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I’ve laid among luscious organic avocados in the Wayne Ave Kroger produce department. I’ve become one with a Jenga-esque display of Busches Baked Beans at Dots market. I’ve tilted my head back for a drink at the bar, and my body followed.  I’ve counted ceiling tiles, read obscure and poetic graffiti written on the undersides of tables, and felt the blow of an ice block on the back of my puffer coat cushioned head. I can tell you exactly what any given floor will feel like when it connects suddenly and violently with any given body part. I can tell you what emergency room has the warmest blankets and the most attentive staff. I pass out, like, a lot. This is my invisible illness.

I have a condition known as POTS (postural orthostatic tachycardia syndrome) with orthostatic hypotension and nuero cardiogenic syncope. It’s a mouthful, I know, and I’ll spare you the medical terminology and just say that basically, I can pass out at any given moment, with or without warning. There are many other pesky issues that come along with POTS (including, but not limited to, dizziness, digestive issues, migraine headaches, muscle and joint pain and my least favorite of all, extreme fatigue and the dreaded “brain fog”) but the losing consciousness bit is kind of the kicker.

I’ve opened my eyes to find friends, lovers, strangers, animals and various insects looking upon me with curiosity, fear, pity. It would be easy to see me strewn across the floor, with or without accompanying produce or canned goods, and say, “that poor girl, what an awful disability to live with!”.  That’s the thing with having an invisible illness, I look completely normal! I’m not in a wheelchair, I don’t walk with a cane, I have no outward deformity. Unless you are someone who is very close to me, lives with me, treats me, or just happens to be at the right (wrong) place at the right (wrong) time you probably have no idea that there is anything wrong with me.

If you see me out it is because I am having a good low symptom day. There are days that I feel I can take on the world! I can read, walk, workout, get drunk, have sex, party hard, party medium, take photos, write poetry, pay bills, do taxes, get on stage, live life to the fullest! There are days when I may attempt these things, and play off the unwanted results.  It’s easy to play off dizziness at the bar or a party, you can just play drunk! Passing out at the gym can be explained by “going hard bro”. Brain fog causing an inability to form complete sentences, I’m just a ditsy girl, duh!  How convenient! So far doesn’t sound so bad, eh? How about the bad days. The days my eyes won’t focus and my ears won’t stop ringing. When I can’t get out of bed without passing out. The days I can’t walk a straight line. The days I can’t leave my house, make my husband dinner, help my child with her homework or do anything productive.  How about a week straight of days like this. You wouldn’t know, I would never let you see. It’s invisible.

Having an invisible illness just plain sucks, and here’s why. No one understands. You look like a completely normal, functioning human being.  No one understands your limitations. Why did you cancel plans at the last minute? Why can’t you come to my party? Why don’t you work? Why do I have to pay taxes while you sit on your ass and drink soda, eat bon bons and watch tv? People with invisible illnesses get a bad rap. We are often put in the lazy or crazy category. If you have depression you are just crazy.  Bipolar Disorder, Schizophrenia, you are REALLY cuckoo! Oh, you have fibromyalgia, you know that’s made up right? You just want attention. Rheumatoid Arthritis, that’s just for old people, right? Sticklers, what the hell is that? Epilepsy, are you sure you have that, I’ve never seen you have a seizure? Celiac, Crohn’s, good God man, how many times can you shit in a day? POTS, it’s like a parlor trick, watch my girl Cheryl pass out for attention.  Yeah…we are all just lazy crazy attention whores who just don’t want to work or follow society’s rules.

There is never a shortage of high and mighty douche bags who are willing to pass judgment and declare you a lazy fat faker, or maybe that’s just my experience. People like that can make people like me reclusive, shamed, and even more hesitant to participate in society. It’s bad enough that folks with invisible illnesses have to suffer a myriad of physical and mental ailments, but we also suffer a society that largely misinterprets our disabilities as a hand out. Yeah…give me that social security disability check, I don’t need to feel like a productive member of society. I don’t mind people thinking I’m a lazy POS.  I like feeling helpless and useless.  I don’t mind that I have had to give up my dreams.  That as a photographer I can’t hold a camera without shaking.  That as a writer I forget how to use simple words like “the” and “and” and? That as a performer I have to deal with the anxiety of passing out on stage, not to mention, deal with actually passing out on stage. I love that people don’t respect me. It’s fun to spend all my money on the doctors who took almost 15 years to diagnose me. Yes, that check totally makes up for missing out on so much of what makes up human self worth.

Here are some fun facts about invisible illnesses that support the idea that it would be “fun” and “a privilege” to get to have one of these exciting and interesting chronic ailments that cause you to be unemployed, either by choice or by law.

Invisible Disabilities are defined as symptoms such as debilitating pain, fatigue, dizziness, weakness, cognitive dysfunctions, learning differences and mental disorders as well as hearing and vision impairments.  These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person, day to day. – Invisible Disabilities Association – IDA

Seven out of every ten deaths in the U.S. are caused by chronic conditions. (CDC, National Center for Chronic Disease Prevention and Health Promotion)

Approximately 96% of people who live with an illness have an illness that is invisible. These people do not use a cane or any assistive device and may look perfectly healthy. (2002 US Census Bureau)

The divorce rate of the chronically ill is over 75% (National Health Interview Survey)

Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides and 50% of these suicidal patients were under the age of 35. (Mackenzie TB, Popkin MK :”Suicide in the medical patient”)

Depression is 15%-20% higher for the chronically ill than for the average person. (Rifkin A. “Depression in Physically Ill Patients”)

“Because pain often shows no physical signs, people including health professionals will often not believe sufferers are in pain which is one of the reasons they are at such a high risk of depression, anxiety, social isolation and relationship breakdown.”- Coralie Wales, President of Chronic Pain Australia

Sounds like a reasonable trade off for a “free” paycheck, right? Some sufferers are so rejected by society and the medical community that they end up homeless. Mental disability patients go without treatment and become the so called “crazy people” on the streets. Some chronic pain sufferers push down the agony with pills that lead to addiction. The anxiety sufferer may only find refuge in a bottle of whiskey, the man with depression might not make it through a day without a nickel bag of funk.  Society is unkind to those who don’t/can’t pull their weight.  People generally can’t be bothered with the reason I can’t work, the reason Charlie pushes his shopping cart.  The reason little Bobby can’t sit still in class.  The reason Phil started hitting the rocks.  Without a good support system, and the ability to shrug off the assholes who want to paint you as lazy or crazy, invisible illness can wreck you, beat you down, and even end your life.

When I was first diagnosed with POTS, about 11 years ago, it was considered a pretty rare disorder. Not many doctors were familiar with it, and certainly not with the degree of my symptoms (at one point I was passing out around five times a week!). I felt crazy! I had huge issues with anxiety, I was afraid to go anywhere because I didn’t want to pass out in front of people. I felt alone, no one understood. I think many invisible illness sufferers feel the same way.  They want so badly to talk to someone and have them get it!  I was finally referred to this saint of a doctor, Dr. Grubb, at the University of Toledo clinic for autonomic disorders. He understood everything! My first visit he just let me talk, and ask questions for four hours! I met people in his clinic with the same issues, but different triggers. There was a man there who would pass out the second any cold liquid hit his throat! There was a 16 year old girl who had to quit high school, because she was considered a liability.  She passed out several times a day! Her little brother told me that he always knows when she wakes up in the morning when he hears the loud crash of her body hitting the floor.  She was in a full body cast the next time I saw her.

Suddenly, I didn’t feel so alone. There were other people like me. If you have an invisible illness, there are other people like you. People you can connect with, and trust me, talking to them, or reading about them will make you feel less alone. Get online, Google depression, fibromyalgia, IBS, POTS, RA, whatever you have, and look up support.  If you happen to know someone with an invisible disability and find yourself jealous that they don’t work, or find yourself having a hard time understanding their issues, talk to them!  If you care about them, ask questions, try to empathize.  If you really care about them, do some research of your own. Or you can just be an insufferable dick and try to convince yourself and everyone else that they are just lazy or crazy, whatever, we’ve dealt with worse. My point is, there are resources out there to help you deal with your struggles.

 

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I am secretly using my dryer against Future Husband’s direct orders.  I am an asshole, really.  I am rolling the dice in the proverbial casino of home household appliances.  I understand that the odds are on the house’s side.  I understand what is at stake here, that my arch nemesis, the dryer, could blow up, catch fire, burn the house down at any possible second.  Maybe I’m being a bit dramatic, maybe it would just stop working, I’ll admit I’m not the Maytag man.  Future Husband has told me repeatedly not to use said heinous home appliance, which I will name Ted (I have an issue with naming my household appliances, I have a vacuum cleaner named Sheila and a waffle maker named Octavio), but here I am, listening to Ted shake rattle and roll my mismatched socks,  my one good bra, my Wal-Mart panties and my favorite skinny jeans that had been worn so many times they could probably have gotten up and fixed the dryer themselves.

Future Husband does not deserve my insolence and stupidity, after all, he is the first man I have ever been with who has the necessary skills and  equipment (in my opinion these would include balls and the ability to assert them) to at least attempt common household repairs.  You see, before Future Husband I tended toward the artistic (see:  jobless), laid back (see:  lazy), free spirited (see:  lives in his parents basement), dreamers (see:  cheats, trainjumps, moves to LA to pursue music/acting career, or ends up in prison).  Not that Future Husband is totally out of my comfort zone…he is a musician…but he is also gainfully employed, responsible, kind, caring, reasonable and above all, fully capable of dealing with me.  Now that I think of it, it is quite possible that I am not such an asshole for playing the odds on the dryer.  Try to follow my logic…because heres where I convince myself I can do whatever I want.

After dating aforementioned artistic nutcases, I swore to never date another musician, and here he was…cute, sweet, Future Husband.  A musician and a chef…a young artistic, laid back, free spirited dreamer…everything I thought I didn’t need.    I never intended to fall in love and I almost didn’t let myself, but I bet on black and one glorious year later he rewarded me with a beautiful ring and a promise to love me forever.   Rarely does anything worth having come without taking a risk, whether it be waging clean underwear against blowing up your dryer, or betting on your heart when you brain tells you the odds aren’t in your favor.  What I’m getting at here is…since gambling on love worked so well for me, and Future Husband…how can it be so bad to gamble on my household appliances!  Just maybe I can win love and clean underwear too!

something new

something new
undulating hips under cotton fresh blankets
smells of spring and
sweat of bodies thrown
into kind randomness
like happy accidents.
torture of wait over then torture over again
until waves of electricty
run through mattress coils
through foam through sheets
through goose pimpled skin
and bodies coil together in bliss.
watched by phantasms of disembodied illusions
of reality in the top corners
of the room
the only witness to the most unexpected
spectre of bodies crashing
separate bodies
separate lives
familiar
not close
but closing
in on
something
new

morning after something new

i gave myself a home haircut two nights ago. no matter how artistically inclined you believe yourself to be, no matter how steady you think you are holding those scissors, the home haircut is never, ever the solution to a bad hair day. there are worse things than badly cut DIY bangs….such as events that cause you to do such irrational chop jobs. take for instance a bad day. or quite possibly, a bad day resulting from a bad week resulting from a bad month, year, etc etc…you get the point.

9.
nine days ago my vacuum cleaner blew up. on me. while vacuuming in my underpants. while vacuuming in my underpants slightly sticky from a fresh layer of self tanning cream (it was a bad multi-tasking decision, i realize this). nine days ago my God forsaken vacuum cleaner blew up on me, coating my icky sticky half naked self with dust, carpet fresh, and Lord knows what else that lives in the deep recesses of hoses, brushes, belts and bags. this was the start, but certainly not the catalyst to the bad bang situation. it gets worse. not only did i appear to be tarred and feathered, my house looked like al pacino’s desk at the end of scarface. i had carpet freshed the entire house….upstairs and down….and had no way to vacuum it up, leaving my floors to look like a coke whores mirror.

believing the malfunction to be caused by a bad belt, i cleaned myself up got dressed in my best crazy lady in rollers and robe get up, and go out to warm up my car for a trip to the dreaded gem city hardware store. fuck. my car wont start. your kidding me, right? after carefully reading the instructions on my never used box of jumper cables, i contact the neighbor lady and get my car jumped. i roll to the store in my, for reasons yet unknown wobbly vw beetle (more on this to come) get the belt, come home and get to work on fixing the offensive bitch of a vacuum cleaner (who i have now named Shawna, after the first girl to punch the living daylights out of me at the new carlilse pool when i was the tender age of 13). after reassembling Shawna, and having that bitch just blow the carpet fresh coke all over my house i quickly realize that the purchase of a new vacuum cleaner is imminent. i will name the new one Betty, and be sure not to force her to suck up items like socks, pennies and bobby pins…hopefully this will lend her a better personality than that dirty carpet fresh coke whore, Shawna.

8.
i woke up eight days ago and decided that i needed some Aimee time. Aimee has been my best friend, for better and for worse, for the last 13 years. for all intents and purposes, our relationship is the closest thing i have to a marriage. she is married to Leon, and he is like my big brother, which takes our little family from nuclear to just plain outer limits. Aimee and Leon have two kids, 13 year old Kenya (who was born 6 months before my 13 year old daughter Mia) and 2 year old Nola (who i have affectionately dubbed, the UFC baby…im sure i will explain at some point). These people are my extended family, and though we may all get on each others nerves, we love each other. i digress, where was i, oh yeah…so i needed some Aimee time.

we decided it was spray tan time, considering my attempt at achieving perfect at home bronze was so rudely thwarted by Shawna. the thrusday $10 mystic tan special at the hot spot was calling us. off in my, for reasons still unknown, wobbly beetle we go. mystic tan time is not just about achieving the perfect week long bronze…its about friendship. its an event. its a distraction from kids, men, slutty vacuum cleaners and life as a 30 something year old stay at home mom. the drive is the best part. its the act of picking up Aimee, chatting all the way to the hot spot, getting that perfect 2 minutes completely alone in a booth, getting naked and sprayed with bronze bliss. its the drive back to her place. its something that we do together, never inviting anyone else. catching up on the days events, and reminiscing about the past 13 years of friendship. this is something we need. female bonding, i felt better already. later that day my tire blew. shit.

7.
i have been seeing this guy, we will call him Justin. he is the first guy i have dated that has his own everything. his own car, job, house etc… he is weird, funny, intelligent and interesting, just like i like my men. he is also responsible. he is in the airforce. nice car, nice house, nice body, nice…other stuff, nice guy. so far. we are both slightly off kilter in the way that makes us still, for the most part, functional humans. we get along well and seem to make each other happy. seven days ago he comes over to change my tire. oh joy! i have a full sized spare in the trunk of my car, hooray! locking bolts, damn. they are little locks on your wheels to ensure no one can take your wheel off without a special key. a key i apparently do not possess. foiled again. we decide on a nice drive in his car instead. off to staples where he brings me into the 21st century by buying me a flat screen computer monitor, wireless keyboard and mouse. then off to buy me $100 worth of clothes at Marshalls. wow…this has certainly never happened before! a girl could get used to this! he upgrades my computer while i get my car towed to the dealer for a rather expensive tire change. we enjoy a yummy dinner, and watch a movie about as foreboding as they come. 500 days of summer…depressing flick. lesson of the day…you have to take the good with the bad.

6.
six days ago i wake up with a bad feeling. need diet coke to function, must go to store. car wont start. other tire is flat. call justin, doesn’t answer. this day will not be good. call Natalie (more on her later) who comes to jump my car. go get air in the tire. nothing good or interesting happens on day six. maybe it will get better.

5.
five days ago my camera bites the big one. i am a freelance photographer. i photograph weddings, events, musicians, models and pretty much anything else that can make me a buck. for the most part, i enjoy what i do. tomorrow i have a job. today my camera stops working. crap. a new camera will set me back a pretty penny. my tax return is the designated source for the new camera, but it wont be here for another 10 days. my wonderful amazing fantastic mother offers to buy the camera, and let me pay her back. i feel like such a loser, im 35 years old and borrowing money from my mother for goodness sake! after the camera, the vacuum cleaner, the care tire, the other car tire, and the car battery, my high from the Justin financed shopping spree is fading. not to mention i still haven’t heard from him. i feel the depression settling in as the carpet fresh slowly settles into my still unvacuumed carpet fibers.

4.
i love my job! four days ago i take my new camera and shoot a surprise 60th birthday party at the church across the street from my house. the 60 year old birthday girl was spunky and fun and full of life. her entire family came for the event, about 100 people. i thought to myself, what a wonderful life this woman has led. to have all of this support and love and family. to be so gracious and happy and funny and cute at 60! i tell her this and she tells me she loves her life. she tells me that she knows her husband is looking down upon this party from heaven and laughing. it puts things in perspective. if this woman can be happy at 60, why cant i be happy at 35? am i wasting the younger years of my life hoping and wishing for something better? am i the catalyst for bad hair days?

i divorced my daughter’s father almost 9 years ago. in 9 years of dating i haven’t been able to make any relationship work for more than 2 years…and thats pushing it. my friends, family, and past boyfriends know that i am a challenge at times. i am at once distant, and the next minute attention craving. i can shrug off big problems one minute and freak out over little stuff the next. i can say how happy i am in one breath and then start crying. i want what i want…which is rarely what i need. what i need i cant find, or am too lazy to look for. i care deeply for those i love, but have a hard time showing it sometimes. i, like most people, am deeply flawed. i wonder, did this spunky 60 year old woman go through her fair share of this? im sure that she did. so, how do people make it through? how do they come out the other side of all the DIY hair cuts happy and grateful for the life that was given to them? does the old adage, “what doesn’t kill you makes you stronger” hold water? for my sake i sure hope so!

3.
Three days ago Justin comes over to put the new version of Photoshop on my computer. he brings my daughter an i-tunes gift card. he spends the day with us, has dinner with us. he and i stay up late and watch a movie together. we have a nice time. at least thats how i see it. we have one of those serious talks, he tells me he has never felt this way about a girl before. that he is inexperienced with love and doesn’t know how to deal with these feelings. he says he doesn’t know where he will be in five years, or even tomorrow. that his job could take him overseas at anytime. he says he doesn’t want to hurt me. says that he is scared of love and all the complications that it brings and that he has avoided it at all costs all his life. he tells me i am putting a monkey wrench in his system and doesn’t know how to deal with this. you know where this is going, right? three days ago Justin says goodbye to me for the last time. this is the latest chapter in my dating life, which seems to be an exercise in futility.

2.
i wake up crying. i miss….someone. not sure if its justin or edward or brandon or whoever…i just am missing something…and feeling sorry for myself. i decide to put on my big girl panties, dry my eyes, brave the snow storm, and do what any self respecting recently dumped girl should do….get drunk. ok, so maybe its not what i should do…but its what i want to do. my friend Natalie and i have no kids this weekend. we get all dolled up, and have her boyfriend drop us off at the downtown watering hole. we decide we will both get too tipsy to drive, and just take a cab home. one jager bomb, one beer…chatting at the bar. another beer…commence dancing. another jager…commence chatting up cute guys at bar. one free random drink from guy at bar…commence more dancing to escape grabby guy at bar. next beer…commence singing of morrissey song. bar closes…walk to after hours club. commence more dancing and meeting of super cool undercover cop chick. undercover cop chick knows of another club that is open til 7am…more dancing. come home, pass out happily. two days ago i pretended to be 21 years old again!

1.
yesterday i awoke to a freight train driving through my ocular nerve. also, a band of gypsies are performing strange dancing rituals in my tummy. i feel like shit. someone or something seems to have spent all my money on drinks. it is this moment that i realize i am not 21 years old. the day will be spent watching extremely bad reality tv on the couch while everyone else on earth watches the super bowl. i will eat a bowl of sate pho from little siagon and never leave the couch. i am even more sad about my love life than i was before my drunken debacle last night. ugh…milk was a bad choice. so was the jager.

0.
today i feel 85% recovered from my hangover. i decide to write about the last 9 days of my life. after writing this, i will apologize to all who took the time to read it, as it turned out quite a bit longer than originally intended. i hope to write a new entry every few days, in an attempt to make sense of it all. maybe someone will see a bit of themselves in all of my nonsense. maybe i will provoke a chuckle or two. maybe this will help me make better decisions, and figure out why i do what i do. maybe i will forget about all this and never write another word…who knows. feel free to comment, judge, ridicule or high five me. i hope this helps.