Bureaucracy Blues

Bureaucracy Blues
Dorcas Annette Walker

I finally got the official letter from the judge I had been waiting for six months. It was supposed to have arrived in six weeks. I carefully opened up the envelope knowing it contained either hope or despair. The words jumped out off the page at me. I had been denied disability. I tried to concentrate reading through three pages of explanation why I had been denied. Stunned I sat in my recliner as tears ran down my face. Almost four years have passed since I first applied. Anger at all the humiliation I have endured just to get to this point overwhelmed me. My faith in democracy and governmental fairness bottomed out.

It was a stressful step for me to finally acknowledge that my body wasn’t going to return to normalcy any time soon where I would be able to work. Every day I kept hoping, thinking that surely I’d be better the next day or the next week. But reality finally stared me the face. No matter how hard I struggle, most days I can’t get dressed or do simple household chores. My husband had to resign his pastorate due to my health and scramble around to find work for us to live on in our remote area of the Tennessee Mountains. As bills began piling up I realized I needed to see about getting medical coverage. Thus began my personal education with governmental bureaucracy.

I was informed at the local office in order to be eligible for any medical help I had to be single, pregnant, have under-age children at home, be a senior citizen, or declared disabled. I’ve been married almost thirty years so I wasn’t planning to divorce my husband. Being a grandmother with adult children I didn’t consider pregnancy an option either. And even though my body feels like I am in the senior citizen bracket my age doesn’t match so the only option left open for me was to apply for disability. I was sent several papers to fill out and had to send in proof that I existed, was an American citizen, and that I had no oil wells or off shore accounts in my name. I also signed several medical release forms and had my local doctor fill out a form saying that I was disabled. I was informed I’d hear back within thirty days. After six months I received a letter telling me that the state needed their doctor to evaluate me and was given a date and told if I didn’t show up I’d automatically be dropped. This involved traveling an hour away. I fervently prayed that I would have the strength to get dressed that day and popped extra pain pills as any traveling increases my pain.

Now I’m the kind of person who has spent my life hiding any signs of sickness or discomfort especially when I am out in public. As a minister’s wife I’ve learned to keep smiling no matter how I feel. To me it was embarrassing enough that I limped and had to concentrate to keep my balance. In a spirit of independence I had put away my walker. The state doctor told me (off the record) to put off having any surgery on my foot during my evaluation and I was informed I‘d hear back within thirty days. Three months later I received an official letter in the mail telling me that I had been denied. Even though it was obvious that I couldn’t do any hard manual labor they felt that I could do sedentary work.

I tried to figure out how I could work part time when I didn’t know from one day to the next if I was going to be able to get out of bed. I appealed and was told that my case was sent to Knoxville where it might be nine months until my case came up before a judge. Nine months later I found out that my case was still hung up as the court was two years behind on disability cases. After hearing from several sources that the only way to get a favorable decision was to have a lawyer represent me, I contacted our local lawyer’s office. An appointment was made to being paperwork. It was quite embarrassing to admit to our lawyer and staff how finically desperate we were. I had become an expert over the years at stretching our limited resources and hiding any signs of poverty. Even though they were kind and tactful, I still broke down under the stress of embarrassment wishing desperately that I could just forget about trying to get disability and be able to work.

I had been raised with the motto that hard work never hurt anybody and if a person didn’t work they shouldn’t eat never dreaming that I would get to the place where I would have to ask for government assistance. I always enjoyed the satisfaction of doing work whether it was physical or mental and living a very active lifestyle. Now suddenly I was struggling to accomplish basic things like get a shower, brush my teeth, or get dressed. My local doctor was frustrated as without any medical coverage I am quite limited in what medicine I could afford. I was already on a couple of low income pharmaceutical plans that sent me free medicine through the mail involving more paper work for my doctor and me, but am unable to have more specialized testing done. To add to my stress I was being bombarded with bills from the doctors I had already seen, lab work that had been done, and the local hospital where I had undergone testing. It didn’t alter the fact that I was working on trying to get the disability coverage that would pay my bills, they wanted their money now. I couldn’t blame them. We had always paid our bills on time and had good credit, but at this point we were barely surviving. Even so I started sending a small check to each creditor - money we could ill afford to spare and that wouldn’t get reimbursed. Despite faithful monthly payments, I began getting threatening letters through the mail. Then a couple of the accounts were turned over to credit agencies and evening and weekend phone calls. I quickly discovered that I couldn’t reason with these people. They flatly refused to believe that I couldn’t work and kept demanding payment, which only stressed me out and put me back into bed every time I talked with a creditor. My lawyer finally told me not to answer any more phone calls and tell them to contact him.

As another year went by I begin to wonder if the government hoped that I’d die before my case came up or I’d suddenly get better and be able to work so they wouldn’t have to bother with my case. After another year I received an official letter telling me that my court date had finally been set. It all seems like a bad memory to me now. I only remember that I was in a lot of pain from traveling, had to hold onto someone’s arm in order to walk, fought to stay awake to think, and couldn’t remember simple things that I should have known. Dana said that the police women, who searched me, told him that she hoped I’d get approved as I needed to be on disability. In other words I’d have been mortified if I had been in my right mind. My lawyer was convinced that I would be approved. The denial in my hand stated otherwise. The judge felt that there wasn’t enough medical evidence to support my claim of disability as my doctor failed to note the times I came to his office on a walker, when I had fallen at home, and the office visits of intense pain. The judge felt that if I was as bad as was claimed I’d be on more medication and would the doctor and specialists more often. Due to lack of medical evidence the judge ruled that there was no reason why I couldn’t do manual labor or work full time.

The irony of it all hit me. I am only able to get a shower every three days and dressed once a week, yet I am considered fit for fulltime work. My lawyer’s office called me to let me know that they are re-appealing my case. I was also informed that I can open up a new case and was encouraged to see my doctor more regularly. But why? What else can my local doctor do for me without medical coverage? And why keep running up medical bills considering I already have medical bills that my house is being threatened over. My husband is also angry at the system. Every day he drives people to the doctor and hospital, which are on disability, people who can get around without any problem. Some are known to be using the system having to shop around for a doctor to give them a prescription or find a drug store that will fill their prescription as they are black listed, yet they still remain on disability. Meanwhile I remain housebound rotating from my bed to the recliner. On good days I shuffle outside in my PJ’s hoping and praying that one day I will get back to normal where I can once again work. I try to remain focused on my blessings. Thinking about governmental bureaucracy only makes me blue.

The Mocking Bird

The Mocking Bird
Dorcas Annette Walker

I have a mocking bird that sings in my ear all year long. Each day I hear its song. Sometimes the song is cheerful giving me hope while other times the song mocks me. When I wake up feeling normal I love to hear the mocking bird’s song. I feel that never again will my body betray me. The pain and overwhelming fatigue is just a past nightmare. I am getting better. I feel stronger. There is nothing wrong with me. Who cares if I am going slower? At least I feel normal again. Sure I can get dressed each day. Hope soars high within me.

The next day I wake up with the awful sick feeling again. Now the birdsong has turned into a noisy harsh sound that makes my head hurt. My body refuses to move when I command it and simple tasks overwhelm me. It is hard for me to concentrate and I feel dizzy. If only the mocking bird would stop. I cover my ears but the song resounds in my head. I can’t get away from it. I try to ignore it thinking positive thoughts. What can I wear that doesn’t need ironed? Who cares if I can’t comb my hair? At least I have changed my clothes. But all I hear is the mocking echo of the dratted bird. Why doesn’t it go away and pester somebody else? Tomorrow will be better.

The next day I feel worse instead of better. The mocking bird’s song is now a taunt. I am slower not faster. I feel angry. I will not let this dictate my life. My heart sinks when I see my face in the mirror. That old looking worn-out woman with uncombed hair is not me! I will comb my hair today no matter what. If I get dressed I will not have enough energy to comb my hair. So I compromise. I choose to comb my hair instead of getting dressed. When at last my hair is combed I feel civilized. I am normal no matter what the crazy bird says. I lie exhausted in my recliner for the rest of the day. Tomorrow will be better.

Tomorrow comes and I force myself to get dressed by noon. I will not give in. Forget about combing my hair. I will not listen to the mocking bird’s taunt. In two hours I can no longer stay awake. I change back into my PJ’s and barely am able to crawl back into bed. Who cares what the crazy bird says? I was able to get dressed three days in a row before breaking my record. I will just start over again. I refuse to give up. The mocking bird is still singing outside my window as I drop off to sleep. I cannot compare myself to others or to what I used to be. Instead I have to find what is normal for me.

New Year's Resolution

New Year’s Resolution
Dorcas Annette Walker

It’s that time of the year again when I evaluate where I’ve been, what past goals have been accomplished, and what new goals I want to set for the coming year. Before Lyme disease it always was a challenging and exciting time. Now I use this time to try and measure whatever progress I’ve made in the past year.

Living in the slow lane of life it is easy to miss what I’ve accomplished overall so I check out where I was a year ago compared to now. Then I discover what I have gained. Oh not the speedy trips of before by any stretch of the imagination, but even one mile now-a-days is an accomplishment. I’ve discovered that I actually take more satisfaction in my one mile than all the past racked up miles of goals finished that were taken for granted in years past. Because now I have had to work hard for each inch gained whereas in yesteryears I took my top speed as a matter of fact. Before when I got behind in my schedule all I had to do was push down harder on the accelerator and presto my speed would pick up. But now even though I keep the pedal jammed to the floor I am lucky to hit five mph. Bumps and pot holes slow me down not to mention the cross winds of other vehicles whizzing past me without the courtesy of slowing down or giving me a wide berth. I can’t say that I blame them. After all I do look like a broken down piece of junk that needs to be towed. I try to keep close to the edge and often pull over out of everybody’s way to avoid causing traffic jams. Sometimes I have to stop and give my steaming engine a much needed rest. Nightmares are when I hit a working zone. That’s when I really get bogged down. But hey I made twelve miles this past year. Not bad considering I only did six or less some other years.

So I’ve decided, uh… fasten your seat belts that this year’s New Year resolution is to try and get dressed each day. I know. I know. Whoever heard of getting dressed for a New Year’s resolution? I used to take getting dressed every day for granted too. But maybe if I push another inch I can get dressed, stay up on my feet, and if there are any downgrades I might even be able to get some much needed chores done too while I’m on the roll. Now that’s what I talk about speeding. I’ll be happy to cheer for your many cross country trips; just don’t smirk at my simple goal. It wasn’t that long ago that I was hung up in a garage at a complete standstill. So compared to that I am really moving.

One Little Froggie In A Milk Pail

One Little Froggie in a Milk Pail
Dorcas Annette Walker

My life resembles the story of two frogs that jumped into milk pails. One little frog gave up and drowned. The other frog kept kicking until he churned the milk into butter and was able to hop out. I feel like a mixture of the two. Somehow, not of my doing, I’ve landed in a milk pail. Some days all I can manage to do is float and keep my head above the surface as I grasp for a solid surface to rest on. I wonder how on earth I will ever manage to get out of the milk pail with constant fatigue and pain overwhelming me. Other days I kick in rebellion not willing to let this crazy Lyme disease get the better of me. I manage to churn up particles of butter resembling tiny steps taken towards normalcy or any small goal that I’ve managed to accomplish. Every so often I find a solid lump of butter, claw my way to the top, and take inventory of where I am. I keep telling myself that all those swirls of yellow floating around me are positive proof that I have gained ground from where I was when I landed in the milk pail to start with. Even the milk looks a bit thicker. Just as I get confident to make a great leap for freedom, I slip back down into the milk. As the milk sloshes around my face I am taunted by the fact that I am still imprisoned in my milk pail of life. It’s then I’m tempted to give into despair. How much longer can I keep kicking? Churning milk into butter is lots harder than it looks, especially when you are the only one that is doing the kicking. Friends and family cheer me on. Every so often one peers down at me to ask how I am doing. I tell myself that I am not alone, even if it is just me in this cold metal milk pail. But the stark reality hits me in the face. I realize that no matter how much others want to help it really is up to me to keep kicking… keep hoping that the milk in life I’ve been given will soon turn into golden butter.

Celebrate the Small Stuff

Celebrate the Small Stuff
Dorcas Annette Walker

-Today I got a shower. Once more I feel like a civilized human.
- I brushed my teeth. Joys!
- I didn’t have enough energy to get dressed, but at least I have on a new pair of PJ’s.
- I was able to check my emails that have been piling up like fallen leaves in autumn.
- After resting a bit in my recliner, I hung up a load of wash outside and breathed in the fresh air.
- Then I rocked a spell on my front porch and watched the tiny hummingbirds and Lucy Lou race madly about in the sunshine. What bliss!
- After lunch, I brushed my cats enjoying the feel of soft fur under my fingers and listened to them purr back to me.
- I filled up the bird feeders on the porch, talked to my birds, and listened to them chattering away in the trees like a bunch of gossips. My birds are so much fun to watch though the window on days when I can’t get outdoors.
- When Dana got home I was able to stroll through my neglected flowerbeds. Each bloom was a delight to see.
- It has been a wonderful day! My pain has been managed enough where I could function in a halfway normal manner again and I’ve been able to stay awake enough to enjoy the day.

Purple PJ's and Pearls

Purple PJ’s and Pearls
Dorcas Annette Walker

It is Sunday and the house is silent since the guys left for church. I feel like a ghost as I wander from my recliner to the kitchen. I think of all my friends at church and wish that I was there with them. Instead I’m a prisoner of pain and fatigue. I feel depressed wishing that my life was not constantly over-shadowed by the affects of Lyme disease.

I force myself to take a shower even though it expends precious energy; the warm water smoothing aching muscles and hurting joints. I feel like I’ve joined the human race once more. I put on a set of soft lacy lavender/purple PJ’s that my sister gave me for my birthday last year. It was a perfect gift since most days consists of wearing pajamas instead of dresses. Whenever I am unable to get out to church and be with my friends on Sunday I wear my purple PJ’s.

I brush my teeth shuddering at the thought of neglected past days. I used to automatically brush my teeth twice a day. Now nights I struggle to remember if I brushed my teeth that morning or not. The haggard lady staring back at me in the mirror gives me a scare. Anger rises inside at what I have become. I’m tired of dragged around like a pale shadow. I start working on my face plucking stray eyebrow hairs and camouflaging the dark circles under my eyes until I see a resemblance of myself in the mirror. I glance at my watch. It is almost noon. Where has the time gone?

I push myself to brush out hair that hasn’t been combed in three days cringing at the sweaty feel of hair needing to be washed. Then the irony strikes me. I’m the girl who used to fix my long dark hair often times twice a day while traveling with my husband going to church night after night from state to state. I always prided myself on being put together. I took for granted the compliments I received of being told that I always had every hair in place and looked so well groomed. I loved to dress with a bit of pizzazz matching shoes and pocketbooks to flowery hats. Now I can’t keep my hair brushed out daily. I fix the front pulling my hair back into a fancy silver barrette. Then I braid the back and tie the braid up in a lavender scrunchy. I put on my Sunday watch and the strand of pearls my sister gave me. My body feels like I’ve put in a hard day’s work. As I rest in my recliner I feel elegant even though I’m only dressed in my lavender PJ’s.

One Normal Day

One Normal Day
Dorcas Annette Walker

The other Sunday I had one day of being myself- something that hasn’t happened for months. Once I got up and took my pain meds my bones and joints didn’t bother me like usual. I put a roast in the crock pot, ironed a dress to wear, and then got ready for church. I had to keep telling myself to slow down as I felt energy surging through my body. I was afraid it would suddenly leave like it has all too often before. It felt strange to feel strong after dragging around for so long.

Excitement welled up inside me on the drive to church. After not being away from the house for a couple of weeks, my eyes drank in familiar sights. I felt as though I had come back home from being away on a long journey. The world looked brand new. I savored the sight of each tree and flower reveling in familiar landscapes that I had forgot.

When I walked my feet wanted to skip and dance, but I restrained myself as any quick movement threw me off balance, settling instead to walk sedately on my own without having to lean on my husband’s arm for support. It was an invigorating to feel independent again instead of being reduced to the helpless clinging-vine of a woman I had become. I realized that I felt no pain. It was actually scary. Had some kind of miracle happened?

All my senses were alive. Instead of the shell of my body being at church with the real me looking on from the shadows while trying to focus through pain, I now could take in every detail without concentrating until becoming exhausted. I sang in the choir feeling once more a part of my home church and not some visitor. Even though the possibility of collapsing when I got back home hovered in the back of my mind it didn’t dim the joy of being with all my friends, who have supported me faithfully in prayer for so long. What a rejoicing and hugging time we had being together again.

Back home I set the dining room table, served the meal, and then washed up the dishes like I always had in the past. While my guys laid down for an afternoon nap, I walked outside soaking in the beauty of the warm summer day. My flowers reached out to welcome me as I mentally made note of all the things that needed to be done. I wished I could grab my trowel and wade in to restore my neglected flower beds back to their former glory, but I restrained myself. I sat on the front porch, answered some letters, and puttered around like I used to do before Lyme disease took over my life. I wanted to pinch myself to make sure that I wasn’t dreaming.

The hours flew by swiftly… all too fast. I wanted to grab time and stop it. I chatted with my sister on the phone. She sounded so happy that I was having such a good day. Then still feeling like myself, I went to church that evening to hear Dana preach. It had been months since I last heard him preach, much less got out in the evening. Usually by nighttime I am always exhausted and drag around. The regular organist was absent so I played the organ - a huge step of faith as you need a clear mind. I’ve tried different times to play the piano at the house to stay in practice, but often have to quit because it takes so much concentration that I quickly become exhausted and fatigued. My fingers flew over the keys like before and it was a wonderful to feel the music flowing out from my finger tips. I played along for the specials songs, even though I hadn’t practiced, instinctively hitting the right notes like I used to do when playing by ear. The church folk were so excited to see me again that night.

We came back home, I changed into my PJ’s, and then Dana and I relaxed and watched a DVD. He was amazed that I was still up, going, and feeling okay. All too soon it was bedtime. Even though I was feeling tired, it wasn’t the draining exhaustion like usual. I reluctantly crawled into bed not wanting the day to end. I fell asleep with a smile on my face and slept soundly until I woke up once again in pain. Even though I’ve been back in bed again and have had to struggle through rough days of chronic pain the memory of my one normal day helps to sustain me. I will always treasure the unexpected gift that I was given.