Tag Archives: agoraphobia

when i’m gone. . . . this is where i’d like to be

get up in chicago, pile into the airplane and sit.

and sit some more.  our airplane had a problem, the pilot explained, one that required bringing a technician onboard to disable the lavatories in the “aft” compartment.  i’m not great on my aeronautical terms, but i figured out pretty quick that “aft” meant that the first class passengers still had a bathroom but the rest of didn’t.  and then, forty five minutes later, we took off.

i am in tallahassee where one of my facebook friends, my father justin, lives.  he is experiencing meta-fan-tastic prostate cancer and will undergo the experimental treatment provenge.  provenge is a one time only treatment that costs $90K and man, i sure hope it works.

it’s a good thing that i’m here, because justin’s wife had a business trip so she’s gone.  and tomorrow morning  justin and i show up for the treatment which involves all his blood being sucked out of his body and the white cells taken out to be sent to north carolina where they will be genetically altered and reinserted into his body in tallahassee on friday.

my plans of meeting facebook friends all over the state are a bit compromise.  nonetheless, i was so grateful that facebook friend william taylor, er, bill, came to visit me and my dad.  and took me to my favorite place in tallahassee.

in the old city cemetery in tallahassee, there is the monument to elizabeth budd graham who died in the late nineteenth century. some people believe that she was a witch because the inscribed face of the monument faces west. (please remind my sons joseph and eastman to face my monument to the east so that there’s no misunderstanding, although certain ex-husbands and boyfriends may beg to differ).

because we were meeting for the first time, bill brought a birthday cake that was a symbol of all the birthdays that we had missed as friends.  he transposed the numbers.  oops!

bill got a little confused: a twenty fifth birthday for moi? no, i’m actually fifty two but a gal can remember can’t she? i was grateful–and i was happy for his upcoming birthday in october! maybe when friends meet for the first time, they should celebrate the birthdays they have missed! and for bill and i that’s a lot of birthdays!

 

tomorrow i have to cancel some plans, some rentals, some tickets, but the most important thing is to take care of my father.  but the most placid picnic ground in tallahassee. . .


invite me to your sorority initiation rites because i sorta know the alphabet

when i was twenty five i shopped around for a therapist for all that ails a gal in her quarter life crisis.  anxiety, depression, panic attacks, a touch of the eating disorder.

me at twenty five. fifteen pounds lighter. damn, if i knew now what i didn’t know then, i would have ate more candy, spent my money on pretty dresses and drinks for cute boys, and wouldn’t have bothered with therapy, waxing kits or underwire bras.

so i tried a gestalt therapist.  interviewed a freudian.  did one session with a cognitive psychotherapist.  even got my chakras manifested.  nothing clicked.  nothing seemed particularly helpful.

when i went to a “blended” psychotherapist i remember he asked me a half dozen questions.  one of them was “who is your best friend?”  i said, well, it’s actually two people.  they’re married to each other and i can’t really separate them.  not that i want to. . . and they’re seventy-ish and they’re retired and well they’re like parents to me.  dick and vivian eastman.  he taught me english in college.”

the therapist put down pad and pen and stared at me in that woeful, soulful, doleful sort of way that therapists are wont to.

“don’t you think it’s a sign of a . . . problem . . . that you consider your best friends a couple who separated by so many years from your peers and . . .”

he didn’t get the whole question out before i moved on.  and i never found that perfect therapist.  and, sadly, both dick and vivian passed on a few years ago.  i felt honored that they considered me a friend.

i find it strange that american culture assumes you are friends with people who are roughly your own age.  your own grade.  and i have reached an age at which i am honored particularly by young than me people who consider me their friend.

this weekend i went to visit my facebook friend taylor jordan.  she is not even twenty years old and all the adjectives apply:  beautiful, enthusiastic, energetic, fun!  i am not her best friend but i am included in the circle of people she counts as that word.

i think my facebook friend taylor jordan (on the left) would consider taylor lufkin (on the right) her best friend! they are both in college–he’s going to be a writer, she’s going to teach. this is our wonderful future and i’m so happy for these two!

 

taylor was the eighty-fifth facebook friend i visited last year.  she is the granddaughter of my friend suzanne’s husband.  although i had often interacted with her in the context of seeing my friend suzanne, i had never really spent time with taylor as a friend unto herself.  last year, i went to her school in wisconsin to visit and discovered a way nuanced, intelligent, funny galpal. this year, i went to her school in central illinois.  next week, she is going to join a sorority, but first there’s an initiation rite that i tried to help her with. . . uh, well, maybe i’m not the friend you want at your side when you do that. . .

 


the facebook lunch bunch — and mark’s invited!

i’ve just booked tickets for a florida facebook visit.  i will start with tallahassee and i will tour the florida state meeting facebook friends!  but this past week i went back to bolingbrook, illinois in order to attend a meeting of the facebook lunch bunch.

this is not what we had for dessert but one of the things i’ll be doing in florida is learning to bake a cake. maybe i should send it to mark zuckerberg. he’s certainly having a rough time of it — facebook shares have dropped from their high of $38 to $19. that means he’s only a billionaire as opposed to being a gazillionaire. a cake would definitely cheer him up. but maybe it cheers him up to know he’s doing great things for people. . . like the lunch bunch!

when i started meeting my facebook friends, i wanted to just meet my friends out from behind the computer.  when i am on facebook, i might give the appearance of having a very confident, together life because that’s the image my facebook profile picture gives.  so does everybody else’s.  really though?  i’m in my pajamas, my hair is a rat’s nest, and i feel like a failure.  maybe there’s a little bit of that in all of us.

the first time we met as a quartet of facebook friends, one of our members couldn’t leave the house. so we had lunch there. this time, that member picked a place a few blocks outside of the “safe” zone. it was a chili’s. it was nice to have lunch and have no worries of being judged, having to make an impression, having to act like–well–like we lived up to our facebook profile picture and our record at gemville or farmvill or mafia wars!

next time maybe you should join us!  especially you, mark!  i understand that some business pundits are calling on you to resign.  it’s gotta be rough, and i say, just come to the chili’s and have lunch with us!


anticipation anxiety and the positive guest blog from david janis

in the end, my facebook friend david janis was not able to see me.  i felt a sense of failure, but i also felt like i understood him completely:  i have had anticipation anxiety suck much of the pleasure out of experiences and i’ve often cancelled when i can’t fathom how i could get from point a to point b in an experience.  nonetheless, david–who is an inspiration to many agoraphobics through the magic of the internet–shared this with me:

 

A Positive Side to Agoraphobia

by David Janis

 

We are writers, painters, musicians, crafters, gardeners and teachers. We possess imaginations that extend well beyond that of the “normal” person. We have broad emotional feelings that reach far deeper than your neighbors. We have learned how to live with ourselves, and accept who we are despite our limitations. When we love it is unconditional and when we befriend it will be for life. We speak the truth for there is no point in lying anymore. Our fears run extremely deep but no one is better equipped to handle them. Fear is a daily occurrence for us and if you believe that practice makes perfect, we have become experts in dealing with this demon. Yes, we are prisoners in our homes but that is only a physical limitation. Mentally we are very sharp, witty and extremely intelligent. This becomes so obvious in the words that we write, pictures we paint, songs we write and gardens we grow. We may not run a mile everyday but or minds are strong and powerful.

In the grand scheme of things, is it important that we are afraid of grocery stores or that we eat? Every agoraphobic I know is afraid to shop for food and yet not one of us ever misses a meal. That is called, identifying the problem and fixing it, and I could easily site twenty examples of this ingenuity if called upon to do so.

We have experienced some of the worst situations that life can throw at one person. Public and private ridicule, expulsion from family, accusations of lying and laziness, taking a free ride and probably the worst, our loved ones and friends have forsaken us. Who else do you know would still be standing as we are, not many, I assure you! All one needs to do is read the daily posts on our forum to see the strength of the people this plague has swallowed. We are articulate, insightful, compassionate, and opinionated. We are firm in our resolve to either beat this affliction or live with it peacefully. We are strong!

So I say to you today, embrace the life you have been given and steer around the bumps and potholes. If you cannot leave your house today, write something, build something or grow something. It is not a curse to be housebound, it is a hurdle, a hurdle that you may choose to jump over, or not. Either way, you are just as important to this earth as the president, the pope and Oprah.

 

What validates you? Is it your bank account or your car? Could it be the house you live in or the company you keep? Maybe it’s because you’re pretty or handsome! What makes you a contributing member of the human race? I can’t answer this one, only you know if your existence is with reason. I can tell you this much, we all have a purpose and we are all incredible people. So go and write a poem, paint an abstract, compose a ballad, start a scrapbook, plant a garden and share your knowledge with whoever will listen, just remember, agoraphobia is only a small part of who you are. All of us that know you, know this to be true, the question is, do you?


just like laguardia on a friday afternoon before a holiday–but without planes!

new york is like a love affair:  getting out is so much harder than getting in–and leaving new york at three o’clock on a friday afternoon, with an e-ticket for a flight at laguardia, you should be prepared for an experience that will not compare favorably with the ex-boyfriend who slashed your tires and dumped a box of your thong panties, that sex toy, and the edible body lotion from victoria’s secret on your mother’s with the words, “i think these are for her.”

but i got out of new york after my visit with facebook friends azusa watanabe from tokyo and carolyn quinn and michele persiak from new york even with a cab driver who got lost, a terminal change, long lines, surly t.s.a. agents who claim they want to touch my junk because i’m “random”, gate changes, delays, cancellations, etc.

i had paid an extra thirty dollars for a “premium” seat 7a. unfortunately, united sold that same seat to someone else. the airline implemented its new “customer empowerment” policy and i lost. i was seated in a middle seat between two oversized bins (i mean men). note to united: can i have my thirty dollars back?

several times over the last year, facebook friend david janis and i have tried to set up meeting with each other.  while i was in new york, we talked on the phone and i resolved that i would really do it!  i made reservations at a hotel and plotted the course.  a few days before my arrival, david messaged me that he was having anticipatory anxiety attacks which was particularly difficult because of some other health problems he battles.  i decided that since the hotel was prepaid, i would go anyway.

david is an agoraphobic who embraces himself and his way of life.  he doesn’t shy from it.  and he helps others who may want to change and others who may not want to–as well as those who think they have no options.   he has a lot of interesting wisdom.  i wanted to hear it!  i told him how long i would be in st. louis and if the anticipatory anxiety fell away i would be happy to see him.

yesterday, i went to the jefferson memorial park and i would have ordiniarily confined myself to going to the westward expansion museum.  but then i thought why do i place a limit on myself or on what i believe is possible for me?

brave before you have your ticket to the arch tram is one thing.  brave after you have put your money down . . . well, in my case, courage evaporated.  and i think part of the mood change, the anticipatory anxiety if you will, is the same as in airports.  the park rangers are now equiped with a conveyor belt, metal detectors, harsh voices.  i saw one poor woman moved to tears because she had to go through the metal detector three times.  finally, she lifted her shirt, as if to say “look, i don’t have anything!”  and this is what we do just to visit a national park.

i needed an attitude change but i couldn’t get enough privacy to create it.  after a long line that slithered down into the basement of the museum, we were loaded as a group into a room about the size of a motel six bath not included.  we should have been appreciating the exhibit items devoted to the arch’s architect eero saarinen.  instead, we were crowded together so tightly contemplative thought was not possible.  we were half an hour late.  we were then herded further into the sub-basement of the museum into another area where we were shown a three and  a half minute safety and history video.

i admit it, i freaked in the eero saarinen tram car.  seats five but only if the five are freakishly small or they are quite friendly in a kentucky cousin sort of way.  getting off the tram and entering into the arch’s viewing area, i totally lost it.  i stood in the center of the eight feet by twenty feet room, with its low slung windows overlooking the city.  i waited for my legs to stop shaking.

the arch shifts a little, there are noises from the bumping tram cars, children running up and down the narrow space made me want to scream “stop it!  you’re going to make the damn arch collapse!”

i waited.  the park officials–can you really call teenagers officials?–looked bored.  a group of teens turned their backs to the windows and took pictures of each other with their cell phones and then texted.  lots of texting.  i decided that yes i was scared.  but hardly anybody was aware of it.  except for that poor couple who had driven up with me on the tram.  they were from indianapolis and i think they were glad to get out of the tram and even more relieved that i was going back down without waiting for them.

we take our victories whenever and however we can find them!  and now i hope that i meet david, but if not, i still have other facebook friends to visit in the gateway to the west!

of course, my facebook friend william clark goes with me for every adventure! he is right there in front of the blue trunk! the real william clark explored the western half of the united states from 1803 to 1806 in what is commonly called the lewis and clark expedition. you can read all about it in William Clark and the Shaping of the West by Landon Y. Jones!


you win an argument on facebook, you’ve already lost. . .

i don’t remember exactly how it happened or what was said, but i remember i violated the most important rule for parents on facebook:  if you are so lucky as to be confirmed as your child’s friend you may not comment–nay, you cannot even look–at your child’s posts.

i did. i looked and i even commented.  something parental, along the lines of “i think you shouldn’t”

this is not either of my sons. my heart goes out to the mother of this poor man. every mom should know that she shouldn’t look, it will only break her heart, at her progeny’s facebook photos.

my sons erupted in a baffling and quick comment and reply i was awash in tears.  until eastman called me and said everything was just for show.  “if you win an argument on facebook, you’ve already lost,”  he said.

i was reminded of his wisdom, forged upon his twenty years on this planet, last night as i logged on.  there are many support groups on facebook, one for every supportable human condition.  i am a member of several associated with agoraphobia.  i joined all of these early this year, after i started my facebook new year’s resolution to meet all my facebook friends.  last year, i resolved to meet all 325 of my facebook friends, no matter where in the world they might be.  by the end of the year i had met 290–and had discovered that about ten percent were spambots, in prison, were hopscotching the world in such a way that we could not meet, or had some reason they didn’t want to meet me.  including being dead.

i still consider myself agoraphobic.  meaning i am terrified to leave the house.  the problem is that my house now includes the world.

my home is also five bags in the back of my car: one for computer equipment, one for shoes, for clothes, for cosmetics and soaps, and for just every day. and of course there is william clark my facebook friend who is both a stuffed toy and also a nineteenth century adventurer.

every morning i wake up and the first thing i say to myself is “this is the day that the Lord has made.  i will be happy and grateful” and then i quickly think of ten things that i am grateful for.  before i think of things that make me stay in bed and say fuggeddaboudit!

does that make me religious?  i don’t think of myself as particularly so.  but without this ritual i would probably fall into a former habit of refusing to get out of bed at all.

coffee also helps. if i try to make any decisions in the morning without having three cups, i am doomed.

last night, i observed on facebook two groups devoted to the support of people with agoraphobia.  the two groups devolved into–well, i won’t put to fine a point on it–a bitchfest of accusations of members and admins (administrators) being non-agas — not particularly agoraphobic. one woman was outed as a non-aga because she had recently been able to get out of the house.  even holding down a job.  she was still the administrator of a support group on facebook devoted to agoraphobics but she was badmouthed by a few members of another group.  defriending.  blocking.  barring from the group.  closing the formerly open group.  posting, more posting and still more posting.  and cut and pasting slanderous posts and reposts.  and j’accuse.  lots of j’accuse.

the adminstrator (and facebook friend of mine) of one group deactivated her account, taking down (inadvertently or not) many photos beloved by the group as a whole.  she reactivated her account and the photos were reposted a few hours later.  i think someone won the argument.  but i think whoever won has lost.
i’m not sure i’m entitled to be in any of the support groups for agoraphobics and other housebound people on facebook.  i was someone who was housebound.  i could be someone who is housebound tomorrow.  every day i wake up with the decision  and every day i am unsure whether i can do it.  mostly i do.  some days i can’t.  but every day i start with this

i think of myself as a secular person. . . what is it with this? how do you start your day? how do you get your ass out of bed? because if i don’t start with this and a list of a lot of gratitudes i’m damn grumpy and then i falter.

 

i am with the majority of the group members of the support groups i am part of:  we need to be supportive of whatever  we are, wherever we are in life.  we struggle, we figure it out, we forgive ourselves, we forgive other people.

 

and if we have time we post this on every friend’s page every day. although after a few weeks it would be annoying, so we’d switch to posting pictures of cute kitties or inspirational sayings. oh, whoops, most of us already do this!

 

 


in order to succeed. . .

in order to succeed, a million things must go right.  in order to fail, only one thing has to go wrong.  i admit that on the morning of august ninth i was thinking there’s going to be that one thing today.  four friends coming together for lunch at laconda verde in new york city.  one coming in from japan.  one from brooklyn.  one from staten island.  and me?  i get lost everywhere.

i just didn’t think it could happen.

facebook friend #316 carolyn quinn woke up on that morning and had a completely different mindset!

on may 9th of this year, i met michele piersiak of staten island.  she is the 317th facebook friend i have met with since i made the new years resolution to meet all my facebook friends.  so often, we have friendships and partnerships that exist online, on the phone, on facebook or twitter or instagram–and it’s important to supplement those interactions with real time.

michele followed the progress of my resolution because she shares a characteristic with me–we are both agoraphobic.  we both have awful panic attacks and tend to look for our “safe” zone–and that zone can expand and contract.  in my case, it has expanded considerably because of my facebook project.  in michele’s case, she had been nearly housebound for more than a year because leaving the house affords too many opportunities for panic.   but she’s just too young and pretty and bright and with so much to offer . . .  it’s a darn shame to take that away from the world.

i’m a believer in tackling small goals and in doing so creating courage for tackling bigger ones.  for michele, a big goal is to become a doctor to help others with this condition.  a smaller goal was to have lunch at laconda verde.  i said if she could make it to the restaurant in manhattan,  i would fly out and take her there.  she’s been working on getting out of the house and this morning she would get on the staten island ferry.  we picked her up at the station.  she was accompanied by her boyfriend anthony.

michele did something that is really important.  she planned what she was going to bring.  as someone who now lives out of her little orange bag, i totally understand.

we got off the ferry and took a cab to the restaurant.  we were met by facebook friend #326 azusa watanabe who had flown in from japan a few days before.

the second most wonderful thing about lunch was dessert! the most wonderful thing was being with friends! after lunch azusa, carolyn and i went to have our auras photographed. michele and anthony went home to staten island. i think michele can do anything she sets her mind to!