The Blank Computer Screen of Life

The Blank Computer Screen of Life
Dorcas Annette Walker

I don't know if I can make sense or articulate the frustration of the struggle involved living with short term memory loss. I now have to concentrate and work harder on things that I used to do subconsciously. It’s like having to relearn stuff that you learned and accomplished during the first years of your life. You suddenly feel as though you are back in your toddler years without any warning. I mean who goes around thinking about their balance as they stand or walk during the day? Now I find myself without warning, out of the blue, getting dizzy as I walk across a room or I have to concentrate so I don’t stagger as I walk. When I stand still I had to relearn keeping my balance while talking at the same time or gesturing with my hands- something that I always do when I talk- to keep from falling over. I admit it is rather a weird sensation and it makes a person’s mind quickly become fatigued with all the extra work that my brain cells now have to perform. Walking up or down steps is definitely more of a challenge. I think wistfully back to when I used to run up and down steps without a second thought.

One of my biggest losses is not being able to sit down and play the piano like I once did. Before I played mostly subconsciously by memory “or ear” running all over the keyboard. Now I have to relearn it all over again. I sit down to play a song, but forget what my hands are supposed to do next. The harder I try to think the more frustrated I get so I will stop and leave the piano hoping for another day of clarity when my fingers will once again more effortlessly over the keys. The more I keep going back and trying the more I slowly am gaining ground.

My mind often feels like a computer screen that suddenly goes blank as I talk; lose my train of thought right in the middle of a sentence, or find myself digressing to another area without warning. I didn’t even realize what I was doing until my husband kept stopping me telling me he was all confused trying to keep up with me as I kept jumping from subject to subject without finishing one thought. At other times my mind gets so foggy that I just can’t think straight, which is really depressing. Especially for someone who used to talk all the time nonstop now having to grope for words that you know are there, but you just can’t find them.

Some days if I don’t concentrate on just one thing to do I get overwhelmed. Instead of living by lists of items to do that always kept my life organized now I will feel all the things needing to do press in on me until I feel so fatigued mentally that my brain shuts down and I can’t think straight. Or sometimes right in the middle of doing a task, I get overwhelmed and can’t continue. I’ve learned to get a book, sit down in my recliner and read to help me relax. It is during these times that I feel detached from any emotion like I’m living in a limbo somewhere losing the identity of who I am. It is as if I don’t care whether I live or die. I have to fight not to give up and give in to living like a zombie even when days pass by where I lose touch with time until I have the strength to fight and bring myself back to life and reality again.

I deal with forgetfulness daily like trying to remember if I have brushed my teeth that morning etc. Sometimes I have to concentrate on how to do my exercises that I have done for years as I will forget right in the middle of doing them. It is more the here and now versus remembering past incidents or episodes of my life. I can remember that my sister called me on the weekend and what we talked about, but will suddenly forget the next step in doing something that I have done all my life.

Also a big frustration is the fact that I don't know from day to day how my system is going to react- if I'll have enough energy to get dressed or not. I can't take it easy one day to store up energy for the next. I've tried not doing anything Fri or Sat so I could make it to church Sunday only not to be able to get out of bed Sunday morning. There is no pattern to follow. So now whenever I have any energy at all I cram everything I can do into that day wishing that the day would never end.

Well enough about me- there is nothing like chronic illness to make one become self centered, huh? And here I am just rattling on and on. I have found out that working and concentrating on a computer helps the brain cells relearn patterns. It has been a big help to me. Even though it mentally exhausts me the more I do it the easier it becomes. So every inch I gain on my road back to normalcy is worth the effort. Like they say, “no gain without pain”.

Winter Blues Turn to Spring Hope

Winter Blues Turn to Spring Hope
Dorcas Annette Walker

Without hope I would not want to live. I would only exist. Hope makes life living in the shadows bearable when I want to give in to despair. And so I savor the small things that I took for granted before. I have learned to live in the moment on good days to tide me over the bad days when I am down. As the world around me bursts into a rainbow of spring colors up here in the mountains of Tennessee and the birds fill the woods around my house with songs and activity, I feel a stirring of hope deep inside once again.

Hope is:

- the belief that someday I will be normal again
- feeling the warmth of sunshine on my face warming my bones
- getting to hang wash outside once again
- experiencing new strength flowing through my body
- taking a walk in my woods with my dogs
- savoring the smiles and chatter of my toddler grandson each week
- hugs from my Nashville grandchildren on quick visits
- seeing bright red cardinals and their mates up close
- hearing birds chirping
- hanging up my hummingbird feeders
- watching the migrating birds arrive and begin building nests in my birdhouses
- feeling the warm body of my dog, Lucy Lou, curled up in my lap
- the touch of silky soft fur of my cat, Sarah Annabelle, and hearing her purr
- believing that I am gaining ground even if it is just one inch at a time
- planting a garden this year with my husband’s help
- walking through my flowerbeds to see what is growing and blooming
- planning and dreaming of things to accomplish for the future

The Sharp Edge of the Sword

The Sharp Edge of the Sword
Dorcas Annette Walker

I live by the sharp edge of the sword physically, mentally and emotionally. Cold winter days of freezing temperatures or any change in the weather sets off arthritis that has taken over my body and my skeletal frame. I know that it is going to be a very rough day when I wake up crying from pain that radiates throughout my body like a fire out of control along with a sharp headache that makes me sick to my stomach. I pop extra pain pills to try and get my pain under control, but the pain draws me inward shutting out the world around me until all I can focus on is the pain consuming me while concentrating on trying to survive until the pain lets up enough for fatigue to overtake me and I can disappear into a fog of restless sleep. Once again my world has narrowed down to just me sucking out any enjoyment in life. When I visit my doctor he shakes his head over all my multiple symptoms after asking what joint hurts and I tell him it is my entire body.

I push myself to go to church Sunday as once again I have missed several Sundays leaving me feeling like a heathen. It’s so nice being back with my church family, catching up on news firsthand, and seeing all my friends again. I actually feel human once more. My pastor announces my presence and the entire congregation gives me a round of applause. Even though I appreciate the encouragement of my church family and the joy I see on their faces when they see me it will be so nice when I can once again fade into the background as a regular church attendee, but then I am always greedy wanting more. Instead I have to realize that attending worship service Sunday morning is all that I can do if I want to stay on my feet the rest of the week. Instead Monday morning I land back in my recliner feeling like I’ve been run over and left for road kill.

One big frustration is well meaning people telling me “to keep trusting God for complete healing” or “they are so thankful that now I am finally well”. I know that they mean to be encouraging, but instead I am left feeling depressed. I’m thrilled to death when I am back on my feet and “look normal” although it seems hard for folk to understand or comprehend just how much energy it takes and how exhausting it is for me to “look normal” compared to what it used to be, and that attending church and sitting upright on a padded pew invariably flares up pain in my spine that exhausts and depletes my precious store of energy. And that even though today I act like myself I will invariably pay for it tomorrow. Chronic illness unfortunately doesn’t disappear like the cold or a bout of flu. Instead one has to deal with it on a daily basis that often leaves a person feeling like a basket case of swinging emotions not knowing from one day to the next how your body will react. In fact I get mighty tired myself of always having to cope with a body that limits me, but for me I have no choice.

Reflections of the Past Year

Reflections of the Past Year
Dorcas Annette Walker

I’m starting the New Year out totaling up my gains and losses to use as a gauge to see just where I am on this road of life as I live with the fallout of Lyme disease throughout my system. I shall first whine about what I still haven’t obtained- so feel free to skip the next paragraph as I wouldn’t want to cause anyone else to go into a depressive mode- and then count my achieved goals to leave you with a positive note.

Losses: I still have to spend some days in the recliner due to lack of basic energy, the loss of freedom to jump in my car and run to town on a whim, the ability to keep up with my housework on a regular schedule instead of always falling behind- right now I’m trying to ignore the sink that is overflowing with dirty dishes gnawing at my conscience like a sore tooth, not able to spend the day baking and cooking to my heart’s delight during holidays, my pitiful few goals that I still have to keep reducing in order to try and reach one single objective, not being able to get dressed and combed everyday- I continue to shuffle around in my PJ’s on a regular basis.

Gains: I am feeling stronger than last year and feel like myself most of the time- watch out world here I come!-, I appreciate the basic simple things in life that I once took for granted and try to count at least one blessing each day, I am doing a tiny itsy bit more writing and can work at my computer most days for a short span, the pride and joy of crossing off a task completed no matter how small, I’ve been able to attend church more regularly- what bliss, and have started doing some shopping on my own, I can do housecleaning nearly every week, and I have started taking walks in the woods with my dogs to help gain strength.

Overall I have gained one inch instead of the two and three that I had hoped for, but I am so very thankful for each centimeter of improvement rewarding myself like I have won the Olympics or World Series to keep my spirit and mind ever reaching forward.

Body Betrayal

Body Betrayal
Dorcas Annette Walker

Once more I hit the high peak of starting to have more good days in a week than bad. Talk about ecstasy. The only problem is that on good days there isn’t enough hours in the day for what all I really desperately need to do much less desire to get done. I have become a very greedy person. How can I make a normal person understand what sheer bliss it is to feel like myself and be able to do simple tasks like take a shower, get dressed, or comb my hair without totally depleting all my energy? All the stuff one does to start the day without ever thinking about it. On a good day the past seems like a bad dream or nightmare and I think surely it wasn’t that bad. Maybe I was just being lazy or had gotten into a rut without realizing it. I hit reality though real fast the next morning when I wake up feeling like I’ve been run over by a semi or am up in the wee hours of the morning struggling to get my pain level down enough to be able to doze off. And so the roller coaster of life goes on for me. I know I should be used to it by now. I certainly have complained plenty and yet it still takes me by surprise every time my body betrays me and I crash and land back in bed. Deep inside hope refuses to die and the belief that I someday I will beat this crazy disease that controls my system.

This summer I really needed some good days as my son was getting married. I wanted to get my house back in shape before out-of-state relatives came to stay with us over the weekend. They know that I am not well, but still it hurts my sense of pride to have anyone see what level my housekeeping skills have dropped to. I know that I will probably never again achieve the status of being considered a perfect housekeeper with everything in tiptop shape like before, but I shudder at what my poor house has been reduced to. It reminds me too much of my own body with dust laying thick over every surface, cobwebs hanging from the ceiling, dirty bathrooms, and floors that I am unable to keep up with. Maybe we should start charging admission over the Halloween season as the local haunted house. I can almost see my house deteriorate before my eyes. Now I’m fully aware of all the energy spent that I automatically did on a daily basis without thinking. So realistically I knew that it would take me a good month or more not to mention my wanting to get my flower gardens in order once more.

I made several lists to break down the chores I wanted done and each week I’d choose one major chore. The only problem is that by the end of the week I’d realize that I hadn’t gotten started on what I planned to do as I would have enough bad days that my good days would be spent trying to catch up on overdue necessary tasks. Each week I’d revise my lists and cross another chore until it was the last week and realized that I would have to focus on simply getting my house civilized and forget a thorough cleaning.

My husband took me shopping the weekend before the wedding to buy a dress. We also made a couple stops to get some things to prepare for the company. I noticed my right foot bothering me, but I didn’t pay it any attention as I’m so used to ignoring low levels of pain. That night my toe still hurt so I decided to check it out thinking that it probably was my big toe, which swells up whenever I am up on my feet very long. One day I will need surgery done on it. Both of my big toes turn inward and rub blisters on the second toe so I wrap them up in gauze and tape to give relief and put off the evil day of surgery. To my shock my second toe had swelled up twice its size, was dark reddish purple, and I had a red streak running down my foot. I soaked my foot in Epsom salt water and realized that I needed to keep my foot elevated. The next evening it still looked bad. As soon as Dana saw my toe, he declared I needed to go see the doctor or next I’d lose my toe. Since it was Saturday I decided to wait and see if it wouldn’t get better by soaking and elevating it a couple of days. When my son saw my toe he told me not to worry that he would get a wheelchair and wheel me down the aisle at his wedding the next Saturday, immediately rousing my fighting spirit making me determine that I would walk down the aisle on my own power. I now had no choice, but to keep my foot up in the air.

Sun morning I woke up to discover a red rash all over my body like some kind of a reaction. I tried to think what on earth could have caused a reaction to flare up. Then I remembered the last time Dana had gone shopping he accidently picked up another brand of the regular Irish Springs soap that we use. I didn’t think a thing of it at the time as I have never been allergic to soap before. Guess what? Something in my system decided to act up so I started popping Benadryl to get the reaction under control. Now not only did I have to keep my foot up, but I was feeling itchy and miserable the very week I was supposed to be focusing on cleaning my house! By Tuesday my foot was looking better and the red streak down my foot was gone, but as soon as I stood much on my feet my toe would swell back up. The worse nightmare of my life was coming to pass. My company would find a filthy house. I was angry and frustrated at my body’s betrayal.

My daughter came Thursday morning- the day everyone was arriving- and worked circles around me getting my house civilized. We barely got the house cleaned and beds made before my sister and her kids arrived. Over the weekend everyone buzzed around me telling me every time I turned around to sit down and rest as they had everything in control so I behaved myself trying to save energy for the wedding. I was thrilled to wake up on my son’s wedding day feeling like myself. I sailed through the wedding in fine shape and made it back to the house that evening before I crashed into bed. My sister and niece washed up all my towels and cleaned the bathroom before they left. Then my husband’s Aunt stripped all the sheets off the beds and washed them, swept all my floors, and cleaned the kitchen before her and her husband left. Talk about feeling spoiled. I was left with a clean house. I should have had plenty of energy, but instead I staggered back in bed. I keep working trying to jump start my body to get it moving again, but it is very slow going. Such is life with a body that without warning betrays you.

The Sideways Life

The Sideways Life
Dorcas Annette Walker

I got another tick bite so I am back on antibiotics again. Rats!!!!!!!!!!!!! And just when I was starting to feel normal. I was outside on a warm sunny day hanging up some wash and puttering around in my flowerbeds a little. I didn’t soak in the tub like I usually do after being outside as early that morning (around 3 am) I had taken a hot bath after waking up in pain to try and get my body relaxed enough to go back to sleep. Instead I took a shower.

The next morning as soon as I woke up I felt something on my back. It was a seed tick. I couldn’t reach it so I woke up my son, who tried to get the tick out, but the tick was embedded deep in my skin. I ended up at the doctor’s office where my doctor had a time trying to get the tick out. He said it was the worst he had seen. Like usual the nasty critter had bitten me three times instead of once. So my doctor put me on antibiotics for a month to make sure that my Lyme’s stays in remission.

I know I should be thankful for the dear pills, but they make you so sick. Instead I am feeling grouchy and out of sorts. My back is sore from where my doctor dug around to get the tick out and each of my bites have spread out in a rash that are hot and itchy. I’ve made a paste of oatmeal, which I keep putting on my bites that helps some. I’m wearing loose light PJ’s as anything that keeps in my body heat aggravates the tick bites and wouldn’t you know it my bites are located at the back of my waist.

I have to keep moving around as I can’t sit up against anything for long. At night I have to sleep mostly on my stomach, which throws my back out and aggravates my spine as my hips bother me (thanks to arthritis) if I sleep sideways very long. What fun! So my nights are spent rotating my body all night long. I feel more like a roasted rotisserie chicken by morning than a rested human being. I stagger through the day feeling tired and sick. When I get too overwhelmed I collapse and take a nap. Ever try reading a book or watching a DVD sitting sideways? Maybe I should write a book on how to live sideways?

The Clock of Life

The Clock of Life
Dorcas Annette Walker

My life is measured by the clock
Tick tock, tick tock.
Beating out the time
Tick tock, tick tock.

Sounds in the stillness of life
Tick tock, tick tock.
As time marches on
Tick tock, tick tock.

The mantle clock measures each moment
Tick tock, tick tock.
Each second, minute, and hour
Tick tock, tick tock.

While the Cuckoo Coo clock echoes my life
Tick tock, tick tock.
Like the bird held captive
Tick tock, tick tock.

Freedom for a tantalizing moment
Tick tock, tick tock
Then shut back into the box
Tick tock, tick tock.

I want to stop the clock
Tick tock, tick tock
And capture the fleeing seconds
Tick tock, tick tock.

Hold back the time that races past
Tick tock, tick tock
While I sit on the sidelines of life
Tick tock, tick tock.

The grandfather clock sounds out
Tick tock, tick tock
Ponderous tones that grab attention
Tick tock, tick tock.

Reminding me that I am not alone
Tick tock, tick tock
As majestic music surrounds me
Tick tock, tick tock.

Though my life is inactive
Tick tock, tick tock
I too have worth
Tick tock, tick tock.

As long as I am faithful to do my best
Tick tock, tick tock
And make each minute count
Tick tock, tick tock.