EPILOGUE- How You Can Help Your Loved One

EPILOGUE

Blessed are you who....

-understand that it is difficult for me to put thought into words.

-understand that I can not speak when someone else is talking, because I have to have auditory-feedback.

-Take time to listen when I speak, in spite of my speech problem.

-Never ''hurry'' me for often I need time more than help.

-encourage me and praise me for continuing to try.

-Ask me for any help, for my greatest need is to feel needed.

-respect me and love me as I am, and not as you, and I, wish I were.

-Make it known to me that in spite of my faltering speech, and my inability to use my right-hand fingers, and my having an occasional seizure, that I am still loved.... and still respected.

It all boils down to being a matter of how well I can adjust to and compensate for these handicaps.

Looking back now........ I have cried many tears, have had many low times, and my family and I have had to overcome some very hard situations. But through it all we knew our Lord was with us, watching over us, carrying us at times, supplying strength and courage, giving us hope in the midst of despair, loving us through it all, else we could not have gone on.

Every day was a struggle for me, emotionally as well as physically. For the first two years I was not living........ just existing. Then, as I became more comfortable with my speech and in using my left hand, life began to be a little more palatable.

After a few more years I no longer had to fight the emotion of boredom for I was having plenty to do. I had by now made a full life for myself. With God's help and very good therapists, I was able to live an almost normal life.

I can now speak, not perfectly, but I can speak. I can use my whole arm, except for my fingers, but I can use my arm. I can dress myself, except for tying some bows changing earrings, or hooking my pearls, but I can do everything else. I cut my own hair, and wash and dry it. I type on my word processor, and can write my story. I can ring handbells, with both hands now. I can swim, write with my left hand, drive a car, sing in two choirs, be Reunion Treasurer for the Class of 1945, be a volunteer at the hospital Gift shop and Vice President of our church circle. And best of all, Jack and I do our own house and yard work.

Yes, I do have a slight concern about having a third brain tumor, and, as a matter of fact, a slight concern about having cancer ever since Eleanor called my attention to an ugly-looking mole on the back of my arm which turned out to be a malignant melanoma.

Even if it means more adversity, I know now what I had to learn

for myself, that I want to trust God's plan for my life, whatever it may be. I am convinced He uses times of adversity and tribulation to draw us nearer to Him, so that we might grow in Him and become more conformed to His image.

I know He knows how to handle the grief in each of our lives better than we do.... if we will but take it to Him, leave it with Him and know that that's exactly what He wants us to do.

“My Father says, “Leave that to me, and keep a quiet mind.”

Then when we’ve have done the best we can, relax in Him,

Let Go and Let God so He can do what He needs do without our interference.

I am assured that God's will is always best for me, His child, because of His great love for us, as our Father. I don't know about you, but I feel that we are here on this earth such a short time, that while I'm here I want to love Him back, to obey Him, to know Him better, to please Him, trust Him, and to leave the outcome...... my outcome...... to...... GOD alone.

Leave the Outcome to God

''Leave the outcome to God,'' weighed heavily on my mind. One day, while walking around the pond, I asked myself, “Why wouldn't God want to heal me?” I thought He always wanted the best for His children and how did He possibly think I could be of use to Him as I was! Not able to think or speak well and my right arm just dangling by my side. I was sure He would want to make me whole again, and wanted Him to so badly! Then, I began remembering what I had written, ''.....God singles out people with disabilities for a very special purpose. They illustrate how when we are at our weakest, God’s grace and power are at their strongest.'' I knew this to be true because in II Corinthians 12:9-10 Paul writes that the Lord, in response to his asking that the thorn in his flesh be removed, answered him with, ''My grace is sufficient for you, for my power is made perfect in weakness. I am proud of my weaknesses'' says Paul, ''because they mean a deeper experience of the power of Christ. My very weakness makes me strong in Him.

I certainly felt weak... and small. This illness was too big for me to handle by myself. I knew God loved me as His child and I realized now that He could handle my situation better than I could. Then, in remembering the Bible verse, Psalm 55:22, “Cast your burdens upon the Lord and He shall sustain you”. I cast my burden, my condition, on Him, onto His shoulders, from mine. I gave it all to the Lord and I believed that He took it.

Now our wants and burdens leaving

to His care who cares for all?

Cease she fearing, cease we grieving;

at His touch our burdens fall.

S. Longfellow

And He did sustain us, my family and me. He will sustain you, too, with strength and light when troubles or burdens come your way. Don't worry prematurely when you have neither strength nor light. But trust Him. And He is sure to supply the strength, the light and courage, when you need it, as He has promised.

I realized finally what God wanted of me. He wanted me to tell Him I trusted Him with my 1ife..... no matter what the outcome would be..... no matter whether He would heal me or not. So, in childlike trust upon His will, I surrendered to Him, yielding myself to His control to let “the Lord do that which is good in His sight”, I Chronicles 19:13. I accepted it from the hand of God and doubted not that it was good. I knew He expected me to do the best I could with my situation, with my therapy, etc. but then to trust Him to handle the things beyond my efforts and my control.

I had gone from resistance to complete surrender to His will.

The circumstances of my life were not altered. But I had taken my burden to the Lord, who sees the whole, over-all picture, and handed it over to him for his management, and believed that He took it and that He assumed all responsibility, and the worry and anxiety. No longer would I have to, by myself, fight the battle, day in and day out, of not knowing whether I would ever be able to lead a normal life again. He had the responsibility now; I gave it to Him to let Him do with what He knew would be best. He had my trust now, and I felt free to relax in Him trusting Him.

I felt a peace now... an inner peace... that only He can give....

when I LEFT MY OUTCOME TO GOD!

1, 2, 3 –Leave My Outcome to God?

When the mail came that day there was another card from Polly A. She and Harvey both had been so thoughtful about remembering me. I was still having to struggle with comprehending messages, but I would try. So I read very slowly:

1. I put my life in God's hands.

2. I will trust God.

3. I leave the outcome to God.

I couldn't take it all in with just one reading, so I read again.

1. I put my life God's hands ...............

I remembered having put my life in God's hands many times before and had felt the “Blessed Assurance Jesus is Mine”.

2. I will trust God .........................

I felt I trusted God, the best I knew how. But did I really trust Him enough to have put my life in His hands...to let Him do with my life whatever He chose to do? Something inside me wanted to trust God that much but I was afraid to. If I were well? it would be so much easier to trust Him that much. But I was not well! And suppose He didn't come through! I wanted more than anything, to be able to lead a normal life again....

and not have to be dependent on others the rest of my life!

I didn’t doubt for minute that God could make me well.....after all, He had made me in the first place. And I realized how ugly my body would be if He hadn't healed my many cuts and bruises time and time again through the years. I knew God could fix the things I had wrong. But, would He?

3. I leave the outcome to God...................

What? I didn't know about that now, leaving my outcome to God! I didn't know whether I could count on God that much or not. And I was making pretty fair progress on my own with all the good therapy I was getting. It, even, might not be “according to His will'' to heal me and I didn't think I could bear that. I wanted to be normal again, able to play tennis, to sing in the choir again, to do my treasurer job at the church.

Driving Again-a Year after Brain Surgery

Now that the protective plate for my brain had been put in, and the incision healed, Jack took me to Superior Motors and helped me buy my '84 red Buick which I loved and have driven for many years since.

I wouldn't have to feel trapped anymore. I could get out of the house! I could go! But it had been so long since I had driven. So Jack called Gene B, a student driver instructor, to check my driving out before driving by myself. I drove slowly and with extreme caution; driving at first felt so unfamiliar. Gene passed me in spite of the fact I had to use my left foot on the pedals and drive with my limp right hand in my lap.

Treating the Infection at Home

It was a nasty complication.....infection had set in and would have to be treated intravenously. After three days in the hospital Jack was given a choice. I could remain in the hospital to have the infection treated or Jack could bring me home and treat the infection himself under the supervision of the Hospital Pharmaceutical Inc. Health Services which is a private home health service. They would supply the training, the medicine bags, the tubing, the needles and everything that would be needed. Jack elected to bring me a home. He would have to drive me back to Columbia every week to pick up another supply of medicine and to have a new Heparin lock inserted in my left arm which would allow him - to inject the bags of antibiotic medicine.

His instructions were:

1. Get bag out of refrigerator and warm it up

2. Replace old bag with new bag

3. Get rid of old medicine in tube before you let new medicine in.

4.Let new medicine down in tube- get rid of air bubbles in tube

5. Change tube each day new medicine in bubbles in tube

6. Use saline solution to clean out rubber end of IV

7. Put needle in IV.

8. Put heparin solution in IV.

9. Put saline solution in IV

Use 4 needles a day.

He makes a note to himself: Every time I put needle in rubber end of in, I wipe it with alcohol

This procedure every six hours, 2 PM, 8 PM, 2 AM, 8 AM, would take about 20 minutes and after eight weeks finally knocked the infection out.

We were both so glad to get back to sleeping through the night.

Complications from the Skull Replacement Plate

About a month later, because I was unable to see the top of my head in the mirror, I asked my daughter Sally, who is a nurse (on one of her many visits home to be of help to me) to please look at the incision and see why it continued to itch. She took a long look at my scalp....... and then told me she could see the plate.

She scrutinized the incision further and saw that it was oozing.

It hadn't healed. Evidently, some stitches had popped loose making it possible for Sally to see the underlying plate. So, back to the hospital again to restitch my scalp. But due to the scarred tissue left from the removal of the first brain tumors the scarred tissue left from the removal of the second brain tumor and scarred tissue from the plate just put in, it was terribly hard to pull the two sides of the incision back together. The surgeons had not been able to catch but one of the layers of skin.... which leaves a hole in my scalp.

Skull Replacement Plate=Slightly Less Paralysis

Dr. Paysinger seemed bewildered as to why I was showing signs of improvement in my right arm after the plate was put in. Instead of it just hanging limply by my side, I could now lift it slightly. I told him I was sure I knew why... Because, before the plate was put in, my scalp lay flat on my brain due to the large amount of diseased skull bone that had to be sawed out (making me look like a cone head) and was, evidently, putting a little pressure on my brain. But after the plate was put in, the plate lifted my scalp off my brain and the pressure was relieved.

The Plate that Protects my Brain

Even though the edges of the skull bone had been waxed during the removal of the tumor, the bone still felt sharp under my scalp. If I tried to sleep on my left side, where most of the skull had been sawed out, it hurt . If I tried to sleep on my right side, my paralyzed right arm would be cramped and send pre-seizure sensations. So since it was so hard to get comfortable, I had to take a sleeping pill and then sleep in the one position , on my back, for the twelve months until the neurosurgeons saw fit to go back in and put a plate in as a protection for my brain .

It was February, 1984, one year after the removal of the second brain tumor and about time for my birthday again. I would be 56. My head was being shaved for the third time and a plate would be surgically inserted. At last I would have protection for my brain. Because of the incision being slow to heal, I ended up having to remain in the hospital for nine days.......

Finally, Jack could take me home from the hospital to recover and to let the incision finish healing.

Disability Struggles Eased by Loving Friends!

...but friends were all so encouraging and meant so much to me.

By now I was speaking in short phrases and was slowly beginning to feel more comfortable having one-to-one conversations with friends who came to visit. It has been such a long time ago and I have forgotten so much.... but I must mention a few:

Sara S would come over to my house with her music books and play piano so she and I could enjoy trying to sing together.

One of these times she asked me what she could do to be of help to me. I hated to impose my reading on her, but I needed the practice and she had offered the help. It was a lovely day so we went outside to the terrace with the book and Sara listened to me laboriously read aloud. The pace was agonizingly slow. How slow? By the time I would get to the end of the sentence I would have forgotten what the beginning was. Sara listened intently though, needing to help me only a few times.

Charlotte F brought some religious, audio tapes for the two of us to listen to since she and I had been in a very meaningful prayer group with two other women for ten years before my first brain tumor. We soon gave up listening to the tape because I couldn't comprehend what was being said, so we moved on to something else. She had brought some duets so we could try to play the piano together. I was to play with my left hand... but I could never remember that a note had been made a sharp, or made a flat. I would play it as a natural every time; I could not remember. Time and time again I would play the note as a natural. You can imagine the sound. Poor Charlotte! It was certainly proof of friendship.

And Nancy A who was so active in and responsible for our being able to contact Dr. Billy Whetsell, Jr. at the time of my set back when we were so distraught.

Frances B, friend and a beautician, voluntarily came to me when I was still weak and not yet leaving the house, to trim my hair as it started growing back. After the trim we would go to the sun porch where we could sit down together so she could hold my hand to clip my fingernails. These visits meant so much to me, but she would accept no pay for her work, her time. I later started cutting my own hair, with my left hand.

Doris V was so generous to let us use her pool for both my exercising and swimming. Jack would take me and we would swim; Jack, normally and I, with my dangling right arm held beneath my body, would overhand with my left hand and scissor kick with my feet. I felt reasonably secure swimming in this manner. Then winter came and Anna W was so kind us use her indoor pool.

Emotions Resulting from My Brain Tumor

I had no confidence in myself now....
no self-esteem or sense of self-worth.
I didn't seem to “fit in” anywhere, anymore. I was slow; normal, busy people were fast and I was not able to keep up.

Self-esteem is a self-reinforcing characteristic. When we have confidence in our ability to think and act effectively, we can persevere when faced with life's challenges.

Talk by normal, busy people seemed frivolous and unimportant to me now. I was fighting to get my normalcy back while others were conversing about what to serve at a bridal luncheon or what color fingernail polish was that? I was struggling to be normal again and didn't know from day to day whether I would ever be able to speak right or able to use my right arm and hand again.

I was so insecure I hated for Jack to leave me and I felt like he left me so often to go play tennis... He would play at night and most every Sunday afternoon whether he had planned something for us to do together or not. If anybody called, he would leave me, so disappointed, and head out the door with tennis racket in hand. He couldn't understand why I couldn't be more flexible as he would say. The solution, in my disappointed mind, was to never plan anything to do ahead of time.

When he played tennis at night I was frightened. Suppose somebody were to come to the door! Because of the set back I felt so helpless. If only one of the children lived at home, I'm sure I wouldn't be so lonesome. But they all lived away. It was so quiet..............at night............................by myself.

I was totally dependent on Jack and was afraid I might lose him, to either another woman or to his tennis or to whatever he might desire more than coming home to me. I knew I couldn't compete with anybody or anything or any situation; I had no fight left in me. I was pitiful... like a wounded little puppy dog. He might very well find something more exciting than to come home to me.

I felt a hurt go through my heart. Many a night I would cry myself to sleep.
It is hard for a busy person to comprehend how one feels who has nothing to do. I had nothing to do because I could do nothing....nothing with which to keep myself busy...nothing to be interested in...nothing to make my life feel worthwhile....nothing to give a sense of accomplishment or meaning.

I was so bored... until Julie brought me the stand for counted cross-stitching. Then I would sit by the hour and try to count and stitch until I had made twenty little Christmas tree ornaments to give to my friends.

For a normal person the brain is the seat of consciousness, thought, memory, reason, judgments AND emotion. But there I was, incapable of thinking and was overloaded with emotion……..

Meningioma Brain Tumors-Statistical Recurrence

We, at this time, thanks to Nancy A, were in touch with a neuropathologist, Dr. Bill Whetsell, Jr., and learned from him that a meningioma tumor has about a 15% chance of recurring and is more likely to do so in women. It was too late now; I had already had the recurrence. Someone should have made us aware of this sooner.

We learned also, from Dr. Whetsell, that
''Ashlyn has some active meningioma cells that could conceivably result in a third tumor.” Fear gripped us. He strongly recommended that
“Ashlyn's condition would need to be watched closely”, so Jack and I realized then that I would need to have, at least once a year either a CT Scan or an MRI (Magnetic Resonance Imaging that also lets doctors see inside the skull). So every year at this time, there is a certain level of anxiety in the uncertainty of what the scans might show. But, each time so far, it's been music to our ears when are have heard the radiologist say, as he compares the new scans to the previous ones, and we hold our breath, “I see no changes.” What an overwhelming sense of relief! No third tumor! Thank You, Lord!

Then Jack and I while on our way to the Waffle House, would talk about ''What if something had shown up on the scan? It would have turned our world topsy-turvy against. No change! Beautiful words!

Seeking Answers to My Set Back

Jack called again for me, to make an appointment with the neurosurgeon in Columbia.

“This is Jack Gray. I'm calling for my wife, Ashlyn.......'' (He would have to make many a call to the doctors for me; I find it extremely hard to try and explain anything.... especially over a telephone.) Jack was told that the neurosurgeon would need a CT Scan, in order to determine if there had been any change since the last scan.

O-o-oh! A hold up! We needed to be doing something quick! Time was of essence! I was losing more and more ground every day.

At long last, we drove to Columbia for the appointment carrying the CT scan with us. Jack, again, helped me tell Dr. Paysinger how much I had regressed. But Dr. Paysinger, too, had no explanation as to what was causing my worsening condition or what we could do about it. The situation seemed desperate. We just had to get in touch with somebody who can tell us something! Dr. Paysinger knew of a Dr. Cook at Duke University Medical School that might be just the one who could tell us what was causing the set back.... and what to do about it. So, with great hope we decided on the spur of the moment to leave the next day for Durham , N .C .

Jack, with his expectations, and I, in my deteriorating condition struck out in a van he had borrowed to ensure a more comfortable trip in case I needed to lie down. Surely the doctor at Duke would have some answer!

But, to our disappointment the Duke doctor too, had no explanation..... except there was a possibility that maybe a small blood vessel had ruptured in my brain, which would be causing a lessening of my motor control on my right side, but Dr. Cook was not able to tell us anything that could be done to help my condition.

I thought back.... and remembered that bad cough I had had for such a long time. Possibly that had caused my set back. But still the Duke doctor didn't know what could be done about the regression. No remedy! I felt we couldn't win for losing! No one had been able to tell us anything. So we returned home from Durham with a sick feeling in our stomachs, not knowing whether I could progress out of this stage or not. There was nothing that could be done about my condition; I was going to have to start again, from scratch. We would just have to make, somehow, the most out of a bad situation. I felt I had nothing, at all, going for me. These were depressing days....for both Jack and me. We were having to try to adjust to a completely new, different and unwanted life-style.

SET BACK on My Recovery

It started gradually....almost undetectable. It didn't seem like much at first but I began feeling uneasy about it. Then I sensed something very wrong. I began experiencing lack of energy and weakness.....persistent weakness.....accompanied by general exhaustion. It now became a certainty; I couldn't believe what was happening. This just couldn't be true! What was wrong? I could feel myself getting worse by the day.

Jack called for me, and then went with me to an appointment with our family physician. Jack could explain things about my regression to the doctor that I would be unable to get across to him. The physician checked me but said he had no explanation as to why the regression was happening or what could be done about it.

We were devastated! At the same time my right arm would no longer reach out as it had been able to do just a week prior to this, or be able to swing to-and-fro as I walked around the pond. Now gradually, my arm was beginning to hang limply by my side, becoming paralyzed again.

(It would stay this way for nearly a year and during this time, as far as usage, it might as well have been cut off.)

And then I began finding that walking was becoming more and more difficult.... and exhausting. I could hardly walk without assistance and couldn't walk from one chair to another without feeling completely drained. My legs felt like they had lead in them. Even without exerting, I felt exhausted all the time. In a period of about ten days I was now dragging my right foot and my right arm was like that of a rag doll. I was losing it all....the little progress I had just made. It was a nightmare.

Neurosurgeon's Progress Report

GRAY, ASHLYN

4-5-83:

“This lady returns today for her first checkup following a craniectomy and removal of a meningioma in the left frontal parietal area. Since going home, she has shown a great deal of improvement and walks in to the office unassisted. She is speaking better and using the right hand better, but does so when she is rested and not excited than she does otherwise, according to her husband. This is expected. She is getting physical therapy and speech therapy at this time. She has no headache, nausea or vomiting and except for the frustrations with speech and decreased strength in the arm, has been doing well.

EXAMINATION: The scalp is well healed. The craniectomy site is obvious and is soft and pulsating. The patient is alert, oriented, with a significant aphasia at this time. She can communicate to some degree. Speech is in short phrases and words, however, She appears to receive without difficulty.

SENSORY: Sensory testing over the trunk and extremities reveals some deceased sensory perception over the right side.

MOTOR: Motor testing reveals a right hemiparesis, with the right arm much more involved than the leg. She can ambulate fairly well without assistance but still has marked decreased use of the arm. This is improving according to her husband. She can elevate the arm and hand above her head and has fairly good flexion and extension. She has a very poor handgrip. Reflexes are increased on the right side when compared to the left.

COMMENT: Mrs. Gray is doing well. She still has some obvious neurologic deficit, but has improved a lot since her discharge from the hospital. I think she should continue working with her physical therapy and speech therapy, and is encouraged to do as much as she can at home. She has not had any seizure activity, but is to continue her anti-convulsant medication.”

B. Daniel Passenger, M.D.

BDP/Cm

This was my first follow-up appointment with Dr. Paysinger and I had been able to walk into his office unassisted. I had been taking long walks and getting my strength back. I could now elevate my right arm above my head and use my fingers well enough to pick up cough drops by the paper wrappings. I was beginning to comprehend if spoken to very slowly and able to use short phrases. I was making very good progress and I was proud of myself. But I was totally unprepared for what was to happen next.

MY DEAR FAMILY- Everyone Helped

Jack was having to do almost everything for me.... including helping me get dressed. He would have to tie my bows, help me get my hose on, hook my pearls, change my earrings, get my bra hooked........ In fact, I found a little note I had written at this time describing my situation: Every day Jack would have to hook my bra for me. I hated to have to call on him every time I wanted to get dressed......when often he would be busy in his office. I didn't like having to be dependent! I finally progressed enough to be able to pick up one end of my bra with my good hand, switch it over to my bad hand for holding purposes, catch the other end with my good hand and take it around my back and on to my stomach. There I would be able to fasten the hooks with my good hand, then turn the bra around and stick my arms through the straps. I was so happy. I had crossed a milestone! And had come one step closer to independence, even though I had to lean on Jack for just about everything.

Jack was so good about doing things for me. He bought me shoes with velcro closures, so no strings had to be tied. He called the doctors for me and explained things to them since I couldn't. He was, and still is, so much help in preparing a meal, especially the Sunday morning eggs and cutting up vegetables for salads.

Because I love the yard so much, it made me so happy when Jack and John decided to outline the flower beds in the back yard with long boards that bend easily to separate the beds from the lawn.

Julie and Sally alternated weekends to come be with me and be on call for anything I needed done..... to cut my fingernails or toenails, to shave my legs or under my arms. They took their responsibility very seriously and came religiously even when Julie had to make the trip with her baby, Lane and during her pregnancy with baby, Nathan. Among other sewing jobs she did for me, Julie sewed velcro on a number of my jackets so I could close them by just touching the two sides together. This was such a big help since I could neither zip nor button.

And as you know Eleanor, very conscientiously, took the responsibility on her shoulders, of lining up Speech Therapy and other health care programs after making suggestions to Jack as to what I would need in the way of help when released from the hospital.

Helpers Were So Appreciated

We were extremely thankful for three excellent therapists and we realized how fortunate we were to have adequate insurance to help pay them. I had a wonderful husband, four precious children, and a maid, Myrtle, who all helped me with anything I couldn't do myself. They were dedicated to helping me recover, and were making it possible for me to devote all my time and energy to getting well and back to normal.

We had a lovely new home that backed up to a pond which afforded me a great place to walk and recuperate and friends who encouraged and cared about me. I had every advantage! And I felt truly sorry for those that didn't.

Several months after my surgery, I developed a real bad cough that hung on week after week. It scared me because it hurt my head to cough and I was afraid, with so much coughing, I might be popping something loose in my head. I had no protection for my brain... no skull bone...no plate...nothing between my scalp and my brain on the left side of my head. Without protection, I was terrified of maybe stumbling and falling or of being in an automobile wreck.

On my recuperative walks around the pond I had to be so very careful. I was unsure of my footing because of the uneven ground, so I had to watch my feet as I walked to guard against falling. No looking up at the gorgeous pink clouds as the sun was setting in the western sky. No looking ahead to the pond with the little yellow blossoms on the many lily pads. My eyes had to be glued on my feet.

It was not known at this time but it would be as much as a year after the removal of the brain tumor until the protective plate would be inserted, that would substitute for the bone that had been removed for my surgery.

A Typical Day

Breakfast

Slowly work at getting dressed (so slow with just one hand)

Appointment with either speech, physical or occupational therapy

Lunch

Nap

Walk; do exercises; do homework

Supper

Do cross-stitch with TV going

(And the same the next day, and the next day, and the next.)

It is impossible for a normal, busy person to conceive of the often boring, lonesome life that is felt by a handicapped person.

My life consisted of hardly anything but therapy and that was about all I had to look forward to. I loved the appointments with Teresa at the hospital, or with Henri or Mitzi who would come to the house. But when, for some reason, one of them would have to break the appointment I would be so-o disappointed, so blue and depressed. It meant I would have nothing to do the whole day and that I would be so bored. It meant, because I knew from past experienced that the hours.... would.... drag.... by.... ever....
so.... s1ow1y.......................and I.......would have......
nothing to do.

Occupational Therapy

I don't remember just when I started occupational therapy with Mitzi W, but I do remember a number of times falling back on my bed pillows, exhausted, from just trying so hard to make the muscles in my fingers move….but try as I may, they wouldn't.

In time, I could raise my arm about shoulder height and was able to use my fingers well enough to pick up cough drops by the little paper wrapping with my index finger and thumb.

I remember the time when I first was able to clap normally.....to

use both hands.....instead of just beating on a flat surface, or beating on my leg in order to make the clapping sound. And then when I could first cup my right hand enough to help rinse my face.....instead of trying to rinse with just one hand.

My experience….

How does it feel to be paralyzed?

Hand & Fingers - Feels like rubber bands around hand & fingers that prevents them from being able to move.feels heavy. Feels dead. Not a part of my alive body. Colder than other hand. Very little feeling when touched. Can't tell whether I have moved it or not; have to look to see.

Arm - Numb & heavy. Feels like rubber bands around. Colder than other arm. When trying to play tennis the arm bounces around and won't stay put so I stick it in the elastic of my pants to hold it.

As far as balance is concerned, it's like having just one arm.

Mouth -Feels funny when touched and can't tell quite where. Feels numb. Feels swollen, bigger than other side but doesn't look that way.

Can't eat a carrot, apple, corn on cab, etc.
Will bite lip while eating.

Leg - So tiring. Feels heavy.

Can't feel what position it's in until you look & see .

PHYSICAL THERAPY

By this time, my leg had gotten well from the Phlebitis and I could at last say “Goodbye'' to those tight, white, support hose and Jack would no longer have to line up nurses to give me the Heparin shots. I was making progress. I could now start physical therapy at our Orangeburg hospital.
Jack would drive me to the hospital and then stay the hour to learn from Teresa G what exercises I was to do at home.

-Push arm out.
-Back to side.
-Elbow to stomach....

Most of the time I couldn't comprehend what was being said but even if I had, I couldn't have remembered the exercises two minutes. I didn't at all mind doing the exercises because I had always been an active person, but it was no fun now since I couldn't count well enough to keep track of how many I had done plus my muscles wouldn't do what I wanted them to.
The paralyzed muscles in my right arm made my arm feel heavy and would hardly work at all. My whole arm felt like many, many strong rubber bands all up and down my arm were restricting all the muscles from moving. I would have to muster up all the strength I had to work against the rubber bands...........against the paralyzed muscles.

My right leg muscles made my leg feel as though I were ''trying to run through wafer's”, as Patricia N so ably expressed it in her book As I Am. There was no physical pain.... but just the pain of knowing that the muscles wouldn't do what I told them to do. They just wouldn't work. That's paralysis.

MY SPEECH NOW

Apraxia of speech - a motor/speech disorder which makes voluntary/spontaneous speech difficult in that to speak correctly requires motor planning.

Example: I have to depend on being able to hear myself when I speak (auditory feedback) for my motor planning. I have to be able to hear my own voice as I speak which provides me with the auditory feedback as I hear myself speaking. It is necessary to hear myself speaking in order to be able to think (motorically plan out) what I need to say next. The difference between you and me is that now I have to think about how to pronounce the words. Then I can perform the motor act of consciously saying it.

Therefore, I can't think how to speak when another person is talking or when there is a lot of background noise such as loud TV, or a crowded restaurant, or noisy party. They all continue to be a distraction to my thinking ability. In fact, I couldn't get my telephone number to come to mind when signing our church register, just because our preacher was preaching his sermon.

At times I might say ''No'' when I mean to say “Yes'' or vice-versa.

But when I hear myself make the mistake (by auditory feedback) I can catch myself and quickly change my response. I am dependent now on having to be able to hear myself as I speak without noise interference.

As I became more confident in my speaking I began enjoying communicating, one-to-one, with one other person, but I was at such a disadvantage trying to talk with more than one that I let myself be shut out of the conversation and would just remain quiet. That's no fun though, not being able to share myself or my thoughts to add to the conversation.

It's still an effort to try to explain things to others, even though I know what I want to say. I seem to not be able to find the words I need to make myself understood. In trying to communicate it always seems to help me if I can make eye contact with whomever I'm speaking.

Because of my speech, my paralysis, and my deficit, I was secretly pleased that most people knew of my second brain tumor.

Instead of having to be embarrassed if I failed, I felt that because of their knowing, people would understand.

Speech Therapy: Reading & Counting

Henri started me with the simplest of exercises, Matching Beginning Sounds......more like child's play, but it wasn't that easy for me, even though I could get them all correct.

Then after that came recognizing words and pronouncing them, then using words in sentences and learning to spell them. I had to relearn the days of the week and the months of the year. At the same time I was learning to tell time again, to recognize numbers and be able to say them, to count, and to add, subtract, multiply and divide. It would be a poor speech time if I were tired or frustrated. I needed a nap every day.

It became my practice on car trips to read the numbers on a license plate as the car passed us, and to read signs on the sides of the highway while Jack drove along.

“Slippery when wet”,

“Ice on bridge”,

“Speed Limit 65”,

“Exit 119” (some signs had both words and numbers).

When I would take my recuperative walks on the golf course, I would practice counting to myself in rhythm with my steps: 26, 27 28, 29........ but I would have to pause while I tried to think what came next. Finally, I would think of 30.......31, 32, 33, 34, 35, 36, 37, 38, 39....... and again my thinking would be so slow. I would walk many steps while trying to think of 40. And I had to go through the same with 50, 60, 70, 80, 90.

I wanted so badly to be able to read to my grandchildren. They were only children; they wouldn't care about my speaking being not perfect. So they chose one of their favorite little books, My Little Red Bicycle and we cuddled up on the sofa together. I found I couldn't read with any expression in my voice because I was having such a hard time just trying to read the word itself and my words were so dragged out I was not able to hold their interest. They soon got restless and one by one they climbed down. I ended up on the sofa by myself.

SPEECH THERAPY for Aphasia

SPEECH THERAPY

It's something I took for granted.
I used it every day.
If I had a thought or an idea
I could open my mouth and say, “….
Now speaking doesn't come easy,
And I can understand why
I get so frustrated and embarrassed,
‘Cause on my speech I can't rely.


At Eleanor's insistence and my reluctance, Eleanor slowly walked me out from my bedroom to the table in our family room where she introduced me to my speech therapist, Henri C. We all sat down. Immediately my lower lip started quivering in my apprehension of what would be expected of me. I couldn't talk! And I didn't feel good....... and I didn't want to be there. Henri chatted a little to help me feel more comfortable with her while my eyes filled up with tears. Before long I was weeping and the session had to end. I was embarrassed. And the whole experience was very frustrating to me.

But the frustration and weeping didn’t last long. At the next session Henri and I became fast friends. She recognized that I had become aphasic and apraxic of speech in the removal of the tumor that was pressing against the speech area of my brain.

Aphasia of speech - the impairment or loss of the ability to communicate through speech or written language due to dysfunction of brain centers.
This caused:

(1) Loss of memory for words.
Example: when I tried to think how to tell the nurse I wanted the bedpan.

(2) the inability to name objects and people.
Example: when I couldn't even think of the names of my two daughters when they visited me in ICU. I finally got where I could remember the names of Julie? Sally? John, Jack but it was months before I could think of Eleanor's name.

(3)The inability to understand the spoken word.
Example: when Harvey A and Sally M came in ICU to visit me.

(4)The inability to understand the written word.
Example: when Eleanor wanted me to read the Get-Well cards and I couldn't read.

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.”