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……..

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 .

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.

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.