“Lost in Space"

                                                 

 I push *1234 (not the actual code) to enter the Skilled Nursing Facility (SNF) to see my dad.  I think to myself, “More security than to enter most places like schools? Really?”  I suppose this is more about keeping residents safe than keeping us out.

I am a daughter, not a social worker in this new world of SNF. Note to self again and again. You are daughter.

Dad says, “I feel like I have landed on a different planet.” I agree with him. Ironically, the SNF is actually located on Mars Drive. Coincidence? 

 During my first long walk down the hallway to his room, I wondered, “Where am I?”

Workers at the nursing home were walking and talking to themselves through headsets and microphones. I heard, “Continue. . . bed 108, in bed, out of bed, etc.” No eye contact was made to anyone in passing. Robots anyone?

Now that I have gotten to know these robots, guess what? They are professionals like you and me. I realized what they were doing was saving time and energy, charting while traversing the hallways, and checking on the “pods” on planet SNF.

I found my 93-year-old dad’s “pod” and entered into his new temporary home to find him fast asleep with the lullaby hum of artificial oxygen. His sweet face was the only familiar thing to me in his room.

It is hard for me to separate being a licensed social worker from being a daughter in this atmosphere.  In most of my professional career, I have been acutely aware of policy and procedure when dealing with nursing homes. It was my job!  But now, this is my family!

Upon dad’s entry to the SNF, I signed an inch thick stack of papers agreeing that I understood the rules of this planet! Truthfully, I am not completely sure about any of these rules. I am depending on the experience of others to guide me.

Luckily, like angels on my shoulder, professors, family, and friends have showed up, called, and emailed with on point suggestions. Interestingly enough, these suggestions have not only targeted my dad’s in–house protection and care, but also his financial benefits as a World War II veteran and retired minister.

 One particular professor expressed to me that people ask her why no books are written on how to help families in the transition from home to a skilled nursing facility. She accurately replied, “ Until it happens to you, I am not sure you really would read the book.”  I have to say, “I agree.”

My dad called me this Sunday morning, which was in some ways a holy moment between the two of us. Until recently, his norm was to attend worship with me every Sunday. He said, “I am completely and totally stunned at the amount of visitors I have had and their kind and generous comments.”

I previously thought that most people in a skilled nursing facility were lonely, felt forgotten, and were off the beaten path for most of us. I now sense that what these residents need most is the personal touch of a hand, a face-to-face visit, a one on one conversation, a hamburger brought in from the outside world, and a listening ear.

All of these acts of kindness are welcomed.

However, what about telling SNF residents a story, reminding them of funny anecdotes, sharing tender moments, listening to wise advice, but most importantly giving affirmations of God’s perfect remaining intention for them. In other words, “Do you still need me?”

“Grand Jim, Dr. Cole, Brother Jim, Jimmy, Old Pleasant, Jim” says, “I am stunned and humbled by cards, notes, phone calls, visits, and prayers.”

 Now it is my turn to say thank you, “ Thank you to the LVN’s, CNA’s, care staff, family, friends, church community, Baylor family, and professors. You have entered this planet SNF to visit my father and helped enrich his life. Thank you for taking time out of your busy days to give  my dad who feels alone, isolated, and powerless a sense of purpose.

           On  leaving the SNF today, I wanted to remember as a social worker that we recognize the residents as somebody’s father, mother, and grandparent. They need our loving care and they’re not just old people in the bed.

My blog site is named Breaking Free and I think there's nothing more that my dad would rather do right this minute than to break free from the skilled nursing facility! I am dancing the fine dance of being daughter and social worker, and I want to make sure that I hear the music clearly, honor his wishes, and treat him with the dignity he deserves.

                 Grand-Jim storytelling with grandson, Jason, in “pod” # 108 at planet Nursing Home

Alone we are rare. Together we are strong.

           As we flip to the month of March on our calendars, I cannot help but feel a sense of great joy and great sadness.  On March 11, 1983 my daughter Allison was born.  She came into this world with a relentless spirit.  She left this world with that same relentless spirit on April 21, 2006 at just twenty-three years old.

            In the past, turning the page on the calendar from February to March was always exciting for me because it was time to celebrate Allison, who believed HER day of birth should be a national holiday.  Little did we know that when she came roaring into this world much earlier than expected, she brought with her a rare syndrome called Ehlers-Danlos Syndrome Vascular Type (VEDS).  Allie was born with a clubfoot, and her lungs ruptured several days after her birth.  We were told that her foot and lungs were “no big deal” and that we could fix both complications.  For twenty years, Allie lived a full life with few limitations.

The summer after Allie’s freshman year at UT, she had a mini-stroke.  This began our long journey to discover a final diagnosis for Allie.  The mini- stroke apparently signaled something was clearly not okay. We saw doctors locally,they ran tests, and we were finally referred to specialists in Dallas, all the time thinking something would be discovered and we could fix whatever it was that was wrong.

Allie returned to her beloved UT and continued classes between trips to Dallas doctors, many ER trips, and hospital admissions.  Once we were in a doctor’s office waiting room, and Allie turned to me and said, “Mom, something is not right. I know it.”  I will never forget that moment and the look on her face.  She knew.

Allie called me later saying four words, between her tears: Ehlers-Danlos Vascular Type.  At that point we still had no idea what those four words meant and what they would mean for her life.

 After reading about VEDS online, suddenly the twenty-one years of her physical life made sense.  As it turns out, the clubfoot, preemie birth, and ruptured lungs all signaled much more than “we can fix that.”  However, Allie was not a person to ever think she needed “fixing.”  This was one of her lasting legacies to her family and friends. People do not need “fixing,” and people are not less because of a difference.

  Her doctor said that Aliie was “no shrinking violet.”  We knew that Allie would not agree to just sit down and stop living life.  As odd as it may seem, as a mom, I could not have been prouder of that description of my child, even though I knew she would possibly die sooner rather than later.

            I began my daily research on VEDS, found an online support group, and joined the Ehlers-Danlos Syndrome National Foundation (EDNF).  I now support the EDNF and their efforts to research this tragic syndrome.

  This brings me to the main point of my blog.  Friday, February 28 was Rare Disease Day (https://www.rarediseases.org).  I want to shine a light on the importance of supporting research efforts on behalf of those diagnosed with rare life threatening and/or life altering situations.  All of us are likely familiar with campaigns for cancer or heart disease.  However, most people are unaware of the rare diseases that desperately need funding for continued research efforts and support.   

    Very little is known about VEDS.  For years, I wore my tie-dyed armband to show my support for EDS Awareness.  In 2004, the ENDF had very little information on the their website. Those of us searching for information and support groups had to work on our own to find one another.  Now, in March 2014, the ENDF website has improved exponentially. They even have a blurb on the home page now alerting readers about the severity of VEDS, encouraging people to seek immediate medical attention. Together families, patients, and healthcare providers affected by EDS have combined their voices to raise awareness and continue research in this important area. 
      People living with VEDS often have major organs and blood vessels rupture. During Allie's life time, her lungs ruptured several times, her spleen ruptured, and her major blood vessels ruptured, somehow she always managed to pull through those tough times. After graduation from UT, Allie moved to Washington D.C. where she worked and lived a full life. While living in D.C and loving life, Allie's aorta ruptured and she died from complications of VEDS. Sadly, nothing much can be done to repair a ruptured aorta for a person with VEDS.
         This March, Allie would be thirty-one years old. She gave us more than we ever gave her.  She taught us more about living and life than we ever knew before.  She reminded us to compliment others “the second we had a good thought about someone” and not to wait! Her never-ending courage and bravery continues to inspire us all everyday.

Allison Ann Bucy  3/11/83 - 4/21/06

http://www.ednf.org/vascular-veds-emergency-information

http://www.ednf.org/vascular-type                 

http://www.cnn.com/2014/02/28/health/rare-disease-day-irpt/

Calling All Hearts

Our pastor asked us the following questions in her sermon today:  Where do we belong? To what groups do we belong?  The sermon featured the word belonging (Birdwhistell, “We Belong Together,” 2014).  At first, the pastor led us down a “yellow brick road” of belonging. Then she took a sharp left into the land of being the outsider, not a citizen of the land called “Belonging.”  My social work wheels started turning.

Brene Brown, a professor at The University of Houston in the Graduate College of Social Work, reminds us in her own words, “A deep sense of love and belonging is an irreducible need of all people. We are biologically, cognitively, physically, and spiritually wired to love, to be loved, and to belong. When those needs are not met, we don't function as we were meant to. We break. We fall apart. We numb. We ache. We hurt others. We get sick” (Brown, “Want to be happy?” 2013).

Oftentimes, we are so insecure about if and where we belong that we can’t even see the needs of others around us who are desperately searching for the very same thing.  If we aren’t sure of our own spaces of belonging, we are in danger of loosing our gusto, bravery, and courage to stand up for those who are oppressed. We need all the courage we can muster to speak for those who have no voice. Brown reminds us that “the root word of ‘courage’ is cor--- the Latin word for heart. . . Courage originally meant to speak one's mind by telling all one's heart” (Brown, 2013).

As social workers, we walk alongside people who often don’t have places of belonging.  Maybe they are living in poverty, marginalized, or discriminated against.  If we are to make a difference in one another’s lives, we must begin the "calling all of our hearts" to be brave and courageous.

Too much is at stake with our brothers and sisters who  live in poverty, have no health care, have no hope, have no food, and have no sense of belonging except for on the edges of society. Our neighbors will not find changes in their lives if we do not find strength in our own voices to advocate for their voices. Our well-beings are connected to their well-beings. Our hearts are connected to their hearts.

            Let’s turn our eyes to see those who do not have a sense of belonging. Can you visualize a world in which brave and unselfish hearts are so strong that they influence policy for all hearts?

Brown, B. (2013). Want to be happy? Stop trying to be perfect. CNN.com. Retrieved February 23, 2014 from: http://www.cnn.com/2010/LIVING/11/01/give.up.perfection/

Birdwhistell, M.A. (2014). We belong together. Calvary Baptist Church. Waco, Texas.

 

Fifty Years Later it is not Black and White

Warren K. Leffler, via The Library of Congress

     When reading Michiko Kakutani’s article in the New York Times (http://www.nytimes.com/2013/08/28/us/the-lasting-power-of-dr-kings-dream-speech.html) I was immediately thrown back in time to Alexandria, Louisiana circa 1960’s. I was in the 7th grade, walking to my locker, when I heard that Martin Luther King had been assassinated. The locker area in my junior high school was strangely silent. It was as if a hush had fallen over the usually noisy school hallways. There we were, 13 year olds hearing awful news as a group, yet I felt so alone, afraid and sad.

     I grew up in Alexandria, Louisiana. We had been “feeling” the unrest of the Vietnam War and racial tension for several years. At times it seemed the world was upside down. Our parents took us to church and taught us about a God of love. Our Sunday School teachers taught us about a Jesus that came to bring peace and equality to all humankind. The world we lived in did not feel peaceful or equal.

     Several issues were going on from my view of life. Older brothers and sons of our family’s friends were being drafted for war or leaving for Canada as conscientious objectors. Meetings were held at our house about both unthinkable options. People seemed to be trying to make sense of this war. At the same time, there were wars at home. The war on poverty, the war between races, and the war between generations were being stoked regularly. Dr. King was assassinated and the civil rights war was on our doorstep.

     At 13 we marched for peace, ate carrot soup in solidarity for Vietnam prisoners of war, stood in line for our Prisoners of War (POW) and  Missing in Action (MIA) bracelets, begged our parents to “stay out “ of the bussing issues, and dreamed of a world far different than the one we were observing and living. This new word “integration” entered our lives as more than a word. Integration was a living breathing life force. We heard our parents whispering and yelling around dinner tables about this thing called “ busing”. As budding teenagers, most of us had no idea what all the fuss was about. Our generation adopted a peace and love approach to life.

     My father grew up in Memphis, Tennessee. In the 1960’s, his family still lived in Memphis when Dr. King was assassinated. My dad had 2 cousins on the Memphis police force and both were actively involved in the intimate details of the death of Martin Luther King. My dad’s cousins helped investigate Dr. King’s assassination, kept peace on the streets of Memphis, and maintained the Marshall Law established in Memphis. The days following the assassination, I vividly remember my mom and dad waiting every night for calls from our Memphis family reporting about the chaos in Memphis. My grandfather, Dr. Ira Cole and my uncle, Dr. Howard Kolb, were both Baptist pastors in Memphis and had their own peace to keep in their congregations Memphis. I felt as if these events were unfolding in my own living room. It felt personal, close, and life changing for me at 13 years old.

     My dad, Dr. Jim Cole, a Baptist minister, was Editor of the Baptist state paper in Louisiana, The Baptist Message. Years before the Dr. Martin Luther King assassination, my dad was already an outspoken advocate for racial equality, much to the displeasure of many Baptists in Louisiana. My family received threatening phone calls and hate mail. I could not have been prouder of my dad for standing firm in his non-violent, peaceful, brave response. His courage instilled in me a value for humanity no matter race or culture. It was not what he said; it was what he did and how he stood firm in the face of a firestorm.

     Integration came to my junior high the same 7th grade year Dr. King was assassinated. My father explained to me what this odd word meant for us as a family and for the many families “on the other side “ of town. It affected everyone, not just us. He further explained to me how difficult it was going to be for our black brothers and sisters to be bussed across town to new schools . He painted me a word picture of students leaving behind life long friends and teachers to come to “our ” schools. This picture seemed unfair to me. Per my dad’s instructions, I was to be welcoming, accepting, and above all else kind, no matter what my other classmates said or did.

     Just as progress was being made in this strange new land of jerking kids up and out of neighborhood schools then driving them across town, a brave, wise man of peace was murdered. It made no sense to me. I remember weeping as I left school that day. I was not alone in my weeping.

     That was 1968. All these years later I remember exactly where I was standing in my integrated school and how my heart dropped to my knees when I heard the news. My first thought was how my black friends, who were being bussed to this ALL white school, were feeling. We all needed comfort. We all needed peace. We all needed equality. We all longed for faith and practice to be in harmony.    

     This past January 20, 2014, many Americans remember and celebrate the life of a man who demonstrated to us a non-violent resistance to social injustice. I had no idea then as a 13 year old girl what a social worker was. I just knew I would spend the rest of my life trying to live out what Dr. Martin Luther King and others began in this country. It became a mission in my life. My dad simply instructed me all those years ago, be kind, peaceful, and accepting with all God’s people. I hope I am holding true to those core values that both my dad and Dr. King taught me, “be kind, peaceful and accepting with all God’s people."