlike who I really am.

Happy. I used to be happy. The only thing that brought me down occasionally was the fact that college was taking so long to complete, and every now and then I would break up with a boyfriend. But the boyfriend misery was remedied with a pint of Ben and Jerry's. There was nothing that ice cream, especially mint chocolate chip ice cream, or coffee ice cream with heath bar pieces, or chocolate ice cream with Oreo... couldn't fix.

Until the clock stopped for me at age 33 and a half. Suddenly I am crying over the slightest little thing, seeing darkness everywhere, lethargic and slow, walking into cars of oncoming traffic and not blinking an eye when a car grazes me, wishing I was dead, walking like a zombie, not able to appreciate the fine flavors of food anymore, not able to appreciate the beauty in colors, not interested in sex, lacking drive, ambition... basically... depressed.

Energetic. I used to be the energizer bunny. Go, go, go. Working full time as a teacher, finishing my master's degree, dating 3-4 guys at once, rollerblading in Central Park, going out to dinners and clubs with friends, travelling, shopping, I rarely stopped to just sit and breath.

Then, boom. At age 33 and a half, I suddenly couldn't get out of bed. When I went to walk, or lift my arm, or turn my head, it felt like 200 lbs were pulling me downward. When people spoke, I comprehended it in my mind minutes after they were done speaking, never while they were speaking. My words started coming out garbled, or backwards, or not at all. I wasn't able sometimes to cook dinner, or walk. Sometimes I would go three days without showering because it took much energy to take my clothes on and off. I started getting nausea, hypoglycemia, low blood pressure (dizzy and passing out). Brain fog, loss of memory, bone pain, muscle pain, migraines and tension headaches.

The very cool part about this illness is that on some days, I feel completely normal and healthy for almost 3/4 of the day. This happens once every three months or so. The very uncool part of this illness is that people only see me when I feel good, and they assume that I feel good all the time, since they don't see me when sick.

I know my family members and acquaintances judge me. Why wouldn't they? They see me as acting healthy one day, and then hear me say I'm sick the next. There's nothing out there in popular media or in the medical community detailing the actual reality of this disease. You don't see TV shows talking about it, you don't read about it in the news, popular magazines, or books. When I was young and fresh faced and new to the world, I had no clue what this disease was. Everyone knows about diseases like Parkinson's, Lupus, cancer, MS, asthma, or epilepsy. When you have one of these illnesses, you are still respected. There are no stigmas attached to these illnesses. But there is a stigma attached to Chronic Fatigue. The general public still feels that Chronic Fatigue is a hypochondriac's condition that lazy, depressed people take on themselves to gain pity. And the medical community doesn't do much to change this perception.  Doctors will say to a person with Chronic Fatigue,"I can't find anything wrong with you, so... you're not sick. It's all in your head." In addition, the medical community in general does not go out of it's way to bring public awareness to this disease. There are no popular brochures out there entitled, "What not to say to a person with Chronic Fatigue," or "Myths and Realities of Chronic Fatigue." You'd think that people in chronic fatigue communities would fight back to gain recognition and validity of this illness, but these poor people are so sick, they don't have the energy to get out of bed, let alone fight the mainstream medical community.

So when a person has Chronic Fatigue, they will need to come to expect being doubted. They will need to understand that the average person will not believe they are really sick. Heck! When I was 19, I considered myself to be a compassionate, understanding person. I have always been drawn to the underdog, to the suffering, misunderstood person in the crowd. And yet, even with the depths of compassion I had, I read Colleen wrong. If a compassionate person will misjudge someone with this illness, think about what an average healthy person will think.

This is why I don't tell people I'm sick. With Chronic Fatigue, it's better to keep your mouth closed, because this is still an illness that only depressed, lazy hypochondriacs get.

Wednesday, January 23, 2013

My mom called

Hazy summer evening on the street where I live.

My mom called me today. I was surprised, because she has only called me one time in the last 5 or more years, of her own volition. I've called her about 50 times or more. Just last night, K and I were discussing my getting a new phone number, since he wants to put me on his verizon plan. He has a second number that he never used, and he's going to give me his old iphone. I am not amazed by technology and could quite happily still be using a flip phone. But. Back to my point. I was telling K that it would be no big deal if I got a new number, since few people call me, and the ones I want to talk to, I have to call, as they don't call me. Ie, my mom.

So I was shocked to pick up my phone and hear my mom's voice. It had been years since she called. She sounded hesitant, and I instantly thought she had bad news, like something was wrong with my grandpa. But no, everything was fine, and she was calling to ask if I had gotten her voicemail.

Shocker number two! My mom actually called me twice in one day? She said she had called to say she was going to the store, and she wanted to swing by and see our new kitten, Maggie. I had invited my mom over several times to see Maggie, but she hadn't been able to make it. I was happy to talk with my mom, so we talked for awhile.

Then I checked my voicemail to listen to her message. But I was saddened while I listened. First off, my mom sounded very young, and hesitant. She sounded sad and slow, as if she wanted to talk directly, and not to voice mail. But most of all, she sounded unsure of herself, and her tone was apologetic at interrupting and taking up space on my voicemail, and apologetic at taking up my time during the day. I felt so bad, and instantly knew why my mom never called me. She actually, really, truly felt like she was bothering me, and didn't want to make a nuisance of herself.

I had always thought that she didn't call me because it was one of my dad's rules. He doesn't let her call me for two reasons. One, it racks up their phone bill. And two, he doesn't want her in contact with her daughters because he doesn't want her involved in our lives. She has to listen to him, because she is afraid on him on some level, and is a peace maker and doesn't like to make waves. I always used to feel mad thinking that our own mother isn't allowed to call us. Anger toward my father for enforcing that rule, and anger towards my mother for actually obeying it.

So I always thought she didn't call because she wanted to be the model, obediant wife, afraid of breaking my dad's rules.

But her tone in the voicemail made it sound like she actually believed that she was a bother and a nuisance to me. That breaks my heart, because I do love hearing from my mom. Also, it makes me extremely sad to hear that belief in her voice because it is the belief that my sisters and I have been fed since birth, and have assimilated as our own. I listen to my sister L leave voice messages, and she has the same sweet, sad, apologetic, agreeable tone, as if to say "I'm such an unloveable looser with nothing to contribute to the world and I know you don't want to talk to me or have anything to do with me, and I don't want to bother you, but if you have time later and if you want to, could you call me back." It breaks my heart. We were all abused and made to believe we meant nothing, yet we kept our sweet demeanors because it was the Godly thing to do.

It doesn't really break my heart that I was messed up, but when I hear the sadness and loneliness and heartbreak in my mom's voice... then I really get sad.

I will save her voicemail.


I love people and am fascinated by social interaction. I often wonder why I drag my feet in letting people know the real me. Some days, I want to shock people and write what I am truly thinking on Facebook. Because nobody really writes what they're thinking... they only write polished stuff that makes them look good, right? The few people who do let it all out... well. They somehow seem to get away with it.

I often do formulate status updates for Facebook in my mind. But the process of getting the thought from my mind to the screen is quite a lengthy process. For example, the other day I was taking a bath, and and I used shampoo to create a semblance of bubbles. I move my legs a little, and the froth in the bath tub makes swirls like in the painting "Starry Night" by Vincent Van Gogh. The swirls are perfect, and even if I drag my finger to mess them up, they just get even more beautiful. I'm impressed, so I sit there in the tub lost in thought, constructing a Facebook update then re-writing it in my head ten times over. Because it sounds either too lewd, too personal, too unrelateable to the normal joe, or too odd. I imagine my sister in law reading it and rolling her eyes like she inevitably does most times I dare to speak in her presence. I imagine the judgemental thoughts of my family members in my daring to write publicly about my experience in a bath tub. I realize for the hundredth time that I'm unhappy that my family members are FB 'friends' and wish I had the nerve to unfriend them. Then I realize that without family members, my 'friend' count would go down to about 5 people, and those five might not comment or like anything I post in the future. And I need to have a base of people who will 'like' stuff, otherwise I wouldn't post at all. Not that I do post, really. The process of churning out an acceptably safe post is so strenuous that it takes 3 days to deliberate... and by that time the post is old news and not authentic, so I drop the idea altogether.

Now that I think about it, I am highly tempted to delete all family members because they are extremely judgemental, and have a black and white view of the world that everything is either wrong or right. About 99% of the time, stuff is wrong, sinful, unacceptable. And they gossip about it. I don't want to be gossiped about.

The only people on FB that I feel safe enough to post my thoughts to are the people online that I never met in person. Hmmm.

With my niece
The concept of "friends" intrigues me. I've never had a best friend. I've never really had "friends." I've had coworkers, and social acquaintances. Oh, wait, I've had friends. But they were all male. And they were all boyfriends, or potential boyfriends. My first friend was my first boyfriend. The only problem here is that when I broke up with a boyfriend, I lost a friend. And the world became very lonely. I'm married now, so understandably I have one solid friend, my husband. The ex boyfriends are no longer friends.

Sometimes I ask myself why it's been so difficult for me to make friends. Perhaps I've inherited an introverted personality. But there's more. It's been a case of both nature and nurture for me.

Let me just put it out there. I grew up in a cult. I grew up emotionally abused, bullied and scared by a dark faced religion that still makes my brothers, sisters and mother cower... but they don't know it. Let's say someone asked you to close your eyes. When you open them, you are half an inch away from a large photograph that is blurred because you are so close to it. But step back three feet and look at the photograph, and it's something evil and twisted, and you're like, 'oh whoa.' My siblings and mother have not stepped back, as the religions entangles every facet of their daily lives. It is normal life to them. They see no alternative. They can't realize the horror because they are too close to it.

My father's religion dictated that the world is full of sin, and it wasn't safe for his children or wife to be in the world. So he warned us that if he saw us speaking to, looking at, or trying to befriend the neighborhood children, he would take the rod to us. We were only allowed to speak to other "Christians" and even then we were only allowed to speak to them under the supervision of another adult Christian. My father was angry and cruel, and I was scared of him. I would have panic attacks hearing his footsteps pounding up the steps toward my room. I followed his rules to a T because I was really afraid of his wrath. Being naturally shy, I didn't have too tough of a time with this no-friends rule. Or, so I thought. But it was tough enough. I remember countless times, being waved to or said 'hello' to, and I would have to resist my natural desire to be friendly. I would have to tell myself, "No, it's a sin. If you wave or smile, you are sinning. Put your hand down and frown. Be a good girl, turn your back, ride your bike back home and hide in your room until those kids get tired of riding their bikes in front of your house. When they go, it will be safe to go out and play."

I had to train myself to act like an icicle. Cool and distant, aloof. People probably thought I was snotty. The neighborhood kids called us the "Christian kids," and knew we weren't allowed to talk to them. It was the way it was. I really wanted to be friends with this girl Denise down the road, but knew it was sinful to desire friendship with her, as she belonged to the 'other side.' The other side, meaning, the non-Christian side.

It's messed up, I know. I grew up thinking that friendship was a sin. Even friendship with other Christians. My dad let the ax down on each possible friendship I've ever contemplated starting with each Christian girl that wanted to be friends. In my dad's words, they weren't Godly enough for his liking. No girl ever was Godly enough, and eventually I gave up even trying.

If it was impossible to get my dad's ok on the godliness of any other female friends, can you imagine his beliefs on the opposite sex. My dad would preach fire and brimstone to us about even looking at or returning a hello to any male in the church. I knew he was staring at us girls at church every Sunday. I felt his eyes boring into the back of my head. My older sisters got in trouble a few times because men in the church tried to talk to them. I wanted to avoid that kind of trouble altogether.
With my niece and sister, when I was 33.

Once when I was in high school, a girl named Lizzie started to become friendly with me. Lizzie was a wild child, and under orders from the home front, I was told I wasn't supposed to 'encourage' her friendship. One day our English teacher had my class write a slice of life story, and Lizzie wrote about her shy friend who didn't open up, wasn't there for her, didn't engage in conversation with her, and made her feel lonely. We were attending a small religious school, and I had only five people in my class. I was the only shy one in that class, so the others knew Lizzie was referring to me. The English teacher asked the class what they thought of this 'friend,' and went on to say that the 'friend' was being selfish, and that shy people were actually guilty of the sin of selfishness, since they chose to withhold themselves and lock themselves up on their own volition. In her view, shyness was a negative choice, punishable by God.

I sat there in class with my cheeks burning red, trying to ignore the looks from the others. I attempted to chastise myself for being selfish, but wasn't able to. Who cared about being selfish or not? Did I care if I was considered selfish? Hah ha. Not at all. All I cared about was saving my own ass and not disobeying the Almighty father at home who I was terrified of. From my earliest memories of childhood, he coerced us into believing that when he spoke, it was the voice of God... and who was I to mess with God? Which was preferable, to have your teacher and classmates think you were selfish, or to go against God's orders and risk his wrath? An easy enough answer there.

I didn't move out of my parent's house until I was 24, and had graduated college. It was extremely liberating. I was so ready to experience the world after being cooped up so long. But every time I went to act friendly toward another female, I felt odd. I felt like I was sinning. I felt like I shouldn't talk to them. I felt this heavy pull downwards, holding me back from smiling, or showing interest. I felt awkward and weird, like I was trying to start something that shouldn't be happening. It felt unnatural. To this day, I haven't had a female friend. It still feels weird.

It was a major breakthrough when I got a boyfriend for the first time. I knew guys wanted sex, and my parents never gave us a sex talk. They were too righteous to bring up that dirty word. They did tell us that non Christian men were as off limits as non Christian women, but they didn't say anything about sex. So there was the open door for me. I didn't have sex until my second boyfriend came along, because the church tells you God will be angry with you for this sin. So I wasn't necessarily trying to have sex. The great thing is that after you have sex, you do feel quite friendly toward the person, so finally I found out an easy enough way to make and keep a friend. You have sex, then that person wants to be your friend. Finally, I figured out a way to make friends.

It's odd. I feel like I have nothing to offer another woman when I want to be her friend. The way I got a man to befriend me was letting him think I was interested in him "that way." My friendships have all been centered around one thing: being someone's girlfriend, or a guy thinking I might become his girlfriend. The promise of sex was what powered each of my friendships. So that's why I feel weird when I'm on the verge of making friends with another female. It starts to feel like it's supposed to turn sexual, and that creeps me out and I end up running from the friendship or keeping it so surface level that it doesn't have a chance to develop.

I will figure it out though. Most people I've run into don't share common ground with me, and have treated me like an odd ball that fell from space. However. My husband has an identical twin brother who married a girl who is similar to me, shy and artistic, intuitive, loves poetry and nature. I'm not sure what her background experiences are like, but I feel like I can relate to her. More on this later.

Sunday, January 13, 2013


My name is not Phoenix, by the way. My friends call me AJ. I might name my future child or next pet Phoenix.  But in any case, a phoenix is the epitome of rebirth, and this blog is indeed a tale of my transformation. I am being transformed by love. I am healing from emotional, psychological, spiritual and physical abuse, and I'm also healing from the illnesses of CFIDS/ME, PTSD, POTS/Dysautonomia, and Adrenal Fatigue. After a lifetime of believing toxic ideas about myself and the world, I've come into the light and now know who I really am. It's like life makes sense now. It's like I'm a kid again, discovering the world for the first time. 

Me reading on a lazy, Saturday morning

I've always loved to write, and have kept a journal on and off pretty much since I was a kid. A word of warning, I don't write what is neat, polished and socially acceptable. I don't write what I think people want to hear. I write what is real and raw. If some resonates with you, then we share a moment of humanity together, which is why I'm writing. I would love to have people relate to me in some way, to tell me that despite all the wierdness, quirkiness and abnormalness of my upbringing and current situation, that you too can relate. Being super shy, I've always loved people and have been fascinated by social interaction, but I've never had a best friend, close friends, or.... most recently, friends at all. So hopefully there is something here that resonates with you... my reader, because this is my way of feeling connected to the outer world.

So, to dive right in. My sister Thalia has been teaching me over the last year about the concept of manifesting. Mani-what? I really thought Thalia went over the edge when she first started telling me about this. She and I watched some Abraham Hicks videos together last fall, and Thalia told me that whatever came to me in life was a result of my own creation. That I had thrown out a boomerang and it was just simply coming back to me.  If I said something she construed as negative, she would say, "You are throwing your boomerang!" I had no clue what she was saying, but I assumed it wasn't good to throw my boomerang. Or maybe I wasn't throwing it the right way?  Her sports related metaphor went right over my head, right where any sports related reference would go. We would be cooking dinner, and she would say, "Now Gumpie, thoughts become things. You know that, right?" I will let it slide that Gumpie is indeed one of my nicknames. T would also tell me, "You create your own reality." Last year I thought T was off her rocker, but harmless. I indulged her ideas, but I didn't understand what she was talking about.

Fast forward over a year's time and somehow, just like my sister did, and just like the proverbial Alice did, I too fell into the rabbit hole. I didn't even know I fell into it. And this rabbit hole doesn't even have a name right now. Should it? My perception of the world, people and life has been flipped upside down and shaken so that a shit load of most of my beliefs have fallen out, completely obsolete. And my mind has been left lighter, clearer, happier! I guess it took about about a year and a half to two years for this process to really kick into gear. I don't even know that I asked for this or knew it was happening, but I was tired of bullshit around me. The process has been slightly torturous. But irrisistable and enticing as it was painful. But enough about that. I am here to talk about manifesting.

This blog is going to be about how I take back my power in life. I am a creator, and what happens "to" me and around me isn't by coincidence... my thoughts play a direct role. I can feel change in the air, and I know I'm done being a passive receiver in life. I can manifest change in my life. There's something amazing is in the air, in me, in you, in nature, in life, in the layers of what is underneath what you can't see with your eyes. Whatever "it" is.... and I don't think that it can be named, otherwise it would cease to be... I've just discovered it, and the curtain is pulled back. The veil of illusion is no longer, and my once closed mind is open.

This is where the magic happens, and I'm going to write about it here, disguised underneath the daily, seemingly quiet events of my life. I may think my life is quiet, but it is a hum of activity and synchronistic events, unfolding exactly as it should all at just the right time.