Rare Disease Awareness Day 2/29/16: Cryoglobulinemia and Me

This is a hard post for me to write. I don’t like to write about my health. Cyroglobulinemia has stolen a great deal of my life from me but I am determined not to allow it to become my identity. However, February 29th has been set aside as a day to remember those who suffer from rare diseases, in hopes of igniting understanding, research, and new treatments for those going through the ordeal of being subjected to a poorly understood or unknown disease. I’m not likely to ever meet another person in my community who is Cryoglobulinemic, my doctor has never treated anyone else with this disease and probably, never will. One of the most disconcerting things about my disease is the look on the faces of health workers when they ask me how to spell, Cryoglobulinemia and then explain it to them. In many ways, I have been forced to become my own physician and most often, I know more about Cryoglobulinemia than any doctor, nurse, or physician’s assistant that I go to for help.

Cryoglobulinemia is an autoimmune blood disorder. Cryoglobulinemia Type I is a primary disease, meaning it exists by itself for no known reason. Mixed Cryoglobulinemia, Types II and III is associated with other autoimmune disorders, some cancers, and most commonly, with Hepatitis C. I have Mixed Cryoglobulinemia associated with the Hepatitis C virus I carried for thirty-three years. I endured 40 weeks of a horrendous chemotherapy treatment and cleared the virus. My Cryoglobulinemia went into remission (I thought I was cured) but returned with a vengeance about three years later. I’ve been sick for over a year now but still remain hopeful that I’ll find a way to put it back into remission.

Cryoglobulins are part of everyone’s immune system but my body makes too many of them, they are deformed, and they don’t die and clear the blood-stream as they should. Instead, they clump together along the walls of my blood vessels, where white-cells attack them and cause inflammation in the blood vessel walls. The result is a type of Leukoclastic Vasculitis. When any part of my body falls below 98.6 degrees Fahrenheit, the cryoglobulins begin to gel and clot, which acts to further impede the blood flow already diminished by the vasculitis. The results are rashes called purpura, welts, hives, and bruising of the skin. Inflammation in connective tissue causes myalgias and joint pain. Nerves are affected and can be damaged in the long-term due to impeded blood flow. Nerve trunks may also, become inflamed. Though text books generally, limit Cryoglobulinemia to medium to small blood vessels, with the effects on skin and joints, there is no body system immune to the ravages of Cryoglobulinemia. It can cause organ damage and the most common death related directly to Cryoglobulinemia is kidney failure, when the kidneys become clogged with cryoglobulins and can no longer function. The reality for those of us with this disease is living with the complete unknown of what to suspect next because what is written in most text books is only observation, derived by those doctors monitoring their Cryoglobulinemic patients. As our disease progresses, their knowledge increases.

My life as a Cryoglobulinemic is ruled by temperature. If I am to survive and decrease my pain, I must stay warm. My ‘normal’ body temperature runs about one degree below what is considered normal for human beings so, I begin at a deficit. I start to feel uncomfortable at any temperature below 75 degrees. I don’t feel cold, I feel pain, and when the first pains began, I didn’t associate it with the temperature. If my core is warm but my arm is exposed and falls below body temperature, I first feel pain as tingling in my skin that deepens to an ache. If left exposed, I develop a rash, hives, or painful welts. These sometimes, pop open and bleed, leaving small ulcers. Welts and hives often leave iron deposits that leave permanent brown spots on my skin. I sometimes, develop painful nodules in clogged blood vessels that can pop and bleed under the skin, leaving small and large bruises. Sometimes, the bruises leave iron deposits too. My skin however, is the least troubling aspect of my being a Cryoglobulinemic. I have peripheral poly nerve damage in my hands and feet and because of impeded blood flow, I have had nerve pain in almost every area of my body. Pain in every form: itching, tingling, crawling, shooting, stabbing, throbbing, burning, jolting, blinding, deafening, don’t touch me, pain. The pain ebbs and flows with the amount of inflammation in my body. Some of the damage can heal between flares but sometimes, the damage is permanent. I have permanent numbness in my hands and feet. I have new numbness around my left eye as a result of this current flare. I also, have bouts of vertigo because of the effect of inflammation on the inner ear. These are my major complaints. There are many more. I ignore the ones I am able to ignore as I attempt to treat the symptoms that are more demanding and a bigger threat to my quality of life.

The most debilitating aspect of Cryoglobulinemia is how it isolates me. In the spring, summer, and early fall, I can go outdoors but I have to avoid public buildings with air conditioning. When the weather gets cold and if I’m careful, I can go from the house to a warmed car and public buildings with good heating systems. When the temperature drops below 55 degrees, it’s best if I stay home. When it drops below 40 degrees, it’s dangerous for me to leave my home. Breathing cold air robs me of valuable, core, body heat that takes time to replenish, causes the cryoglobulins to gel in my lungs, resulting in wheezing and coughing and robbing my entire system of needed oxygen. I feel weak for several days after an exposure to cold. Though my husband and family never complain, I’m sure my house feels stifling to them. Unable to socialize very often and being sick for over a decade now, leaves me with few friends and no way to make new friends. There was a flurry of attention when I was newly, diagnosed but people go on with their lives and a hard reality of a long illness is being forgotten. People don’t mean to. It is just part of it.

At this current moment, I’m taking Prednisone, which for me is a miracle that can’t last. It relieves the inflammation, my pain vanishes, I can see, hear, and the vertigo is still. I can’t take Prednisone as a long-term treatment. The main-stay, current treatment for Cryoglobulinemic Vasculitis is Retuxin. It is very expensive and administered through infusions in a clinical setting. Due to changes implemented through Obama-Doesn’t-Care, my access to good insurance is blocked, even though I must purchase health insurance or be fined. I pay a very high premium, for catastrophic insurance with a $5,000.00 deductible, with no set co-pays, and estimated coverage that fluctuates in cost to me, on a daily basis. I am not being penalized because I have a chronic disease; I am offered only, substandard insurance because my husband and I are self-employed. The only way I could obtain the kind of insurance I need would be to work for the government or a large corporation. By law, I am forced to participate in a system that regards me as a secondary kind of person, who must pay to help provide coverage for others that is denied to me. I am considering paying the fine and using the money I spend on monthly premiums to help pay for the medication I need even though, the idea seems crazy to me. I find myself in what seems an impossible situation and I have some tough decisions to make. In the meantime, the stress is causing my body to produce more cryoglobulins.

I am part of a good, online support group, where I can converse with others who suffer as I suffer. It helps, as our slogan states, to know “You are rare but not alone.” Not because I am made happy by others suffering as I suffer, or worse, but because of the validation that comes only, from those walking a similar path. I also, think of others who suffer from rare diseases unknown to me and even unknown to science, who are suffering and needing answers. I do have Cryoglogbulinemia to thank for giving me a great deal of time to spend alone with God and I don’t know how I would manage any of this without Jesus. I also, have my dear, devoted husband who does so much for me. I have my children, and grandchildren, and my closest friends. I have the dear people here on WordPress, who give me daily encouragement, kindly read my writings, and make me feel I am still in the world. I would rather be well and out doing things under my own steam but I am grateful to God and the kindness of others that enables me to endure and not give up hope. Because Jesus lives, my joy is indestructible.

If you want to know more about Cryoglobulinemia, or wish to donate to research, visit, Alliance For Cryoglobulinemia at http://allianceforcryo.org Please, on the rare leap-year day of February 29, 2016 take a moment to remember those suffering from a rare disease. Cryoglobulinemia is only one of many.

The Recluse (Part IV)

Part I: http://www.joyindestructible.com/2016/01/16/the-recluse/

Part II: http://www.joyindestructible.com/2016/01/23/the-recluse-part-ii/

Part III: http://www.joyindestructible.com/2016/01/30/the-recluse-part-iii/

The sound of pouring rain and a crash of thunder startle Estelle from the depths of a familiar, re-occurring dream. Haunted and chilled to the bone, she wraps herself in a blue afghan she picks up from a bedroom chair and tries to peer through the window to ascertain the mood of the day. Grey, thick clouds and pounding rain, that promise to remain for several hours, are a validation of Estelle’s grief. She welcomes the flood as she stands, face and hands pressed against the cold glass, tears streaming her face as the cascade of falling water washes the world outdoors. In this moment of commonality with the outside world, Estelle feels a slight waning of her constant isolation. Flash-backs of her dream pierce her waking consciousness in images, feelings, desires, and memories that she knows should be pieced together. She recognizes the need to solve her inner puzzle but recoils in the same instant, overwhelmed by the painful, enormity of it.

Estelle turns away from the window and as the lace curtains float back into their familiar place, she looks around this room she created in remembrance of her mother. It’s beautiful; full of expensive, precious things but leaves Estelle feeling utterly empty and abandoned. There is no pain like the pain of abandonment and no act more life-threatening to a child than to be abandoned by their mother. “But why do I feel this way? My mom was always present, my dad provided for all of my physical needs. I have no reason to feel this kind of despair but this is my over-riding emotional state. I am abandoned. Alone! Stuck! No one cares and I don’t know how to connect with anyone or make them care.” This room is where her familiar nightmare always began; in the heart of this house, dedicated to Emma, with secrets lurking to be avoided in every room.

Estelle falls into the embrace of a softly, upholstered, bedroom chair, wraps the afghan tighter, and squeezes a small pink cushion to her chest. Closing her eyes, she allows her mind to follow the path of her ‘house dream’. She leaves her mother’s room, heads down the hall, and in her mind turns to the right to enter her dad’s former room. The old door needs re-hanging and squeaks as it opens on a cubical sparsely filled with shabby furniture and no decorations. Everything in the room is either brown or a non-descript neutral that blends so invisibly that color isn’t considered by any beholding eye. Estelle is startled and a bit angered by this imagery. She knows she redid this room! How did it go back to its original state? With frustration, she moves across the hall and opens the door on her own room and finds it full of boxes, packed, but scattered in disarray. The bed is covered with cartons and Estelle can barely, make her way into the room. She manages to suck herself in and negotiate a path to the opposite wall and the window. As she pulls back a heavy, navy-blue curtain, she confronts something very strange. Her bedroom window opens into an entirely, alien, broken-down passageway that she feels compelled to enter.

As Estelle steps through the window, she is propelled by a force she doesn’t understand while making her way through fallen roof beams and shards of broken glass covering the floor. Suddenly, she reaches a white door that swings open on a secret house she knows but has also, forgotten. Relief washes over her as she arrives inside with the thought, “I am home.” She rushes to explore every room; some of them lavishly furnished, some very odd with useful purpose shrouded in mystery. At the end of her exploration lies the most befuddling detail of all; the house suddenly opens into a shopping mall, full of people, and Estelle finds herself as one of them. This is point when Estelle always, wakes up and if she ever traveled further in this old dream, she blacked the memory of it out.

Estelle emerges from within herself and looks again at her mother’s room, feels herself at the heart of her mother’s house, and matter-of-factly, re- accepts her isolated reality. Her tears have ceased and the rain has stopped; but thick clouds promise more rain later. She pats the pink pillow back into place, neatly folds the afghan, and smoothes the wrinkles from the Queen’s bed before going to take her shower. She turns back for a quick look before shutting the door, “Good-bye for now, Momma. Rest well.”

Feeling clean and refreshed, wrapped in a thick mint-green robe, and toweling her hair, Estelle steps inside her office. She really must get some work done, even if she has to stay up all night. She loves her job and is glad she is able to lose herself in designing online advertising. Her creativity is her only real connection with the outside world and she loves to think about how her ads touch the people who view them. Though the intent is to sell, Estelle regards her work as art. Her ad campaigns are a way for her to communicate who she is and contribute to the world. Safe behind her computer screen, the world and its masses of people seem manageable. She feels a surge of self-confidence as she sits down at her desk and prepares to dig in.

Remembering her dream again, Estelle looks around at her Dad’s old room, which she reclaimed as her office, with a re-assured chuckle. No brown or neutral left in here and no squeaky door. The walls sport light lavender paint, with dark, hard-wood floors, and furnishings in cream. Sheer, lime-green curtains lay softly over the window to peacefully, filter the sun-light. Everything in this room is tasteful, feminine, and beautiful. Estelle intentionally, placed her desk beside the window to enjoy the ambiance of green-filtered light as she works. This day’s thick clouds allow very little natural light so, Estelle flicks on her desk-lamp as she sinks into her comfortable office chair. As is her habit, she looks through her window to the outside world before settling in and with a start, notices those familiar, chocolate eyes watching her from the window next door. Those hungry eyes… like the bottoms of Hershey’s Kisses, lock with Estelle’s green eyes for an instant, and then quickly vanish with the precocious little girl who owns them.

Estelle is first perturbed at the feeling of invasion, and then finds herself laughing at Alisha’s guilty, child-like response. She pulls down the shade to block any further view, in resolute purpose, to lose herself and all painful thoughts in her work. Absorbed in abstract ideas of color and the psychological effect of words, the disturbing thoughts triggered by the previous day fade into the familiarity of a happy task. Caravana rubs her ankles and contentedly settles on his favorite stool nearby, curling and settling for a long nap. All is as it was before except for the sudden mental flashes of those big Hershey eyes and the nagging thought that there were more disturbances to come.

To be continued.

Barren Cold Reckoning

I stand in the middle of a cold barren high desert.

Winds of winter howling…

Alone it seems, as I straining hear the silence exert,

Power Divine! I’m cowling…

In the Presence of this Holy sound my ideas dessert!

All dreams flee with yowling!

Whimper, return to netherworld; must die or convert!

Ultimate Truth is de-fouling…

This barren land is a cold mirror of what I am; only dirt!

In me I see the evil prowling…

Condemned if I should choose to ignore this Holy alert,

Finality! Death’s wind howling…

If I decide to remain in my barren state and reality skirt,

Defy God and rise fist growling!

Winter icy desert isolation only a taste of my future hurt,

If I deserving of Holy scowling!

Remain in a desert turned hot to burn fools who pervert,

Ignore Holy Wind’s cowling!

 

 

 

 

 

The Recluse (Part III)

Part I http://wp.me/p6iXvK-dQ

Part II http://wp.me/p6iXvK-eh

On this beautiful, late June morning, Estelle is outside tending to the roses and Rhododendron before the humidity becomes unbearable. The rare treat of a clear, blue, Pennsylvania sky fills her with a sense of elation so intense that part of her interprets it as a premonition of something exciting on the way. Estelle dismisses this idea as quickly as it rises because she knows there can be nothing new in her hum- drum life. With intensity, she focuses on clipping withered blossoms from the Rhododendron hedge that forms the eastern boundary of her property. They are in full bloom, pink, white, and red; the favorite of the humming birds whirring around her garden. Caravana, her fluffy white cat, contentedly weaves himself in and out of her ankles as she works. The two are inseparable. A sudden breeze picks up, turning the leaves on the oak tree upside down, and Estelle takes note that it will rain later today. As she pushes to finish her work, she hears the door-bell ring, looks at her watch, and makes a mental inventory of any deliveries that might be coming on this new Tuesday. Nothing coming to mind, Estelle decides to ignore the bell, a bit irritated at the interruption from the outside world. Being alone is her normal state and any feelings of loneliness were buried deep, a long time ago.

“Hello? Is anyone home? I’m your new neighbor!” Startled, Estelle looks up and her eyes lock with two large, brown eyes peering over the top of her back gate. With no way to escape, she pulls herself together and politely asks, “Yes? May I help you?” Though she is very poised, Estelle is alarmed not only, by the uninvited intrusion but there is something in those eyes that she recognizes. Those eyes draw her like a magnet but at the same time frighten her to her very core. Then she chides herself, “It’s just a little girl!” Alisha determined to make meaningful contact doesn’t hesitate, “I made some Bisquochitos and I thought maybe we could try them together? I copied my mother’s recipe and Momma says that Bisquochitos should never be eaten alone.” Estelle is caught off guard by someone bringing her a gift and offering companionship, as well. What could this child be up to? “Well, thank you for the thought dear. What are Bis..quit…cheatas?” Alisha laughs, “They are Mexican sugar cookies and they’re very good with milk or hot tea! If you open the gate, I’ll show you!” Estelle hesitates and timidly lifts the latch, as the gate swings open she asks, “Are… you from Mexico?” “Oh, no!” Alisha giggles, “I was born in Virginia. My dad was stationed there. My parents are from Arizona but I grew up in Philadelphia. My dad works on computers and we moved here so he could start his own business. We moved in three weeks ago. Did you notice?” “Oh yes, I noticed.” Estelle answered, “Many neighbors have come and gone during the time I’ve lived here.” The implication is a show of strength meant as a defense. Estelle struggles to keep her walls up despite the very forward attempts on the part of Alisha to tear them down. “Oh, you’ve lived here a long time then? Do you have some milk or tea so we can try my cookies?” Not knowing quite how to turn this little girl aside, Estelle plays the role of hostess, from memories of long ago. “Yes, I have both but little girls should have milk, I’ll have tea.” By this statement, Estelle hoped to establish authority and retrieve control. “Come this way, sit here, and I’ll be back in a moment.” Alisha sat down at the patio table, disappointed that she didn’t make it all the way inside. Through the glass door, she couldn’t make out many details of the kitchen and before long, Estelle re-emerged with the beverages.

“Here you go. Hmmm…what did you say your name was?” Estelle asked. “Oh! I’m Alisha…Alisha Hernandez. My mom and dad are Maria and Tony. May I ask your name?” “I’m Mrs. Williams.” Estelle said firmly, hoping to stop further inquires and keep the relationship formal. “Do you like my Bisquochitos?” “Yes, they are quite tasty, dear and thank you. I thought all Mexican food was spicy but these have a delicate flavor. Thank you for bringing them over. Drink your milk up now. I appreciate your kindness but I’ve a great deal to accomplish today.” Alisha feeling that she is losing her opportunity fast, asks with the abruptness of a child, “Why don’t you have any family or friends?” The words pierce like sharp shards of broken glass shot into Estelle’s heart, “It isn’t appropriate, dear to ask such personal questions of a stranger. I think it is time for you to run along.” With gentile niceties, Estelle rushes Alisha back out the gate and out of her safe, quiet world.

Estelle looks up and marvels at how quickly the blue sky had turned gray. With storm clouds looming and the humidity intensifying, she turns to putting away her gardening tools, and then suddenly, misses Caravana. “Kitty, kitty! Handsome Caravana! Where are you?” Thinking he may have followed her into the kitchen, Estelle goes inside to look for him. The door bell rings, again! Still calling for her feline best friend, Estelle dutifully, answers the door and there stands Alisha, holding a purring Caravana. Not waiting for an invitation she knows by now, probably won’t come, Alisha pushes her way in. “He followed me out of the gate and I was back home before I noticed him. He likes me I think.” Alisha is stunned by the interior of this average home. Everything is up-to-date and perfect like in a magazine. Above the fire-place is a portrait of a woman who resembles Mrs. Williams but she realizes right away the painting isn’t of her neighbor. There were also, lots of photographs of the same woman, in frames, scattered here and there around the room. So many clues to take note of but they only added to the mystery of “The Lone Lady” and offered no answers. “Your house is beautiful! Who is that woman?” Estelle weary of the intrusion decides to ignore Alisha’s questions, “Thank you for bringing Caravana home. Have a good day.” She takes the cat from the girl and shoos her out the door, locking it behind her.

Holding Caravanna close, Estelle sits down, gently on the pale-blue velvet couch and admires the expensive decor. Walls the color of banana cream pie add warmth to the light blue draperies and furnishings, highlighted with silver and a hint of rose. The fabrics are rich and expensive; the rugs thick with soft luxury. She feels proud of the work she’s done here and as she looks up at her mother’s portrait, asks out loud, “Do you like it, Momma? I know it’s still a small house but do you like it this way? I did it for you, Momma. Now, do you love me? Is it good enough?” Caravana responds to Estelle’s deep longing, stirred by the unwanted interaction of the morning, and snuggles his nose into her neck. Comforted but still shaken, Estelle tries to decipher the feelings Alisha brought to the surface. Still waters run deep and she preferred to keep the waters still with the hurt and confusion resting at the bottom. What was it about those eyes? It was Alisha’s huge, chocolate-brown, child eyes that drew her irresistibly, toward her but also, filled her with dread. She looked up at the portrait again and understood. The little girl’s eyes held the same expression as her mother’s. A chill she couldn’t name passed over her as the weight of the void pressed down. Exhausted, Estelle made her way to the back of the house and sought refuge in the heart of this shrine. Her mother’s room speaks of royalty, frivolity, and fairytales. Estelle faithfully, places fresh pink roses in this room every day, and their scent permeates this secret haven. With Caravana, she lies down on the sacred bed and cries herself to sleep, not understanding who she is crying for.

Estelle’s dreams tell her the truth of her inner mysteries and reveal the reason for her isolation. A nightmare that is somehow also, comforting. Most of her dreams will fade and the reckoning taking place in them will be forgotten by morning. What will remain is only a clue to the truth that is the key to unlocking the door shut on her life.

(To be Continued)

The Recluse (Part II)

Read Part I here:https://joyindestructible.com/2016/01/16/the-recluse/

Alisha Hernandez isn’t sure whether she should be happy about moving to Greenwood. She wasn’t included in the decision even though she was the priority consideration. Alisha is twelve, on the cusp of adolescence. She vacillates almost, hourly between being a child and being a teenager, as she clings to what she knows and tests what is to come. Having lived only, in an apartment in Philadelphia, the idea of a house with a yard and a large bedroom all her own, excites her but her heart wavers on the unknowns. She misses her friends already and wonders if she’ll fit in here in suburban Pennsylvania. Alisha is tall, with long black hair, large chocolate brown eyes, with a glowing olive complexion. Though she bears the gawkiness of a twelve year old, the discerning eye can’t miss the hint of how beautiful she will be at sixteen. She doesn’t know how this frightens her father, keeps him awake at night, and is his main motivator for moving his family to what he calls “the safety of suburbia”. Alisha never felt unsafe in the city. Not understanding that her sense of safety has nothing to do with the city itself but instead, her parent’s love and vigilance, she questions her dad’s judgment. “Why is he so paranoid?” is the question she asks herself. In fact, she is beginning to question everything about her parents. As she gingerly tests adolescence, she is also, beginning to test everything she’s been told. At twelve, Alisha is embarking upon the process of deciphering the value of all she’s been taught and choosing what to adopt as her own. Though she longs for the security of childhood, the forces of nature drive her to demand she be regarded as an adult.

Anthony and Maria Hernandez are simple, hard working people of sincere faith, who adore their only daughter. They place her needs above everything and work hard to make sure she lacks for nothing. They can’t give her everything money can buy but they lavish her with attention and make sacrifices that enable them to give her more than most children of same monetary status. Unwittingly, they are raising a child of privilege in an environment of limited privilege. Their intent is to give their daughter opportunities beyond the limits of their own childhoods. They are gracious, giving people who don’t neglect to teach their daughter about the grace of God and the importance of serving others but they are so caught up in serving Alisha that they underestimate her need to serve and sacrifice. Alisha believes herself to have certain entitlements even though, her parents are lower middle-class. A new pattern is emerging in the Hernandez household as Alisha enters her teens; Alisha demands, her parents refuse, Alisha cries as if her heart is breaking, and her parents acquiesce.

Moving is expensive and a house in suburbia makes it necessary for Maria to work outside of the home. Finding a decent job so quickly is a God-send but she is uneasy about leaving Alisha home alone during the day. Alisha however, is quick to let her parents know that she isn’t a baby and demands this opportunity to prove her maturity. She overwhelms her parents with guilt about all the changes “forced” upon her and they relent. Maria comforts herself by thinking she will find activities to keep her daughter busy once the bills are caught up and in the mean-time, she will trust God. Alisha feels empowered by her victory but also, a little worried about being alone all day.

Welland Avenue is a much quieter street than Alisha is accustomed to. Used to the rhythm of traffic she finds it difficult to sleep so, she stays up late and sleeps late. She will never tell her parents but she is bored during the day and rising late makes the day seem shorter. As an escape, she takes up the habit of lounging on the rear deck and reading in the afternoons. Alisha enjoys reading mysteries and dreams of being a detective or even a FBI agent, in the future. It isn’t long before she notices her next door neighbor, who is also, one of the few people in this neighborhood home during the day. Alisha doesn’t know any of the gossip about Estelle but she loves a mystery and this quiet, solitary woman seems to embody mystery. Soon, Alisha is spending more time spying on her neighbor and acting out her books than reading them. At first, she watches her only, in the back yard but also, begins to catch glimpses of her through the windows. In her lonely hours she becomes obsessed with the lady next door who is always alone. She often observes “The Lone Lady”, as she has titled her, sitting at her desk and absent mindedly gazing out the window, while seeing nothing. “Why does she look so sad?” Alisha wonders, as she vows to find a way to introduce herself to this interesting woman and get to the bottom of the matter. Even though “the matter” is all her imagination built around a woman who does nothing extraneous.

Momma, have you noticed that lonely, lady next door? She doesn’t have a family or friends. She is just home all day every day.” Alisha is careful to broach the subject on a sympathetic note. “ No mi jita, I’ve been too busy to notice our neighbors. It’s sweet of you to notice, mi linda.” Maria’s heart swells with pride and she is completely, taken in. “I was thinking, Momma…maybe I could make some cookies and take them to her. The Bible says we should be kind to people who have no one. You and dad always, say so.” Alisha’s words are meant to manipulate but also, to test the validity of the faith her parents profess. “Yes honey, we are to give of ourselves to the widows and orphans but I don’t know our neighbor, or why she is all alone. I want you to be safe. You are my first priority mi jita. When I have more time, we’ll go together and take her some cookies.” Alisha is frustrated by this answer and quickly, pulls out her best gun; tears, “Momma! It’s not like I’m asking to go out with a boy or stay out late with friends you don’t know! I want to do a good deed for our neighbor, the way you and dad teach me! Don’t be a hypocrite Momma! Haven’t I been responsible while you are at work? Nothing will happen to me if I bake cookies and take them to a lonely lady next door!” Maria looks at her daughter, who has tears streaming down her cheeks, and relents. “Okay sweetheart, if it means that much to you. I’m proud of you mi jita.” Alisha is over-joyed by her victory, files the technique away for future reference, and then pats herself on the back for her altruistic nature, as she allows herself to enjoy the self-image she created to serve her purpose. Most importantly, she’d won. Tomorrow would be less boring than today because tomorrow, she would finally meet, “The Lone Lady”!

Alisha went to the kitchen to make a batch of bisquochitos while next door, Estelle sat dreaming and wistfully waiting for her long delay to end.

(To be Continued)

 

 

 

 

 

 

On the Day She Became an Old Woman

On the day Carol became an old woman, she shed several tears. Standing in the threshold of the last days of her life filled her with certain uncertainty. Though life is tenuous at any age, when old age comes everyone knows what comes next and there is no way to dodge death. This dreadful day came so suddenly yet also, gradually. Somehow, she didn’t think it would happen to her. Carol never could picture herself with grey hair and never accepted it. In fact she did everything in her power to remain young looking and deny the passing of time but on this day, reality couldn’t be denied. Would she live long enough for her hair to turn white or worse, fall out? Carol didn’t want to die but she didn’t want to be elderly either.

Carol gravitated toward the bed and overcome by this strange season in life, laid down and absent-mindedly, stared out the window, upward into the perfectly blue sky. It was early afternoon, she was tired and it felt good to lie down. She remembered when she never felt tired during the day and how hard she’d worked all of her life; all that was required of her to obtain this familiar, beloved place to relax and gaze at the sky, as she loved to do. Now, she had to think about letting it all go and down-sizing. Tears filled her eyes to the brim when she thought of the children and how far away they are now. She worked so hard at raising them, at doing for others, and now, that she is less capable of serving it seems she is mostly forgotten. Her life once noisy and full is now, quiet. Carol needs quiet at this age but misses companionship, camaraderie, and most of all, being needed. These days she and her husband had to focus on self-care and every day it became more time consuming. No matter the reason, a self-consumed life is a lonely life. She reminded herself to be grateful that she still had her husband and felt a bit of relief in the act of counting a blessing. Then she thought of the inevitable final good-by and the brimming tears over-flowed.

Sunshine streamed warmth through her bedroom window to relax Carol’s sore, stiff muscles and joints. She could see the very tops of the trees swaying in a gentle breeze, as she ebbed into a sorrowful sleep. Carol drifted into dreams and felt herself as she was inside, at the prime of life. It was a bright summer day in a special place. Towering mountains surrounded a valley with a lake in a green meadow. Just beyond the shore-line lay a beautiful forrest, with every kind of tree. The trees nearest the lake bore various fruits more luscious than any she’d ever seen or tasted. There was such peace in this place, a benign but powerful presence that quieted her every anxiety. Birds in free cacophony filled the air with the music of gratitude. Music so beautiful that Carol found herself also, singing. The lyrics flowed through her from the Presence and washed away every sorrow. Suddenly, she was aware of her husband standing beside her and taking her hand in his. Their eyes met in glowing smiles, they kissed, and then realized they weren’t alone. This beautiful place was filled with content, joyful people, all in the prime of life. It was evident there was no sickness here, no aging, no decay, and no death. “This is my home” was her final thought before she found herself awake.

Outside Carol’s window, the sun was fading in a peach and blue display and the tree tops were still. The atmosphere of her dream lingered in the feeling of that powerful Presence and she heard in her spirit; “Trust me Carol. You must let go of this world before you may enter this better place I allowed you to visit in your dreams. This isn’t the end but a new beginning, a revealing of eternity that is new to you now, but a reality that has always been. You belong to Me and everything you love and must let go of here, I will replace and multiply when you are finally home. Until then, continue to serve me. Reach out to others as you are able and point them to My Son. Though you must rest often now, give that time to prayer and meditation. I still have My purpose to work through you here. I won’t abandon you and I will see you safely, through every step of letting go. Then I will safely, see you home.” Carol’s tired, sad heart flooded with the surety only, a beloved child knows and an acceptance of her circumstance that comes only, by trust in the Divine. Refreshed and revitalized, her thoughts turned to Jim, and as she had done innumerable times before, she got up to cook his dinner. Grateful that Jim was still with her and required this of her but also, reassured that should he pass on before her, she would never be alone. Their best days were yet to come.

Three Sealed as One

My secret lover was Solitude,

How I longed for you!

Refuge from the multitude…

Time to think it through…

In your arms lay in gratitude;

My! How time flew!

Love greater than platitude,

Without you I am blue;

In silence of love interlude,

As my affections grew,

For you I developed aptitude,

I decided to marry you!

 

My abusive husband is Isolation,

Solitude’s darker side;

Imprisonment, lonely degradation,

Jealousy, lover’s pride!

Alone, l lay in arms of trepidation;

Afraid to step outside,

Of his barred door interpretation,

Within tiny cell I abide;

Bars made by fear’s imagination!

Terrorized, hellish ride!

Silence hurts ears, brings agitation,

Solitude sold me a lie!

 

It isn’t good for man to be all alone;

Neither for a woman;

In solitude, the voice of God intone;

Isolation, evil demon!

Banished! In right relationship sown;

A man and a woman;

Sealed as one, kneel at God’s throne,

Three-ply Helmsman!

What God puts together not blown,

Cannot be undone!

God remains, even if death is known;

God and I are one.

 

 

 

 

 

The Recluse

From the outside looking in, it is very difficult to understand why this woman who appears to be healthy and normal would choose to live in isolation. It doesn’t however, keep people in the neighborhood from trying to peek and ascertain why their neighbor is so strange. In fact she is the subject of not a few urban legends, tales the town’s children hear and love to repeat. Though everyone has forgotten her name, she bears many titles, “The Ghost”, “The Brown Recluse”, “Witch”, “The Vampire”, each depending on the childish story repeated to then, be expounded upon. Adults repeat tall tales of their own in stories that are gossip excused as knowing the “dangers” that exist in the neighborhood. As a result, parents warn their children to steer clear of “that strange woman’s house” and everyone keeps a vigilant eye on a quiet home where nothing ever happens. If they knew the truth about their neighbor who by simply being isolated adds drama to their hum-drum lives, they would most likely, shed tears and understand “the recluse” to be a fellow human being.

Estelle is a pretty, older woman who was once, a beauty. She has lived in this small house on Welland Avenue for her entire life. As an only child, she simply never moved away not because she was dependent upon her parents but after her father died it was natural for her to remain and care for her mother. Estelle is a very independent person but her mother was unable to survive on her own. In fact, Emma her mother, was forever a child in a woman’s body. As if she had no arms and legs of her own, she depended upon the legs and arms of others to meet her needs. Emma was a beautiful woman and as a young woman, lacked for nothing of material value because of her looks. Instead of learning to fend for herself, she became adept at manipulation especially, of men. It all backfired on her at the age of thirty-one, when her allure was beginning to fade and she found herself somehow, pregnant. Estelle’s father Joe, a simple man, became an easy target for Emma in her dire situation. It wasn’t difficult for her to con Joe into loving her and accepting full responsibility for her and another man’s baby. He wasn’t the kind of man that Emma admired (admiration was Emma’s only, definition of love) but he presented himself as handy and she grabbed him to preserve the image she liked to project of herself. Unlucky Estelle was the innocent baby born to this union formed to suit Emma’s need.

Emma’s lack proved to be bottomless over the years. Joe wasn’t capable of giving her what she wanted. His simple love, devotion, and faithful care weren’t enough. Emma hated their small house but never thought of getting a job to help Joe buy a bigger house. Instead, she nagged and grew bitter, drowning herself in herself and alcohol. “Estelle! Listen to me schweetheart…don’t saddle yourself with a wimp like your dad. Marrying him ruined my life! I deserve so much more than this! You find yourself a real man with the means to provide, the way a man is supposed to provide for his woman!” Even though it was Estelle’s dad that gave her genuine love, discipline, and kept a roof over her head, there was something about Emma that required worship and Estelle worshiped her mom. She also, adopted the view of her father that her mom so often promoted. In fact Estelle doted on her mother, tended to her when she had too much to drink, listened to her complaints, and tried with everything in her, to please her mother. She wanted so badly, to earn her mother’s love but love was outside of Emma’s ability to give. In fact, nothing about Emma was real. She existed as a clawing empty shell projecting many false images designed to please and manipulate in a false hope of filling her insatiable desires. Estelle, the dutiful daughter, learned to reflect admiration for each and every one of those personas. In fact, she looked up to her mother’s pretense as an amazing ability to convey wholeness to others when in fact, her life was in shambles. Estelle felt that she was lacking in her inability to hide her true feelings. She knew her straight forward nature upset her mother and since she admired her mother so greatly, she also, learned to despise herself for being so different from her mother. Estelle’s self esteem revolved around filling her mother’s bottomless inner void, in hopes of earning her approval.

Estelle was in college when Joe suddenly, died of a heart attack. He was a hard worker who gave little thought to himself and his small family also, paid little attention to him. Perhaps, if he’d been more proactive about his health he wouldn’t have died at age 55 but his life’s reward was apparently, not on this earth but in Heaven. Joe was such a good man that to most people, he was invisible. Emma was furious when she received word of her husband’s death. How could he? “What in God’s Name am I supposed to do now?” were the first words out of her mouth. The second sentence, “Once a worm always a no good worm, I knew he’d pull something like this on me!” It was Joe’s death that made Estelle aware of what he’d meant in her life and now, she felt the full weight of the responsibility he had carried for her mother shift onto her shoulders. Suddenly, she knew her father may have had his weaknesses but he was never a wimp. “Don’t worry, Mamma. I’m here. I’ll quit school and I’ll take care of you.” She pulled her mother close to comfort her and they shed tears together. Estelle cried for the loss of her dad and Emma cried for herself.

Estelle cared for her mother with same kind of devotion that a good mother has for her child. It wasn’t so much that they reversed roles rather, Estelle grew into the role of mother, as Emma remained forever, a child. Over the years, there were men interested in Estelle. She was beautiful with dark hair, green eyes, white skin, and a long slender physique. Though quiet and shy, her personality was sweet and she was very intelligent. However, her mother couldn’t abide her daughter deserting her for any man and Estelle wasn’t capable of standing up to her mother. In fact, her whole life was about her mother and making sure her mother had the things she needed and wanted. She really didn’t have time for a life of her own. The thought of leaving her mother with strangers made her feel so guilty. She just couldn’t do that and soon she learned how to erect walls to keep men from even daring to look her way. Her girlfriends did marry and had families. Slowly, they faded from Estelle’s life, as she lost all commonality with her peers. As Emma aged, she became more demanding and staged great, draining dramas if she didn’t get enough attention. Estelle lost herself in work and in caring for the mother she doted on. Even though her mother never truly, loved her in return.

When Emma passed (due to liver damage as the result of her alcoholism) the empty hole at the core of her being didn’t die. It simply, transferred itself to haunt Estelle. Having lived for her mother instead, of developing a life of her own, left Estelle with nothing but the void she inherited. It was all she had left and sadly, it was so familiar that she surrendered herself to it. She became one with it as she withdrew entirely, from the world around her. She began working at home through her computer and the only, people she had contact with were those acquaintances who provided necessary services. This is the truth about Estelle, the recluse; a tale more sinister than any urban legend, the story of a woman who lived for another and never developed a life of her own.

Now, Estelle lives in isolation and waits, with no clue as to what or who she is waiting for.

(To be continued.)

Hope for a Little Girl in the Dark

Caste into the outer darkness by the forces of illness and neglect, a child grows in the absence of the comfort and nurture that ensures a child’s becoming whole. Suspended in isolation with nothing but childish, undeveloped thoughts and the voices from the outer-world (of the family) to keep her company, Ester gives into sleep. In her dreams the door to freedom opens and allows her to escape the loneliness of her dusky room. If it were not for sleep and dreams, the vacuum would consume her and she would evaporate to nothing. However, the benevolence that surrounds Ester, the presence she can feel but not name, enters her dreams and speaks the loving words she so desperately needs to hear. Ester has a destiny greater than the one assigned to her by poor health and negligent parents.

Floating in the void of aloneness, Ester knows nothing different and is unaware of the threat to her existence. The void wants to swallow her whole before the world knows of her but Ester has a gift; the ability to fight the void by the power of imagination. The presence never leaves her and though the isolation she endures would destroy most adults, Ester never feels lonely. The warmth of divine love surrounds her and keeps her alive in her dimly-lit room and fills her dreams with joyful images, experiences, and even a sense of self. In the world of flesh and blood, Ester is small and weak. However, in the world of her benevolently guided dreams, Ester is very strong.

In this gloomy room, Ester will face death and win. Even though she’s been in bed for many months and her legs are too weak to support her, she will learn to walk again. She will leave this room one day and enter the real world because the One who loves her has predestined it so. Though Ester will embrace the void for a short period of time, in a wrong-headed effort to subdue and overcome it, the void won’t be able to destroy her. Instead, the emptiness she will for a time internalize will make greater room for the filling of the Spirit of God, who hovers around her, limiting evil and working all to ultimate good. Though Ester has no definition now, of either the loving presence or the void, she knows each as her constant often, only companions. Though she is nothing in the world, even valued little by her parents, God will be glorified through her. Her life, her very existence will be a testimony of Jesus; when she lets go of the void and knowingly invites Him in. Though the world views Ester as having no identifiable purpose, as only a sick little girl wanted by no one, God has predestined His purpose for her in Christ and her purpose will be completed. The void will be filled by the divine light that is Jesus and Ester will know the outer darkness no more.

Sunshine on a Winter Day

I am so grateful that the sun still shines in winter.

Thankful for these warming rays brightly streaming,

Through my window, mercifully sent by my dear Father!

Warmth to comfort my body, lift my spirit; to liven my soul;

Lifting all thoughts to joy, allowing them to float on the waters,

Of sickness and sorrow; thereby abating my sadness and suffering;

Snugly wrapping me in loving security; and embrace me in His presence;

It is brutal! Outside it’s cold! A threat to my existence but here in my window

I sit, enjoying the heat of summer; kept safe from vile enemies that long to take

Me down to smother me in agony; in hopes of crushing my spirit, destroying my body!

But my soul, my enemy can’t touch, it belongs to the One who limits my enemy’s strength;

Daddy! He cherishes, protects His child; Surrounding me with bright sunshine on a winter day!