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.”