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I've Changed My Mind...

| 7 Comments

I have been out-of-commission for some time...hiv (I don't capitalize it!) can be an insidious bastard, zapping your strength and hope, working your psyche as much as your body.  I found myself thinking I could get back into the "swing" of things, but after 54 years, I began to reflect on that half-empty glass, and fell into an abyss that I almost wasn't able to climb out.  After struggling to keep up with work and my fragile ego, my T-cells started taking a dive and viral load woke up.  All because I was not doing what was expected of me.  I was not being compliant with my meds.  YES, as a social worker, a clinician, I am assisting, cajoling and monitoring others about taking their medications...that does not mean that I am not human... and sometimes troubled.  I ended up sitting in my doctor's office, on more occasions that I want to admit, with him trying to boost my spirits and give me the facts.  Finally, the facts caught up to me...

In the middle of a phone conversation with Thomas, my call waiting came on.  I looked at the screen and saw it was Dr. Laris, my internist.  The week before, I had given about eight tubes of blood for various tests, from typical blood work, to viral load counts, and drug resistance screening.  I was told I would see the doctor when all the tests came in, and given a day in the week to call the office.  This call came before the assigned day, and when that happens, something urgent came up in the readings.  When I saw the name, my body went into auto-drive; my heart began to beat like a Gene Krupa drum solo and the "panic valve" opened up right to that "worry reservoir" in my brain.  Being a veteran of this doctor's office, I knew the drill. I was asked when I could come in; it was Wednesday, and I just started a new job and had psychotherapy clients after work the following day.  Friday after work was my only option, I sure as hell was not going to let this go until Monday.

"Remember that special test you took last week? Well, we have to talk about your results.  See you Friday."

"OK."  I uttered.

I switched back to my friend, Tommy, who usually hangs up after a count of ten. 

"What happened?  Are you OK?"

"Yeah, I replied.  It was Dr. Laris." 

 "So you have to go in, you may have to change your meds..."

I know my buddy was trying to help me get out of my head, but the flood already hit, and the tolerance levee broke.  All I heard after that was:

 "Blah-blah-blah, blah-blah-blah...meds."

Sooner than later, I hung up from Tommy and moved around the house, getting ready for my fourth day of work and the plumbers who will be inspecting the wall under my sink that was ravaged by a water leak...when it rains... 

Friday came faster than I anticipated (or maybe I blacked it out like an alcoholic.)  I found myself walking out of the "F" train at 23rd Street, with "Happy" playing in my ears; trying to keep my stomach from walking out of my mouth.  I made it to the doctor's office, checked in and waited my turn.  I always come into the office like Ethel Merman in "Gypsy," but this time, I looked like Don Knotts on downers.  It wasn't long until I heard Dr. Laris call my name.  

"Dead woman walking..."  Went through my head.

The doctor and I have a great relationship; he was the associate of the doctor I entrusted my life to 17 years ago.  I knew this was not going to be easy, but I also knew it was not going to be good.  He proceeded to let me have it:

"You have to take your medications, Lora...I understand you have been going through something, but I refuse to see another person buried when they didn't have to be..."

He pulled out the paperwork:

"The drug resistance test was not great Lora, you are resistant to a lot of the new meds, and I refuse to give you these unless you are on your death bed."

Death -  that was the first time I heard the word in that context...pertaining to me.

"You have to take your meds, when you are happy, sad, f--ed up, crazy, I don't care." 

I thought about last year, when I wanted to just leave this planet; no one to love, my mother and I still estranged, no children, no full time job, hustling and still struggling, and feeling (and am) fat...I polished my pity pot with vigor.  I was in a dark, dark place and I wanted the "Big Sleep"...but not anymore. 

I left the doctor's desk in tears; all the worries and panic rushing out of my tear ducts.  I stood in front of the waiting room window tapping out my ducts and my strength.  The doctor's husband, who is the office manager, came up to me and gave me a hug and some grounding.  I am not alone in this struggle with this dis-ease.  Gay, straight, male, female, black, white, and all the colors in between...to "hivers" it was always a matter of living or dying. Now some of us have choices.  Millions didn't have a choice.  All of the sudden that pity pot disappeared and was replaced by a throne, gold and bejeweled, with a plaque across the top saying: MY LIFE.  I slowly tried to kill myself by neglecting my medication regiment, wallowing in a feeling of hopelessness, but now... No one to love, Hell, I will love myself no matter what.  No children, What? I have impacted many children, heck, people through my life. I am doing what I love, assisting people live to their potential. Not to mention I can lose weight...

This game of life is the same...but now I've changed my mind; I want to live. 

I want to live.

So Long, Dr. B

| 7 Comments
With Simon and Garfunkel between my ears, I stepped into my doctor's office on 25th and Broadway for the routine blood letting and check-in.  Dr. B's my partner in the matter of my life; he wouldn't just check my chart and blood pressure but will have a nice and concise chit-chat about "Life according to Lora" and so forth.  Finding a seat, humming "Bridge over Troubled Waters," I didn't think this day would be any different.  I had been getting over a cold, needed to get new prescriptions, and get "Big Mamma" (one of my more cooperative veins) tapped.  But my usual greeting was receiving a solemn response - I almost thought I had entered "The Gulag."  I sensed an ominous pall in the air, so I didn't  become my boisterous self or even ask; I assumed I would find out what was happening sooner than later.  The office had become rather quiet the past couple months - the mood was like a bi-polar on a down-swing - the doctor's associate had announced the opening of his own practice - something wasn't right. 

Right before it was my turn to see the good doctor, I pulled out my little list reminding me of what I wanted to talk about, including a humble thanks for counseling me through my year of challenges and having the confidence in my ability to cope and continue.  Since 1997, we had been through so much together; from disclosing my status to my elderly parents, to supporting my advocacy work, and my struggle with the stigma, rejection, and desire to belong. He was not only an ear but had an empathy that went far beyond that of an internist for an HIV+ black woman in America trying to make it.  I heard Dr. B call my name; I left my coat on the waiting room chair, pulled the plugs out of my ears, and lugged my pocketbook and myself into his office.  Slightly slouched, as if his lower back was giving him some grief, Dr. Bellman greeted me as he had for the past sixteen years:

"Hello Miss Tucker, welcome to our establishment. How are you today?"

I plopped myself in one of the two chairs in front of his desk.

"Hey Doctor B..."

I remember when I first met Dr. Bellman, at Friends in Deed in 1997 - I might have just been two months with my diagnosis of AIDS and I was out to find the soldiers for my army against the disease.  I listened to what Dr. B had to say about the new antiretrovirals that were saving lives. I also scanned the large meeting room of mostly gay white men and spotted the doctor's fine ass gay nurse who was working the room (Listen, I still had eyes.)  I met a couple of women and a scattering  of gay black men who acknowledged my existence - but that October of  1997, I realized straight, black, female was surely a minority.  When the question and answer portion of Dr. Bellman's talk commenced, I pulled out my list of questions I had prepared (yes, I'm into lists,) but as he called on me, I began with what was really on my mind...

"Doctor, I am newly diagnosed and have a few questions. How many blacks do you have in your population?"  A hush came over the room.

"I have a few, mostly male."  He went into some detail.

"How many straight females do you have?"

"Not as many as I would like."  He shared how he's willing to be the best doctor no matter the person. I paused. 

"Well, how would you like to add a straight black female to your population?"

The room roared. So began our doctor/patient relationship.

Sitting in Dr. B's office, we went over the aches and pains, he filled out the orders for my blood work, and I, like always, asked for a B12 shot.

"Of course, Miss Tucker."  He answered never missing a beat.  I then asked how he was doing.  He looked up and realized I needed to swap chairs so to look at him directly.  I moved.

"Lora, at the end of December, I will be closing my practice after 28 years."

What the.....

"Oh -" I gasped.  Tears began to march down my cheeks. 

"Well, you do have a right to retire, after 30 years..."

I don't know how I did it - smiling and crying at the same time.  We talked; he assured me that I would be able to transition to another doctor and that I will be able to keep him posted on my continuing journey.   I asked him what his plans were.  (Was he going to go to Disney World?) He shared that he would still be an active advocate, but he needed to rest.  As my sinuses built up for the "boo-hoo finale," I thanked him for being my trusted partner in my fight against this "dis- ease" and a Sherpa in my climb up this Everest-like mountain called life.  I asked him for a hug. We hugged.

After I donated my four tubes of blood, set my last appointment to see the doctor, put on my coat, plugged my ears, and headed out. Simon and Garfunkel worked their way on my ipod to a song for the occasion:

"So long, Frank Lloyd Wright.  I can't believe your song is gone so soon..."

I couldn't believe what the universe handed me...I stepped on the elevator.

"I hardly learned the tune - so soon, so soon; I remember..."

I started to create my own lyrics...

"Paul Curtis Bellman - our office talks would always go beyond.  You understood my song for so long, so long..."  It was like my soundtrack to my own reality show (in my HEAD...)

"Doctors may come and doctors may go and never change your point of view. (How true.)

  "When I ran dry I'd stop and always think of you..."

I walked to 14th Street and 6th Avenue to the "F" train, playing and replaying the song, singing my rendition, accepting the next signpost I was passing.

So long, Dr. B.  You did a job well done and I will never forget the sternness in your brow, the focus in your eyes, the conviction in your voice.  I will always cherish the break into a smile I would try to capture before I would leave your office, a smile that would help me carry on as I battled that rude guest in my body and the often unforgiving world that waited for me.  Just know, when I was in your company, and was able to capture an impish grin or smile, I knew then I had done my job.

Check out the original  song by Simon and Garfunkel: "So Long, Frank Lloyd Wright:"

What Would King Do? (WWKD?)

| 12 Comments

Happy New Year. 

We have survived another year; for me and others, a year of rough transitions, for some, a year of miracles, and for most, just another year.  No matter what got you here, if you're reading this blog, Congratulations, you made it.


Through the year of dreadful acts done to adults and children in schools, shopping malls, and movie theaters; through a very mean spirited presidential election, through the revolutions, wars, and a fiscal cliff (that is waiting for lemmings,) I find myself deeply shaken by how people are treating each other, it is as if people are forgetting how to be an open community, closing ranks via a "check list" titled: "Like or Not Like Me," and not effectively engaging and communicating with each other. Isn't that crazy? In an era where gossip can move so fast from ones mouth (or fingers) it can scorch the air; where there are more devices for keeping in touch, no one is really touching each other, let alone looking up.


In my "shaken state," I started to wonder what King would do.  What would Martin Luther King Jr. do if he was around in the 21st century, in the age of AIDS, The Tea Party, and so called "post-racism?" What would he do with a country suffering from historical amnesia? What would he say about an African American in the white house and African Americans becoming infected with hiv?  How would he handle the new horrors of terrorism in neighborhoods from Newark to Newtown.  Could King be one of America's senior national leaders, no longer "in the trenches," but able to talk with hope about the future, and meld it with what he had experienced, what he knew?  I believe he would be constantly reminding us to "wake up... don't fall asleep..." and "...don't forget."


I was fortunate enough to catch a writer's workshop that the New York Writers Coalition had. (Love their workshops!) They had an exercise that made me want to work on it after the experience was over.  A simple quote that made me write in the moment, then made me want to be in the writing.  Now I want to share a part of the poem with you in commemoration of M.L King's 84th birthday.  (Remember, I do not capitalize hiv/aids. Also GMHC is the Gay Men's Health Crisis...I do not assume everyone knows.)

 

 DO NOT FORGET


"Write What Should Not Be Forgotten"

-  Isabelle Allende

                                   

Do not forget that no one can get "full blown aids,"

That aids is full blown hiv

That people with hiv are more vulnerable to others' "cooties."

 

Do not forget that a kiss is just a kiss,

That status is not attached to an acronym;

that an acronym does not mean damaged goods,

And that a disease does not identify an individual.

 

Do not forget the love does not mean sex

but safe sex means loving oneself,

and people deserve to love without judgment.

 

Do not forget that the chemical warfare

saving many lives is not a cure,

That silence equals death, stigma kills,

and hiv does not discriminate.

 

Do not forget that ACT UP

acted up for all of us,

That GMHC helps everyone in crisis,

That it isn't enough to be straight but not narrow,

But it is important to be straight up.

 

Do not forget

That aids is not just an acronym

That life is not just a four letter word.

The 'Holiday' Bermuda Triangle

| 5 Comments

Here we are - Thanksgiving is over, Christmas is coming, and we are in the midst of all the celebration and "hype" seeping through every pore of American culture - from television, to the billboards, to the internet. No, Rod Serling isn't going to do a prologue, telling us we are now entering "The Twilight Zone," (though it does feel like it at times,) but we are entering what I (and others) call "The (Holiday) Bermuda Triangle" - the time between the Thanksgiving and Christmas/Chanukah (and Kwanzaa) holidays, usually ending somewhere after the New Year.  Not everyone has family, friends, or places to go for the holidays, whether miles, deaths, or emotions separate one from that Norman Rockwell painting. This is the time when people are struggling with their demons - the pains of low self-esteem, the dysfunction and rejection of family, the deep seated issue(s) of the past that rear its ugly head and often drag the person into the vortex of dejection, isolation, and self-medication.  It is also the time where recovery and controlled consumption is challenged:  You are supposed to drink to celebrate, eat to celebrate, party your #*&%* off eating and drinking...not to mention being with the one you love, surrounding yourself with family and friends...And if you aren't joyous...Not full of the mirth and glee of the holidays?  Grinch, Scrooge, Shlub.

During this time, clinicians of mental illness and addictions, caretakers of the elderly to the homeless, and people interacting with ones who are struggling with depression and trauma, become more vigilant; where emotions related to rejection, loneliness, and feelings of inadequacy become painfully real. When I am working with people who are in recovery (from sugar, alcohol, drugs,) I worry about the holidays.  And ordinary people aren't exempt from the "Bermuda Triangle:" Some people, who have grappled with these feelings of loss, also struggle through these times (and who has not gone through this at least once in their life? I know I have...more than once.)  Even folks that present well and have "things going for them;" the white picket fence, the partner or lover, the "two point five" kids, and a dog (or cat,) can succumb to the "Bermuda Triangle." Anyone can crack under the pressures to perform; to get the perfect gift, survive "home for the holidays," and be under pressure to have enough:  money, food, and presents, this and that.  Between the commercials, the family, and the expectations - no wonder "the Triangle" is the time where there are casualties; people "missing in action."

"The Triangle" is no joke, a real "mutha" for many.

Now you know I am not going to bring up such a topic without opening my toolbox and pulling out some of my "tools..." Wait, not tools, but defensive weapons, because for me the holidays can be an assault on my psyche.  I have had my share of melancholy over the holidays; losing close family members, including my father right after the 2005 Christmas holiday, and have dealt with the "don't have's:" No family of my own, no one to bring in the New Year.  So when the "Bermuda Triangle" comes rolling in, I have to prepare myself for battle; set up my "Situation Room," full of plans, strategies, and goals.  I have a four point plan I put in place that makes the holidays my own, not  a "Happy Holidays, Dammit!," but a little system that allows me to define my holiday, give thanks, and see in a new year full of faith and hope...no matter what:

1.      1.  FIND SOME THINGS YOU MAY LIKE TO DO BY YOURSELF: Don't depend on another person, depend on you!   I look for some free or inexpensive places to go on my own - I want to have control of when I come and go, and I want to observe the activity and decide how much I want to be involved.  I may go to the ice skating rink at Bryant Park and watch the skaters (or even skate,) go to the Rockefeller Center Christmas tree, or the store front exhibits that the department stores display.  No crowds, no problem, I will go early, or look up the free day at a museum, an art gallery, first showing at a movie (which can be half price.) All you need is a library (free access to the internet or newspapers) and an ounce of curiosity.

This is also the time when 12 step groups have "marathons," meetings every hour or hour and a half.  And you don't have to be in recovery.  Heck, it is a destination, with a positive support system, a cup of tea or coffee, and takes up some time constructively.  Go, sit and listen, count your blessings, and get over it!

2.      2.  MAKE DATES TO DO THOSE ACTIVITIES:  Put them on the calendar.  Schedule it.  If you know that December 25th is dysfunctional family day, why not schedule that excursion to the rink or walk in the park on the 26th or 27th.  Now you have something to look forward to as you deal with Aunt Marjorie asking about T-cells and viral loads for the sixtieth time.  Or Cousin Edward staring at you like Typhoid Mary.

3.       3.  MAKE A SPECIAL CORNER FOR YOUR HOLIDAY:  I take a table, get some pine sprigs, get a "Charlie Brown tree," decorate it with handmade (and some bought) ornaments, and put my Gumby and Pokey (the alcoholic!) and my mini Etch-it-sketch under my tree. I even mail myself some Christmas cards I may have seen when out and about and put it on the table. (Yes, I mail myself Holiday cards, gotta problem?!) You can update the toys according to your generation; Nientendo, ipod, whatever. Don't want a tree? No problem, a Christmas Cactus, a Hanukah bush, make up whatever you want. It's your holiday table. Lighten it up.

4.      4.  GIVE YOURSELF A SPIRITUAL BOOST: You can get (back) in touch with your spirituality - Go (back) to a church, a temple (Buddhist, Jewish, Hindu, etc.,) or a mosque. Get in touch with your humanity - volunteer and give during the holidays, Commune with the tourist in Times Square, be with friends who have family. Or be peaceful by yourself and for a moment, do nothing...but don't "hide-in." Also, you can get in an extra visit or two with your therapist over this time. (You think?) You know there will be times that the grief may surface, or you will wake up with the "bah-hum-bugs," but they do not have to dominate your head, and you don't need to be "up in your head with no supervision." Whether you are indoors or outdoors, plan something for you, because you deserve to "jingle your bells." Or just jingle a bit.

For some of you, it may not be all that - the "(Holiday) Bermuda Triangle" may be a "whatever" moment in time; so I only ask that you share what makes it easy for you, you may help someone who may be struggling or even stuck (cause you know you have had those "deer in headlights" moments before.) If you are perfectly happy with the holidays, share those blessings, your happiness is contagious and can rub off on one who needs a smile or a hug.  (Yes, a hug - not pats on the back like you're burping a baby, but a heart-to-heart hug.)  So, if you see me about The Big Apple this holiday, help me survive "The Bermuda Triangle" with the fifth (and bonus) point in my plan-

5.  GIVE (ME) A HUG FOR THE HOLIDAYS.

Weathering A Storm

| 2 Comments

Brooklyn after Hurricane Sandy -

I took a walk around the perimeter of Prospect Park the Thursday morning after the storm to shake my cabin fever; I was blessed not to be directly affected by the storm, but even in my neighborhood there were places that looked like the losing boxer after a fight.  There were trees on almost every block with branches snapped or the whole tree toppled over - some cracked like used toothpicks, others like someone had grabbed and pulled them up like a bad weed.  I felt like I was walking through ether that morning; with the cold, crisp air periodically hitting my face like cold water slapping me back to reality.  Nothing was like it was - the landscape, the air, the city. 

It made me think -

About my last entry in Poz blog, joking about the daily (and daunting) routine of traveling on the subway, my attempt in satire to share about those "tin cans with a motor." Then I walked to the Church Avenue subway station, saw the yellow tape and the Transit police stopping anyone who tried to enter.  As I passed by, I recalled the videos of the subway stops, like the South Ferry station, that were turned into fish tanks. I thought about how I still take so much for granted, that this "megapolis" called The Big Apple is impenetrable, Hurricane Irene wasn't so bad, that the media is just hype, and New Yorkers will just get wet, hop on the subway, and continue "as if..." 

As I walked, I thought of my favorite Psalm and recited it over and over, as I do when I am in crisis or at a loss: "Yeah, though I walk through the valley of the shadow of death, I fear no evil..."

I wanted my subways back. I wanted my city back.

I then thought -

We all go through our storms, our surges of horror and pain.  Often we take for granted the blessings we possess or that we can keep things moving without any thought we can forget, and in a blink of an eye, it can all be gone.  As someone with "hiv," I rarely allow myself that "luxury," knowing what this dis-ease can do and being a witness to its wrath.  But somehow, there was a part of me that forgot that it doesn't have to be the "hiv" that could take me down, I am a survivor, but the life boat could still capsize:

When I wrote in July, I had taken for granted that I could write, even with an injured wrist. Then, eventually, I wasn't able to grip and hold a pen; even typing was beyond painful.  I knew that I had to take care of this (I was already treated for carpal tunnel), so I could do my progress notes and not lose my job, type my blog, write my poetry. I was becoming tired, overwhelmed, depressed; I couldn't do all that I thought I should. I wanted to be able to write with my fountain pen again, type on my laptop, and keep up with life.  As I hopped on the Church Avenue bus, I recalled how I went to the doctor about my wrist; he referred me to a rheumatology specialist, who, after reviewing the results of my blood work, found a protein in my blood. (This had nothing to do with my wrist.) I then was told I had to see a hematologist/oncologist. (A what-what?!  Oh-oh.) I went to the hematologist, he told me that I needed a bone marrow biopsy; on one end, it could be benign, on the other, it could be multiple mylanoma. (Wha-the-#@%$?!) I've been fine for years, taking care of myself, medication was doing okay, the "hiv" was chilling, what the hell now? I took for granted that now that the "hiv" was "playing nice," I can keep it moving. Nothing else could happen... I didn't see this "surge" coming... I had my own storm.

I got off the bus, returned to my home, thinking of the past week's horrors. Sandy, New York's Nero, left havoc in its path and humbled the toughest New Yorker (and "Jersey-ite".)  Some took warnings for granted, some were not informed properly, homes were up in flames, families losing possessions, hospitals relocating patients, people living in the cold and darkness, with no way to communicate; the loss of the infrastructure; of electricity, phones, the loss of life... all the suffering; everyone was caught in the Super-storm surge, including me. And we all are weathering Sandy and our own storms in our own way.  We will recover; we will persevere.

Please vote and stay safe.

Yea, Though I Walk Through...

| 1 Comment

A Strap Hanger's  Prayer, My Urban Psalm

I have been "injured" for the past few weeks; there is a cyst on one of the bones in my right wrist.  Being that I type for a living, this causes some difficulties. (You think?)  So, as I continue to figure out the best way to write, I'm keeping it moving, even in this heat. (I bought Nuance's Dragon Voice Recognition software for home....if anyone has mastered the software, please send tips!)  With a brace on my right hand and forearm that resembles a Klingon bracelet, I'm going to work, riding the subways, making field visits, and just "social- workin."  And right now, writing.  So, while the pain killer's working, let's catch up, I decided to keep things "light."

It's summer in New York City, and when you think of summer in New York, you think of...the subway.  Ah- how the subway brings you closer to the true pulse of the Big Apple.  With a Metro Card, (the techno-key of frustration), and a subway map, (showing the different realms of purgatory,) you go from point "A" to joining the Lemmings off the cliff. 

In a writing exercise I did at a New York Writer's Coalition workshop, (they are great...more on them in another blog,) I wrote a vignette, a prayer/observation for the subway riders of the world starting with a line from a favorite phrase.  Please note:  This may "sound" familiar; this is my favorite psalm, one I recite when I visit that "valley"...I just made it into an "urban psalm:"

"Yea, though I walk through the valley of the shadow of death," after swiping my MetroCard -

Oh hell - I can't go anywhere; it's telling me to: "Swipe again at this turnstile."

Suddenly, time and motion slows down.  I swipe again and look before me: The token booth clerk is peering at me, daring me to "make her day," leave that turnstile, go up to her, and lose my $2.25.  The professional pan handler began to shuffle towards me; his lips perched to blabber how he can "help" me for whatever I could give.  A young, long legged Vogue Magazine Ad, who was right behind me, swerves and huffs, as if she has had one too many encounters with a non-rush-hour strutting, poor -MetroCard swiping, black women for one day... I swiped again, and again....

Yea, though I walk through the valley of the shadow of death, after swiping my MetroCard three times; I began to realize that I am one of the thousands of life members (or "lifers") of the New York City Metropolitan Transit Authority (the MTA,). Here I am, donating daily to the capital improvement fund, which the next generation will enjoy (like the 2nd Avenue subway). I am one of the many working stiffs who, no matter how the weather is or who won the election, will mill, meander, and march through the "valley" called rush hour in the subway.  Thousands of miles of track, countless turnstiles, and I am stuck here, swiping my MetroCard, (watching my T-cells jump the turnstile and run for the train).

My bags and smart pad shall comfort me... Well armored, usually with a smile, my mantra is from Rodney King's plea ("Can't we all get along?") I put the soundtrack of my very own epic adventure in my ears and grab thy rod and staff; I mean my hand bag. As one hand clutches my bag and the other all my patience, I successfully swipe my MetroCard, put on my "Sista won't take any {umph] from you either," face (to address my immediate competitors,) and head toward the platform.

And I will dwell in the maze of the MTA forever.

A - train.



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