Copyright 2014 by Paul Willey
Twelve Months ago today began the longest, shortest, foggiest,
hardest, confusing period of time in my life with some of the worst and best
moments in my health care.
It was Sunday, February 10, 2013 and I was just rescued via
Millinocket Ambulance Rescue Sled with Heidi and Mark Evers assisting.
They weren't even on duty, or on call when the call came in, but by the sounds
of the call, they realized that meds may be needed on scene and they were
qualified to do so. So, they volunteered to take the call. The
care at the ER was just as excellent, I have no Idea how long I was there, but
I was mobile enough when I left for them to get me into the truck and we went
to our residence in Palmyra.
Bob & Hope MacDonald picked up our snowmobile trailer from the
snowmobile club and brought it back to their place for safekeeping.
Once I was home and sought follow-up care is when the anger over
health care started. Naturally, being an MS patient, I was used to
having IV steroids as I was given in the ER. The reduction in
inflammation was instrumental in getting me at least ambulatory with
assistance. I've had countless treatments over the years always on my
calling, when I felt "I" needed them, verses a steady dose that many
MS patients receive. I refused that kind of care. Steroids,
like many other meds, are compensated for by your body, so the more routinely
you take them, the more and more you need them, and the more damage is done.
It had been two years since my last treatment.
I called the VA the day after my rescue and requested to be seen
by the lead Dr. of the Spinal Cord Injury Clinic on Tuesday. Which I
did. During that time, he refused to give me the dosage of IV steroids
that are normally given to treat an MS flare! We were furious to
say the least. Despite the pain and immobility I had, all he did was max
out my doses of medications leaving me in a stupor, and doing absolutely
nothing to relieve my symptoms. I was still pretty much bed ridden,
needing constant help from Lori-Ann and when the grand kids were over I
remember hollering out in pain, swearing involuntarily. Something I never
did in front of them.
Since long ago, when I have bouts of pain, I masked them the
best I could but of course Lori-Ann or the kids pick up on my clues. Long ago if we were in front of other people,
they would ask if I was OK... I asked them not to ask, because I didn't
want that attention. I would just say, "I'm fine",
regardless. Only other occasion I remember frequently yelling in pain, was while playing real golf. The pain was real, but thinking back, maybe it got me a sympathy stroke or two! haha.
After a week of being in a stupor, with minimal if any
improvement, I did something I never did before. I went outside the VA
system for MS treatment. I saw my civilian doctor and she gave me
Steroids right in her office without hesitation and I started getting relief
that I needed.
Without a doubt, If it wasn't for the extra meds the ER sent me home with, I
would've been in the same shoes again, . My civilian Doc also
gave me a neurologist referral.
Amazingly just 3 weeks after being rescued, I saw a neurologist.
I don't want to discuss his name on here, nor get into details,
but I will just say he was by far the most thorough doctor. I ever had.
He'd order test on a Friday, call me up on Monday morning, cancel that
set of test and say... "I've been thinking and studying about your
symptoms/history over the weekend...." and then order a different battery
of test. He wasn’t afraid to refer me to a different neurologist either
for a second opinion, one who specialized in movement disorders.
So between steroid treatments and adjustments of my
medications/new medications just 5 weeks after my rescue we make a road trip up
to Millinocket to get our snowmobile trailer while graciously thanking “Bob
Hope”. Lori-Ann helped me get on my sled, and we make a long slow
journey into camp to tie up a few loose ends before we go on our road trip.
The trip is exhausting and we have to spend the night at a hotel in
Millinocket before we go home the next day.
Just 3 days later, we head out on a 50 day, 9,124-mile road trip
around the country. Our main objective was to see our son Joshua in
Hollywood, but we stopped to see many family and friends along the way, as well
as many of the tourist attractions of the west. Places we figured we'd
never get a chance to see.
We left March 21. We knew we'd
have to take our time as Lori-Ann was the only driver and sitting up for long
was exhausting for me. You can see all the pictures and read some of our
adventures here.
The closer the trip came to a close, the more tired we both grew.
Lori-Ann had to do all the luggage duty, as well as taking care of all my
needs, and driving, so it was just as exhausting on her.
My most memorable story of the trip is summed up in this post.
This is a brief summary and doesn't include some of the thoughts running
through my head like, "How do I get out of this situation, please don't
let that sound be what I think it is, etc, etc......"
"... we are at a restaurant because we were way too early to
check into our hotel room. It was another place with a hard to maneuver
handicapped stall, and just like every other handicapped stall I've been too, I
have to fight to spin around so I can grab the door and shut it.
Well, this time while doing so, the back wheels of my wheel chair
caught the front edge of the toilet, spun the toilet so the toilet bolts broke
off the floor, and evidently when that happened the back edge of the toilet
tank hit the wall, and since it isn't flexible it split in half right down the
middle. It looked like someone took a splitting maul to the tank and opened it
perfectly in half. Luckily, they have a good drain in the bathroom, because
needless to say the water kept running....
Then I had to tell the nearest waitress, "I broke the
toilet". She quoted me, "You broke the toilet"?... I could just
imagine the thoughts racing through her head! LOL Then I told her I was
spinning around with my wheel chair to shut the door and I caught it.
Before we left, one of the staff came up to me and made sure I was OK,
and told me not to worry about it. I felt bad, but I every time I would start
to tell Lori-Ann what happened, I would burst out laughing. I finally
downloaded a sketchpad for my droid do I could show her what the tank looked
like. I even had to stop myself my laughing before I came out of the bathroom
to tell the waitress I broke the toilet." (Memory fails me, but it
was probably 15-30 minutes before I finally thought of downloading the sketchpad...
haha)
So that gives you a clue as to how tired we were. Just
before that, I parked my wheel chair on Lori-Ann's foot in much the same way I
did AhChoo's tail the other day. Thankfully, both made a speedy
recovery, but unfortunately for me, the cat treats didn't work at letting
Lori-Ann forget her pain, especially since I'm a repeat offender.
Three days after our return to Palmyra, on May 12, we considered
our road trip "OFFICIALLY" over (even thought we didn't count it in
the travel days) because we returned to camp.
I'd spend 99+ percent of time of the previous 91 days either in
bed or in my wheel chair. I had a new wheelchair from the VA, so I now had a rugged chair for outdoor use, and a lighter wheelchair for indoor
use, but still had no real ramp system at camp.
One of the things that really clued me in at this time as to how
bad things went south for me on a cognitive level was my ability to focus on
things once it came time to get the camp ready for summer use. It's a
problem I always had, but usually once I felt a period of alertness
coming on I could focus enough to work on a task for bit. However, this
time.... I found myself zoning out after just 2-15 minutes maximum before my
day or DAYS were finished. I pushed though even longer just so I could
accomplish something, but it made my time relaxation time even less enjoyable.
A perfect example for me was the lower unit in our boat needed to
be replaced and the motor needed to be serviced. We had the replacement
lower unit. EASY JOB... Ooops... missing one part. Normally,
I would've told Lori-Ann we are going for a ride to get the part, but not this
time anyway, it was 3-4 hours of work... including the drive for the
extra part. I would just get lost, not know what to do next step
despite having the manual, and/or just have to abandon everything and go to
bed. So, the actual 3-4 hours of working turned into 5 days.
When we finally finished the boat. Lori-Ann dropped me off
at the landing on the first nice day. Just driving the boat from the landing to
the camp, landed me in bed. I was really worried about even having a
summer at camp then.
In the mean time, we had more Drs.. appointments, more test, etc,
etc.... Before we knew it, the end of June was here. We knew if we
had any chance of staying at the camp it had to be 100 percent accessible.
So, we put in the necessary paperwork and had the work done.
BUT, I also told Lori-Ann, and she NEVER questioned me for one second,
(despite as demanding as it was to take care of and worry about me)
"I have my meds, and I don't want to see any more doctors or have
any more test during the summer". We had work to be done, we wanted
our granddaughters here. I want to TRY and enjoy that time.
As much as I tried, I never did enjoy those times with them.
They came. I put on my best face, but I spent most of my time zoned
out or in bed, it seemed. I did my usual role of cooking the boat meals.
Which is what I REFUSED to give up, but it sucked everything out of me.
I love cooking while I watch everyone else play on the beaches, or
driving the boat around the lake for scenic tours in hopes of making new
discoveries for them. AND, I would do it all over again. That is what
Grampy is suppose to do. I want them to remember me like that as long as
possible. But, I had silent tears of never really getting to enjoy
the time with Autumn and Ellie. They were here, but they weren't. It's
so hard to describe. My meds essentially were the same from a year
ago, so medication wasn't the problem. My health was.
We only went fishing 3 times during the summer. I never
really enjoyed any of those excursions either.
We often went for a
week or two at a time without a ride even. Relatively few boat meals.
We only made one of our trade mark "HON-NEY" videos
during the year. The nights sleeping on the boat were far fewer and far
more uncomfortable than in the past. ALTHOUGH, I was much more
comfortable on the boat than I was earlier in the year. I enjoyed
taking Lori-Ann out so she could get her photo or/and snorkeling
opportunities though. That meant a lot to me. I could rest on
the boat, cooking for the two of us was relatively easy, and she helped quite a
bit still.
My plans on not seeing a doctor all summer turned into not seeing
him through September, or October when I finally called for an appointment in
November. He said he understood perfectly, and there was no guilt trip of
any kind.
Then he said, ‘I think I see what's going on here. I could
send you to some more doctors for some more testing, and we MAY or MAY not be
able to name one or more of your problems... But I don't think we have
to put you through that. There are three medications I would like you to
try, one at a time, they are all going to be for "Off label use".
These won't be a cure, but they should help your symptoms if I'm
correct. So basically between genetic and autoimmune disorders
your neurons are having problems making the right chemical transfers in your
brain and in your neuromuscular system.’
I've already forgotten the first medication he tried, but even at
the lowest dose, I didn't notice a brain fog improvement... BUT I noticed
rather a rather quick improvement in pain and muscle spasms. The
improvement was way beyond expectations. However, since it was also used
to treat altitude sickness, it was a diuretic, caused me many sinus problems
and other issues, so after less than a month I had to abandon it.
The next medication is primarily an anti-seizure/migraine
medication. He said I should see almost immediate results if it works.
And WOW, did I ever. However, it worked JUST the opposite
of the first medication. It did not improve my pain levels, or muscle
spasms, but, it took away my brain fog, I found I could focus, I could push
through pain without it shutting down from the pain. I'm not what I was
even a few years ago, but I can function for hours at times before I
start to "zone". Zoning is not as sudden, IF I pay attention to
it. I don't want to sometimes, and try to finish things. I
still need "days" off, but I just had to take 10 months off from my
life.
I've done some unintentional experimenting by not taking my new
meds a few days earlier this year and I found I was almost instantly back in
the same confused state as before. So that eliminated the placebo effect.
I've also discovered that I STILL rely on the meds I've always had as
well as two new ones. If I don't take them, along with the new meds, I
found a determined brain can only push a body so far. In reality, I like
to think my body has years back, but from the days of ice fishing I can tell
that the combination of my old meds, a med I started a year ago, and my newest
med have my body back to where it was in the few weeks before I was rescued.
So I still have to be smart, and wise. Hopefully more choices are
ahead of me when I see my doctor in the future.
I also want to note, that in my first blog of http://ineptblog.blogspot.com/2014/02/as-seen-from-pauls-eyes.html,
I noted my cognitive function test were all 100 percent up through 2013.
I was tested again in late November 2013, and for the first time ever, I
did not score 100 percent. The words the therapist said in Januray 2013
of “Even though you are noticing changes, you are still way ahead of the rest
of us" were no longer true.
Even on Facebook, my postings may have seemed "normal",
but many of my post took 20-30 minutes on a daily basis, and I gave up on a
number of my post. So while I could communicate with written words
easier, it took a considerable amount of time for me to do so. Even
though I could communicate what I knew about subject matter, it took so long
time for me to dig it out. I still caught several after the fact
mistakes that I would correct. Except for this paragraph and the next, I
wrote this entire blog in one three hour sitting. If I would've tried
last year, it would've taken Months.
UNTIL VERY recently things didn't seem to be turning around in the
cognitive area. I'm always repeating things, even in my Facebook posts
I'm constantly finding that I repeat sentences or phrases. That seems to
be improving quite a bit over the last 2-3 weeks and I've even noticed my math
skills are warming back up. I still can't even guesstimate percentages
and have to use a calculator, but I know how to do the math without using a
formula. While I still can't multiply triple digit numbers in my
head, on February 7th for the first time in ages I added 3 triple digit numbers
in my head.
Then Today, February 9th, for the Dam Weather Page, I added 8
numbers in my head, 7 of which were triple digit, and then divided by 8.
I was off by .04, that's acceptable in my book!! :-). So
while my body is lacking, my brain is still improving in function.
That's what was missing in my quality of life around here. My body still
needs many hours of rest, but at least if I manage my time correctly I can
enjoy my awake time. It's still a delicate balancing act, but I gained
the upper hand again.
As a side note, remember that VA doctor I mentioned WAY back at
the beginning that refused me treatment? He was "transferred"
elsewhere. I won't get into what we heard through the "rumor
mill". As the Spinal Cord Injury Clinic saw its patient numbers
dropping dramatically over the few years he was there. He disappeared.
Draw your own conclusions. I like the conclusion we drew.
My unreasonable guilt of this past year was not having Mark and
Heidi Evers at our camp as I promised. As I know they understand, if I
couldn't even muster up the energy for the grand kids, I couldn't find myself
able to do that either. We talked about planning lunches, but even that
seemed next to impossible for me.
Thankfully, they graciously allowed us
to treat them to lunch this past week as a small token of appreciation.
They also gave us a "Wood Spirit" carved by Mark that needed a
"place to live". He will be MOST welcomed here in our
home.
I would just like to close with a post I put on Dam Camp's
Facebook Wall on Christmas Day, 2013.
"Even though we didn't say so publicly, we knew in our hearts
that things didn't look good for us being able to stay here this winter up
until a month ago. We stayed here this year, but everything fell on Lori-Ann's
shoulder's, to include worrying about me. BUT, a new Neurologist I found last
March wouldn't give up, and he found the right class of meds that is helping me
where I have the ability to fight through things again. Not a cure, but I am
taking steps back towards my life before the Rescue Sled.
The best gift I have is seeing Lori-Ann able to relax without
worrying about my every move, or what will happen if she goes outside.
The most ironic thing is despite this statement, Lori-Ann will
confess that to her; the most frustrating thing this past year was that she
couldn't give me a swift kick in the ass to get me doing something. She just
could not understand why, and understandingly so. I always relied on her when I
needed it as well. I tried so hard to make them (the kicks in the ass) work.
BUT, now with the new meds; she keeps telling me... 'STOP.. You're going to
over doing it.. you need to rest'. She can see I'm tired, but my brain is still
going, and pulling, so she is trying to protect me.
I wish I could tag Mark & Heidi in this Post, but it all
started with them, literally pulling me in a new direction.
Merry Christmas Everyone!"
Copyright 2014 by
Lori-Ann Willey
Edited by Patricia Tobin
A very special thanks to our friend
Patricia who helped me edit this piece.
It has been a year since Paul’s rescue last February 10th,
and it is impossible to write about everything because so much of it was a blur
for me, too. What was not a blur were my
struggles emotionally while watching my husband becoming more and more
withdrawn as time went on. I will try to
explain how it affected me, and how it all affected our day-to-day living.
In the days and weeks after Paul’s rescue, I stayed by his
side as much as I could, however, he slept nearly all the time. I did everything for him to include cathetering,
washing him, helping him roll over, to sit, to stand, and of course, needed to
continue giving his allergy shots, too.
I catered to him.
I hope he will get into the fiasco we had to go through with
his VA doctor that was put in charge of the VA spinal cord clinic. All he knew how to do was max Paul out on
so many pain meds and muscle relaxers
that all Paul did was sleep, and was unable to form words or sentences for
weeks on end. I was missing my husband
and did not know how I could make him better.
I felt helpless. We were both very frustrated and emotional. Doping him up was not a quality of life we
were going to accept. How long could I
care for him as he was? I would need
help from professionals if that is what his life had become at that point.
As I listened to Paul try to talk with that doctor on the
phone one day, I could tell by Paul’s already struggle to communicate, that the
doctor was set in his ways and he was not listening to Paul at all. I sat quiet, but as the conversation
continued, I grew more and more upset.
Angry even. I motioned for Paul
to hand me the phone. I spoke my
concerns to the doctor, and then I listened to what he had to say. I was not happy with the man, and I had him
on the phone for about 20 minutes cussing him up one side and down the
other. I was frustrated, angry, and
felt helpless. I told him that I wanted
it in Paul’s records that neither Paul nor I was satisfied with his
treatment. Surely, there was something
the man could do for Paul except dope him up into nonexistence, but the doctor
was set in his ways and would not budge in thought and my concerns went unheard
and I made sure to let him know that several times. That doctor had a history of NOT listening to
his patients! I was not going to give up
that easy!
Keeping in contact with our kids, family members, and close
friends, Josh (our son), feeling helpless as well, was clear across the
country. Hearing our struggles to
communicate with a doctor whom would not listen to our concerns, he called the
doctor himself. Of course, the doctor
could not talk with him, so that frustrated Josh even more.
Finally, we decided to go through our civilian primary care
doctor. She could tell that Paul needed
steroids, but in the office, there is only so much she could give him legally,
but would give him a prescription of the same dose to take over the next few
weeks. She recommended he see a new
neurologist in the area.
We were so tired of doctors that we both dreaded the entire diagnosis
process all over again! We were so tired
of starting from scratch just to have yet another new doctor come to the same
unknown solution and to an unknown diagnosis as the others did in the past. Paul was diagnosed 18 years earlier with MS
and it took years to get that diagnosis, why would we want to start all those
tests all over again? What could be
tested for that was not already tested?
A couple of years earlier, some doctors had already suspected
that he did not have MS after all, but would not test further to see exactly
what he had, so they just treated the symptoms.
Because he did not have the lesions in the brain, spinal column, he did
not meet the new criteria for any sort of MS treatments, though some treatments
in the past worked. Some didn’t, but some
did! Because of the new criteria, he
was stuck in limbo and prescribed medicines for symptoms without a clear-cut
diagnosis. That is where some of the
medical professions left him…”I don’t think you have MS, but that is what we’ll
stick with”. It was so frustrating!
Now, with the drastic decline of his un-named disability, we
thought long and hard. We knew that this
new stage of his health, the steroids helped, but he was by far not back to
where he was before the rescue.
Something was not right. Something had to be done. Someone had to help! We were not satisfied that all testing was
not done that could be done, but at the same time, we were tired of all the
tests and doctors that came up with the same inconclusive answers, too. At what point do we say enough is enough if
the doctors had already said that years ago?
After his rescue, his memory was way off. Time perception was way off, too. When he was
able to talk, he reflected backwards a lot such as talking in the present
tense, when “the other day” was a year or so before that. Not naming his nouns, or giving me a topic,
or excessively using pronouns in referencing several people, and not naming
them initially got me frustrated, too. He
would start off talking mid sentence and I would not have a clue as to his
topic, time frame, reference, or anything.
All this while his sentences either, stopped abruptly mid-sentence or
trailed off to inaudible mumbling. I
tried so hard to be patient and so hard to try to fill in the blanks, but often
times I could not no matter how hard I tried.
My life had become being unable to communicate with my own husband and
that frustrated us both.
Cognitive abilities? Paul had very little to none for a long
time. He would try to talk and hold a
conversation, but many who listened could not understand much of what he was
saying. Some played along and nodded
their head. Some gave the same responses
themselves, or simply answered their own questions. Some dominated the conversations leaving Paul
little time to try to talk in fear of not understanding his responses. Sometimes, people would just talk to me as if
he was not even in the room. In Paul’s
mind, sometimes he was audible, sometimes
he was making sense, and sometimes he was holding a conversation…and sometimes
he was right, but mostly not. I tried to
prod him to find the words he wanted to use, to help guide him, but all he
could say in return was, “Honey, I’m trying”.
In addition, he was confused as to why I could not understand him, when
to me, he was making little to no sense with his words. Just because he knew in his mind (kinda) what
he wanted to say, did not mean that I did.
It was a constant struggle.
A few weeks went by and he was to turn 50 years old on March
16th, and he wanted a birthday party. Honestly, I could not see how that was to
happen at all, and I had my hands way more than full trying to just keep up
with daily living, tending to Paul and his needs, too, that I could not plan
for the party even at our own business.
Instead, he contacted his niece, Sara who ran the business and told her
to “have at it”. Gave the date, approx.
number of people and to run with it. She
did a great job. The cook that is also
our friend worked for us. She was given my permission to “run with it”, too,
with whatever she wanted to cook and serve.
She tried to bounce ideas off me, but I could not think long enough to
say yes or no, and instead encouraged her several times to just take it and run
with it. I trusted her judgment. Honestly, I was not looking forward to the
event myself. What would happen if he
could not attend last second? How could
he plan such a thing if he couldn’t even roll over in bed by himself?
With lots of meds and lots of rest in his body, he was able
to attend and did rather well, too. That
was very nice to see. The turnout was
plentiful, too, so that was a big plus. I mingled a lot, as others kept him busy by gabbing. I had been his voice more often than not up
until then, would answer questions for him, would restate his sentences for
him, clarify what he was trying to say, etc.,
but that night I needed a break, sad to say, I know, but I needed to step away
and instead of being at his side every second.
I kept checking back often, and
he was always surrounded by friends and family, so he was well tended to. If anyone caught on with his lack of
abilities to communicate audibly, they didn’t let on. Maybe there were enough people in the room so that people just simply
pieced words together and called it good.
Even as I type this, I asked him, “How many people attended your party,
do you remember?” His reply, “I don’t
have a clue. I was too out of it.”
Paul continued to insist that he also wanted to do a road
trip from Maine to visit our son, Josh, in California and then back to Maine
again. “Are you kidding me?” I shook my head in disbelief, “No! Honey,
there is no way we can make that trip how you are!” I figured it was some farfetched fantasy idea
and there was no way he was thinking in realistic terms AT ALL. I was not up for driving all that way, take
care of Paul, and me, too. How could I
do that? The thought was impossible for
me to even begin to comprehend. I would
need help driving, a passenger that could tell me the vehicle I was passing or
the lane I would be merging into was safe to do so, etc. Then, to unload our luggage with each stop,
too? No way. I was struggling as it was! I wondered if he was even considering my
“job” at all during the trip. In
hindsight, I can see that he needed to have determination, a mind-set, a goal
or goals in place to help push himself through it all, and eventually, I did
see that, but only after I was over the initial shock of such a trip! Only then, did I support him. However, I am shameful to say, I was a big
skeptic!
Each day, Paul made a little more progress thanks to the oral
dose of steroids on top of the in-office IV treatment he got. Luckily, his doctor agreed to give him
another dose for the trip. That was the
only way I agreed to consider the trip at all.
I was still not sleeping well even then, and I would wake up or stay
awake to make sure he was still breathing and was still with me in life. This was throughout the summer months,
too. Many of you remember my countless
near sleepless nights. I even had them
during the road trip. I became very
protective, as I always am anyways, but even more so. I am a protector and a nurturer by nature,
but I think for others that is a great thing, but for me, it creates a lot of
stress knowing that he will be in my care and far away from his doctor, too?
We took our time to get from Maine to California. Driving 4-6
hours each day was long enough for the both of us. My problematic back did great and I
loved the heated seats. I could drive
about 2 ½ - 3 hours before I needed to stop and rest my back, so my driving
days seemed to linger. Days were long
and tiring, and still had to check in and lug our luggage up to the hotel
rooms, and having to find a place to eat each night made for very long days for
us both, but we managed. Sometimes, we
would just eat something out of a vending machine and call it good. Sometimes, we would only eat one meal a day
due to fatigue more than anything. If we
were hungry, we would order take-out delivery.
Our stops in Indiana, were the only time we had home cooked meals, and
boy were those rewarding! REAL food
never tasted so good!
The days were filled with new sights and sounds, new faces,
and new attitudes along the way, and finally, 50 days later, we were home in
Maine. The past 50 days kept my mind
busy, and that was good for me. However,
once back home, reality hit me fast and hard in the face. It was spring, May, and my whole being wanted
to be back at camp and continue our lives as we had in the past, however,
things were not the same. Paul still
needed a lot of rest, and a LOT of care.
His days were spent mostly in bed.
When he got up, he spent time at his laptop. He barely spoke, and when he did, his voice
was still weak, and his sentences still broken up, and inaudible when tired,
especially. I spent more time asking
him, “What?” than anything else, I think. Everything he tried to say, resulted in me
saying, “What?” Sometimes, it was
several attempts to complete a sentence before I understood what he was trying
to say. That frustrated us both.
At camp, his daily energy was spent reading and researching
topics of question when he could, but his cognitive abilities were not nearly
what they were before. People on Facebook
always went to him for clarification of things, and he would always comply. He was a reliable source, but now, it
fatigued him beyond words…literally. Yet,
still, he would spend his wake time researching for them, debating when he
could, and when he was finished helping them, he was too tired to do much of
anything else, to include conversing with me.
Though I missed my husband, and he was sitting here three feet from me,
there was very little communication between us.
One day, he got up and went over to feed the cat, and that was a shocker
to me. When I say he did absolutely
NOTHING, I do mean nothing, and feeding the cat a can of food was a huge
undertaking for him. He had the ability
to do that daily task about once a week this past summer. Although it was a menial task for me, it was
huge for him. Even so, just feeding the
cat once a week was a great help. Yes,
just feeding the cat. It is hard to
explain how that little bit of relief was huge for me.
I spent much of my
time inside camp, only going out when he was napping. I was afraid to leave his side for very long,
so I stayed pretty much in the camp yard
only and checked on him often. It was a
good year to pick up gardening again! I
spent a lot of time making soil (collecting natural debris and composting them). I spent a lot of time with the chipmunks, too. They would follow me to my garden and linger
around there with me while I worked in the soil. I would sit down and they would be up in my
lap. They made me smile and feel more at
ease about being outside. They helped
distract myself from worries. When I was
on the phone with our friend (mentioned below), I would always sit on a log
that lined my garden. Between those
conversations and the chippies, I would actually enjoy a few laughs.
Paul was still laying down and sleeping much of the day, so
when he was up and sitting in his wheelchair at least I was seeing him, and
repeating that, “what?” several times per sentence. It was good to see him trying to engage
others and his brain, too, but at what expense?
It fatigued him to the point that there was nothing left and needed
naptime, but at least he was social with his typing fingers. That was great to see him trying to get back
to his social being, but I longed for conversation still, and longed for a conversation
that made sense and not end in frustration.
It was like trying to communicate with someone who spoke a different
language and was in search for words to help describe their meaning.
I kept busy as I could, but my mind was full and screaming. When he laid down one day, I decided that I
needed to vent my frustration, to preoccupy myself, to do physical labor, so I
decided to lug rocks, and the larger the better! It took me weeks to build a couple rock fire
pits, lugging rocks so heavy that I could barely lift them, never mind carrying
them through the woods and to the fire pit area. All this was taking a toll on me mentally and
emotionally. As I felt my body getting
stronger from all the lifting of rocks, I pictured them as making me stronger
emotionally, too. I had to be stronger
than I was, and I would try any trick to get me there. All this meant so much to me to keep it from
Paul. He had a lot going on within
himself to worry about me in any way. I
knew I had many friends out there that would understand that I needed an ear,
and family members, too, but I just could not bring myself to talk with them. Pride, fearing they would not understand,
fearing that I would be called a dramatic again (referenced below) all held me
back.
I was afraid to leave the camp yard in case Paul needed me,
so I felt like I could not do my usual summer activities. I almost lost him to illness back in the 90’s
and I was so afraid I would lose him if his body turned on him yet again. I snorkeled very little this past summer and
walks with my camera rarely happened. I
stopped sketching, and painting, and writing, too for a while. Other than building a large rock fire pit, I was
afraid to resume my normal activities,
because I was so afraid I would get hurt and how would that work? If I got hurt, I could not care for Paul as
he needed me to. We would both be up
“Shit’s Creek” and in Maine we have no “creeks”!
It was not until this fall when I finally admitted to Paul
that I was stressed. Slowly, I was
allowing others to see that within me, too.
There were illnesses within the family on top of all that…stresses from
every angle, too, it seems. Alzheimer’s,
cancers, and dementia, depression, “missing” family member, and other issues
and I felt like the world came to me with their issues and how could I help
take care of others if I was struggling to take care of Paul and myself,
too? Family came to us for help with various things and though we could not physically or emotionally, we found a
way to help most of the time, if not all the time, but it was a huge strain on
us. I could not understand why they
could not see our struggles with all this, but I guess we hid it well, put on a
smile, made the best of every day that we could, because we knew the
alternative. Health issues are our life,
but because we do not work, and live at our camp does not mean we are able to
help everyone that comes knocking near and far.
As much as it killed us to do so, we had to start saying no, especially
if we saw other avenues for them to explore.
I went from being a somewhat passive person whom would go out
of their way to help people, to the point of hoping that I was not called upon
to do anything. I hated that about myself, because I am the type of person that
would put myself in danger to help anyone and not think anything of it, but I
could no longer volunteer myself. That
was frustrating. I just wanted our life
back before the rescue. I wanted my
husband to be able to hold a conversation again instead of me listening and
when he was done talking, have no idea what he had said much of the time. In public, he stumbled over his words greatly
and he often confused people. When he
would look away, they would look at me, like “huh?” In talking, he would mix up his nouns and call
objects by a different name totally and that added to the confusion. It was like his brain was wired in
opposites. Right was left, up was down,
here was there, that was this, etc. I
learned QUICKLY that I could not depend upon him helping me drive by telling me
the way was clear when there was a vehicle coming. Go was stop, stop was go, clear was not so
clear. He would try to the help me with
the stoplights, but would tell me to go when it was red, etc. He tried to help though. Ha ha ha The boat was “the truck” on many
occasions, too.
Sometimes when Paul napped, I would go outside and call a
friend of ours. He distracted me, made
me laugh, and talking with someone with same likes and dislikes was a great
distraction for me. However, it was not
long before I apparently wore him out, because he would tell me that I was
being a dramatic when I tried to discuss serious stuff…things that were
emotional. He would tell me that he was
not my husband and to go talk to Paul about my concerns. He did not know all the details about how
Paul was doing, so I am sure my stress levels and emotional being did not make
sense to him, but if he was already calling me a dramatic, then how could I
tell him about the rest…things he did not know, things that I was working my
way up to? I could not. My goal was a distraction, not a “pity party”,
and felt that my outlet was instantly gone.
Our friendship spiraled down to no communication at all these days.
Tests after tests after tests, his new “outside the box
thinker” neurologist is close to a diagnosis, and it is most likely not MS as
thought for so many years, but possibly a genetic and autoimmune disorder that
he probably has had all his life. With
new meds and a new direction, Paul is able to communicate better, is now up
much of the day, and can think better, too.
His ideas are flowing again. He
is more mobile, and he is more himself, but that is all within the past month or
so on these new meds. He still struggles
with speech, but in a different way. The
medicine that is helping him makes his voice hoarse and weak. He is better at naming his topics, subjects,
and uses fewer pronouns and uses more specific names now, too. PHEW! CONVERSATION
again, though often short lived, but still!
PROGRESS!
The most recent “battles” have been over how I do
things. His thought processes have
returned somewhat with this new meds, but in the past 10-11 months, I was the
one that did everything and during that time, I did things how it was easiest
and most convenient for me as I was the one doing them. Now that he has some of his thought processes
back, he has his own way of doing things again, and guess what? It is still me that is doing those things, so
I told him that I have lived like this for nearly a year, adapted my own ways,
so just let me do things my way. He
means well, and is trying to be helpful, but his way is not helpful to me when
I am the one still doing the task. I think that is difficult for him to
understand.
He has no real concept at how “lost” he was for such a long
period of time. Sometimes, I will listen
to his directions, start to do them and he changes his mind; that is not what he wanted me to do, so I
listen and follow a different set of instructions all over again. Sometimes, this is repeated several times
when I could just do it my way in a matter of seconds. That is our latest frustration. I applaud him greatly for having his own
thoughts, but he needs to remember that it was ME that was having to do things
on my own for all those months. That is
a concept that he says he understands, but I do not think he fully comprehends
how everyday living has changed for us both, and how I had to go about things
differently without help.
Paul will “never” get better, and damages done are done
neurologically, but if medicine can help in other ways, such as stamina, in
cognitive abilities, socializing, and more mobility, then bring on the
medicines, because it is good to see him more active and able to think, and
hold a conversation again!
During all this, I have changed some as a person. I learned that I am not as strong emotionally
and mentally as I thought. Nowadays, I
call people out when someone tries to pull something over my eyes and then
denies it. When someone lies to me and I
catch it, I let it be known, too. Why
should I let them lie to me? Where is
the respect for me? I call out deception
when I see it now, too. I figure if
someone thinks so little of me, or us, to do any of that, then I need to open
my mouth and call attention to it, because how dare they think we are too
stupid to know better? We are not stupid
people, and our perception is keen. If I
call you on a lie or deception, then maybe one should just tell the truth in the
first place and do not take us as fools.
I will call attention to things and hold that person accountable for
their words and actions, too. People do
not see what they choose not to see, but if it affects Paul or I, do not expect
me to sit idle...I will call attention to it like it or not. THAT is the new me. Honestly, now, I would not decline a reality
show, because I will not mind telling the camera operator to get the f*ck out
of my face or care if they aired it!
(Joking, of course.)
As Paul slowly returns, and I do not think he will return to
the state he was prior to the rescue, I am relieved, more relaxed, laughing
more, whistling more, singing stupid songs more, and find myself wanting to be
more creative, to look for unique things in nature again. I am also returning more to my old self, too. But, remember my new self, and “don’t piss me
off”. Oh wait, I was like that before. The family always warned people, “Just don’t
piss her off”. But, honestly, I have the
biggest heart of all…until I am crossed.
So, I guess not much has changed there, huh?
I love my husband to
no end and we are a very, very happy couple.
We can and always have been able to be open and honest with each
other. There is nothing I would not do
for him and I will always be here as his closest friend as well as the best
wife I can be. He is my soul mate
through and through. I applaud his
determination that seems never-ending.
He is my hero, and a “superman” to so many.
Thankfully, this new doctor is that outside the box thinker
and has given my husband back the best he can be versus that doctor that kept
him a zombie for so long. His doctor
“came” with a 5-star rating. I would
easily give Doctor Bomprezzi a 10 star rating without thought, without question! He gave me “My Paul” back….kinda, but I will
take him as is forever and ever.
Thank you all for your patience in my posts in the past
year. I know I have come across as harsh
and direct sometimes, but direct was my goal, as I had little or no time to
eloquently type anything, or to please everyone either. What you saw was my true being coming out
under stress, I guess. I had a few
rants, but I always do. We have done
very little joking online and many of you have asked where we were because we
were not the same, less jokes, less fun, fewer conversations, only one
“Hon-Ney” video, I think, and we were both somewhat serious all the time.
I think many of you are as serious as we are when it comes to
such a post as I just plopped up on my personal Facebook wall. I just typed, “Who is here right now?” and
that scared a few people thinking that I needed help or there was an
emergency. That is how serious we have
been in the past year, and that is how serious Paul’s condition was throughout
it all. People that understood truly,
deeply understood, and could read between the unspoken/un-typed lines.
I am hoping, more so
than you are, that we are slowly returning to those fun people, because we miss
those people, too. I have lost a few
friends in the past month because I held them accountable for their words and actions,
and that still saddens me. I may have
been wrong in being so blunt, but I KNOW what I saw and heard, and it is not my
issue if they deny it or cannot admit to such things to themselves or even to each other . I HAVE to look after Paul and myself…simple
as that. One does not have to understand
what we have been through this past year, but if one does not try, then how can
one understand our being throughout it all…or even how we were forced to
change?
