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.

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.