Thursday, June 18, 2015

Why Every Day Must Count

18 June 2015
For an early riser, it is late in the day, what I normally call "mid-morning."  It is 11:22 CDST.   It was only about 2.5 hours ago when I left my bed, which normally happens around 6:00.   As difficult as it was to get up, it was even more difficult to fall asleep last night.

Yesterday was a normal Wednesday -- activity off and on until going to the campus of South Main Baptist Church for food, fellowship, prayer, Bible study and choir rehearsal.   I had the pleasure of sharing my table with four of our youths, and a youth imposter, a middle-school-looking young lady who turned out to be "Mary" -- one of our ministry interns who is on a college summer break.   They enjoyed a fantastic "taco" meal from our kitchen --- flour and corn tortillas, chicken, beef, sauteed onions, bell peppers & other stuff, guacamole, pico de gallo, sour cream, refried beans (like I've never had before!) and all the other "fixings" that make a fantastic DIY TexMex plate.  And, of course, way-too-decadent desserts.   It was great to converse with folks young enough to be my "grands" and watch them eat with gusto the stuff that I've had to give up.   (I settled for a meatless, tortilla-less, cheeseless, dessert-less meal.  It was good, but there was no chocolate in that mix.)   I noticed when they left, the table was a clean as before they sat to feast.  [Our kids rock.  :)]

Bible study was a look at two obscure characters who were raised from the dead by Peter and Paul, Tabitha (Dorcas) and Eutychus, respectively.  Though the end result was the same for both -- they came to life -- there were different perspectives for the two situations.   (And I am reminded how no matter how often the Bible is read, there is always something new to find.)

Toward the end of choir rehearsal, one of our members read to us her sentiments following the loss of her brother.  We were reminded of how, whether we are aware are not, we leave our prints on the lives of others.

Then, on the way home, I had a nagging compulsion to cancel this morning's 8:30 a.m. meeting.  There was no clear explanation, but I sat in my car and composed a text setting out my reasons (which in hindsight, make absolute sense), and sending it.   When I came inside I sat at my desk, and copied and pasted the text of the message in an email and sent that as well.  (I am, after all, a belt-and-suspenders kind of woman.)  I was overwhelmed, and had no explanation until I turned on the news, and there IT was -- the story of a shooting inside a church not long ago.

I poured myself into bed, could not sleep, watched episode after episode of Stargate 1, Season 3, eventually just passing out.   When I "came to" this morning I had no inclination to move.  Like many others, my mind was a whirling mess of who/what/why/how, and there were no answers.  Then the why bother "ism" set in, followed by paralysis.  I simply did not move.

Today is your birthday?   How can you celebrate?

How can I NOT?   I am still here!

But what about those people?

I grieve for those people, and their families, and for people of whom I know nothing --- the ones who did not awake this morning, the ones who breathed their last before midnight, the ones who . . . who . . . heck, everyone.  

So, just skip the day.   Stay in bed.  Wait until tomorrow.   You need a break.

Then, the light came on.

No!   I don't get to skip a day.   I don't get to wait until tomorrow.  Even if I need a break, I have to make this day count for something, and that means I must move!  I've got to get moving.  There is something for me to do TODAY.   Something productive.  Something meaningful.  Something beneficial for someone.  I've got to print myself on this day, some how, some way.   

It would be different if I could not get out of bed.  There have been lots and lots of days like that.  This is not one of them.  And I am thankful.  So, while, I can do something with this day, I must make this day count.

How this day will count I have yet to know; I may never know.  But this day is gift to be cherished by living it, not by hiding in bed with videos streamed form Amazon Prime.   I suppose it is fitting that on this day, marking another year of life, when as I told my Brer that there have been several times when I thought I was being fitted for my wings (or horns, depending on whether my soul will soar or plummet), it should be shared with joy and thanksgiving.

This is why every day must count for something.  My prayer is that the something will be positive --- opportunities to share, care, show love/grace/mercy, encourage, be gracious and kind, spread joy, be salt and light to the world, making a print, even on just one.

If I can help somebody, as I pass along,
If I can cheer somebody, with a word or song,
If I can show somebody, that he's travelling wrong,
Then my living shall not be in vain.

If I can do my duty, as a good Christian ought,
If I can bring back beauty, to a world filled with wrought,
If I can spread love's message, as the Master taught,
Then my living shall not be in vain.

Tuesday, April 14, 2015

Day 13 of Sarcoidosis Awareness Month: An Invitation to Spend a Day in My Shoes

NOTE:  this post was started on the morning of 13 September, however because of the events of the day it was not completed until 14 April. 



She awoke at 4:30; feeling it was early, she refused to look at her phone (the ‘clock’), opting to keep her eyes closed and lie still.   It was clear she was in trouble.  This is a classic Sarcoid day, she thought.  She could feel the dead weight of her body, especially her legs.  It was as if a herd of imps had ascended from hell, each poking a straw in her to suck out her life.   When the 0545 alarm came on, she ‘set’ herself to arise at 0630.  Surely I can get up by then.

The morning news/gossip/opinion/slander program came on, allowing her to relive the horror stories of the day before:

  • A 73-year-old reserve cop shoots and kills an unarmed man.  At some point she opened her eyes in time to see a knee pressing on the man’s head as he lay on the ground.  Then there was a voice:  f—k your breath.
  • A young woman is raped by several men on a beach while people are all around her, and rather than render aide, they record the incident.  A Panama City police official calls the perpetrators animals.  Her immediate thought was why insult the animals?
  • Hillary Clinton announced she is running for POTUS.  While this may not be a horror story, she thought of the already egregiously nasty political climate and uncivilized behavior that has reached epidemic proportions.  Add to that being inundated by the idiots who would compel me to vote for Hillary because she’s a woman is just too much, she thought to herself.  Rationalizing that thought, she said aloud, pointing her right index finger (a habit when she’s making a point):  It’s not that voting for Hillary is in itself idiocy, it is voting for her because she’s a woman.


Time zipped by.  It was 0730 before she arose, plodding along at a snail’s pace, trying to remember her last productive day.  It is Monday, and she had to think back to the Wednesday prior for a day during which she did some solid, productive, billable work.   Breakfast was a simple smoothie – a concoction of strawberries, an orange, flax seeds and a scoop of Perfect Food (that’s the nastiest stuff she’s ever had, but it’s supposed to be nutritional).  Sitting at her desk, she tried to get a handle on her day, remembering a 10:00 doctor’s appointment.  Suddenly, she felt the rumbling of a volcano, inside her, and rushed to the contain the eruption.  She wasn’t quite fast enough . . . almost, but not quite.  After cleaning up the mess, and herself, she left for her appointment.

She stumbled into the office of XYZ Nephrology.  An older woman was at the receptionist’s desk.  The woman looked at her, and told the receptionist You should take her first.  Thank you, she said, but I’m okay.  And I’m new, so I probably have to complete lots of forms.   The two women sat back-to-back; they engaged in conversation while the younger completed her forms.  At some point, the older woman, reached behind and laid her hand on the shoulder of the other.   The comforting touch communicated to the other you are not alone.  

After spending about five minutes with the specialist (and wondering what he would bill for that precious time), she left the office.  Walking down the busiest corridor of this building, the one that accesses the crosswalk to the parking garage, she was near collapse when a man and two women just grabbed her, easing her down tot he floor.  Someone called paramedics.  Security personnel came.  Upon arrival, the lead paramedic determined they could not examine her in the hall, so he walked through the nearest door, the reception area for a cosmetic surgeon.  Skipping over the gory details, about an hour and a half later she was allowed to leave if she called a taxi to take her home.   Her day was over and it was only 1:00 p.m.

This occurrence is not new, nor is it uncommon.

There is an old saying, that you cannot judge a book by its cover. This is so true when people look at anyone and decide their intellect, character, education, credentials, or value. This is also true when people look at a Sarcoid patient and say well you look alright.  She I looked alright this morning. And despite that she felt the life draining out of her body.

She still remembers vividly, at a hearing years ago in an administrative court about the appeal of her application for Social Security disability, which had been denied. The representatives for the Social Security Administration and the administrative judge both thought she presented myself too well to be sick.  She was asked how did she get dressed, to which she replied my daughter helped me.  She was then asked who combed her hair, again to which she answered my daughter helped me.   She had been warned that she should not present herself at a hearing looking "normal.” It was suggested to her that she dress like someone who was so poor and/or homeless that she did not have proper clothing or access to grooming and toileting facilities.  To this day that is one of the most offensive conversations she has ever had. And also to this day she has never collected a dime of the Social Security disability for which she qualified, having been certified by three physicians, independent of each other, benefits for which she worked.

Every time she received a payroll check, there was indicated  gross income and net income, and the difference between those two numbers comprised various taxes and deductions for medical insurance and Social Security.  For 19 years, she has managed to more or less sustain myself. It has not been easy. In fact there have been many times when her body was pushed well beyond it's limits, just to finish a project. There have also been times when she needed medical care but did not have insurance and could not afford to see a doctor.  Had I been granted the Social Security disability she would have had a Medicare card 17 years ago.  As flawed as Medicare is, she would have been better able to access the healthcare she needed when she needed it, rather than having to wait and save and miss appointments and sometimes tests and procedures.  With the Affordable Care Act, she has been able to get insurance that she can afford and have access to health care when she needs it.  And the idea that there are people in this country who would rather her not have that kind of access is galling.

She has seen people come to the United States from other countries and get benefits that were not available to her.  She has seen companies and individuals get tax breaks and pay little to no taxes.  She has seen bloodsuckers (also known as politicians) line their pockets with ill-gotten gains from selling themselves and the welfare of their constituents and prostituting their own morals for their own benefit.

By the way, the Houston Chronicle, years later, published a story about that administrative judge, who had a history of rendering biased rulings against certain groups of people, of which she is one.   She filed a complaint and nothing ever came of it.  She has been scoffed at an ridiculed for using accessible parking places because people look at her and determine her need for the space.  The only thing she has to say to them is spend a day in my shoes and then let's talk.


Sunday, April 5, 2015

DAY 5 OF SARCOIDOSIS AWARENESS MONTH


And it’s Resurrection Day!  Alright, many refer to it as Easter.  I’m a Resurrection Day kind of woman.  And what a glorious day it has been, spending the morning on the campus of my church for worship, Sunday School and fellowship. It is a day on which I was reminded in song, scripture, sermon and quiet, that my faith is what keeps me going.

Life is not what I thought it would be as a tread closer to 61.  After all, 35 years ago I projected 2015 would be my retirement year.  When you lose almost two decades of productivity that's more than a stretch.  Ha!   Still, life is good, because God is good.  And even in my infirmities He sustains me and gives me peace.

The Glenn Edward Burleigh adapted a hymn of which I am reminded.   This is what he added:

He gently speaks to me; in my quiet time alone with Him I find the love I need.  
He gently speaks to me; in my quiet time alone with Him I find the joy I need.  
He gently speaks to me; in my quiet time alone with Him I find the peace I need.  

The refrain of that hymn says:

Blessed quietness holy quietness
What assurance in my soul
On the stormy sea He speaks peace to me
And the billows cease to roll

Glenn then continued:

When he speaks to me, I get peace that passeth understanding
When he speaks peace to me, the power of God takes control 
When he speaks peace to me, I get joy, unspeakable joy in my soul
And the billows cease to roll.

Yep, there are storms.  Some of us call them by the names of unloving spouses, unruly children, insufferable supervisors, or bills that sit at table every meal and refuse to ever leave.  And some call them tumor, lymphoma, cancer, MS, ALS or Sarcoidosis.  Whatever the storm, He is the shelter.  Whatever the problem, He is the solution.  Whatever the question, He is in the answer.  That is not to say the storm will disappear; it is to say that He will see you through it.  After all, life here, no matter how meaningful, or successful, or how much we enjoy it, is only a way station until we go home.  And as long as we're here, if we are Resurrection Day kind of folks, we aren't home . . . yet.

Thursday, April 2, 2015

DAY 2 OF SARCOIDOSIS AWARENESS MONTH:

It is also Maunday Thursday, and when I looked outside and saw it is overcast and the sun is up there, but hidden, I thought it about par for what folks who share my faith will commemorate today. It is a day of shadows and darkness.

For many Sarcoid sufferers, most days are filled with shadows and darkness. Because the disease is so misunderstood and in most cases unknown, it is not uncommon for Sarcoid patients to feel isolated and suffer tremendous bouts of depression. Because the disease often goes misdiagnosed, people are often told things like "You're just lazy. You'd feel better if you got up and exercised." A woman's doctor said that to her. She went improperly diagnosed for more than ten years. The problem is, most have difficult just getting up!

In my "pre-Sarcoid" years I weighed about 140 pounds and walked several times a week, generally about 15 miles. There was a weight bench in my bedroom, and I could bench press 175 pounds. Indeed, that's all history. I have learned not to dwell on what "I used to do" and be grateful for what I can do. Sometimes, however, those pesky imps rear their ugly heads and try to plant all kinds of ugly stuff in my mind. Get thee behind me!!!!!

As you can see from the picture, I am wearing all black, the uniform of the day for our sanctuary choir members serving in this evening's "Service of Shadows." [I confess the last time I wore this suit it was not so snugfrown emoticon I really have to toe the line because I don't get much exercise, and I have all but left the line.] I'm not much on smiling, but considering the overcast sky and the Christian theme of the day, I tried to do a little contrast. And there are lots of things for which to smile and be thankful, including that I got up this morning.

Monday, March 23, 2015

Grieving for the Lost

As a young girl in Houston in the 60s, my exposure to racial unrest was minimal, as the kinds of events that occurred in other southern cities were not as widespread in Houston, Texas. I recall just a couple of years ago, Rev. William Lawson, Pastor Emeritus of Wheeler Avenue Baptist Church, explaining in a sermon that paralleled the civil rights struggle with the Old Testament struggle of the children of Israel, that there was some kind of negotiated agreement between local Black leaders and others of the paler national about desegregation. I do not recall demonstrations in Houston where people were assaulted with fire hoses or beaten or spat on or killed.




That is not to say there were no racial injustices; there were plenty, but not on the scale of Selma, Birmingham, Little Rock or other places. I can cite instance after instance of my own personal experiences, but this writing is about something so much larger than I; it is about all of us. Still, I have to get personal. Because observations, experiences, feelings and impressions are first personal. What one sees, takes into the mind, and filters through knowledge and past experiences, and, hopefully, objectivity, still has a tinge of "it’s personal." So the accumulation of stuff that one sees, hears and experiences day after day – the good, bad, positive, negative, indifferent, ugly, outlandish, vile, unspeakable, disrespectful, encouraging, savage and uncivilized – can be overwhelmingly depressing. And that is personal. Did you notice that the bad outweighed the good? It was so easy to think of the negative stuff. And that is depressing.


So, what does all of that have to do with weeping for the lost? I’m glad you asked. Fast-forward to the present, remembering a bit of what has happened in the past.


I do not believe in coincidence. While leaving Birmingham I took the wrong exit and found myself on the wrong freeway. Getting off at the next exit, I happened to look at my gas gauge which showed I had about a quarter of a tank of gas. Even a Prius can’t get very far on that, so I pulled into the first gas station I saw and filled up. Getting back on the street I began to make my way to the right entrance, and observed a sign – "16th Street Baptist Church." Not yet realizing the significance of that sign, I headed toward 16th St. I cannot describe how strange this was. It was one of those funny feelings I get when something is about to happen and I have no explanation but just know the funny feeling means something. I turned right onto 16th street, drove a couple of blocks, and there it was – the 16th Street Baptist Church. I took advantage of parking on the street in front of the church and I got out of my car and looked at the building, taking note of this post

with painted messages that was just to the left. Then it hit me: this is the church that was bombed in the 60s, the church where the four girls were killed one Sunday.


As I walked up the steps that funny feeling was overwhelming. As I stood at the door of the church I knew I was looking at different doors and windows but it really hit me that this is where something painfully significant happened. This is where a house of God was attacked by people who claimed to believe in Him. This is where four young lives were destroyed and the lives of their families were changed forever.

My imagination ran wild, and in my mind’s eye I could see horror and violence — vicious dogs, men on horseback wielding clubs, others with fire hoses, people posing around bodies burned beyond recognition, hanging from trees, men behind bars whose only crime was an aspiration to be treated with basic human dignity and have the same rights as others. Tears streamed down my face, streamed freely as I stood there struggling to compose myself. Why is this happening to me? Why can’t I stop crying? Part of it was deep sorrow, part was gratitude and part of it was prayer.

I grieved for the loss of life. Only the Giver of life should take it.

I grieved for those girls who would never grow up and experience the joys and sorrows of having done so.

I grieved for the families who lost their precious, priceless treasures.

I grieved for the unjustifiable hatred.

I grieved for the senseless destruction and damage to God's house

I grieved that such evil existed in the first place.

I grieved that it still does.

Even while I grieved for the past, I grieved for the present –

That decades later racism still abounds.

I grieved for the hatred that still exists and for people who want to conserve a way of life that would stifle opportunities and rights of some so they can perpetuate their false sense of superiority.

I grieved for their ignorance.

And even harder, I wept for the lost, those who now take for granted what decades ago others fought so bravely and endured so much, even death, to obtain for themselves and their progeny. Those who do not vote. Those who refuse to go to school and get an education. Those who waste opportunities to improve their quality of life. Those who refuse to take responsibility for themselves.

And being keenly aware that the sacrifices made there and in other places by people I will never know, have impacted the quality of my life. I am grateful beyond words.

And I prayed. I prayed for the peace that we still don't have.
I prayed to see that peace before I breathe my last.
 

Thursday, March 5, 2015

This is My Prayer


Today I met a 33-year-old woman who has two children by a married man. I am told that it was while she was pregnant with the second child that she learned the man was already married, and so she left him. I had to tell her that she did not qualify for help with paying for health insurance because her income was too low, and that she did not qualify for Medicaid because she was too young. She told me about her income, and I asked if she planned on going to work, to which she replied she could not work, that she has never worked. She appeared to be in good health, but remembering how ticked I get when people tell me I look "alright" I asked if she had a condition that kept her from working and she told me that she was "slow." 
 
Me:  But you can do something, can't you? Surely there is something you can do to earn an income
 
Her:  No, I’m just slow.
 
Me:  Well, maybe it takes you longer to learn something, but does that mean you cannot?
 
Her:  Well they said I was slow and I can’t do anything. Any way if I work I’ll lose my benefits?
 
Me:  What benefits?
 
Her:  SSI
 
Me:  And how much is that?
 
Her:  $648 a month.
 
Me:  What else do you get?
 
Her:  That’s it. And child support.
 
Me:  And how much is that?
 
Her:  $294 a month.
 
Me:  Don’t you think you’re worth more than $648 a month? What if you could make $1296 a month? Wouldn’t you be better off?
 
Her:  And they already took some of my money.
 
Me:  What money of yours did ‘they’ take. You haven’t earned any money! Don’t you want to be free to earn your own money?
 
No response.
 
When I took a really good like at her, I saw a hollow, depressed, broken, hopeless soul. I had no idea how she came to be so, but it hurt me to my core. Part of me wanted to scream, and the other part wanted to cry. I cannot help but speculate that from an early age she was indoctrinated to believe she had nothing of value and could do nothing of value. I would like to meet the people who gave her the foundation to imprison herself for life.
 
God did not create you to have nothing to do or nothing to offer. If you ever decide you want to do something with your life, I will do whatever I can to help you find a way.
 
In my work I meet people of all socio-economic ilks.  On the one hand, I have visited well-cared for homes, modest and absolutely opulent, and on the other hand, one so infested that it caused me to stand.  (I explained that my knees were bothering me and the seat was kind of low, so it wasn't blatant lie.)  I have met young adults whose sour attitudes and "I-want-isms" made me envision slapping them, while that voice in my right ear (yep, I hear voices) chided me about passing judgment. And I have met folks whose lives, after decades of work and responsible living, have been challenged and stifled by lost retirement funds and chronic illnesses, and whose level-headed and gracious manner made my work easy, even when bearing not-so-good news.
 
Until I met that 33-year-old, I thought I had seen it all. I am haunted by her visage. And I pray she will find the will to leave her prison and embrace the good, bad and ugly of life – its joys, sorrows, failures and successes. I have no idea how I can help someone so enslaved. And I pray that she will call, and when she does, He will show me a way.
 
This is my prayer.

Tuesday, February 24, 2015

Checked Your Kidneys Lately? -- "Medical" Thoughts of a Lay Person

Dialysis clinics are popping up all of the Greater Houston Metropolitan Area like banks. Have you ever wondered about End State Renal Disease? I am told that uncontrolled diabetes or high blood pressure can cause kidney failure (will have to research in my "spare" time).


Recently I met a 29-year-old and his 57-year-old father, both on dialysis. On the same day, about a mile away I visited with a woman who became my client, who has ESRD. None of these people are of Medicare age. All of them have well-worn Medicare Cards. Over the last ten years or so, dialysis providers have consolidated, resulting in two large organizations treating approximately 72% of all U.S. dialysis patients. What does this do to costs? A diagnosis of ESRD entitles one of any age for Medicare. ESRD costs are generally over $600,000 a year. 

While I cannot spout a lot of medical mumbo jumbo about ESRD, I do believe that stuff we drink -- and stuff we should drink but don't -- can have a deleterious effect on kidney function. Various studies show that the consumption of soda in the United States is about 50 gallons per person per year. Realistically, many consume much more (someone has to be drinking my share because the occasional Diet Mountain Dew, about one a month, is only 1.5 gallons a year).

In 2011 there were about 507,326 in the Medicare ESRD population and 108,573 in the non-Medicare population. Medicare spending on its ESRD population in 2011 was $34.4 billion. (usrd.org) Many ESRD patients qualify for Medicaid, hence an additional drain on states’ funds. 

This is not a "don’t treat ‘em" speech. Rather, it is a suggestion that "we" take better care of our bodies. There are things we can do, and things we can refrain from doing, to help ourselves. Get regular checkups for early detection of dieseases. If diabetes is an issue, avoid stress, eat a healthy diet, exercise, take medications as directed, reduce/eliminate alcoholic beverages, and monitor blood glucose. If high blood pressure is an issue, avoid stress, eat a healthy diet, exercise, take medications as directed, reduce/eliminate alcoholic beverages, monitor blood pressure.  And drink water. 
 
Sounds kind of redundant? Yep.