Saturday, Jay felt up to going to the stores to look for a couple things for his garage as his Father's Day gift. I was really happy for him to get out of the house so I drove him to Home Depot and Sears. If someone you love is experiencing social anxiety and is afraid of people, the best place to be might NOT be Sears on Father's Day weekend. It was packed.
On top of that, I parked at the Sears sign at the mall which wasn't really where the store was at all. We had to walk across the entire mall. It was the first time Jay had been to the mall since he got back from Afghanistan in April. He was very nervous as we walked passed all the people. It must have been Basic Training Graduation Day too because we saw lots of young men in their Class A's (their fancy uniform). We walked by one young couple, he in his uniform and she in her pretty summer dress, and my memories returned to me of the day Jay graduated Boot Camp.
Jay had entered the Army rather late (he was mid-twenties instead of the more common teenager). He had worked in factories since high school and was sick of it. When our factory downsized and he was pushed out of his good job to a harder, lower paying job within the company he looked to the Army to get us out of the trap we were in. The plan was he would join, I would stay on at the factory, I would quit later and join him at his duty station. Then he would either stay in the military or quit after his enlistment time and go to school since they would pay for it. Seemed like a good plan.
He graduated from boot camp and I had gone to Oklahoma to see him. We had been apart for 11 weeks and that felt like a lifetime. I'll never forget how handsome he looked in those Class A's. And even though we weren't as young as that couple at the mall, I felt that rush of excitement that they must have been feeling- being at the start of a great journey, with a beautiful future just up ahead. Jay must have felt something too, because as we walked by he whispered (more to me, and not to that poor boy) "I was You, once. Then they sent me to Iraq and Afghanistan, nearly blew me up, and now I can't even set an alarm clock. Enjoy!" I know he has a lot to be angry about and he is entitled to those feelings. But, I still choose to think that that young couple will live happily ever after.
Speaking of Happily Ever After, our anniversary was Monday. It was bittersweet because six months ago we had planned for a romantic second honeymoon to the coast. Now, Jay is so gripped by fear that he can't cross even one state line to visit our family let alone travel to the ocean. I had wondered how this anniversary would unfold.
Normally, I would have played that classic woman-child game of not mentioning it just to see if he would remember. That would have been mean right now so I brought it up a week in advance and often throughout the days leading up to it. I hadn't expected a gift because he is only away from me when he is in therapy so I knew he wouldn't be able to buy me anything. I control the bank account so he wouldn't be able to sneak anything by me online either.
But I hadn't expected that there would be NOTHING. It was just another day. We went to Autozone so he could pick up a part for his car and as we walked around the store I was secretly feeling a little sorry for myself that our life had come to this. No more romance. No more sweet words.
But as we were standing in the checkout line he turned around and without any words, he pulled me to his chest and gave me a big, long squeeze. Right there in a crowded autoparts store my husband wasn't afraid to wrap his arms around his wife and give her a big bear hug-- not because it was our anniversary but because he loves me every day. Happy Anniversary to us, indeed!
Thursday, June 24, 2010
Saturday, June 19, 2010
The Memo Board
I am feeling neglectful. It has been a very busy week and I've had trouble grabbing the me-time to hop on the computer to blog about what's been going on. I want to thank Erin again at Luck & Bliss for making that cute little button. She is such a delightful, ray of sunshine that just perks me up every time I turn on my computer. I love her conversational style, her creativity, and her willingness to share thru her tutorials. Because of her thoughtfulness, she has single-handedly turned my little journal into full-fledged therapy for me by mentioning me to the ladies who read her blog. She truly does have some very kind readers and the comments I've received have really helped me during this lonely time. I cannot thank her enough and I am so happy to have crossed internet paths with her and the ladies she has introduced me to.
Normally, I type until my fingers nearly fall off and then edit away until I'm left with what is probably still WAY too many words. Today, though, I want to just share what I woke up to a few mornings ago.
To set it up, Jay has very little short term memory. He has hung several dry-erase boards thruout the house to keep track of what is in his head, to make lists of what he wants to accomplish for the day, and to post rules for the kids. He calls them his Prosthetic Brain.
A few nights ago we had a small disagreement. We rarely argue now because honestly it really is useless. Not because we are soooo in love and we see how silly arguing is--that would really make a person gag, huh?-- but because he processes information differently now and any time he feels threatened in any way he gets very defensive. Even the most innocent comment from me can send him spiraling down hill for the whole night. So it's in everyone's best interest for me to let things roll off and to not make waves. This isn't me walking on eggshells. This is me seeing that my love is hurting and not wanting to exasperate a problem by always having to have my way. This is working for now because for one, I am pretty cooperative and do not NEED to have my way all the time, and for another, he will most likely not remember our conversation the next day. So why go thru the drama? That's not to say that our conversations are pointless. But, the day after a conversation of any type he is less likely to remember the actual details and words spoken and more likely to remember how those words made him FEEL.
But try as I do to not stir up trouble, I did hurt his feelings the other night when I didn't exactly agree on where the kids' game systems should go. He was annoyed by all the wires and thought the systems should be out of sight. I thought the kids should have easy access to the systems or they wouldn't play them. Long story short, this simple disagreement led to a major meltdown. What I perceived as a conversation about where to put the kids' toys, he heard outright ridicule of his ideas and rejection of him as a person. He was up past midnight trying to explain to me how badly he felt that I wasn't on his side. I went to sleep exhausted. Exhausted by the busyness of the day and exhausted by all the emotions that are wrapped into every detail of our lives right now.
The next day I found this:
I'm sorry for being so difficult. I can't imagine what kind of burden I can be sometimes. I love you very much and I love Nathan (Rush) and Paige, too. Sometimes I feel like such an alien. I promise I'm trying as hard as I can. Thanks for putting up with me. J
His little message made me cry. I hate that he feels so badly all the time. I hate that he feels like a burden. But, I love that he lets me know how he feels because it makes it all that much easier to adore him!
PS-I included his comment about my turkey burgers because I was just so danged proud:)
Saturday, June 12, 2010
Jan and Dr. W
Friday was a big day. Jay had his first appointment with Jan, the therapist, and a follow up appointment with the psychiatrist, Dr. W. Thankfully, my wonderful mother came down to watch Rush for the day. She called me the night before saying she had the day off and she would be here super early so that I could go talk to the doctors without the boy. She didn't ask. She just said, "I'm coming. You need to go." I can never repay her for that. It's a long drive down here and it was a long day for her to be stuck at my house since the appointments were stretched out so far. On top of that, I misread the appointment sheet and thought our psychiatrist appointment was at 1pm. We showed up at the office and they told us it wasn't until 1500. Jay told me a long time ago that I need to learn military time. I thought I had. 1500 is 3pm not 1pm!!! The rest of society seems to run just fine using AM and PM so why can't the military? (Ok, a quick google search slams me with the knowledge that the 24hour clock is the most used in the entire world. Oops. It appears that I cannot expect the military to cater to me.)
So without little Rush dominating the room, Jay and I were able to have very productive visits with the therapists. I had an appointment with Jan several weeks ago while Jay was still in the hospital. I thought she was an artsy type who seemed really laid back. I had told Jay that he was going to LOVE her. Our appointment got off to a rocky start though when she lost the giant questionnaire that Jay had spent 30 minutes filling out. She searched for nearly 10 minutes between her desk and the front office. Finally she found it...on her desk. One of the questions was "How do you relax?" Jay had stated that he likes to watch Spongebob Squarepants with the kids. Jan read the questionnaire and asked, "This Spongebob, it's a cartoon I guess? Does this say Square pants?". It turns out we had just met the ONE person in the country, possibly the world, who had never heard of Spongebob. I kept waiting for her to say she was just kidding but she was completely serious. We found this inconceivable since Spongebob has infiltrated our house like black mold. Jay has only been a dad for seven years but I've been a mom for 16 and that little sponge has been in my face since my oldest was a kindergartener. To never have even heard of him makes me wonder what exactly it is she's sniffing from those aromatherapy bottles. But scatter-brained and un-commercialized as she might be, we like her. And more importantly, she likes Jay and wants to help him. Anyone who wants to help him jumps to the top of my favorite people list.
And to be fair, I suppose I can see how someone might go thru life without ever knowing about Spongebob. Her child is grown, perhaps she has no grandchildren. She might not watch TV, and that's not terribly uncommon. Now that I think about it, I feel like a big jerk for ever suggesting that she's somehow unusual. However, as a mom with kids raised in the Spongebob era, I still find it hilarious.
Our appointment with Dr. W lasted two hours. He is the most considerate and caring doctor I have ever met. He is unquestionably concerned with Jay's case and very much wants for him to get well. He even handed Jay a piece of paper that said You Are Repairable. I thought that was so sweet. I went through my list of concerns: not driving, unable to leave him alone, the zombie-ness, the lack of short-term memory, etc. He addressed every one and is convinced that Jay has had a TBI (traumatic brain injury). Most likely resulting from a particularly nasty blast that occurred while he was in Iraq. Strangely, I am happy to hear this. I have always thought that this one particular explosion had caused damage but I had no proof. I still don't, but at least I have a doctor who believes that this is the case and that it needs to be examined. He thinks that an MRI will not provide the details that he wants so he'll send Jay in for something more detailed. I am not excited to hear that my husband's brain is scrambled. But, I am comforted to know that what Jay is experiencing might actually show up on 'paper'.
Dr. W has filled out our paperwork to begin the med-board process. This will be the first step to getting out of the military. It could still take forever but there is a Warrior Transition Unit that Jay will go to while we ride it out. He will still go to outpatient therapy every day with the other guys (and girls) but instead of returning to his unit to be their medic, his main job will be to get well. I am so glad that I went to this appointment because there was so much information exchanged that there was no way Jay could have kept it all straight. I had to write it all out when I got in the car because I knew that I would never remember it all. On Monday we drop off the paperwork that Dr. W started and pick up the new prescriptions. Then we wait.
I have so many emotions tied into leaving the military that it will have to blogged another day. This post is long already. I am happy that the process is being started to get Jay away from the environment that causes him the most stress and at the same time nervous about our financial future. But if there is one thing I am learning from this experience it is that there is little use for my worrying. I can plan and plot and diagram and chart our future all I want. But if there is something waiting around the corner to knock us off our path then I will just have to scrap it and start over. This is true for everyone. It would do my up-tight nature good to just let go of the wheel for a while.
So without little Rush dominating the room, Jay and I were able to have very productive visits with the therapists. I had an appointment with Jan several weeks ago while Jay was still in the hospital. I thought she was an artsy type who seemed really laid back. I had told Jay that he was going to LOVE her. Our appointment got off to a rocky start though when she lost the giant questionnaire that Jay had spent 30 minutes filling out. She searched for nearly 10 minutes between her desk and the front office. Finally she found it...on her desk. One of the questions was "How do you relax?" Jay had stated that he likes to watch Spongebob Squarepants with the kids. Jan read the questionnaire and asked, "This Spongebob, it's a cartoon I guess? Does this say Square pants?". It turns out we had just met the ONE person in the country, possibly the world, who had never heard of Spongebob. I kept waiting for her to say she was just kidding but she was completely serious. We found this inconceivable since Spongebob has infiltrated our house like black mold. Jay has only been a dad for seven years but I've been a mom for 16 and that little sponge has been in my face since my oldest was a kindergartener. To never have even heard of him makes me wonder what exactly it is she's sniffing from those aromatherapy bottles. But scatter-brained and un-commercialized as she might be, we like her. And more importantly, she likes Jay and wants to help him. Anyone who wants to help him jumps to the top of my favorite people list.
And to be fair, I suppose I can see how someone might go thru life without ever knowing about Spongebob. Her child is grown, perhaps she has no grandchildren. She might not watch TV, and that's not terribly uncommon. Now that I think about it, I feel like a big jerk for ever suggesting that she's somehow unusual. However, as a mom with kids raised in the Spongebob era, I still find it hilarious.
Our appointment with Dr. W lasted two hours. He is the most considerate and caring doctor I have ever met. He is unquestionably concerned with Jay's case and very much wants for him to get well. He even handed Jay a piece of paper that said You Are Repairable. I thought that was so sweet. I went through my list of concerns: not driving, unable to leave him alone, the zombie-ness, the lack of short-term memory, etc. He addressed every one and is convinced that Jay has had a TBI (traumatic brain injury). Most likely resulting from a particularly nasty blast that occurred while he was in Iraq. Strangely, I am happy to hear this. I have always thought that this one particular explosion had caused damage but I had no proof. I still don't, but at least I have a doctor who believes that this is the case and that it needs to be examined. He thinks that an MRI will not provide the details that he wants so he'll send Jay in for something more detailed. I am not excited to hear that my husband's brain is scrambled. But, I am comforted to know that what Jay is experiencing might actually show up on 'paper'.
Dr. W has filled out our paperwork to begin the med-board process. This will be the first step to getting out of the military. It could still take forever but there is a Warrior Transition Unit that Jay will go to while we ride it out. He will still go to outpatient therapy every day with the other guys (and girls) but instead of returning to his unit to be their medic, his main job will be to get well. I am so glad that I went to this appointment because there was so much information exchanged that there was no way Jay could have kept it all straight. I had to write it all out when I got in the car because I knew that I would never remember it all. On Monday we drop off the paperwork that Dr. W started and pick up the new prescriptions. Then we wait.
I have so many emotions tied into leaving the military that it will have to blogged another day. This post is long already. I am happy that the process is being started to get Jay away from the environment that causes him the most stress and at the same time nervous about our financial future. But if there is one thing I am learning from this experience it is that there is little use for my worrying. I can plan and plot and diagram and chart our future all I want. But if there is something waiting around the corner to knock us off our path then I will just have to scrap it and start over. This is true for everyone. It would do my up-tight nature good to just let go of the wheel for a while.
Wednesday, June 9, 2010
In-Laws and Lots and Lots of Lasagna
It seems like it has been forever since I've updated. Every day there is something new that I want to add but it seems like I can never sneak away to the computer for a few uninterrupted minutes. I really miss our laptop. I could be anywhere in the house, typing til my heart's content, without a twinge of guilt. But now that I have to get on the Ol' Dinosaur in the back room it's very obvious that I'm neglecting something/someone. My laptop died a few months ago and instead of taking it in to someone who might be able to fix it, Jay has decided he wants to give it a go. I'm nervous because according to You tube instructions for our particular problem there is soldering involved. I'm sure Jay is capable of fixing it. I just don't want his shaky hands to cause him to fail and ruin his day. I'd rather just not have the silly thing than for him to have another reason to be depressed.
He's had so many good days lately. (I'm afraid to type that out.) I know he's had bad moments within those days but at least he's been lucid most days. We did have a rough night Saturday. We had a leaking pipe that happened to be in the closet. The dripping of the water and the smell of the pipe reminded him of Haditha Dam which is a place he slept for a while. This of course led to thinking of other stupid Iraq crap, thus tossing him down the rabbit hole for pretty much the rest of the night. He was pretty much gone by the time we got back from Lowe's with the pieces to fix the pipe. He sat on the floor while I crawled inside the closet. He fixed the broken pieces while in a complete fog and handed them off to me to screw in. It was excruciatingly slow and what would have been a five minute job took over an hour. But our water was turned off and we had no idea when he'd return to normal. Luckily for me my husband takes two or three (or more) baths a day so being without water wasn't an option for him, even when he was a zombie.
Monday my in-laws were supposed to come down for a visit. They flaked, of course. But they said they would be here Tuesday. It would be Jay's brother, sister-in-law, their three kids, my other-mother and her grand daughter whom she is raising. I spent the whole day scrubbing my house and baking. I made cookies and assembled a Reese's dessert. I put together a big lasagna and had it ready in the fridge. I bought snacks for the kids. In my heart I knew they weren't really coming but I went thru the motions just in case. They were supposed to be here around 3pm. Jay texted his brother at 5pm asking where they were. It turns out they couldn't come because they got stuck dog sitting. They didn't even bother to call. This is the same brother and sister-in-law who didn't even call Jay while he was in the hospital. When he was admitted I even personally called my sister-in-law and gave her Jay's address and number and told her how important it was that he hear from them. N-O-T-H-I-N-G. I give up on this family. Truly, I do not know where I'm supposed to summon up the grace to remain civil to these people.
So, now I'm stuck with this giant lasagna. My husband has no appetite and eats just enough to stay alive. I have one child allergic to milk products and another who thinks cheese is gross (WHAT?). I only made the dumb thing because it was something that feeds a lot of people and I could prepare it ahead of time. I suppose I could just pop it into the freezer but I don't have a lot of space. This just makes me so mad. My next door neighbor is a single mom. I've never really spoken to her but she has two tweens so maybe she'd appreciate the night off from cooking dinner. I also have a single neighbor across the street. She probably doesn't make giant lasagnas for herself so maybe I'll bake it up and split it with her. That would be weird, "Howdy, neighbor. Here's half of our dinner. Bon Appetit!" If my in-laws ever do come to visit I am setting out a plate of Saltines and Kraft cheese slices and that's it.
He's had so many good days lately. (I'm afraid to type that out.) I know he's had bad moments within those days but at least he's been lucid most days. We did have a rough night Saturday. We had a leaking pipe that happened to be in the closet. The dripping of the water and the smell of the pipe reminded him of Haditha Dam which is a place he slept for a while. This of course led to thinking of other stupid Iraq crap, thus tossing him down the rabbit hole for pretty much the rest of the night. He was pretty much gone by the time we got back from Lowe's with the pieces to fix the pipe. He sat on the floor while I crawled inside the closet. He fixed the broken pieces while in a complete fog and handed them off to me to screw in. It was excruciatingly slow and what would have been a five minute job took over an hour. But our water was turned off and we had no idea when he'd return to normal. Luckily for me my husband takes two or three (or more) baths a day so being without water wasn't an option for him, even when he was a zombie.
Monday my in-laws were supposed to come down for a visit. They flaked, of course. But they said they would be here Tuesday. It would be Jay's brother, sister-in-law, their three kids, my other-mother and her grand daughter whom she is raising. I spent the whole day scrubbing my house and baking. I made cookies and assembled a Reese's dessert. I put together a big lasagna and had it ready in the fridge. I bought snacks for the kids. In my heart I knew they weren't really coming but I went thru the motions just in case. They were supposed to be here around 3pm. Jay texted his brother at 5pm asking where they were. It turns out they couldn't come because they got stuck dog sitting. They didn't even bother to call. This is the same brother and sister-in-law who didn't even call Jay while he was in the hospital. When he was admitted I even personally called my sister-in-law and gave her Jay's address and number and told her how important it was that he hear from them. N-O-T-H-I-N-G. I give up on this family. Truly, I do not know where I'm supposed to summon up the grace to remain civil to these people.
So, now I'm stuck with this giant lasagna. My husband has no appetite and eats just enough to stay alive. I have one child allergic to milk products and another who thinks cheese is gross (WHAT?). I only made the dumb thing because it was something that feeds a lot of people and I could prepare it ahead of time. I suppose I could just pop it into the freezer but I don't have a lot of space. This just makes me so mad. My next door neighbor is a single mom. I've never really spoken to her but she has two tweens so maybe she'd appreciate the night off from cooking dinner. I also have a single neighbor across the street. She probably doesn't make giant lasagnas for herself so maybe I'll bake it up and split it with her. That would be weird, "Howdy, neighbor. Here's half of our dinner. Bon Appetit!" If my in-laws ever do come to visit I am setting out a plate of Saltines and Kraft cheese slices and that's it.
Tuesday, June 1, 2010
Our Weekend
What a crazy weekend. Last Thursday I was terrified that Jay was slipping backward with all his tics and twitches coming back. I was so relieved to see his face when he got off the van at the hospital that day. Seeing him meant that the therapist hadn't thought he needed to be admitted again and that he and I would have a four day weekend together. But by Sunday I was ready to call the hospital myself to beg them to admit him.
I can look past the tics that make him breathe erratically and the twitches that make him unable to control his arms and legs when he's been triggered. We can cope just fine if he never drives alone again. I will sleep on the floor for the rest of my life so that he can watch the doors all night if that's what he wants. The short term memory problems mean that often times our conversations feel hollow because I know that the next day he will probably not remember talking to me. But if there was only one thing I could make go away it would be the zombie-ness. Days and days of just blank stares and no conversation. It's almost more than I can take to know that my husband is in there but can't come out.
I had tried to post all weekend. I sat down to the computer with list after list of all the off-the-wall stuff Jay had done. Staying out in his truck til 2 or 3am trying to pull out a stereo system. Refusing/unable to sleep and nodding off while standing, smashing his head more than once. Or falling asleep in the chair with a bowl full of Fruity Pebbles. Getting mad and pulling down the obnoxious alarms he installed because I had accidentally left them off. (I had turned them off so they wouldn't wake him when I had to set the chair out to dry after cleaning milk and cereal off of it). I really could go on and on. But all of it is nothing compared to the empty stares and silence that came with it all. So there was no need to blather on about the day to day shenanigans. In a nutshell: he couldn't sleep so I followed him around day and night to keep him from killing himself, lather-rinse-repeat.
There were moments of lucidity in there though. Just bits. Kind of like in the movie The Notebook. I felt like the husband whose wife had Alzheimer's. He read to her and talked to her every minute, hanging on to that slight chance that she would have a moment of clarity and be herself again. And after she did come around for a few minutes, she would disappear inside her head again and not remember anything that happened. After this experience I think I understand what it might be like to care for someone with Alzheimer's. It's so hard to love someone who knows you, but doesn't see you. At least for us, the zombie-ness seems to come and go.
Clarity is so fragile for him. This morning started like most with no speaking and a little peck on the cheek. But when he got off the van today he was smiling. He came home ready to go shopping for stuff for his new car. He was laughing and kidding around with our son. We were so happy. Then as we were passing thru a busy intersection a car went by and honked incessantly. Not at us, but it didn't matter. The cussing started immediately, then the shakiness.
While we were at the auto-parts store a guy came up to him and started making conversation about the work he was doing. He wasn't an employee, just a nice guy who was interested in what he was planning for his car. I stood behind Jay like a mother watching her child on the playground, wondering how he would react with this other boy and if he'd make friends. Jay was polite but not talkative and the guy picked out the part he was originally reaching for and walked away. Jay told me he had wanted to talk but he just couldn't. I told him he did just wonderful and that it was going to take time. He has retreated to the garage for now. I'm hoping that he won't retreat inside his head too. It's been nice having him back today.
I can look past the tics that make him breathe erratically and the twitches that make him unable to control his arms and legs when he's been triggered. We can cope just fine if he never drives alone again. I will sleep on the floor for the rest of my life so that he can watch the doors all night if that's what he wants. The short term memory problems mean that often times our conversations feel hollow because I know that the next day he will probably not remember talking to me. But if there was only one thing I could make go away it would be the zombie-ness. Days and days of just blank stares and no conversation. It's almost more than I can take to know that my husband is in there but can't come out.
I had tried to post all weekend. I sat down to the computer with list after list of all the off-the-wall stuff Jay had done. Staying out in his truck til 2 or 3am trying to pull out a stereo system. Refusing/unable to sleep and nodding off while standing, smashing his head more than once. Or falling asleep in the chair with a bowl full of Fruity Pebbles. Getting mad and pulling down the obnoxious alarms he installed because I had accidentally left them off. (I had turned them off so they wouldn't wake him when I had to set the chair out to dry after cleaning milk and cereal off of it). I really could go on and on. But all of it is nothing compared to the empty stares and silence that came with it all. So there was no need to blather on about the day to day shenanigans. In a nutshell: he couldn't sleep so I followed him around day and night to keep him from killing himself, lather-rinse-repeat.
There were moments of lucidity in there though. Just bits. Kind of like in the movie The Notebook. I felt like the husband whose wife had Alzheimer's. He read to her and talked to her every minute, hanging on to that slight chance that she would have a moment of clarity and be herself again. And after she did come around for a few minutes, she would disappear inside her head again and not remember anything that happened. After this experience I think I understand what it might be like to care for someone with Alzheimer's. It's so hard to love someone who knows you, but doesn't see you. At least for us, the zombie-ness seems to come and go.
Clarity is so fragile for him. This morning started like most with no speaking and a little peck on the cheek. But when he got off the van today he was smiling. He came home ready to go shopping for stuff for his new car. He was laughing and kidding around with our son. We were so happy. Then as we were passing thru a busy intersection a car went by and honked incessantly. Not at us, but it didn't matter. The cussing started immediately, then the shakiness.
While we were at the auto-parts store a guy came up to him and started making conversation about the work he was doing. He wasn't an employee, just a nice guy who was interested in what he was planning for his car. I stood behind Jay like a mother watching her child on the playground, wondering how he would react with this other boy and if he'd make friends. Jay was polite but not talkative and the guy picked out the part he was originally reaching for and walked away. Jay told me he had wanted to talk but he just couldn't. I told him he did just wonderful and that it was going to take time. He has retreated to the garage for now. I'm hoping that he won't retreat inside his head too. It's been nice having him back today.
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