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.

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.

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.

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.

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 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!