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Monthly Archives: May 2017

Autism: Hard To Keep Up

I must admit it has been extremely difficult for me to keep up with my blog lately.

My mom is here, and we have been visiting – but most days there has been some time during the day that I could have taken to write my blog. It isn’t that I don’t want to, or that she would be upset knowing that was what I was doing, or that I don’t have the time, or… but for me, one thing comes in, and others go out.

So my mom is here visiting, and this is the second day that I have been rushing to try to get several blog posts written in one day – because I am behind, as I was last time. Though to be fair, “behind” for me means that I am not three weeks ahead, but it still leaves me panicking and worrying that I will be late – for that is who I am.

I have to be early. The things that need to be done, I have to work on and get them out of the way (so a continuous stream of projects is very much not a good idea for me) and when something else is added to my life, other things will be left undone.

At this point in my life my blog is the longest thing I have publicly done in my entire teen and adult life. Everything else has fallen apart in this amount of time – or at least was very close to failure, with no hope of holding on. For that reason alone I am struggling with the understanding that I might not be able to keep up during the time my mom is here visiting, but I am also really pushing myself.

Today has been… I want to say a quiet day, but that isn’t actually the truth. I have been really busy, for it is Friday as I write, and Friday is my cleaning day. I cleaned bathrooms, changed the sheets on the beds, vacuumed, washed the floors, did (am still doing) laundry, and gave Molly a bath after she decided to roll in something in the freshly mowed lawn (I did clean up the yard before my son mowed, but maybe I missed something, or maybe it came from after, or…)

Then after/in between cleaning, we went for a walk. My mom is used to doing something most of the time. Since I am cleaning the house, she doesn’t have all that much to do – so we walk. We both really enjoy that. Besides, where I live is so much prettier than where she lives. Here we are surrounded by lakes and trees, and have nice trails close to my house to walk on. There it is traffic, and concrete, and old buildings.

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On top of that, we watched a movie (“Prince of Egypt”) together this afternoon.

But compared to other days, this day is quiet. We are tired. Sitting in the same room, neither of us are talking – which hasn’t been the case for the past ten days since she arrived. So with the quiet, I thought I had better try and write.

I hope I can keep it up.

 

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Autism: This Is Normal

After a few days, it became normal. Normal for her to be here. Normal to be talking to her. Normal to see her.

Just a few days in, and though I know it isn’t true, in my mind she has always been here – just as much as for the years between visits, I never see her.

I like having my mom here.

We talk… or we don’t talk – and it is all okay. At least I think it is okay. Maybe it isn’t. Sometimes I get it wrong. Usually I get it wrong.

This morning I was playing ‘Candy Crush’ and talking to my mom. There was a bit of silence, and ‘my girls’ (Chihuahuas) came to ask me to go outside. The first time I just went out with them, but then I thought of my mom inside alone, and decided to mention what I was doing the next time.

I went outside and started working in the garden – mentioning to her that is what I planned to do. She said she would be out shortly.

As I worked on my garden (I only planned to plant some wildflower seeds in the dirt by our house, but then saw the mound of dirt in an area that still needed to be worked on, and went there instead.) My mom came out and sat on the lawn swing. I think she was reading or something. My girls ran back and forth around the yard, then found places to sit and rest.

For a long time, there we were – I in the garden, and the others doing their thing. Sometimes the girls came to see me, and I talked to them. I don’t remember talking to my mom very much. I even had my back to her, as this section I was working on faced the fence, and the road, and it was the only way I could work on it – plus, I don’t work well with people watching me… but she wasn’t watching, she was reading. That seemed to be okay.

As I write, my mom has been here for six days. We walk, we talk, we shop (for food – I am not a shopper) we watch movies or shows (with my son, or sometimes without as he can’t handle too much interaction, or too much change to his routine) and sometimes we just sit quietly doing our own thing.

Normal.

I like that this is ‘normal.’

I also know it won’t last, and that for the most part it will be hard for me to even remember a time when this was normal. But I am grateful for it now.

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Autism: Early Wake Up Call

It was 6am when I heard the door to his room open. He walked down the hallway and started doing things in the kitchen: Opening and closing cupboard doors. Using the microwave. Opening the back door for the cat. Walking around. Doing things.

I tried to get back to sleep, but he was so loud.

Okay – I admit now that he wasn’t any louder than he usually is, and he is usually a pretty quiet person, but… when I am supposed to be sleeping? Everything is loud. It was loud to me, though he might not have thought so.

Anyway, once I am woken up, it is rare for me to get back to sleep. Only if there was silence – but he had things to do. Only if there was time – but it was only an hour until my girls got up, and the time went fast while I was waiting for him to stop moving.

Molly even protested when I said I was going to get up. “Too early, Mom,” she seemed to say as her eyes – heavy with sleep – closed once more.

Too early. I agree.

But I couldn’t get back to sleep, and that meant a hard day ahead.

I tried to see it from his perspective – he had somewhere he had to go before work, and so had to leave early, and so had to get ready early – but I needed that sleep.

He had to work all day – just like he did the night we picked my mom up at the airport and didn’t get home until nearly 1am (I was really tired that day, too.)

I didn’t have to work. But it still made me sick all day.

It was only one hour less of sleep, and sometimes that happens just because my medications don’t work some nights, and without them I have insomnia. It isn’t unusual for me to struggle with sleep.

Yet every time I struggle with sleep, I have a bad day the next day. It leaves me nauseous, and uncomfortable, and head-achy, and even all my muscles ache from the lack of sleep. I can’t think well. I can’t function well. I can’t even visit well (“Sorry mom!”)

I know he didn’t mean to wake me up. He probably didn’t even know he did (he rarely seems to notice that he woke me up – mostly, I assume, because once I do wake up it takes me another 30 minutes to an hour to actually get out of bed.

I also know that I often struggle with this on my own.

But it affects me so much – why doesn’t it seem to affect other people the same? I mean, sure it “catches up with them,” but with 6 hours of sleep in a night (it takes me two hours to settle in bed, reading and such, and another two to get to sleep – so it is unreasonable for me to try to get to sleep before midnight to avoid this problem) I can’t even function the next day. I am pretty sure most people don’t have that.

Since it causes such struggle, and I have enough bad days on my own, I really need to not be woken up. I have no idea how to solve that issue except to pray he sleeps longer than I do (which is unlikely, since it takes him 5 minutes to get to sleep, I can’t even start to go to sleep before him, and he doesn’t seem to need as much sleep as me.)

What to do.

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Autism: There She Was

In the afternoon, I was singing and dancing around the house. My son told me that he was going to record it and show it to Nana when she got here.

It helped to calm me that WestJet had flight updates on their website, and I was able to see that her first plane had both left the original city, and arrived at the layover stop on time. Suddenly she was only a 5 hour car ride away – rather than a 5 day drive! Even though I couldn’t see her or talk to her at that time, she seemed much closer, and therefore I was much more confident that she would arrive safely.

The drive from our home to the airport is a little under an hour and a half. My mom’s second flight hadn’t even taken off when we needed to leave to pick her up. I did the normal bedtime routine for ‘my girls’ (my 2 Chihuahua’s for those who don’t know.) I then brought them to bed, and put up the gate that I leave just outside of my room at night to stop them from wandering the house (and making messes) during the night.

Clara brought me her bunny rattle (her favourite toy) which she does when it is time for bed. I am not allowed to take it from her, but it is a real honour to have the toys brought to me, and I am supposed to make a big deal out of it (which I do.) I felt really bad about saying goodbye to them at that point, but what could I do?

We arrived at the airport at 10:36pm; a little early, but not bad. The airport is having extensive renovations being done. There was a work crew behind plastic sheets, tearing up tile and such with bobcats and other such machines. It is usually a very nice airport, but this time it was mostly noisy, dusty, and a bit of a mess.

Since we had time, we wandered to the observation deck. With the glare, it was hard to see the planes outside, but we were able to watch a video there about what was being done to the airport. There were diagrams and details on the expansion (something like double the size, with half the CO2 emissions – it was quite dizzying.)

Though the next flight out wasn’t until 5:30am, there were already people there, planning to spend the night in anticipation of their flight. I found that unusual – but since they would have to be there by about 4am, it kind of made sense.

Nana’s second flight was delayed by 15 minutes. Another flight arrived just before hers. Though there were many of us waiting at the arrivals gate, I was a bit saddened to see the people from that flight walk past all of us. They seemed like really tired workers – the flight is only an hour – I guess it is so common for them to fly in that people don’t come to greet them, but really?

There were a lot of different people coming next: Tall, short, with or without glasses, short hair, long hair, curly hair, thin, not really thin… as I watched them, my heart began to race. What if Nana doesn’t look the same? What if she got taller, or thinner, or cut her hair, or changed the colour, or… What if that person was Nana and I didn’t recognize her? But no, she walked past and met someone else. What if she were that person, or that?

And suddenly, there she was! Looking just like she always did. Finally my mom was here. It felt surreal. It does still. All the way home, I was shouting in my head to my son, “My mom is here!!!”

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Autism: Freedom For Now

We had this vehicle that was sitting in our driveway for many months, not being used. It wasn’t our vehicle, but we had agreed to store it for family.  Since no one was using it, my husband asked if it would be okay for us to get it insured during the time that my mom was here – and the owners agreed.

Suddenly I have a vehicle – not that one, for it is a standard. I can drive standard, but… I am anxious enough driving an automatic. With the standard, there is so much more to think about, and so many more issues that could arise.

For example (and I guess this is the worst one) when I have to stop on a hill in the standard, I am painfully aware of how close other vehicles stop behind. When the light changes, and it is time to go, I not only have to think about the lights and the traffic in front of me – but there is the brake, and the clutch, and the gas, and the gears, and… the vehicle that will roll backwards before it moves forward.

It is all too much – like city driving (which I don’t do – at least not in or near the city I learned to drive in.)

So my husband will take the standard car to work, and I will have the use of our automatic van during my visit with my mom.

Only he didn’t just get insurance for the 2 months while my mom is here, but for six months!

It feels really strange.

I haven’t had free access to a vehicle for a long time. In fact, in our first 9 or 10 years of marriage (even after I got a job outside of my home, and with different shifts from my husband) we only had the one vehicle.

When I was going to school, and had to travel to and from the job site frequently (we were building a house) my husband decided it was best to get a second vehicle for convenience. But when I stopped working, well… there really wasn’t enough reason to justify the expense of a second vehicle, so the extra went to the wrecker (we only ever buy well used vehicles) and we were back down to one.

It made sense. It did make sense.

If I needed to get anywhere, I would have to drive down to work with my husband, and pick him up at the end of the day, in addition to doing my own thing. Sometimes I did, but… driving into town and back once causes me severe anxiety (just being in town without driving causes me strong anxiety.) By the time I got home, I was nearly always crashing – and going out again was really a very difficult thing for me. So I didn’t do it often, and have spent most of these years at home.

Then I qualified for door to door bus service – only I had a bad experience with that, and was afraid to try again.

Instead I have been home. I like to be home, but with no accessible way to leave home, I have felt trapped and isolated.

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And now, suddenly, I have a vehicle again. I drove into town today to pick up a few things for my mom’s visit – and town was busy! I don’t know why it was so busy on a regular Monday not altogether close to tourist season, but it was.

I arrived home worn out and exhausted, and very anxious about having to go out again to pick my husband up at the end of the day… but then, I don’t have to, do I?

It feels strange, but I am grateful for the sudden freedom that having a second vehicle allows. Perhaps not worth the expense long term, but it is really nice for now.

 

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Autism: I Need My Mom

My mom is coming tomorrow.

It feels unreal, and as I go about my day, I continue to repeat the words that have become all too familiar over the past several years: “I need my mom.”

The more anxious I get, the more the words come. I pace back and forth, and repeat, “I need my mom.”

“I need my mom. I need my mom. I need my mom.” The words come automatically, but they must mean something. The harder things seem, the more anxious I am, the more upset I am, the more the words come. “I need my mom.”

I don’t know when these words became such a compulsive thing. I can’t remember when I started saying them so frequently. Did this come from my childhood? I don’t remember. Did it start when my kids were lost, or when I started working for the first time away from home?

Honestly, I don’t know.

I do know that for many years now, in many situations, the words come. “I need my mom.”

And now, for the first time in 7.5 years, my mom is flying to see me. The day is almost here, and that makes me anxious.

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“I need my mom,” I think – and then, “Wait! She is coming.”

I have needed her for so long it is hard to wrap my head around the fact that she will be here so soon. We just have to get past the travel part – for the travel part makes me anxious. People fly every day, don’t they? Most of the time, people are fine. I don’t even mind flying myself. I often consider that something might happen, but I am not really afraid.

I am afraid something will happen tomorrow, though.

For years I have wanted her here. For months this trip has been planned. The day is almost here. But what if it isn’t? I am afraid.

At 40 years old, I wouldn’t have expected to still need my mom like a little child – but I do. I guess that is a good problem to have, maybe. Only people with good mothers would still need them at 40, right?

So I will wait in anxious anticipation. Tomorrow evening we will drive out to the airport and pick her up. Her plane arrives well past my bedtime, and it is even worse for her with the 3 hour time change. I am pretty sure we will all be too tired to visit tomorrow, even on the 1.5 hour car ride back home.

But she will be here. And for eight weeks, I won’t need to say, “I need my mom,” for my mom will be here.

I can hardly wait!

 

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Autism: Much As I Can Handle

For anyone who would have seen me the past few weeks, I believe the general opinion was that I was healthy enough to work. Day after day from early in the morning until later in the afternoon, I was out in the garden, with my girls. I was turning the soil, and pulling the weeds, grass, rocks, and lots of June bugs out of the ground, trying to get the gardens ready for planting.

The work was steady, and repetitive, and took a lot of work – though not a huge amount of focus.

At the end of each day, I was dirty, sore, and exhausted. Yet each morning, as long as the weather cooperated (and to a smaller degree when it didn’t) there I was. Working.

There was this time pressure to complete, as spring was coming fast. Well… it was spring, but… the last frost date, or whatever. We have a short growing season, and this year even shorter as it was a longer winter than normal. So things need to be planted ‘on time’, or so I have read.

Though I study the material, and try every year, I really don’t know what I am doing in the garden. But this task was pretty simple. Dig and flip the soil, crumble it in my hands, remove all weeds, grass, rocks, and bugs that look like they might eat my plants, throw the soil, worms, and ground beetles into the ‘good’ pile.

People walked by and commented, as they do. I tried to reply appropriately, and went back to work.

My ‘girls’ chased anyone passing, and ran through the garden, and very much enjoyed themselves. I gave them the attention they needed, watched for eagles (that live just down the road), fed them on their schedules, ate on mine, and went back to work.

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Unusual to me, I was somewhat thankful for the rainy days, for then we had to stay inside. Perhaps I should have rested then, but there was so much to do inside in preparation for my mother’s arrival, that I was nearly as busy inside as out.

For three weeks I worked hard, and anyone who saw me would likely think I was well enough to get an actual job.

Though it was something I really wanted to do, however, I started to crash at about the 1.5 week mark. By 2.5 weeks, I was really pushing myself. Those last two days I almost didn’t make it through – and had it needed more work, I couldn’t have done it.

Three weeks for a job I liked, that I could do at home with my girls, and where I was mostly alone doing something for myself. Three weeks, and I crashed.

And there lies the problem of seeking another job at this point in my life. I would go into the interview having to prove to the manager that I was the best person for the job (and in the beginning, I just might be.) I would take the job with everyone hoping, and even expecting, that this would last. It would almost be like I was telling them they could count on me – for what else are we really saying when we agree to take on a job?

Yet I would know it was a lie. I would give that job everything, because I can’t give less (for I am always concerned about what people think of me) and I would try really hard to keep going. But, as has been true pretty much my entire life, and certainly from the start of high school at not quite 14 years old, the crash would come.

If it was a particularly good time in my life, and the job was one that suited me well, I might (if not asked for too much change, or too much time, or too much…) last 5 or 6 months before I fell apart. And then, if it was still something I was enjoying, and I was getting along with the people I worked with and for, I might be able to hide the fact that I was crashing from the people at work for a few months more.

At that point, no amount of effort on my part – or incentive from outside – would prevent me from falling apart even there. Meanwhile, the effort would have taken a strong toll on my marriage, my home, and my emotional state.

And that is for a good job, that I want to succeed at.

If it were any less, I would still give my all (for I can’t give less) but I would likely not last a week before I was really struggling, and in less than a month, everyone else would know it.

So here I am, doing the very best I can to take care of my home (which is of top importance for me) and after three weeks of working hard, I am crashing. Thankfully I am at home. This is my work right now. Thankfully, though I could lose the work, and have everything come crashing down around me (it happens) a few days, or even a few months of ‘crashing’ won’t be viewed as a public failure. And that is about as much as I can handle.

Yet I always feel pressure from outside that I should/could be doing more.

 

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Autism: The Greatest Love

The other night, as I was lying in my bed reading a Christian book that I had downloaded to my tablet, I came across a chapter that brought out a strong and sudden response.

The book was non-fiction, but this chapter was about a vision which the author claimed to have experienced… as if it were real. It might have been real. I do believe that some people do experience visions – and if I hadn’t believed it was real, perhaps it wouldn’t have upset me as it did.

In the vision, the author was speaking with Jesus, and said, “some people have strange opinions on Christianity,” or something on the lines of that, “some believe they will see their dogs in heaven.”

I cried so long, and so hard, that when I woke in the morning my eyes were still heavily swollen. In one sentence, the author had re-awoken a trauma that, while it hadn’t healed, was at least not as… loud anymore. It was as if my dog had been taken from me all over again, and it hurt just as much as on the day when I unexpectedly lost him.

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“I need him, Lord,” I cried. “I need all of them.” If my animals aren’t in heaven… how could it be heaven then?

This is difficult to explain to people who don’t understand. And I know that this is something that Christians disagree on. But…

You see (and I know God knows this about me, for He put them on my heart, and He gave them to me to love) I really struggle to form connections with people. No matter how hard I try, and no matter how much I like them, I just… I am always afraid, always uncomfortable, always ashamed of who I am when I am with people.

I try to be myself, and I try to be known, and I really do try to connect – but at the end of the day, it is my ‘babies’ that I feel closest to – and they aren’t people.

All of my life, it was them. It was the animals that carried me through. It was my animals that kept me going. Even as I cried over this sentence in the book I was reading, my cat verbally questioned what was wrong (not in English, of course, but I understood him) and my girls came to lick the tears off of my face.

My husband walked by, but it was my ‘babies’ that came straight to me to ensure I was okay. I wasn’t.

“And now these three remain: faith, hope and love. But the greatest of these is love ” 1 Corinthians 13:13. God gave me my babies to love. All through my life, they have been there to love – and I have. I really, truly have. So if love remains, why wouldn’t they? I cried myself to sleep that night praying, “Please, Lord, I need them.”

The next morning I woke with this verse on my mind: “Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us.” Ephesians 3:20. This verse has been used as a comfort for here, but also in heaven – and for heaven to be “abundantly more than I could ask or imagine,” my babies would have to be there.

They would have to be… wouldn’t they? The thought that they might not be there has me crying still – two days later – and has re-opened wounds that the presence of those still with me have worked to heal. “I need them, Lord. Please.”

 

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Autism: Birthday Triggers

This weekend held the birthdays of both of my (foster) daughters. The eighth of each that I have missed since the adoption failed. For a time I thought I was doing okay this year. On both of the days in question, I spent the majority of the day outside working on my garden. I enjoyed myself.

As I looked closer, however, I realized that I was still triggered – it just looked different from other years.

For the last week or so, I have been experiencing panic attacks. They have been random in that I have had nothing going on to set them off. They have been unpredictable. True, each night as I was trying to fall asleep during this time, I have been panicky – which has kept me awake – but there have also been times during the day where I was fine, and suddenly was panicking (despite being at home and doing something I was enjoying.)

Above that, though I have been in a relatively good mood, all of a sudden I would be overcome with sadness and tears. Like pouring rain out of a sunny sky.

Other years, the days were hard, and my thoughts were ALL about my girls. This year, however, while I did think of them, the thoughts around the sadness were more focused on my dog and grandmother – both of whom died in 2016.

I guess that as time goes by… it isn’t that I’ve forgotten my girls, or even accepted the loss, but… the losses seem to pile in together like a snowball growing larger and larger as it is rolled along the ground. It is all sad, and it all hurts – but when the days come, though the timing is specifically about them, the thoughts are more generalized. I didn’t know that would happen.

So I got through another year – for all four of my children had their birthdays within less than a two month period. It wasn’t as hard, maybe, as I’ve experienced in previous years – but it is far from better.

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Autism: Recognizing Myself

Every year for several years at Easter, my church has taken family pictures. “It is the one time of the year everyone is likely to dress up,” my pastor says. It is sort of a tradition, I suppose.

One year – the last one my son came to church with us (his friend moved away, and he felt awkward, and wanted to be invisible, and… stopped coming) I wore a blue, sleeveless spring dress with a black lace like shirt under it. I thought it was nice – until the picture came back. I don’t know what I was thinking. I am not very good at fashion, I suppose. I have never understood it.

So the next year I tried to choose more neutral clothes. The pictures came back, and I was happy with the result.

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The following year I chose similar clothes, but the previous winter I had gained all that weight from the anti-depressants I had tried (30lbs in 12 weeks – I had never weighed so much in my life!) I stopped taking the medications, and tried to exercise and watch my diet, but I never was able to lose that weight.

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I hated that the picture reflected that weight gain, but it was still a nice picture.

Though it has been 1.5 years since I went off that medication, I haven’t been able to lose a pound. Not one! That in spite of a lot of focus on trying to lose that weight.

I haven’t lost any weight, but I haven’t gained any, either. So it really surprised me how much heavier I looked in this year’s picture. Like the one where my clothes were weird, this is a picture I would be ashamed to show.

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Truly, I don’t have any real opinion on weight for other people. In fact, like clothes, I hardly notice at all. I either recognize a person because they look like they’ve always looked to me, or I struggle to recognize them (like when my son lost a huge amount of weight, and shaved his head after having long curly hair most of his life.) because they don’t.

At the same time, if people look at all different – such as famous actors playing different parts – it is extremely difficult for me to know them. Johnny Depp, for instance, always looks like either Captain Jack Sparrow, or Willie Wonka to me. Those are two very distinct characters, yet I can recognize both. Yet he plays a character that comes in at the end of Fantastic Beasts and Where To Find Them, and while I know it is Johnny Depp playing the part, I can’t see it. I can’t.

So I think, my frustration with this weight gain isn’t about the weight at all. My struggle is that when I look at myself, it doesn’t look like me. When I try the clothes it took me 30+ years to decide were right for me, they don’t fit the same (they don’t fit at all), and when I try to find similar clothes in a larger size, they don’t look like me, either.

I am frustrated about being tried on a medication that made me gain such an extreme amount of weight. I had never weighed so much before in my entire life. I am frustrated that the doctors, and the people who decide the medication is okay to distribute, decided that what I looked like was less important than my mental state – I feel they need to treat the whole person, not make one thing worse to (possibly) make another thing better.

Yet it isn’t so much the pounds I gained, but that in that, I lost myself. After nearly 40 years, I was finally able to look at my picture, or look at myself in the mirror, and think, “that is me.” Before that, whenever I looked, I would think, “Is that really me?” It is sad to be back to that place.

 

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