CHALLENGE and GOAL

Before I found the second tumor, I had been a very active person playing tennis maybe three times a week, being treasurer of the St. Andrews United Methodist Women and treasurer for the church cookbooks, singing in our church choir and busy drawing floor plans for Jack's and my new house. We finished the house, moved in July 4, 1982 and Jack and I were doing our own house and yard work. But, now, everything was different. My world had turned up-side-down, and I was on the bottom side.

My first challenge was to get well and get to feeling good again.
And my ultimate goal was to return to the useful, meaningful, normal life I had had before. I wanted, so badly to be able to play tennis again. So badly to be able to lead a normal life! I surely didn't want to have to be dependent on others for the rest of my life, for my family's sake and certainly for mine.
I hadn't realized the ''parts of me not working right” would not be working right for such a long time. I remember asking my daughter, Eleanor, in my special way of talking, how long she thought it would take me to get back to normal. (1 was thinking in terms of months.) She kind of shrugged her shouldered meaning she didn't know, but thinking it would be an awfully long time. She could tell.

The challenge and my goal were the only things that mattered in my life now. I, not being able to think very well, thought of little else. GET WELL! GET BACK TO NORMAL! It was my one and only motivation and was of paramount importance to me. My family and friends had encouragingly told me they were sure I could do it, so I, wanting to believe them and wanting to live up to their expectations of me, believed I could...... not realizing that there was still that 15% chance of my speech and/or motor problem to be permanent.

Julie, my second daughter, provided my second big challenge when she bought me a stand to hold material for counted cross stitching to get me started learning to use my left hand. In my limited mental capacity, not only was I having trouble thinking, but definitely having trouble counting. But I tried hard and stuck with it, and soon I had that wonderful feeling of achievement, of productivity, of victory over mastering something.

It's so good, so important to have challenges for the handicapped so they can feel the pleasure of accomplishment, of progressing, of moving forward, instead of the boredom that sets in. But be careful not to make a challenge unreachable. Most of the time the handicapped person's life has been changed so completely and everything they had known and loved doing before is gone. But don't GIVE UP! You'd be surprised at what you and the Lord together might accomplish. Encouragement, too, is so necessary.
Make it sincere, no matter how small the progress.

Seizures: My Personal Experience

Seizures: My Personal Experience

Sometimes a seizure may be so slight that no visible signs are seen in spite of the fact that the nerve endings in the elbow and arm are producing feelings of violent tingling, extreme heaviness and feels awful. Sometimes this ''focal sensory seizure'' moves into a more severe seizure, known as a “focal motor seizure'' with the visible results of jerking fingers. These same sensations may slowly ''march'' upwards until the whole hand, wrist, arm and shoulder are involved. If the seizure worsened it might run on up the muscle in the back of the neck and might even make the head jerk back and forth.....maybe even causing breathing difficulties. It's scary and no fun to have one! A light seizure may last only a few seconds but a really bad one lasts several minutes......which seems like an eternity. Then it ends naturally as special chemicals in the brain bring cell activity back to normal.

I have found that having seizures definitely has a stigma to it, but please don't be afraid to be around me. If I should have one of the very few seizures I have, you can't do anything for me nor are you expected to. I have some pills to do the trick.

Brain cells, unlike other cells, will not regenerate or replace themselves when destroyed, but by some unexplained yet marvelous process, other parts of the brain can establish circuits to take over the functions of the damaged area. Over time, injured cells can sprout new branches and connections and help the brain shift important functions, such as control of movement, from the damaged part of the brain to undamaged regions. As a patient recovers even small amounts initially, over a period of time it will add up to a significant functional improvement.

What are seizures?

What are seizures?

1. Seizures are a physical condition, not an emotional or a mental state. They are more apt to occur if the person is under stress, is greatly fatigued or has missed taking the medicine that controls seizures.

2. Seizures are recurrent sudden changes that are beyond voluntary control due to episodes of overactivity of brain cells.

The brain is the control center of the body. All human activity is made possible by the orderly discharge of electrical energy between brain cells. Normal electrical signals between cells make the brain and the body work correctly. In this process, the normal electrical function of the brain, breaks down, then an electrical storm or overactivity occurs in the brain and the visible result is a seizure.

This will shock you, but there is not a person living who is not capable of having a seizure if there is sufficient stimulus to goad his brain cells into overactivity. However, the brain cells in most people have an innate resistance to becoming overactive. But there are persons who have a lowered resistance to the irritation of cells that lead to the occurrence of seizures.

3. Most Seizures Can Be Controlled with Drug Therapy. Drug therapy is by far the most common treatment for seizure control used by doctors. A drug won't work properly until it reaches a certain level in the body and that level has to be maintained so that there is always enough of the drug in the patient's system to quiet seizures and prevent them from happening, without causing too many side effects. The doctor ideally tries to bring the dose to just the point where the side effects and the seizures both disappear.

It is estimated that about 100% of the population, now more than two million people, have epilepsy. 100,000 new cases develop every year. Many people get complete control of seizures so long as their medication is taken regularly. I take Dilantin as my anticonvulsant medication and if I keep just the right amount of Dilantin in my blood stream at all times, the drug controls my seizures........instead of a seizure controlling me.
But I have found it to be extremely difficult to keep just the right amount in my blood stream. My level seems to see-saw and most of the time is either too high or too low. So every few weeks I have to have my blood drawn and tested by the hospital outpatient to keep a check on my level. My brain suffered permanent neurological damage with the removal of the second brain tumor so I will have to take an anticonvulsants for the rest of my life.

SEIZURES

Soon after I got home I was told by somebody that I needed to have on hand tongue depressors in event of having a seizure. This was the first I had heard anything about having seizures! I had not been told that Dr. Dial and also Dr. Clark had said that due to the location of the tumor and the fact that “there had been so much manipulation in that area during the removal of the tumor” that I would be very likely to have seizures. I had no idea what having a seizure would be like, but to me, it was a terrifying thought! I was so afraid, I put a tongue depressor in every room in the house, in case I were to have a seizure in that particular room.

I'm so glad I never had an occasion to use one because not until years later, when reading “FIRST AID FOR SEIZURES” put out by The Epilepsy Foundation of America, did I learn: ''DO NOT force a tongue depressor or anything else into a person's mouth while he is having a seizure.
It is NOT true that a person having a seizure can swallow his tongue, and efforts to hold the tongue down can injure teeth or jaws.” I can't remember who told me I needed to have tongue depressors on hand, but that person was certainly misinformed and had surely scared me to death.

Very few people realize that there are many different types of seizures. Most people think of a seizure as being the grand mal convulsive type with the person unconscious, jaw muscle clenched, back stiffened and arms and legs jerking in muscle spasms. But the few seizures I have had are very different from this. I have a warning when a seizure is about to start. I remain awake, can think, talk, and am aware of what is going on while having the seizure. I never fall or pass out, but I do like to find a place to lie down.

When I started back singing with the church choir, I had a horror of maybe having a seizure one Sunday while sitting in the choir where all the congregation could see me. So I worked out a plan with Jack to please sit somewhere where he could see me in case I were to start having a seizure and would need to remove myself from public view. He was to leave church as soon as I did and meet me in the church parlor which was about the only place I could comfortably lie down. I have thanked the Lord many times for my not having to go through the embarrassment of ever having to leave during the church service.

Jealous: Adjusting After Brain Surgery

JEALOUS

I was certainly glad to be home, but things didn't seem like they had before I left. I had been ''the lady of the house”; I had bought our own groceries; I had taken the responsibility of running my own home. But now things were different! There were two other ladies taking my place! I understood the necessity of having them but..........

There had been so many changes; everything seemed different now.

More and more I was realizing the wide gulf between what I could do and what I no longer would be able to do. I still couldn't read or enjoy TV and not having yet learned to do anything with my left hand I had nothing to do. I mean absolutely nothing! I was so bored and was getting weaker and weaker, first from the operation and over three weeks stay in the hospital, and now, from lack of exercise.

As I sat around the house with nothing to do in those tight, white, support hose with my leg propped up, my mind blank and just staring into space,, I could hear Jack and his new part-time secretary laughing and talking with each other in his office and sounding like they were having such a good time. As the days went by, I continued to hear them, day in and day out, talking and laughing while they worked together. I wanted so badly to be able to ta1k....... and laugh. It seemed that without speech I had lost contact with the outside world.

Back in my bedroom, by myself, I felt so lonesome and alone.

I began experiencing that same ''excluded'' feeling. I felt..........

.............jealous, I reckon. I had never been a jealous person before, and I didn’t want to be jealous now. But I guess I was ........... jealous of them having such a good time together. Jealous of anybody able to talk and laugh and feel like having fun. I certainly was no fun! Nor was I young.......... or good looking. I was bald headed and had a big scar left from the incision. I couldn't think or talk or comprehend well enough to even follow a conversation, and I didn't feel good......... and I looked even worse. I would cry at the drop of a hat; in fact, there was just a fine line between my crying and my not crying. And I hated myself for feeling jealous.

I wrestled with my guilt; I didn't understand my feeling myself. I should have been happy that they could enjoy one another. That's what Jack would have said to me. But I was not happy. I felt isolated, afraid and alone. With not being able to communicate with others and not able to express my hurts, I found myself in a lonesome little world..................a1l by myself.

Household Help after Brain Surgery

Myrtle was to literally be ''my right arm”. She was more than just a maid, as evidenced in time, by the many extra kindnesses she did for me and the family. She met me at the ear to help me get out and then, while Jack was parking the car in the garage, she slowly led me up the front walk and on through the front door. I was still very weak and the trip from Columbia had exhausted me, but it was so very good to be home again! Myrtle had turned the cover back on my bed so it would look inviting and I, being tired, headed straight for it. She and I would soon become very good Christian friends.

Jack was to be responsible for lining up nurses to administer the Heparin injection in my stomach in hopes that the clot in my leg would soon be dissolved. I was so glad now, that I had drawn the floor plan with Jack's office in our house; it made it much easier for him to see that I was taken care of. Between the secretary from nine to twelve and the maid from twelve to four and Jack in the evenings, I would have somebody in the house with me most all the time to answer the telephone and the door.

SO MANY CHANGES

I remember humming to the radio as Jack drove me home to Orangeburg. I hadn't used my vocal chords in such a long time I was afraid they might not work anymore. So I was relieved to find that I could still carry a tune even though I couldn't sing any words. I had sung in our church choir ever since our church began in 1956 and music had always been such an enjoyable part of my life. I wouldn't be able to play the piano anymore so I clung to the hope that I might still be able to sing.

So much had happened me in the past three weeks-.....so many changes for my life......so many things I would no longer be able to do. As are drove along I learned from Jack that he had hired a part-time secretary who was to work from nine in the morning until twelve noon to help him in his office in our new house. I remembered now having heard Jack talking to Eleanor about somebody being young and good-looking but I had not understood what they were talking about so I hadn't made any connection.

Jack told me also, that he had hired a maid, to work from noon to four o'clock in the afternoon, to take care of me, to do the bookings to buy the groceries and run the house since I could no longer do these things. (So that's what Eleanor and Jack were talking about at the foot of my hospital bed when I overheard .....secretary ..............maid!)

DISCHARGED after Meningioma Surgery

I became so bored, and so lonesome....just lying there hour after hour........day in and day out. Some visitor, other than family, would come every now and then, but not being able to converse, the conversation still had to be all one-way. I found out that Harry A., from Orangeburg, was in the hospital room right next to mine, but there was no question about going over to visit him; I had to stay in bed with my leg propped up in those tight, white, support hose!

At last, after three weeks and two days, on March 15, 1983, I was told I could go HOME..........but with the understanding that I would keep my leg propped up and would continue wearing the tight, white, support hose. And that Jack would be responsible for lining up nurses to give me the Heparin injections.

THE DISCHARGE SUMMARY from the Richland Memorial Hospital read:
PATIENT: Ashlyn Gray
She underwent a craniotomy.....with the removal of meningioma.
Tumor had invaded most of the skull on the left side. Craniectomy was required to remove all of this bone involved with tumor. Also the dura was sacrificed. ....she developed thrombophlebitis and was seen by Dr. Love who began the patient on Heparin....improved to the point that she could ambulate with minimal assistance with most of the deficit being in the arm and in speech.
CONDITION: Improved
PROGNOSIS: Good

Getting Better, Then a Setback

Finally, the bulky dressing was cut off of my bald head and the drain tube and the sack were both removed. In its place I was given a soft little skull cap like the one I has been given with the first brain tumor. Now I could hear better and it would be much easier to move about, to get up to sit in the chair, and to go to the bathroom, all without having to hold the sack. By this time I was able to walk almost normally.

Several times Avery H. came to visit. He would help get me in a wheelchair, roll me down the hall, down the elevator, to the front door and on out to the fresh air, green grass, and well people. Those outings were delightful and meant so much to me. I was getting better and better all the time!

But, then, I developed thrombophlebitis (a clot) in my left leg.
I would no longer be able to move around freely but would, now be confined to the hospital bed.....and my stay in the hospital would be prolonged! I was started on Heparin and had to keep a pillow under my knee and wear some tight, white, support hose.

My Friends with Brain Tumors are Now Dead

Bill D. from Columbia came visit one day and told me he had given a blood replacement in my name. What a nice thing to do!

(He has died now from an inoperable brain tumor. And Claude H., also, who was one of our former ministers and such a wonderful person! Most people who have brain tumors seem to die…..I have a hang up with feelings of guilt when it comes to this subject. I ask myself, ''Why this wonderful man? Why this wonderful, young minister? Why not me? Why am I still here's at is certainly hard to understand. God knows.)

Speech test "METHODIST-EPISCOPAL"

One day Dr. Paysinger, when making his post-operative rounds at the hospital, came in my room and asked me if I could say ''Methodist-Episcopal''. I, being a Methodist and not able to hear very well with the bulky dressing over my ears, couldn't: figure out what he was saying. Being unable to ask, I thought maybe he was just joking around with me. I tried to cover up my bewilderment by kind of laughing, but was not really understanding why he was saying anything about my being a Methodist....... or, for that matter, why he was saying anything about Episcopal.

Then several days later he came in my room again and asked if I could say ''Methodist-Episcopal'' yet. I, knowing he knew full well I couldn't say it, thought he was just teasing me again. So once again I tried to cover up by kind of laughing and just smiling as if I knew what was going on.
Months later I learned from Eleanor much to my embarrassment and chagrin, that ''Methodist-Episcopal is a test used to check a patient s ability to speak. So that was why Dr. Paysinger kept asking me if I could say it! I felt so foolish then, the way I had responded to Dr. Paysinger. I reckon if you can speak well enough to say ''Methodist-Episcopal'' you can say about anything.

The Problem with VISITORS

I was so bored. I couldn't enjoy television because I couldn't comprehend well enough to understand what was being said or to follow what was going on. It sounded like one big jumble of words to me. I couldn't comprehend unless the words were said very, very slowly, one word at a time, in order to let them have time to sink in. Nor could I read. I would look at a word on a page and see it, but, like a person who has never learned to read, the word had no meaning to me. I enjoyed looking at the pictures on the Get-Well cards and being told who sent them, but being able to read or understand the messages on them was an impossibility.

Visitors would come and talk with each others and not include me.
If they would only glance my way occasionally, as they talked, so I wouldn't feel excluded. Once in a while there would be a word I could understand, and for a second I would think I knew what was being said. But before I
could focus my thoughts on the one word, the conversation would have moved on, and I would be lost again. I began realizing that if you can't talk yourself, you're no fun to talk to, so you will be left out of the conversation and you, in turn, will feel lonesome. It all went together......in my mind.

Speech Therapy Started

Penny N., a friend of Eleanor's who had majored in Speech Correction at Columbia College, was living in Columbia at this time. Eleanor contacted her and told her my condition so Penny would come to the hospital when my family couldn't be there and do little personal things for me. And because I was still so weak, she would open the little packets and wait while I ate the meal so she could help me brush my teeth afterwards. She was a dear daughter to me when my own daughters couldn't be there.

Penny and Eleanor wanted to begin speech therapy right away to get me started thinking and speaking again. Eleanor, when she could come up to Columbia, would sometimes point to a card with some picture on it ...like a cat or dog or a pencil or chair...and ask me to try to say it. I would know what the picture was, but I just could not think how to say the word. And Penny, when she came, would ask me to describe to her our new house, knowing this subject would be dear to me. What does the living room look like? How about the dining room? I could see, in my mind's eye, both rooms so vividly and wanted, so badly, to be able to describe how pretty each was. But I couldn't. So she would try to help by asking questions to which I could just nod ''Yes” or ''No”. If I might be able to think of one word every now and then she would exclaim, excitedly, that she was understanding what I was trying to say. That was the encouragement I needed to try again; although, my brain would tire so quickly and so easily and then I would feel worn out and even frustrated by having used my brain to concentrate for too long a time.

After Surgery: Struggling with Speech Deficiency & Paralysis

I was having a lot of trouble trying to manage with only one hand and that one hand being my left. I had always been right-handed. And because I couldn't speak and couldn't ask for help, it seemed I was always needing it. When meals were brought to me I couldn't get started eating until someone was sent in to help me open the packets. There were so many! A packet with the eating utensils in it, a little packet of salt, one of pepper, of sugar, a little packet of butter, of jelly. I needed my carton of milk opened and the butter spread on my toast. If someone came to help me, I could eat. If nobody came, most of the food was wasted. I, for the first time, was experiencing how it was going to feel to be wholly dependent on someone else. And I didn't like the feeling!

I was embarrassed to buzz the hall nurse when I wanted to use the bedpan because, try as I may, I couldn't think how to tell her what I needed. Many times I just lay there, frantically trying to think what to say to her so she would understand. But I could not think of the word. My mind was just blank. I pondered, and tried again and again. Then finally....finally, I thought of ''Pee Pee” the name Mother used when I was a little girl. So with great anticipation, I buzzed...............and waited...............and waited for the nurses station to answer....... Then by this time I would have forgotten the word I had finally thought of to say. I couldn't hold the word in my mind. (Even now in trying to write this story words don't come easily. I have been rewording and rewriting it time and time again for many years. Everytime I read it, I find that I am no longer satisfied with the way it sounds, so I rewrite it. I wonder if I will ever finish it!)

When I was finally told that from now on I could get up and go to the bathroom by myself, I felt that my woes were over. I would no longer have to buzz the nurse’s station and suffer the embarrassment of not being able to tell her what I needed. But I was soon to find out I had a problem equally as bad. To go to the bathroom by myself I would have to hold, with my one usable left hand, the sack that the incision drained into in order to keep the weight of the sack from pulling on the drain tube which in turn would tug at the bulky dressing and would rub painfully against the raw incision. So with the sack in my left hand and the right arm paralyzed, I had no way to tend to my toilet needs.

I Needed Speech Therapy, Physical Therapy, and Help

As I lay in my bed in the private room I was feeling especially lonesome and alone, even though Eleanor and Jack were sitting at the foot of my bed talking with each other. I didn't know what they were talking about, but I did know I wanted so badly to be able to communicate with them, to feel included in what they were saying. I could hardly hear them because of the bulky dressing partially covering my ears and making me feel separated from the whole rest of the world. In spite of this, I kept hearing, in whispered tones, little snatches of conversation, “maid .........secretary............therapy.......''. I didn't associate any of what I was hearing with me, however.

But Eleanor, at this time, was realizing that things were needing to be done! But nobody was taking any initiative! Jack seemed to not know what to do or where to turn, and it seemed to have been just taken for granted that Eleanor, being a Speech Therapist and the tumor being on the speech area of my brain, would know just what to do. In her job she had helped others, but this was different. This was more extensive and this was her mother! She didn't know quite where to begin, and she was scared!

What could be done for a person in Mama's condition? She knew Mama would need to be taken care of when released from the hospita1............., certainly a maid would be needed, and even maybe a secretary or a part-time secretary to help Daddy in his office so he could be freer to be with Mama when she needed him......and she would have to immediately try to figure out, and then put into a plan, what therapy would be best..............and do some investigating into health care programs that would be beneficial ....and lay out plans for a program of rehabilitation.

She felt the whole responsibility on her shoulders. And now that our mother-daughter roles were reversed she would be faced with tough love. She was frightened...... frightened by the awesome task of having to find ways to rehabilitate her own mother.

I Am Still Me, Though My Brain is not Right

Monday morning early
Visit: Jack (my husband), and Eleanor
Eleanor’s notes:
“Dr. Clark, one of four surgeons in with Dr. Paysinger, offered to order Physical Therapy for Mamma's right arm. Would order Speech Evaluation too if wanted, but doubted it would help. Said there had been lots of manipulation in ''that area'' of brain so might have problem with seizures.
Too soon for friends to see Mama. Needs rest.”

_____
Mon. 8:00 A.M.
Visit: Jack and Eleanor
Eleanor’s notes:
“Auditory comprehension greatly improved. When speaking to Mother, she comprehends well if she is rested and spoken to really slowly. Recognized names of friends who brought food. Wrote ''SLIPPER” with left hand when wanting bedroom shoes. Sitting up. More alert. Robe and socks on. Shook head “no” 2 or 3 times.”

Later Monday morning I was moved into a private room, number 616 West. I had no idea I would still be occupying this same room for three more weeks. When I arrived on the stretcher, I was so very surprised to see that there, on the bedside table, lay my little cross! It was like seeing an old friend. It seemed to be welcoming me. I don't know when somebody might have found it in its hiding place, but there it was now, ready to help me through some very trying times.

Even though my mind had lost all words, I could respond to what I was hearing with my eyes or with facial expressions, with ''handtalk'' or “headshakes”. I was aware of the things going on around me and would see, from under the bulky dressing, my family moving around and about my hospital room but......... what are their names??! I couldn't remember to save my life. I would ponder.-.and try to think, 'out their names just wouldn't come.

I hadn't realized how bad off I was or how bad off I must have appeared to others. To me, seeing myself from within, I was the same person.... the same Ashlyn, the same Mama, same wife, the same mind, personality, values.... unchanged.... it was just that some parts of me weren't working right, right now. But I think those who looked at me from the outside found my condition to be very grave. I was partially paralyzed! Couldn't speak! Couldn't think! Had a mental deficiency! And nobody knew to what degree I would, or could, be able to make a comeback!

Brain Tumor Removal Left Paralysis & Speech Impairment

Sat. 11:00 A.M.
Visit: Jack (my husband)
Notes taken by my daughter, Eleanor

“Mama's condition unchanged. No speech.”

I had no rude awakening about the fact that I couldn't speak or that my mind was incapable of digesting words except ones that had been spoken very, very slowly. The realization of it all seemed so gradual.
Dr. Harvey Atwill and at another time S. Miller, came to visit me in ICU. I truly appreciated their coming, especially with them not knowing in what condition they would find me. I knew them, and recognized them immediately, but I could not think of their names. I smiled. They talked. But the words they were saying had no meaning to me. Both were speaking normally, but their speech was too fast for my swollen brain to be able to process the words fast enough to get their meaning. It, to me, was a lot of sounds. Sounds that I couldn't comprehend. I was moved Sunday from ICU to Intermediate Care. I still was so very, very tired and weak, but my thinking had broadened a little, from just realizing that I had already had the operation to wanting and trying to remember names of people and of things.

Sun. 11-1:30
Visit: Jack (my husband), Sally(daughter who is a nurse), & Eleanor(who is a speech therapist)
From my daughter, Eleanor's, notes:

“Tumor benign! Right arm continues to be paralyzed. Can stick out tongue, lick lips. Can say mmmmm and mamamama. Difficulty with tongue elevation. Mother is still very frustrated with her speech. Sensitivity on right side of lips now (jello). Tremor in right arm. Sally thought she felt some resistance. Worked on matching word-to-picture. Daddy is bringing glasses and gowns.”

My feelings about all this: Eleanor, honey, please let me be.
I don't feel good enough to be trying to say mmmmm and mamamama and matching word-to-pictures. My mind won't think and my brain gets so tired........ so quickly!

Largest Meningioma Tumor Doctor Had Ever Seen

Physician's Report

Fri. 2:30 P.M. Dr. Dial

Notes taken by my daughter, Eleanor

“The meningioma was the biggest one he'd ever seen. Strange growth pattern. Grew up and out, more than in, all in bone of skull.

Almost into brain which made it difficult to excise without causing deficit. Is not changing 15% odds on us, but won't know anything for 4 or 5 days when swelling goes down. Will have pathology report in 72 hours.

All we know is Mother is awake, alert, and recognizes us.”

Fri. 2:30 P.M.

Visit: Sally and Eleanor (2 of my daughters)

Notes taken by Eleanor

“Visited Mama until 3:10. Held her hand. Showed her get-well cards.

Auditory comprehension poor. No effort at speech. Very tired.”