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.

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.

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.

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.

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!

I Couldn't Speak! after My Surgery

Very soon after my surgery, two of my daughters, Eleanor and Julie, visited me.

Eleanor’s notes describing their visit:

"Thurs. 5:30 PM after surgery – (Julie was with me )
Mother awake and very alert. Paralysis of both limbs on right side. IV in hand. Tube with blood drainage from gauze wrap around head running into sack. Urinary catheter running into another sack. Right lip drooping over teeth. Mother very responsive. No speech. Auditory comprehension for slow, simple speech. No articulation in mouth. Seemed aware of paralysis."