An Amendment to the Stages of Grief

With Perry on my left, I swept grass in a manner to find a steaming pile of dung.  With a baggie on my right hand, I discover the offending mound.  I reached back into a pouch in Perry’s guide dog harness to get a second baggie due to the amount that could not be contained in just one baggie.  I wiped with a third bag; however, the planned biohazard purge had been removed completely.  I laid the bags next to my right foot and I strap Perry’s harness around him. With a spring to my step and two bags ‘o stink in my right hand, we headed off to the dumpster.  My unspoken acknowledgement brought the largest smile to my face as I thought, “I am the luckiest guy!”

 

I am certain that when I lost my sight entirely in 2011, I had no concept of what the Acceptance Stage would bring me.  I imagined it would be like being forced to deal with a punishment undeserved and overly punitive.  There would be zero chance of regaining my sight   no matter how long I cried or protested.  My sight was gone, “So, now what am I going to do?”

 

Oh, I definitely pouted and was righteously frustrated.  I was morning the loss of the life I thought I would have as a sighted person.  I grieved of the simple things like the use of a microwave.  Modern devices have no physical dials.  Current trends have created flat surfaces with no distinguishing characteristics.  How would I drown my sorrows in a fresh bag of microwaved popcorn since I cannot see the buttons to press?

 

It felt like I was tethered by my blindness.  I would take one-step forward and fall two steps back.  Mentally sharp, life seemed to imprison me with physical obstacles.

 

I knew I wanted to do more than piddle around the house.  Sure, I could fold the laundry and wash the dishes.  I barely ventured out the front door.  If Jennifer wanted to go to the store, I sat in the car while she shopped.  We had made attempts to shop together.  She would pull the shopping cart as I hung onto the back.  The sensation was reminiscent of something done with a child.  I followed Jennifer by hanging onto her arm or resting my hand between her shoulders.  It may have looked natural, but I often stepped on her feet and we struggled to find a speed we could travel in synchronicity.  My thoughts would wander.  I tried to envision how people saw and thought of me.  I found myself lost in fear and physically let go of Jennifer.  She would be fifty feet in a different direction.  I stood in the middle of the aisle.  I may have known where I was in the store but, in stark contrast, I was lost in life.

 

I knew I would not find courage stuck inside my castle walls; yet, I needed to find the will to battle the depression that waged a war on my soul.  With no shame or hesitation I state for the record that I went to a counselor to begin the healing process.

 

Actually, I went to two separate counselors.  The first counselor spoke in bumper stickers.  “Chad, you know that when the going gets tough…”  The counselor waited for me to finish the saying.  90% of the time, the counselor did the talking during the fifty-minute session.  I never felt like I was heard.  I knew this individual had no wisdom that could be shared beyond the poster of the cat clinging onto the tree branch, “Hang in There!”

 

The second counselor listened.  Each session fortified the emotional walls that would shelter me from the well-intentioned questions, statements, and prejudice from the general public.  With the strength to climb out of the protective environment, I navigated to the mailbox, around unfamiliar settings, and grew more comfortable with the use of my cane.

 

My first cane was a collapsible, customized black cane like the one used by Al Pacino in the movie Scent Of A Woman.  With no clue what I was doing, other than sliding a cane in front of me, the cane served little purpose.  The general public tended to knock into the cane or me due to the lack of realization I could not see.  The cane was thin enough to hide in the pocket of my pants; moreover, the lack of strength of the cane provided little feedback to me in order to know how to negotiate the environment.  Each subsequent cane adapted to my growing skills.  The roller tip allowed the cane to smoothly slide back and forth.  The ultimate in feedback, the roller tip began to slow me down like a set of training wheels on a child’s first bicycle.  The time had come to control the cane without the use of a roller tip.  By the time I had graduated to the fourth type of cane, I negotiated downtown Fort Worth with the guidance of a trained Orientation & Mobility instructor.   The final exam entailed being dropped off at a corner, given the cross streets, the direction I faced, and where I had to meet the instructor twenty blocks away.

 

I grew in my ability to get around new environments but the next frontier proved to be more of a challenge.  Technology advances at such an accelerated rate that even the experts are overwhelmed.  The first generation of iPads had been out for a bit.  I heard stories about the accessible modifications that could allow me to use an iPad.  I did not know of anyone who could instruct me how to use the VoiceOver commands.  Much like my first cane, huge mistakes were made, lessons learned, and my abilities increased beyond my own expectations.

 

The cane and iPad opened new worlds to explore to reconnect to my past.  All be it awkward, I could function in the physical and cyber environments with success.

 

The whim to advance to a guide dog  paralleled my experiences with the use of a cane and technology.  With a cursory understanding of what was to be expected from the freedom that comes along from a service animal, I would stumble and fumble especially at the initial phases.  The guide dog school cannot prepare a person for every possible scenario.  Imagine my surprise when Perry dove from left to right in a busy room.  Unbeknownst to me, a hundred people who were blind had been given popcorn and stray kernels coated the floor.  The simplest strategy was to back up and remove myself from the situation.  It was a powerful lesson to learn that some obstacles are best dealt with a thoughtful retreat in order to reassess plans to move forward.

 

Perry & I do our best to walk a 5k daily in our neighborhood.  It seems the environment changes every day with blocked sidewalks with varying obstacles, driveways obstructed by vehicles, and loose dogs that charge us.  Each day is a new adventure with challenges to get it right.  Life is unpredictable.  I can choose to remain indoors and thus protected from the obstacles and potential threats that await us on the next corner.  If I have a choice, I would rather face uncertainty and grow from the experience instead of the stagnation that results from inactivity.

 

I am more active than I have ever been in my life.  I have never consistently worked out as I have with the addition of Perry.  As my sight was taken from me, I have been given so many opportunities that would have never come about had I remained sighted.  I explored Italy, Greece, and Egypt with the use of smells, sounds, and tactile cues.  I felt how quickly the sun sets on the Nile River in the Sahara Desert in Egypt.  Jennifer described the colors and shapes.  My skin from my head to my toes sensed the rays of Amun Ra disappear from the sky.  I knew the exact moment the desert devoured the sun’s rays of light.

 

My lack of sight provides an opportunity to sense the world from a differing perspective.  Most people may not know how daunting a crowded room can be without the ability to see; however, I can appreciate the warmth and sincerity of a person’s voice that vision could bias.

 

The first morning I had to learn how to pick up Perry’s solid waste made me question what I had signed up for as a guide dog user.  At times, I was humiliated by someone’s observations of the process of turd location and extraction.  Worries surrounded others perception of standing in grass while Perry tugged and spun in circles.  Mixed in was the concern how long “park” time may take for Perry to find the perfect spot to soil.

 

Now, I am grateful.  Yes, I am grateful that I have the ability and skills to fully take care of a guide dog and embrace life’s adventure with Perry.  I do not hurry him as the time gives me a break from the hustle of the day.  I “get” to leave the desk.  I “get” to leave the building.  I “get” to put my full trust in a four-legged animal.  I “get” to put a baggie on my hand and pick up fresh poop.

 

Only a select few know what life delivers with no sight.  According to a theory in Psychology, humans grieve in stages.  “Shock/Denial” tend to be the first phase.  “Anger” follows up next.  If the anger is not addressed, the emotions are directed inward towards the self and develop into “Depression”.  “Bargaining” is a Stage of Grief that can take the person back to the other stages by exploring the possibilities.  “If I had only…”, “Perhaps this would not have happened had…”, and a multitude of bargaining questions a person has to process to the final stage of “Acceptance”.

 

These stages may be familiar to someone who has lost a loved one.  “Acceptance” can be a bitter pill to swallow.  Acceptance can, also, be fully embraced.  The memory remains as the pain fades with time and effort to heal.

 

I am proud to announce my proposal to amend Elizabeth Kubler Ross’ Stages of Grief with the addition of “Gratitude”.  Beyond the pain and loss becomes a reflection that life is better now.  The devastation of losing a loved one can create a wound that goes clear to the bone.  The resulting healing can make the person stronger as they have learned to adapt and compensate for the loss.  The path that lies ahead will be different from that point of loss but the journey forward can bring a wealth of experiences that were not on the original path.  The awareness to fully appreciate life’s gifts may result from the death of a loved one.  A person may, now, be more appreciative for the time they do have with the loved ones still alive.  The “little” things may become more significant; alas, a well of gratitude may be unearthed.

 

I do not know where life will take me.  Every step forward brings adventure.  Yes, I may curse the setbacks that are infused with the life of a person who is blind.  I will celebrate the richness of spirit and the depth of emotion I “get” to feel as a person who is blind.  Beyond “Acceptance” is gratitude.  I am a better person because the loss of my sight.

 

I am grateful to be blind.  I am so thankful to “get” to rediscover the world.  While I do wish the others around me did not have to bare the burden of dealing with my blindness, I hope they can appreciate and benefit from the person I am now.  The journey to surpass acceptance to find gratitude only makes me stronger.

A Response to Silence

Most people are uncomfortable with silence.  A nervous speaker will usually plug any open space with “um”, “ah”, you know” and an assortment of fillers that lose an audience’s attention.

Silence is captivating.  In music, it can draw stark contrast to the harmonious chorus of voices repetitively proclaiming “Hallelujah!  In comparison, the modern philosopher Samuel Hagar declared, “Silence speaks as loud as war.””  Silence from one’s partner can be soul crushing.
I recently presented in front of a group of highly influential leaders.  As a person who is blind, I have two choices.  Learn braille or memorize what I need to cover.  I sat at a large table full of human service professionals as I laid out details.  Not the type of presentation where I could insert a joke to ensure the message was heard, I stumbled mentally on a transition.  The absence of any sound accentuated by an inability to recount where I needed to be in the presentation.  Silence rolled in like a Scottish fog.  The sounds of my heart beat pounded my ear drums.  I scanned my head from side to side, summarized the facts, recalled my transition point, and completed the case.  Without the visual assurance, the stillness seemed to permeate the room.
After the meeting, someone told me they thought the pregnant pause, that made me feel insecure, was perceived to be planned in order to give time for the group to be caught up with their note taking.  My body language of looking in the direction of the group lent credence to their perception.  In actuality, the punctuated maneuver  was a stalling technique.
I am reminded of a workplace that responded to a supervisor’s intimidation by no action whatsoever.  The lack of anyone’s objection gave the supervisor more power to go forward unrestricted.  Silence signaled a collective  acceptance.
All too often, issues are swept “under the rug” or unspoken.  It is the silence that enables the continuation of the perpetual cycle of violence, dependency, or dysfunction.  Silence is rarely a preferred answer.  Wouldn’t we all, at the very least, wish to hear a “no” than a lack of any response at all?
I have walked away from friendships and, even, a church.  My only response was silence.
I knew exactly what I wanted to say but I couldn’t find the time or how to begin the conversation.  It was easier to say nothing and walk away.  I feared being consumed by the passion from my point of view.  I, also, sought to avoid what I perceived as potentially an argument.
Truth is I am not sure if I cared enough or too much.  Were these moments worthy of my opinion?  Was my choice to hold my tongue assertive or passive aggressive?  The combination of silence and time nurtures a cyclical, toxic  coping mechanism.  The conscious mind moves forward while the spirit never forgets the unresolved feelings.
I wish I could confirm that I always have the correct words at exactly the right time.  In the awkward silence I discover that my heart fills with regret and my thoughts swirl like a tornado.  I loosen up my body language and exaggerate my facial expressions to portray relaxation and inner peace.  Nothing could be further from the reality.   The inner turmoil swelling within my skin.  Each bead of sweat shows a crack in the dam holding back the emotions.  At any moment, a flood or rage and confusion could rupture my soul.  “Keep it together,” really means send the pain below.  Each lump in the throat swallowed to keep down the surge of emotion.
I committed to the silence.  It would almost be a faux pas to bring it up  since so much time has lapsed.  Maybe they have gotten over it and I should, too.
Complicating the complexity is the realization that this avoidance tango is not a solo dance.  The other person is a “silent” partner.  They could just as easily tar down the Cold War walls that have been built up.  Each brick baked in frustration, insecurity, and a deep longing to avoid confrontation.   Cemented together, the bricks sealed upon the one mutually agreed  condition: not to acknowledge the problem.
For five years, 20 professionals remained resolute and unflinching at the provocations of a bully.  Everyone’s refusal to speak up reenforced inaction.  These are the same individuals who would take a bullet for any of the people served; yet no one stood up to the abuse within the organization.  Sadly, I was one of them.  Afraid to be the only one to step forward and say the Emperor has no clothes.  Each time, it became easier to sweep our frustration under the rug and pretend nothing happened.  The expectation to continue the silence spread to each new colleague and normalize the dysfunction.
One of my favorite songs has the lyrics, “finding the words is as hard as finding the time.”
I can’t reframe the past and say what I did was correct.  I can say that I am, now, more aware of the indicators.  I am committed to becoming a stronger person and effective professional.
While silence can send a message that can be heard, there is another option.  The use of our words is more thunderous and powerful than the choice to remain quiet.  The process to find and use my voice only makes me stronger.

Women of Hope

Guest blog by Miss Cozette Clark

 

Meet Joy and Norah, two ladies from the Women of Hope Group. On Saturday, I went to both of these ladies homes to meet their families and learn their stories. The sun was burning down as I gathered my notebook and camera, possibly a writer’s most essential items, and put them in my enormous purse. My dad called a boda-boda (motorcycle taxi) and I took off down the dusty road with the wind in my hair and Lake Victoria as blue as the sky. I was a little nervous at first, what if I don’t get enough of their story? What if I ask something too personal? I’m always a little scared of doing something wrong in the culture. And trust me, I have many stories where I’ve made a total fool of myself. Thankfully, the Ugandans are always very forgiving and sometimes chuckle with me.

 

We zoomed through Kakira, a village that’s a 20 minute walk from our house. We passed street vendors selling clothes, shoes and cheap watches. The air smelled of fried rollexs (scrambled eggs rolled in a chapatti, which is like a thick tortilla), fruit, burning garbage and sugarcane. The anxiety had subsided, I knew where I was. After a year, Uganda was finally starting to feel like home.

 

Photo 1

 

When I rode up to Joy’s home/pharmacy, her four year old daughter, Vicki was playing outside with her friends. When they saw me, they started shouting, “Mzungu! Mzungu!” meaning “white person.” Joy came out to greet me then we walked to her house together. Her house is tiny with only one room. It’s crammed with a bed in the corner, a tall wooden shelf which works as a pharmacy with a few piles of pill bottles and boxes. She directs me to sit on the coffee table and she sits on the floor. If the situation was different, I would sit on the floor because I’m younger but I’ve learned that they have certain manners that we don’t. Guests are always favored above all else, no matter what. They will give their last and their best in a heartbeat. If you don’t accept what they’re offering, even if you feel bad about taking it, you are insulting them. So we sat down and started talking about her life.

 

We started out with the simple questions. She is 35 years old, she likes the color white and her favorite food is rice. As a child, Joy wanted to be a nurse but couldn’t pay for the school. But she did her best though and opened her pharmacy two years ago. She makes under a dollar a day from her pharmacy and is always on the search for other small jobs to support her daughter. I asked her what was the hardest thing she’s ever done, she laughed and said, “Answering these questions!” Then she became very solemn and told me her story. One year ago, Joy was afraid she’d hit rock bottom of her poverty. Debts piled up, the landlord threatened to throw her out and the bank might’ve arrested her. She frantically thought of options, the easiest would be to leave her home and go back to live with her mother. But instead she prayed. As we were talking, she said with tears in her eyes, “I asked God to let me die, I was so afraid. But then God created a way I didn’t expect.”

 

A little while later, Ms. Stephanie came knocking on her door. Stephanie was the leader of the Women of Hope at the time and my Mom’s predecessor and friend. Stephanie explained why it was so important to trust in God, He will always provide for us. Being in the Women of Hope has helped her tremendously, not just in her finanical state but also emotionally. She’s made good friends and learned so much about the Lord and about loving one another. From her poverty, she has grown high hopes for her future as well as her daughter’s. Joy aspires for a “booming business”, as she says, to own her home and to put Vicki in school to be a doctor. That is already her nickname, Dr. Vicki. Joy also wants to buy proper chairs, anything’s better than just a coffee table.

Photo 2

 

 

We walked together to the boda boda station near the sugar factory. As we were walking in the sun along the dirt road, Joy was telling me how she was going to take Vicki to get immunizations for measles. I was so glad that this sweet little girl had a mother who loved her. Then I was back on a boda, zipping through the African village. I thought about the things Joy had said, the little money that she lived on and how every shilling went to her business or her daughter. It would have been so easy for her to give up, but if she had, would I have even known her story at all? We never know what would have been if we took a different path. I’m inspired by her faith in the Lord and I have hope for her and her family.

 

It took a few tries to find Norah’s house and turning a boda around on a dirt path is not easy. Finally we found it with some help from a man whom I later found out was Norah’s husband. When I walked down through the jungle to her house, she wasn’t expecting me but wasn’t going to turn down a guest. She was with two of her six kids. Her children’s ages range from 22 down to 5. I was able to meet the 17 year old Fiona and the five year old Hope. We sat outside for awhile under the avocado tree. Norah has many fruit trees and lots of land but doesn’t have the strength or the help to sell her fruits and vegetables, and they barely have enough to eat. When we went inside, I was instructed to sit on the “sofa”, a moth-eaten cushion on a wooden church pew. Joy’s house and Norah’s house could not be any more different. Joy lives in a dusty village whereas Norah lives in a four room house in the jungle. There were posters on the wall for the upcoming election and a tattered rug serving as an entry way. Hope kneeled at my feet and greeted me in Luganda, “Oli oyta?” (how are you?). I smiled and replied, “Bulunji, ategwe?”(good, and you?) That always makes the children giggle because they don’t expect me to know their language. This always confuses me because they started it in Luganda, what do they assume I’ll answer? I suppose I’ll never know because they always run away when I ask.

 

Norah thought the simple questions were very funny. It occurred to me that they have never taken a personality test so questions like, “What’s your favorite food?” are reserved for children. With much persuading from Fiona, Norah revealed that she is 41, her favorite color is yellow, and her favorite food is matoke (a cross between a potato and a banana).Norah has been in Women of Hope for nine years and it’s been like family to her. When she was a child, her family life was challenging. Her father died when she was twelve and it left her devastated. She was very close to her father, Norah laughed while explaining a game her siblings used to play with him. They would try and sneak food off of his plate until he would laugh and give up, giving them the rest. When he died, it was like she died too. She didn’t really understand, she kept expecting him to come home. But he never did. Norah was sent to live with her aunt since her mother could no longer support her. However, her aunt didn’t want Norah so she lived the life of a servant. Housework and working for school fees, this left little time for studying so she failed many subjects. Often the only hope she had was her cousin who comforted her. For a long time she resented her aunt for all the things she had done, but then Norah started going to Women of Hope.

 

Photo 4

 

She had always gone to church but she didn’t know much about God’s heart. Because the group counseled her and prayed for her, she grew stronger in the Lord. She trusts that He will prolong her life and the lives of her children. She desperately needs income, but she has enough land to have a hive and is interested in beekeeping. Then it was time for me to go home. Fiona guided me through the jungle to my house and I said goodbye.

 

I asked both of the women, “If a mzungu asked for advice, what would you say?” Their answers were rather similar: trust God and live in Christ. I think it’s so amazing how they trust God with what little things they have. In the end, they’re both just mothers believing in God for a better future. How much more can we have faith in God with electricity in our homes, food on the table and water in the pipes? These women are so special to me, and I hope you’ll come alongside us.

 

Beekeeping is the perfect job for these women because it doesn’t require a lot of strength, isn’t expensive, and gives great rewards. By donating, you’d be helping Joy and Norah and women like them earn money for their families. Right now, Beeing Hopeful needs a honey press, jars, containers, and additives for skin creams and lip balms. $40 can buy a honey strainer, $20 can buy glass mixing bowls, $10 can buy cream containers and $5 can buy tea tree essential oil. Thank you for your prayers and financial support!

www.beeinghopeful.com