25 September 2014
Thursday morning
There are times
when I find myself thinking back about the things and events of my
life just before I had to leave my home on this strange journey in
physical health. I had already paid off my home, I paid down a thirty
year mortgage in eight years. The was going to be no more feeding
some bank its life blood based on my labors.
I had made
numerous improvements to the property over the years, building a sub
base for the drive and hauling in yards of bank run gravel, then
eventually crushed limestone for the driveway. I made numerous soil
improvements to the garden bed, hauling trailer loads of autumn
leaves, collected from in town on my way home from work. Also
improved the soil where the fruit trees were planted. I hand dug out
the roots of invasive Box Elder trees that had been allowed to grow
unbated on parts of the property before I got it. I hand dug along
the basement foundation on the north side of the building so I could
line the outer wall with building foam four inches thick so the house
would not lose so much heat through the basement. Then backfilled the
entire project by hand. A wood burning stove was installed, then
updated to a more efficient model to make the winter heating more
enjoyable as when as much cheaper.
There were the
usual building maintenance duties that home ownership brings with it,
every time I raised the quality higher than it was before. The
shallow well was re-drilled to a deeper, more substantial well a
hundred seventy feet deep, with a submersible pump installed rather
than the older injection pump in the basement. The older oil burning
furnace was replaced with a newer, state of the art gas furnace that
was much more efficient. An electronic air filter system was
installed. A new roof was placed over the aging shingles. The
original carpeting was removed and a much higher quality carpet was
installed as well as new vinyl florring throughout the house. The air
leaks had been sealed from inside the house. A new much bigger entry
step was built outside the major entry.
I had over time
increased the number and quality of the major tools that I used. A
Stihl 32” chainsaw to cut the firewood, an hydraulic log splitter
to split the cords and cords of wood that was burned over the years.
A lawn tractor to replace the old rotary push mower (it used to take
two days to mow that lawn with the walk behind mower), then a zero
turn to replace the worn out lawn tractor. Several hand tools like a
Bosch rechargeable drill, a saws all, numerous hand tools. A complete
stained glass studio in the basement which had seven kilns of various
sizes, lots of glass and glass storage, many specialized hand tools,
slumping molds and the beginnings of the work to calibrate the kilns
to each other. The were heavy work tables made as well as glass
storage shelving.
I had recently
gone through the entire house and replaced all of the incandescent
lighting with special CFL lamps that emitted the same color
temperature light as incandescents. I was beginning to research
photovoltaic systems to install as further lessening of the footprint
of the house on the environment. The inclusion of the dogs over the
years made the house a home.
It had shone with
potential from the first we saw it, a forlorn little ranch style
starter house, stuck onto a two acre plot . The realtor’s photo did
not do it much justice, taken mostly to document a listing the image
did little on its own as a selling tool. It did not take long for the
place to begin to respond to the care and input for it to become a
fortress. The plants around it grew into a sheltering cove of
greenery to keep eyes from the road away, and the north winds from
blowing through unabated, stealing heat from the eves and corners,
the very lifeforms joined in with the energy savings. The daily trip
up the driveway became both a reception and a welcome back again. The
home seemed to welcome me home every time. It sheltered me and
welcomed me time and again. That home encouraged my explorations both
academically through three graduate degrees and several extra
curricular studies programs. As I built it up that home supported me.
After the wife
left, choosing to no longer be a spouse, the atmosphere deepened in
support. No longer was there an air of contest in the home depending
on egos and comparisons , it settled into the undivided support that
it had always shone. All of those efforts and all of the expense
placed in that home was really paying off. Even other people could
sense the specialness of that place.
It was so sad
watching that house recede through the back windows of the ambulance
as I was carried down the drive on the way to the hospital and
completely different form of living. I always believed that
everything that I put into that house would come back at some future
time, put off as long as possible into that future time, when I would
have to sell it. A $40,000 house had appreciated to $115,000 when the
wife decide that she needed half as a bonus parting gift to accompany
her new solo venture. I carefully explained that I had made most of
the payments, especially when I had messed around with a spreadsheet
with one of my first computers. I was horrified to see, graphically
what the full length of the mortgage payout would be if the full
thirty years was used to pay off that loan. $142,000 for a $40,000
purchase did not seem such a good deal to me.
The wife never
wanted to recognize that she was still a college dropout making small
wages for so many years, while I paid the mortgage. Even after she
went back and finished school, she never got a job that paid
commensurate wages,nothing interested her. She continued making small
money while I just kept on paying the mortage down. I had trouble
getting her to pay even the phone or electric utility bills in an
effort to get her to be even a junior partner. She often complained
that all I ever saw was money, in spite of the fact that too signed
the mortgage agreement. As far as she was concerned the mortgage was
my problem, until time came to cash out, gather the winnings and
move on. Then suddenly half of the house was hers, and she wanted it.
At this point the
fortress of solitude became a bone of contention. She pointed out
that according to the State, and her attorney, she was entitled to
half of the communal property. At this point I was glad that she
never wanted to have any children. She would probaly find some way
for me to be responsible for them too, after thirty years of
marriage. Her attorney had a fearsome reputation of making ex spouses
pay dearly. If we would have had children early in the marriage and
they were adults at the time of the divorce, she would have found a
way to make me pay for their care and upkeep in their adult years. I
went to find a loan against the house to buy her out and finish the
legal matters as soon as possible. Even the bank was not fast enough
to suit her, she wanted her share of the money faster than the
banking bureaucracy was creeping along. She contacted me several
times to try to encourage me to “hurry up” the process.
I tried to stay as
neutral as possible through the whole process, showing no anger or
unhappiness at being treated this way. I even helped her move some of
the household items out to the moving van she had contracted to
gather “her” things from the house. I remember standing on the
door stoop waving as she drove away. She never looked back. The sense
of relief was highly palpable, like the storm clouds parting after a
lengthy all day weather event. I remember when we first moved in the
house, there were times it felt like being under a heavy dark cloud.
These times arrived when Saturdays rolled around and the schedule
called for house cleaning. She could only motivate by becoming angry.
At things that didn't matter. Anger is what she used to get going.
She never even saw that she was angry, when I pointed it out to her
she denied it. Apparently anger was not an acceptable way to be, but
she was always angry, at the dust, the need for cleaning, me for not
being angry along with her, the dog being a living being in the
house, it didn't matter. When she wasn't angry she was stretched out
on the sofa napping, any time of day. Her parents had her medically
evaluated before we were married. No signs of anemia, disease or any
reason for her to be tired all the time. Eventually it seemed that
the act of dissociating with everything was the best way to not have
to become involved with anything. She napped chronically, at home,
when she went visit her folks, even when she flew to see them in
Florida. She was just sooo tired it was too much, she needed to have
a rest.
After she left,
the atmosphere about the house lightened up considerably. I could
work on my computers without hearing opinions about it. I could play
my practice chanter for the bagpipes without comment about the tone,
I could take the dogs for a long walk without having to undergo an
inquisition upon my return. When I did ask her to go along with us,
all she could talk about was little incidents that people did at the
doctor's office where she worked. And all of those comments were
judgmental valuations about the people involved , offered in a
haughty manner.
The atmosphere
around the house lightened quite a bit after she left. There was no
time to feel sorry about the loss. I had a new school program to
attend to. One that would allow me to gain the most freedom in my
work career that I had ever experienced. The freedom to work for
myself, without nursing along those whom lent their supervision to my
professional duties yet showed lots of their own failings to be as
grown up and be adult like in their own affairs. Many little things
around the house were put on hold, but so much had been done that the
house could tolerate it.
After years of
driving daily more than one hundred miles one way on a round trip to
Detroit and the environs of the northern suburbs, two vehicles and
the onset of this disease mandated converting a vehicle to hand
controls, I finished the program. I was inclined to not go through
the graduation ceremony as I already had the certificate. One of my
friends persuaded me to attend. That was one of the last times I ever
drove my car.
Once I was
diagnosed with MS things deteriorated rapidly. There were times when
decisions were confusing, giving an answer was not coming as quick as
people wanted. I was amazed at how people began to covet some of the
material things that I owned. A neighbor, himself an individual who
had his own issues with too much alcohol consumption, decided that I
had told him it was okay to take my hydraulic wood splitter to keep,
and a new rotary lawnmower as well, I certainly wouldn't be using
them.
Then the State
accepted me into Medicaid with no issues based on the MS diagnosis,
only after I had been hauled off to the hospital did they reveal the
rest of their rules for acceptance: no ownership of anything valued
at more than $2000, no income, no savings, stock ownership, no
retirement monies, nothing. After all the program is made for those
indigent poor people, you know the shiftless layabouts who never
contribute anything. Yes the State has just the plan for you. Never
been a shiftless layabout? No problem. The State has a plan for you
too, same plan as the first one, full of the same shame inducing
elements that imply that there must be something wrong with you
'cause you don't have any health insurance. Any special qualities
that you may have acquired or earned are all dismissed because you
are accepting this state program and that is how we do it around
here. We will treat you to the best that anyone who has never owned
their own home is allowed. What you once owned your own home? We
don't see any home. Stop acting as if you are impersonating a fine
upstanding citizen, its not allowed, you shameless layabout.
So my little home
that I had put so much into, built up over the years, paid off early
to not make someone else wealthy off my labors, the place that always
took such good care of me, and had more than doubled in value. Was
sold in short order as the State program couldn't wait for this
market to reach the house. The Medicaid people were very insistent
that the house be sold in just a few months, they just wanted me to
no longer own anything, not caring for much else.
My brother had
been named power of attorney, for which he felt empowered him with
way more abilities that is usually legally given for that office. He
dutifully sold that property for about $50,000 dollars which
satisfied the loan I had against the house, the loan to buy off the
former spouse. He thinks that he did a good job, in fact he won't
listen to me about anything regarding the sale of the house or
disbursing my goods. Once he grew angry hearing me, he said that I'd
better be quiet and not bother him or he would take me to court and
have me declared incompetent. I told him that I used to work for the
court that conducted those hearings, they don't work that way. He
disagreed violently, after all, his son was in law school so he knew
the law, don't you know.
So here I am in a
nursing home that can only worry about their own hide, and if they
can squeeze just a bit more from the operation of this place for the
venture capitalists who own the business. I have a solo room in a
facility that moves residents constantly from one room to another as
easily as chess pieces and with no more feeling than is offered for
highway roadkill at the side of the road. There is little to
personalize any of this experience, even though most residents try to
establish some sense of connection to their room. I know of several
women who have been moved at theast three times each.There are
hundreds of unseen rules to preclude making the space liveable, right
down to no possible ways of extending the four outlets available to
plug in any of your electrical devices. No power strips, even the UL
approved ones, no plug extenders, no multiple electrical plug head
devices, nothing – Fire Marshall says so. And by the way the
hospital bed uses one of those outlets in the room. If you need an
oxygen concentrator, that is another plug unavailable to you. The
food quantity and quality are other matters. The attitude of many
house rules make one wonder why is it that I am living here, again?
Another way of stating it is: This is living?
The one month of
Physical Therapy over a year ago has never been explained to me at
all. All I know is that my registered output on the fancy machine was
37% at the beginning of the month and it was 37% at the end of the
month. What I was told was this showed no improvement, so no more
Physical Therapy for me. I was never told if this was a house rule or
if a Medicaid dictate. My thought was, he guys, attention! MS here,
one never improves, but physical therapy helps keep joints free and
flexible, not to mention some minimal muscle movement to help venous
blood flow so feet and lower limbs don't swell. The facility response
was that they could have me dressed in TED compression hose every day
to deal with any swelling issues.
Meanwhile I am to
be a shiftless lump laying about in bed everyday, except when someone
from the facility decides to pester me that I need to get out of bed
more often and do something. What that thing can be? Playing Uno or
Bingo, I just don't participate with the program, that's all.
Golly, I used to
have a life, but to speak with the authorities here, they don't have
the space or the time, my pursuits are just too special, don'tcha
know. So any entertaining of myself is my job alone, just don't
request anything from us.
Is it any wonder
why I can spend so much time in revery? The powers that be fail to
see very far beyond all the limitations that govern their existence.
Me, I am bound by far more than the physical limitations of this
disease, most of them belong to those who offer the care for me. It
is such a shame that humans can be so self limiting that their
shortcomings effect so many others.
I dream of other
times and other spaces to escape the horrors of this place. I
practice acceptance and continue stating what I would like and need.
All the while wondering where has compassion gone? Why does it seem
so unavailable to so many whom could weild it so well? Do they not
see? What are they afraid of? The mess they are making has not come
home to greet them … , yet.