Chapter 1
To get a good look at the Otto-King family archives, go to
Chapter 2
The following is from my father, John R Otto’s Memoir’s. This article is being used to launch a page for my personal blog, Artsy Fartsy (អាភៀន), called "The Otto-King family page." These are not in the order in which they were written. My father was not a professional writer and I chose not to rewrite very much of this. I chose this to start off with because it includes both stories of my father and my brother Paul Otto. Both are now deceased:
-Steve Otto
PAUL
By
John R Otto
September 20, 1978-
We had just gone to bed. The phone rang at
about 11:20 PM. We had been to a Marriage Encounter meeting and volunteered to
be the “back-up” couple, to fill in the head couple’s absence. Paul had been in
a serious accident and was at Osteopathic hospital, (now called
When the doctors started using words like
“quadriplegic” we were filled with fear, dread and denial. The caretakers at
the hospital were loving and caring, but woefully ignorant of treatment for
spinal injury. Such care was often wrought with fear and superstition. At that
time, when doctors were offering hope and promise to patients with incurable
cancer and such, they defined spinal injury as hopeless and incurable, and went
out of their way to avoid “false hope”. The caretakers allowed the spinal cord injury
to swell, causing further damage. After two or three days he was found to have
some mild reflex motions in his legs, but nothing was done to enhance them and
they disappeared. Also, they kept him immobilized, allowing decubitus ulcers, (bed sores), to form. His injury was diagnosed as at
C2/C3. (Between the second and third cervical vertebrae). The doctors agreed
that there was no visible evidence that the vertebrae had been damaged. They
theorized that they were displaced, then returned to their original positions.
After about four weeks we had him
transferred to Wesley hospital’s spinal-cranial unit. They were more
knowledgeable and more proactive in their treatment. The first order of
business was to get his strength up, treat the “decube”, loosen his joints and
muscles with range of motion and build up his body. (He was six feet tall and
probably weighed less than 100 pounds.) During his ten months of confinement, I
don’t believe there was a day that he didn’t have at least one of us to visit
him. He would get grumpy and his mother would scold him and remind him that his
caretakers did not cause his predicament. People would say, “ how can you scold
him?” She would say, in effect, because I love him and he is the same person
now that he always was.
When he arrived at Wesley he had several
decubes including one on the end of his spine, which formed a crater about the
size of a hockey puck, which was not responding to treatment. They were
considering surgery, unsure of how it would turn out. That Sunday, Joan asked
the priest to have the congregation pray for this special intention. The next
day, when we got to the hospital they announced that the sore was beginning to
heal.
Paul was on a respirator, connected to a
trach, ( having had a tracheotomy), thru a flexible tube. It was
removed to “suction” him. (insert a catheter down his throat to remove mucous.)
When the tube was removed for this purpose, an alarm went off. One morning we
got a phone call to hurry to the hospital. Paul’s tube had popped off and no
one answered the alarm. When it was finally replaced, he remained unconscious
for several hours and we didn’t know if he had had brain damage, organ damage
or what. Apparently there was no damage at all, but I think they expected a
lawsuit and they apologized profusely. Joan often said she prayed that there
would be no brain damage, and when there wasn’t any, she regretted not asking
God for more.
The next half year dragged on, routine,
but never boring. One of the “omnipotent” neurosurgeons inserted a phrenic nerve stimulator in his chest, intended to activate the
nerves which make him breathe, but I’m not sure anyone there knew how to check
it out. Doctor Snyder said he knew how to install it, but didn’t know how it
works. We found out a lot about doctors during this ordeal. Some think they are
God-like and some think they are God Himself. The experts said Paul would be in
denial, and then depressed and suicidal. When we told him this he said it never
occurred to him to try suicide, and besides, there was no way he could do
himself in, in his condition.
As Paul got stronger, different things
were tried. He had been fed through a stomach tube. The glop they gave him was
blue. I don’t know if it was intended, but when you saw something blue leaking
from his trach, you knew from whence it came. When
they proposed to feed him by mouth, they warned him that terrible things could
happen if it went down wrong. They didn’t know his mother had been giving him
food and drink for several days. Later, when I went to
As Paul progressed, he got a wheel chair
with backrest and a portable respirator and battery, and got to go about the
hospital and go outside for short periods. It appeared that Paul might not
spend the rest of his life in the hospital. But where and how would he be cared
for? In shock and disbelief, I found the answer was “at home”. While I was
still in shock, Joan was making plans. He was brought home for a couple of
“training” visits. Faster than I thought possible, the house was made
accessible. The walk-in closet to his bedroom became a bathroom/shower, the
lavatory became a hallway and the main hallway lost a wall. The stairway to the
front porch became a ramp, a new sidewalk was poured, a used van was purchased,
a wooden ramp built for it and equipment, (a portable hydraulic lift, a full
size respirator and a modified raised water bed, etc.) was purchased with the
help of the J I Case insurance plan. I surprised myself by doing much of this
work myself, with the help of my sons. We were told at the hospital that people
in his condition usually lived for about two years and spent much of that time
in the hospital.
So Paul came home to almost 13 years of
“intensive” care. I “ranged” him twice a day, Joan and the nurses a couple more
times. Joan was in charge of home care and “nursing” the nurses. Every Tuesday,
Joan and the nurse would hoist him in his net-like sling, wheel him to the
shower, put his portable respirator behind the shower curtain, and Joan would
give him a shower. In the hospital, at first, Joan would not even watch while
he was being suctioned. When he was home, she not only suctioned him, but
changed his trach as well. They sometimes leaked, and needed to be changed
periodically to prevent infection. At first, as instructed, we took him to the
emergency room at Wesley to have them replaced. About the second time we did
this, we found the doctor carefully reading the instructions before starting,
at which time Paul decided “we can do this”. Some of the nurses nearly fainted
when Joan first announced, “Now we will change his trach”.
We had nursing help for about eight hours
a day. Detailed, comprehensive schedules& procedures were setup by Joan and
updated as required. We had a parade of nurses, working part time. It took at
least two and preferably three to fill our needs. We learned from them and they
learned from us. There was Ann, a Quaker who grew up as the daughter of a
missionary in
Bernice[2] is
hard to describe. She was a burly middle- aged woman who came on like a herd of
buffalo. She was a very good nurse, But… Her attire was strictly Goodwill
Industries. She was a “jack-of- all- trades”,
Then there is Berdina. Berdina is a
loving, caring truly good person who was often mistreated by the ones she loved
the most. She was intimidated by Joan at first, but learned to deal with her
and the rest of the world. She went on to become a dear friend to both of us as
well as our head nurse. When Paul died, she was traumatized and ill for months.
She still is one of our closest friends.
Paul’s plight was published in the
newspaper also. Bob Getz, a feature writer for The Wichita Eagle did
a story on our situation, and a fund was set up for contributions. We got
several thousand dollars, which was spent quickly, and several touching
letters, which we cherished. (It would not be an exaggeration to say his first
year’s costs exceeded a million dollars.)
1980;
This was another pivotal year. I lost a
job and found a job, Joan went to
Along about Easter, I was called into the
manager’s office at Case and told; Times are tough, you are laid off, two weeks
pay in lieu of notice, pick up your things and be gone. Medical coverage was to
continue for the next year. (As a “pre-existing condition” he would not be
covered by my new employer.) Fortunately, I was hired by Boeing, by Memorial
day.
Meanwhile, we had been looking for a rehab
center, which might be able to improve his condition. Joan went to see Craig,
in
$4,000 each way. (This was Case’s
insurance and I didn’t even work there anymore.)
So we went to
Doctor Dugan and his staff tried every
trick they had to get Paul’s stimulator to work, to no avail. In the process they
learned how stubborn he could be. We heard again, “can we sit on him”? We did
learn one important thing from all this, which, we believe, greatly improved
his health. They stimulated his bladder daily, by tapping in his lower belly,
thus draining it completely, eliminating the accumulation of the foreign matter
that causes infection. (Urinary infection is probably the most common reason
that quads become hospitalized). We brought Paul back in July. The temperature
was 108 degrees and getting him off the plane and onto his van was very
uncomfortable for him. It took him days to recover from the trip.
I think it was in 1980 when I read about
the Spinal Cord Society on the editorial page of the newspaper. It seemed that
someone was interested in trying to find a cure instead of telling us how to
“cope”. They were having a meeting in
Regarding SCS, we did stay in contact with
them. Brenda Potter, who became quadriplegic when struck by a drunk driver
running a red light, formed a local chapter which we joined. It deteriorated
into just Brenda’s family and us. We did annual fundraising, usually a “bluegrass”
concert with the help of a local country radio station, with limited success.
Then, in 1990, we were contacted by Liz Sims, a fellow parishioner, who was
trying to raise money for a group home for mentally disabled. With the help of
the church, she was organizing a golf tournament and knew of our experiences
and proposed that we go together to organize the tournament. So we did. A month
or so before the tournament, Liz, who had been doing a lot of physical work at
the group home, was hospitalized with a “minor stroke. While there she was
diagnosed with cancer, which raced through her body, and she died the night
before the tournament. So it became the annual Liz Sims Memorial golf
Tournament. We had the 14th annual tournament in 2003. Brenda, who had two
children after the accident, (now grown), and her family are close friends.
So we resumed the routine of caring for
Paul. The first thing I did in the morning was to turn him, tap his bladder and
range him. The last thing I did before going to bed was to range him again.
Joan and the nurses did a lot more during the day and night. The quality of
their care was attested to by the professionals. Paul had several broken bones
which were not cared for when he was fighting for his life. There was a broken arm
that Doctor Murphy attended to belatedly. He had a broken jaw, which was not
attended to. When doctor Rensner, the Dentist, worked on his teeth, he had him
anesthetized, then got on the table and pried his jaw open to work on him.
Every time he did that, he uncovered him to show the nurses what good condition
his skin was in, and congratulated us for same.
For a while we didn’t get to go to church
together. We didn’t have nurses on Sunday so I would go to one mass, rush home,
and Joan would go to the next mass. Then we got permission to keep a nurse on
Saturday evening, so we could go to the evening mass, then go out to dinner.
This became our special time together, a temporary escape from the
responsibilities as caretakers. This may have saved our sanity. We still almost
always go to mass and dinner on Saturday night and it is still a special time.
Doctor Fields had a lot of respect for
Paul, and a lot of frustration dealing with him. He actually made house calls
to see Paul. When Paul was on Medicaid, and Fields didn’t accept Medicaid, he
finally treated him for free. Paul was always “second guessing” the Doc, and
was usually right. Doc would prescribe “medicine A” for congestion and Paul
would say, “no, that didn’t work last time, give me “medicine B”. Paul was very
cognizant of his care and his respirator. He often told the technician what to
do to fix the machine.
Some of the other doctors didn’t
understand Paul. When he had something wrong, his system often responded by
exhibiting diaphoresis, profuse sweating that soaked his clothes and the
sheets. An internalist, specializing in ulcers and such, tried to convince us
that he couldn’t have ulcers as the symptoms were wrong. Joan had to explain to
him that Paul’s body was not typical and couldn’t show the proper symptoms. The
god-like doctor was embarrassed to find that he did, indeed have ulcers. There
were many similar events through the years.
Another case of too much “expertise”
follows. One day we brought Paul back from the hospital following treatment for
an infection. When I went to range him and put him to bed at 11, I saw that his
leg was swollen to about twice normal size. It was apparently Phlebitis, caused
by a blood clot. A few minutes later the ambulance arrived and the paramedics
seemed to be intimidated by Paul’s (disability) condition. They wanted to call
a helicopter, but couldn’t figure where it could land and how they would get
him there, (Of course it was winter with snow on the ground and a howling
wind.) When we got to the hospital we were warned that the clot could move to
his lungs and that could be very dangerous. When he was admitted, he was told
what the settings would be on his MA1 respirator, the same model he had at
home. He protested, knowing his own machine, but was ignored.
The phone rang at about 2:30AM. Paul was
having breathing problems and wanted the MA I set his way, but nobody wanted to
disturb “doctor’s orders”. We were furious. They wouldn’t take our word, or
Paul’s, to reset the respirator. They finally got permission to set it right
and things improved somewhat. Part of the cause of his distress, (surprise,
surprise!) was that a clot had indeed migrated to his lungs.
One night to be remembered while we were
at home went like this. There was a blizzard outside, with snow, howling winds
and a temp of 15 degrees. The lights went out around 1AM and Paul’s respirator
quit. We had to hustle to get him on the portable. About an hour later the
portable quit with a dead battery. While Joan bagged him with our ambubag, I
stumbled out into the cold, dark, garage to remove the battery from his van.
Soon all was well, although cold and dark. We were on a priority system with
the electric company. Although there were only four houses in the dark, the
service men came out and repaired our transformer in the blizzard, finishing at
about 4 AM. We thanked them and offered them a hot drink, but they had other
calls to make.
Paul’s health and welfare got a giant
boost when we bought new carpet along about 1981 or so. With a major purchase,
Star Lumber was giving away a Texas Instruments computer. By today’s standards
it was a pitiful 128 K capacity, but Paul latched onto it with a vengeance.
With his photographic memory, he would read a page of instructions and never
have to refer to it again. When he found out he could compose music on it, his
world expanded mightily.
Next, Paul got a Yamaha[5] music
maker computer and started composing for real. Instructing the nurses, step by
step, He composed and copyrighted about 50 tunes. Some of them merged with real
instruments and vocals, performed by friends. His tunes are complex, almost
symphonic, using multiple “instruments”. He said he couldn’t read music, but he
could write it. Once he started composing, his health improved, his attitude
improved and he began to “socialize”. The internet had not been “invented” yet,
but, by phone and by mail, Paul was making friends and trading information with
folks all around the
I was interviewed by Boeing regarding
their “good neighbor” charity campaign. When they learned of his music, they
sent a musician to visit him, and the musician wrote words to one of his songs
and their choir sang it on several of their recitals. It was called
“Sunshine and Shadows”. They also printed an article with pictures in the
company newspaper. He was also interviewed on the TV nightly news. He was a
celebrity, of sorts. He was known and treated as someone special whenever he
took me shopping for musical “stuff”. (When it came to musical things, he could
be a “pill’. He would “audition” a set of speakers in the store, then, if the
quality was not right at home, back we would go.)
In 1991, Paul went on his first “out of
town” trip. Preparing for it was something like preparing for the Lewis and
Clark expedition. Paul had a full size van. Still, with clothes and accessories
for four people, Paul’s chair, pillows, pads, portable respirator, battery
charger, 12 volt and 110 volt suction machines, catheters and nurse Suzanne, we
needed a car top carrier before we left. Then we had to find a motel with an
accessible room with a waterbed. We found that at a Motel 8, near the airport
with adjoining rooms and an accessible Denny’s restaurant next door, which
worked out very well. Suzanne stayed with Paul and probably didn’t get much
sleep, while we slept “next door”.
We went to a King family reunion, visited
Bill and Shirley (Otto), visited our old neighborhood and took in some of the
sights. One of them was the riverfront. There was no way Paul could go up the
arch, but he did go for a short excursion on the riverboat “Huck Finn”. There
was no easy access, but the crewmen lifted him bodily, respirator and all, onto
the forward deck. Paul enjoyed it thoroughly. He did not much enjoy, nor did I,
getting in and out of the van, parked “in the tilt” on the levee in the 95
degree heat. Driving home across
It opened Paul’s eyes and imagination to
the point that he was colleting data and planning more trips. We were preparing
for a busy future. Little did we know that this first trip would also be his
last. Looking back, we were so very grateful that he was able to enjoy the one
trip.
For years we had tried to get Paul
interested in a motorized chair, so he could have a little more independence,
but he always resisted for reasons we did not quite comprehend. But after his
trip he changed his mind and we arranged for one to be delivered to be adapted
to his requirements. Ironically, the chair arrived in
For some years we had been concerned about
what would happen to him when I had to retire. The coverage would be a
supplement to Medicare, and Medicare had no coverage for the type of care he
needed. The “experts” from Medicaid and SRS carried on about what wonderful
care he was getting, but sadly stated that there was no way to get help from
the state.
In January of 1992 we went to an
Independent Living Resources conference in
We left Paul in the care of head nurse
Berdina and a relatively new nurse. She seemed capable, but seemed to lack
empathy for Paul and she just didn’t seem to “fit in”. We planned to dismiss
her after the trip. What we did not know was she was having marital troubles,
was taking pain medication which made her drowsy and that a previous patient, a
young boy, had died while under her care.
On the morning of the second day of the
conference one of us, I forgot whom, forgot a notebook and I went back to our
room to pick it up. While there I saw the message light, on the phone,
blinking. The message was to call home. Berdina answered, hysterical, and told
me Paul was dead. I don’t know what was more painful, finding out, or having to
tell Joan. I must have looked ghostly, because she knew immediately that
something was terribly wrong. We decided to drive home, instead of
flying and leaving the car. We found a doctor who gave her a sedative and the
long drive home gave us a chance to contemplate the reality of what had
happened.
The new nurses’s story was: The alarm went
off at 5:30 AM and she suctioned him, and asked if he was all right and he did
not answer. She went back to bed and slept till 7:30 and went in to check him
and he was dead. She called Berdina, instead of 911. Berdina rushed to the
house and called the authorities and us. (In our absence, Steve took charge of
the comings and goings.)
We believe: The alarm went off at 5:30,
(it was very loud).She slept thru it, woke up later to find him dead, panicked,
and called Berdina, and made up a story.
We played Paul’s music at his funeral. It
was attended by many whose life he had enriched. The newspaper wrote a nice
obituary. (Attached).
Paul liked all kinds of music, from heavy
metal to classical. (The exception is “rap”, or whatever they call it now,
which we don’t consider to be music.) when his mother asked, “doesn’t it give
you pleasure to have other people enjoy your music?” He replied something like
“I play my music for my enjoyment”.
You will note that going “ through the
years” not much is being said about the eighties. While Paul kept us abreast of
music during this time, we were so busy with Paul we missed out on history,
politics and entertainment of the times. The eighties were a blank spot in our
memories. On the other hand, taking care of Paul gave us a sense of purpose and
accomplishment that more than made up for whatever we missed. To paraphrase the
quote a parent of twin adult sons with Muscular dystrophy, “Taking care of him
wasn’t a task or a responsibility, it was a privilege”. As the song says, he was
the wind beneath our wings.
[1] Mick
King, my mother's brother who died before I was born, in a car accident.
[2] My
parents` only used the first names of these nurses. I’m not sure if they had
ever discussed the posting of these women’s full names. For now I have only
used their first names until I can talk to them.
[3] Shirley
was the wife of my Uncle Bill Otto.
[4] Shirley’s
son.
[5] I
wrote an article on Paul and his music, Steve Otto, "Paul Otto," Paraplegia
News, July 1989, vol. 43, Number 7, p.30-31.
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