My Big Boy Is Home
Some of my own thoughts and views as a family member of
someone with psychosis because we are all living and coping with it.
I thought this would be easy to write but now I have no
idea where to start. I will try to find the beginning. Now that I'm aware of
what some of the early signs are... well I can still only guess at the
beginning. My son was diagnosed with paranoid schizophrenia three years ago
(2011). Two years later I still have to
use spell check to spell it along with terms like cognitive thinking, concurrent
disorder, anosognosia and confabulations to name a few. I certainly can't spell
or pronounce most of the medications.
Let's start with a broken family, ADD (Attention Deficit
Disorder), ADHD (Attention Deficit
Hyperactivity Disorder) and OCD
(Obsessive-Compulsive Disorder). Only the broken family is fact. The other
symptoms I can only guess at being diagnosable along with outward appearances
of Tourette Syndrome. He is 19 now. Diagnosed at 17 with paranoid schizophrenia.
When did some of these symptoms start? At age 12 I was getting phone calls from
school about clapping and barking in class. Symptoms of Tourette's? I don't
know. Passive at school yet hyper at home. ADD or ADHD? I don't know. If he was
telling me something and I interrupted he would start all over. OCD? Again I
don't know. I am now being informed that OCD can be an early symptom of anxiety.
Was he anxious even back then? I know he didn't like being left alone and had
trouble being motivated to go to school.
So if all of this was showing itself at age 12, I can only guess as to
when he started with symptoms that had no outward signs. As a parent I chalked
it all up to him acting out because he was from a broken home and needed the
reassurance that no matter what he did his parents still loved him. I still
think this. As children we often struggle with that even from a
"normal" home life. Now add being moved across country from one
parent to another approximately every two years. A little background. I left/disserted
my children when they were 5 and 6 as I found myself in over my head with a
drug addiction. Talk about recipe for disaster. To reassure you I am now drug
free. I was basically absent from their lives for about 6 years. I started
rebuilding a relationship with my son when he was 12. By that time the above
symptoms where already firmly in place. Could any of this have been avoided?
Another I don't know. I can't go back in time and fix any of it. I can only do
my best to have empathy and understanding and try to build a stronger
relationship with my son so that he can recover and build a life for himself.
I don't know... a little humbling to say. Even as adults
when we are supposed to be self-confident, mature, responsible, etc... We don't
want to admit that we just don't know. Along time ago I admitted to myself that
I know very little. I have a lot to learn about myself and the world that I
live in. I have spent so much time on the internet looking up psychosis,
schizophrenia and the side effects of numerous medications. All so that I can
have some understanding of what my son is going through. In the end, I don't
know and I can't know what it is like to be inside of his head. In my opinion
it's very liberating to admit I don't know.
One step I did take was to buy Dr. Xavier Amador's book I
Am Not Sick, I Don't Need Help. The Ontario Schizophrenia Society told me about
it. If you Google it you can buy directly from his website. Did it give me a
great insight into psychosis? Can't really say as I had already spent so much
time researching it. But it did help me to learn how to communicate better with
my son so that we were not constantly butting heads over something that neither
one of us has much, if any, control over. There have been so many websites that
I have been to but I do recommend checking out www.leapinstitute.org . For me
the important thing that I took from this and the book was LEAP. Listen
Empathize Agree Partner. I even try to use this in all of my relationships. I
don't always succeed but I do try. Keep in mind this is my interpretation. I do my best to listen to what he is telling
me, not just hearing the words. I ask questions about what he believes in. They
call it reflective listening. I try to empathize, understand how he is feeling
and what is motivating those feelings. If I do this I can to a certain degree
understand why he is feeling the way that he is. The more things we can agree
on, or agree to disagree on, the more he can trust me to listen to him and hopefully
we can slowly build a partnership of recovery. I had to understand that what he
is telling me is his reality. Just as real to him as the computer I am now
typing on is real to me.
Insight... It's not just their insight into what is
happening but our own insight into what is happening to them. Through some of
my research I came across the term anosognosia. Wikipedia states that
"anosognosia is viewed as a deficit of self-awareness, a condition in
which a person who suffers certain disability seems unaware of the existence of
his or her disability. Unlike denial, which is a psychological defence
mechanism, anosognosia results from physiological damage on brain
structures..." There is more to the
definition. Basically it's a lack of insight caused by damage to specific parts
of the brain. I watched some video's on the internet where Dr. Amador spoke on
this. They were eye opening. I have read that approximately 50 percent of
individuals with schizophrenia is affected by this. For me this is very
important to understand because if I put myself in my son's shoes I can began
to understand why he does not think there is anything wrong and why he does not
want to take medications for a disease he does not believe he has. He is not
trying to be hard headed or difficult. How would I feel if I was being told I
had to take lithium or some other medication when there is nothing wrong with
me? Pretty upside and angry. So I can see why he would think paranoid thoughts
about people plotting against him. I would. Now what? Ok so I have empathy for
his inability to see himself clearly. Honestly I don't think to many of us can.
I see myself as a person trying to help those I love. To build a better,
healthier life for all of us. But how do they see me? Well... Controlling and
stubborn are certainly words that I have heard. Considering my own past
mistakes I'm sure hypocrite would be in there somewhere. I can't change any of
this. But I can have empathy for it.
To add to my son's original diagnoses he now has
concurrent disorder. Over the past two years he developed a chronic marijuana
addiction. So he has two disorders going on at the same time. Psychosis and
addiction. I consider myself lucky that I can at least understand the
addiction. For those who have never suffered from addiction hopefully I can
shed some light. I have read that a lot of people with psychosis turn to street
drugs and/or prescription drugs to self medicate and cope with their symptoms,
almost 50 percent. I know for my son, marijuana makes him feel ok, secure, at
ease, comfortable... don't we all want to feel this way? From my own experience
I can tell you that the need to use or self medicate can be overwhelming to say
the least. How overwhelming? I could go days without eating or sleeping but I
couldn't go days without using. It got to the point where I could not go outside
without making myself feel ok first. I thought I needed it to be ok. More than
I needed food or sleep. I use these examples because I'm sure that we can all
understand how important it is to eat and sleep. Our body needs it function. So
how strong is this desire to feel ok that it becomes more important than eating
or sleeping? How many of us smoke
cigarettes, drink coffee and/or alcohol. In our eyes we need them to get us
through the day. To deal with stress, to wake us up and to wind down after our
day. These things are legal so we can justify them as being ok but in the end
they are still crutches that we use to cope with our daily lives.
I'm sure most of us have been told what schizophrenia or
psychosis is. "Any of a group of psychotic disorders usually characterized
by withdrawal from reality, illogical patterns of thinking, delusions and
hallucination and accompanied in varying degrees by other emotional, behavioral
or intellectual disturbances." Great. What exactly does that mean? I think
I prefer Wikipedia's definition. "a mental disorder characterized by a
breakdown of thought processes and by a deficit of typical emotional response.
Common symptoms include auditory hallucinations, paranoid or bizarre delusions
or disorganized speech and thinking..." Schizophrenia is from the Greek
roots of skhizein (to split) and phren (mind). Not to be confused with split
personality, etc. It's a "splitting of mental functions". It is
thought to mainly affect cognition. One definition of cognitive is the process
of obtaining knowledge through thought, experience and the senses. So my
understanding is that it affects his cognitive thinking. What does all this
mean to me? If we learn and process information through thought, experience and
our senses and these things are not functioning properly then our knowledge of
reality is going to be, for lack of a better word, dysfunctional. I have looked
at pictures of the human brain on the internet where they have compared brains
with altered insight (psychosis) and preserved insight (no psychosis). One
version can be found at www.treatmentadvocacycenter.org under the problem
section. You can see that physically they are different. Therefore this is not
just a psychological disorder but a physical disorder as well. We would
understand if someone had a broken leg that they would not be able to walk as
the rest of us do. I think we need to understand that some individuals can not
think and react like the rest of us do.
My son only just came to live with me, again. He was
living with another relative for the past two years as we thought it was the
best place for him during and after his first psychotic break. Recently we all
had to agree that the situation was not working, in fact was getting worst due
to a growing addiction and the added
pressure of finances and him turning 19. He has been with me for 2 weeks now so
I'm getting the chance to put some of my theories, approaches and
understandings to the test. The first thing I had to throw out the window was
my preconceived notion of "How hard can it be?" Hard does not began
to cover it. I may not have schizophrenia/psychosis but I have seen how easily
a family's life can be dictated by it. This is a family disease as it affects
everyone. I'm pretty sure that my own family is not the only one dealing with
the fact that everyone has their own opinions as to what the problem is and how
to fix it. Go easy and give all the love and support. Go hard and lay down the
law and expectations. I'm hoping to find a happy medium. I'm lucky that I have
family and a best friend that I can talk to and unload on. Even with that
support I have come to realize that none of them can really understand.
Worrying that one wrong sentence can undo a relatively calm day. And it can as
I have recently discovered. To be constantly on your guard is very tiring. I
have been prescribed sleeping pills as I have insomnia yet for the first week
or so I was afraid to take them in case I needed to be instantly alert at
night. I try to remember however that as hard as it is on us it's got to be
harder on him.
Over the past two years I have been in contact with my
son and the relative he was living with, even visited, so I thought I knew who
was getting off that plane. I knew he had a drug addiction. I knew his version
of reality was different then mine. I knew he wasn't eating and sleeping right.
I knew there had been issues with adherence to taking medications. I thought I
knew... My little boy is here! Well he's physically no longer a little boy. He's
19 and he knows that he is 19. The next three days consisted of him almost
literally climbing the walls, of misused medications, stolen money, hidden
alcohol, him not eating and sleeping and of course the arguments that he's an
adult now... I think, I should have been more prepared because I knew... I don't think I could have
been more prepared, no more than when I brought him home as a baby and found
out how tough being a mom can be. I made a lot of mistakes then and now. I
didn't watch my purse close enough. I didn't know what I was seeing or how to
respond. Not that I know now but I'm trying. All medications are in my purse
and my purse is constantly within my sight. Yes it even goes to the laundry
room with me. Did I feel bad that I was so obviously not trusting him? Only for
a minute. I know what it's like to have an addiction and how hard it is to walk
away from that strong a temptation. I recently tried quitting smoking again...
failed...
Now I have some decisions to make for my little man
because despite him being 19 and an adult, he would not appreciate me saying
this, he is unable to make these decisions for himself. I can't do anything
about his psychosis, especially when he cannot or will not see that he has
schizophrenia. Some things are beyond my and his control and I have to accept
that. I can however control my home to a certain degree. I am taking the no
tolerance approach when it comes to drugs. They will not be tolerated in my
home. Can I say for 100 percent certainty that they will never make it into my
home? No but if they do they will get flushed. Again I consider myself lucky
because he has no access to money at the moment. That will change of course. In
the meantime I have made it clear to him that this is what I expect and I have
been doing my best to follow through on this. Wild dagga (sold at convenient
stores as incense but also called South African Marijuana) flushed, vodka and
all other alcohol down the drain. Another one to watch for is Salvia.
Apparently it was on the news awhile ago that it's no longer legal in Canada
because it is causing deaths in teenagers. However try to find out who is
responsible for getting it out of our stores, apparently no one has
jurisdiction... Another hallucinogen they are selling at convenient stores as
incense, right beside the glass pipes... really... who smokes tobacco out of a
glass pipe?
I remember sending articles on nutrition to my son's
caregiver hoping it would help to keep his psychosis a little under control. I
read articles about caffeine increasing and tobacco use decreasing the effectiveness
of medications, limiting sugar because their brains are already over
stimulated, giving sugar to help with
the drug addiction so they get a food high, limiting glucose, etc. I sent out
vitamins and melatonin. Easy right? You're not supposed to take vitamins within
2 hrs of other medications especially vitamin C. My son smokes a lot so I worry
about him lacking in vitamin C. I now have him taking a multi-vitamin at dinner
but at first it was "I don't need it." Get the fruit chewable ones,
kind of taste like gummy bears. Had to get the same ones for my husband. To
little or too much caffeine, ever try an energy drink? My son loves them. I
wish they were never invented. Calm to agitated in 15 minutes. Sugar and
glucose? How about happy to see him actually eat a whole plate of food. He
loves green salad as does my husband so that's becoming a daily dinner item. Junk
food? I'm a sucker for a good bag of chips myself. Did you know roast chicken
chips go really good with beef jerky? Melatonin. He will take it. Not because
he wants a better night sleep but because it gives him more vivid dreams.
The difference between the first week and the second
week? No drugs. I'm referring to street drugs, marijuana. For the first time in
probably a year or more my son has been marijuana free for over two weeks.
Honestly, I'm excited about this. Of course I have to keep reminding myself
that there is no way I can keep him this way. One day he will have access to
money and he will go get it. Why? Because he is an addict. That doesn't go away
over night. This I know from my own experience. Took me several tries, rehab,
and my life being in total shambles before I started on the road to recovery.
10 years later I still won't put myself into a situation where there is easy
access to my drug of choice. There's a reason they call it temptation. So when
my son tells me that I have no idea what he is going through with respect to
his marijuana "needs". He doesn't really like my answer because I do
have a clue. I have always been very open with my family, friends and even
employers about my addiction. One of my boss's took me out for lunch to
celebrate my first year clean. Addiction is also a family disease. It affects
everyone and the affects are long term. What will I do when he does come home
high or brings drugs home? Find it, flush it and deal with the another round of
withdrawal. Try not to get angry when he says "I'm an adult and I can do
whatever I want. You can't control me!" Of course this all being said when
he's eating my food, living in my apartment, using my internet while I do his laundry
with my purse in tow... Yes I'm being paranoid and controlling. My husband just
called me to let me know that the LCBO (local liquor store) is going on strike
if I wanted to get a bottle of wine. My answer. Perfect. I'm not being
sarcastic. I will be happy if they go on strike. One less thing I have to worry
about my son trying to get money for.
Anyways back to the difference between my son two weeks
ago and today. So far I have said very
little about the symptoms of his psychosis, you know the one he doesn't have. Again
more research. Are his symptoms aggravated by his marijuana use? Is marijuana a
coping tool, a crutch, a catalyst, a side affect or a cause? Again I don't
know. I do know that both began to become a problem at around the same time.
But I don't know if one caused the other or not. I will never know. His first
week, when he wasn't climbing the walls or bugging me for money for marijuana
or alcohol, he was spending all of his time practicing his chi and telekinesis.
He would spend hours trying to show me how he could move this piece of paper
with his mind. Imagine his disappointment when it wasn't working very well when
he knew for a fact that he could do it. He tried everything, different sizes of
paper, different holders. Believing in spirits, etc the way that he does he
concluded that they were not allowing him to show me. Illogical? Not really.
Put yourself in his shoes. There is something that you know for a fact that you
can do and now for some reason you can't even though nothing externally has
changed. Really the conclusion can only be that someone or something is messing
with you. I won't go into all the symptoms surrounding his chi beliefs. They
are beliefs I cannot change and they are his. Today... he has not tried to
practice his telekinesis for at least 4 days. Still talking to me about his chi
but very understanding of the fact that I am unable to participate. I attribute
this to the lack of marijuana and alcohol. If anyone has ever gotten high or
drunk you know that your reality at the time is altered. I'm pretty sure that
if I spent a significant amount of time under the influence of drugs or alcohol
I could imagine myself capable of unlimited things based on my belief system.
Point in fact, during my addiction I do recall having conversations with my
deceased mother. Very real to me at the time and even now years later I can
still recall just how real that conversation was. I know now that it wasn't
real. My son however does not know that it's not real. Remember his brain does
not function like mine. For me it's like thinking about our government. We
always say "The right hand doesn't know what the left hand is doing."
Guess what? His brain is no different. Signals are just not making it to their
destinations.
The difference in his anxiety level. So anxiety is a big
part of psychosis. Ok that makes sense. I can try to imagine how anxious I
would feel if everything I know to be true was being contradicted by everyone.
I have asked doctors and counsellors, explain to me anxiety. Tell me what the
symptoms are and what anti-anxiety medications is supposed to do. In my opinion
we all live with anxiety. I've had panic episodes so I know they can be scary.
When I ask my son what are his symptoms of anxiety. He has two symptoms, palms
sweating and nervous leg. He gained a third symptom when I explained how my
panic episodes made it hard to breath. In the first week we ended up at the
doctors getting two different prescriptions for anti-anxiety. The family doctor
was doing his best to be accommodating until I could get my son to the
psychiatrist. Both of those prescriptions got abused. This is new to all of us. I don't think the
family doctor has other patients suffering from psychosis. Even the pharmacy
has never dealt with my son's medications before. As for the anxiety. I don't
think my son has high anxiety. I could very well be wrong. I'm still trying to
get a clearer picture on this. My son has never learned how to cope with even
minimal anxiety as he learned very early how to cope using marijuana. For two
years he has been using marijuana to alleviate his anxiety symptoms and make
himself feel ok. So how is his anxiety now? He hasn't mentioned it for about a
week now. No anti-anxiety medications after the first week, no marijuana for
over two weeks and other then one beer last week no hard liquor since the first
week. Coincidence? Maybe. I don't think so. Please remember this is only my
point of view so don't make any decisions without a psychiatrist. I think my son learned a long time ago what
symptoms we will have empathy/sympathy for, the ones that we can understand. In
my opinion most of his anxiety comes from marijuana withdrawal. He developed a
chronic marijuana addiction this means he used almost daily over a long period
of time and not small amounts. I'm certainly not out of the woods on this. Hopefully
I will be lucky and if I can keep him clean for extended periods, because I
know I can't permanently, then he can learn how to cope with what anxiety he
does have. For those that do suffer from high anxiety I can only have empathy.
Adherence to anti-psychotic medications. So far I have
not been met with a lot of resistance on this but it's growing almost daily. It
was a condition I set before he came to live with me that he take his
medications and that we can negotiate decreasing them with his psychiatrist. He
wants control over them. I simply said no and listened to the "I'm an
adult..." Every now and then especially if we have butted heads during
that day, he will give me grief about taking them all. I've allowed him, no
that's not right, he has decreased the amount on two occasions now. In the end
what can I do? Tell his case workers and hope that his psychiatrist can have
better luck in talking him into taking them. Considering what I have read about
the percentage that actually do adhere to taking it, I'm happy to have him
taking what he is. If I push too hard he can resist even more. I remind him
when he wants to decrease even more of the agreement we made and that he needs
to discuss this with the psychiatrist. He's being relatively accepting of this
and in his eyes he is decreasing them responsibly. He actually asks for his
night time ones because they are the bigger dosages and help him sleep. Another area that I have been lucky in as he
actually doesn't mind to much what he is currently on because the side effects
are not that noticeable and even he noticed that he was able to concentrate on
things better. Let's hope I can still be saying this in the near future. I do have to remind myself that he is being expected
to take medications for a disease that he does not feel that he has. How would
I feel if I was being told I had to go through chemo when I don't believe I
have cancer?
I'm trying to approach this as I would any recovery
because that is the goal. To have him recover mentally and physically from the
psychotic breaks that he has had. I've
read each break can take up to a year to recover from. Five hospital admissions
in two years. I've been told by one of his old case workers that my son is the
one of the worst cases they have seen in that particular hospital. A little
scary. I've read the statistics. 1.1 percent of the population age 18 and older
in a given year have schizophrenia. That's
over 1 out of every 100 people. Even more scary is that 10 percent
commit suicide. That's 10 out of every 100 people with schizophrenia. I'm not
trying to cause mass hysteria or anything but I can't ignore the facts. This
disease can be fetal. This scares me way more than dealing with the daily
symptoms of his psychosis. Grandiose delusions (fantastical beliefs that one is
famous or otherwise very powerful), hallucinations (unreal sensations that
appear real), confabulations (memory disturbance, defined as the production of
fabricated, distorted or misinterpreted memories about oneself or the world,
without the conscious intention to deceive) and paranoia (feelings of
persecutions). Yes he has all this except for the hallucinations which seem to
have disappeared when he started his latest medications, despite the marijuana
use. For just a moment let's step back in time to when our kids were kids, around
the age of 10 or even earlier. Does any of the things that you are seeing or
hearing seem familiar? I know they do to
me. I may be looking at the physical body of a 19 year old but that's not who
I'm talking to. We know that psychosis effects cognitive thinking and in my
opinion stunts their cognitive growth. Since my son started showing outward
signs at age 12, I estimate that his cognitive thinking probably stopped
developing properly even before that. Do you remember what it felt like to be
10? Insecure about how you looked, paranoid about what others thought of you, angry
at your parents for treating you like a child, wanting any type of control over
a life you had no control over. How about wishing you had the power to control
other people so you could make them do what you wanted. Wishing you were some
type of God. Wishing you could fly like you did in your dreams. Emotions you
couldn't control or even understand. How about the temper tantrums? You can't
tell me what to do. I'm old enough to make my own decisions. The inevitable I
hate you. How about the lack of basic hygiene. Does any of this resemble what
you are seeing now? It's unfortunate that his birth certificate says he was
born in 1994 and therefore is legally an adult.
All I can do now is try to have reasonable expectations
from my little man or big boy, however you want to look at it, and try to teach
him how to cope with a disease he doesn't see because of anosognosia, denial or
impaired cognitive thinking. I just reread that last sentence and thought that doesn't
really make sense. How can I do that? I
don't know. I will do my best to keep him drug free, on his medications and
help him to learn how to take care of himself. Baby steps. I will count the
good things and acknowledge the progress we are making. He's currently without
marijuana. He's taking showers. He's brushing his teeth. His nails are cut. He
got a haircut. He's eating his dinners and sleeping at night. He even gets out
of my way now when I'm cleaning up his messes. Next step. Getting him to clean
up after himself. I can always hope! How about teaching him basic manners. No
swearing at mom, talk to me with respect. I can forgive little outbursts but
next time try harder. Saying thank you. I have a husband who thanks me for every
dinner I put in front of him. I'm glad my son sees this and he does thank me
more and more for things I do for him. He always was polite. How can I expect
to teach these things if there's an impairment getting in the way? Repetition.
Two years later my husband is finally starting to pay attention to the messes
he makes and I think children learn faster so there is always hope. Adjusting
my own expectations I think is key. I've ranted on occasion over the last
couple of years how odd it is that we expect our children to be more mature and
responsible then most of the adults in our life. Clean up after yourself, you
should see my kitchen cupboards after my husband makes his lunch or morning
coffee. Don't get your fingerprints all over the wall, my front hallway is
nothing but job site dust. How about don't tell lies or make up stories, have
you listened to adults gossip? Mostly I think I need to not get cocky. Not
forget what I'm dealing with. Don't think it's been a good day/week so I can
take a shower and leave my purse unattended. Remember temptation. We had to
baby proof our homes when they were infants because hot things and electric
outlets just seemed to attract them. Honestly just today my son had to touch
the deep fryer to see if it was hot. Deep breath, count to ten... Think
wouldn't it be nice if we could all be on anti-depressants. Just kidding...
maybe not.
As for my sons belief system. I can't change it. I can
only try to give him direction and in my opinion logical suggestions, other
ways to look at the same thing. Be an investigator and debater. Ever do this in
school where you had to argue a side of something and you didn't get to pick
which side. You had to get the facts and build a case. Don't be afraid to ask
questions. That means you are listening and your loved one should respond to
that. Maybe you will hear things you don't want to hear but guess what, you
asked. How else are you going to get even a small idea of what is going on
inside that head. His delusions that he is a shaman healer and will one day
rule the world. Who knows, maybe one day it could be true but for now I just
try to slowly deflate that bubble instead of bursting it. I try to put in place
some boundaries. For example my soul is mine alone and no one not even him has
the right to control it. I explain that I live in this physical world and the
laws of physics have to be followed. Gravity exists here and I don't levitate.
No I don't feel his power and I have no reason to lie about it. He accepts this
as he is not lying either. In his reality he can levitate. I also have to
remember that his schooling knowledge is limited. What age do you learn about
gravity and physics in school? I don't remember. He hasn't attended school full
time since before grade 8.
Most of all remember to give love. Even as infants when
they pulled our hair and we got mad we still knew that they needed to know we
loved them. When he comes to me to give me a hug, I stop what I'm doing and hug
him back. It's maybe 30 seconds but it's the reassurance we both need that no
matter what else is going on we have love. I will need to count on this love
sometime in the future when things get complicated again and I need him to know
that I've made a decision he doesn't like because I love him and I'm trying to
protect him. We do have another common interest. Keeping him out of the
hospital. I need to reassure him that this is something I don't want either. If
taking a pill or seeing the doctor will help stop this from happening can we please
try. This is the partnership we need to work on and strengthen together.
I only meant to write a short note and it seems I have
touched on so little. And barely over two weeks into living with this as a part
of my daily life. I can only promise myself to keep it up as long as I can and
hopefully I will make a difference. See where I'm at two years from now...
For those without family and friends who are going
through this alone I can only hope that somehow they can get the help and
support they need.
Remember these are all my own opinions and should be
researched and discussed with professionals.
Mom
BarbieBF
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