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Stupid and Useless

  • Posted on December 4, 2014 at 10:00 AM

Those are loaded words when you’re part of a community of people with disabilities. Far too many people have been derided as stupid and useless for far too long. Yet those words struck a chord with me.

“Stupid useless pain is much harder to bare than pain with purpose.” –Dr. David Schnarch

I read these words in a book about marital relations. Of course, the book in question addresses far more serious situations than I am concerned with, but I’m finding the basic tools are applicable. More to the point, the pain I thought of when I read these words did not involve (at least, not directly) my husband Mark.

I’m not prone to hyperbole, so believe me when I say the last two months have been hell for me. I’ve had meds messing with my mind. I’ve had so many troubles and complications that I’ve given up hope, gotten it back, given it up, and gotten it back more times than I can count. I’ve been sick for over a month and got so used to feeling weak and dulled that I didn’t realize how far I’d slipped until I started to climb back up to my strength. I’ve been angry at God. I’ve coughed until my lungs hurt and then coughed some more. And, no matter how much I try to get back on track, I keep slipping back into a cycle of decline-and-recovery. I’m still not even with myself.

Most of this time, I’ve felt like everything I’ve been going through was stupid and useless. It’s been painful—physically, mentally, emotionally, and spiritually painful—and it was useless and stupid and ENOUGH IS ENOUGH ALREADY!!!

Like most human beings, I seek relief when I’m in pain; yet, I’ve gone through some incredibly painful experiences and I’ve bore them much better because I’ve understood their purpose. I’ve born these last two months quite poorly. I’ve done things I despise, like yelling at my child for being uncooperative because I just couldn’t handle one more thing. I haven’t done things that I should, like finishing all the work I promised to my clients months ago.

As an adult, when Mark moved to a new place, he’d walk around until he got thoroughly lost in order to learn more about the place he chose to live. On the other hand, we took a trip as a family and I ended up missing an important turn. Instead of going down I-35, we were going down I-90. We got so lost and mixed up trying to cut across between the two that Mark literally used the sky to navigate for me. I hate being lost. Mark takes it in stride and he finds the way forward.

These last two months I’ve been lost and I hated every moment of being lost. I hated being weak. I hated being tired. I hated being in pain. I hated my complete inability to turn things around. I was fighting so hard against the things I hated and I wasn’t getting anywhere. It was stupid useless pain and it was eating me alive.

Then, I stopped fighting. This time it wasn’t a matter of giving up; it was more a matter of looking around and looking up. Two things occurred to me. First, I knew that I had finally completed my memoir and that, whatever happens, it will be published. Second, I saw that in trying to start from scratch I’d begun writing again.

Granted, my business is a writing business. I’m always writing something. But everything I’d been writing since I obtained my graduate degree in writing was written with a specific purpose in mind. Whether it’s for a client or for myself, it’s all been driven by a purpose, by an objective, by a goal. Everything I’ve written has been practical.

I am not, naturally, a practical person. I’m a dreamer. In living my dreams, I’ve pursued practical purposes that, together, are supposed to realize my dreams. But practicality doesn’t come naturally to me. Dreaming does. So, when it came time to replenish my creative well, I started writing the passionate ideas that came to me—without a predefined purpose. And it was liberating.

Now, practically speaking, I’d stopped writing in order to better use my time in my writing business. I suspect that there was no other way to get me writing again than to knock me so thoroughly down that I had to go back to my roots as a writer just to stand myself back up. You see, decades ago when I started writing, it wasn’t with purpose—just passion. I loved to write. Writing excited me. It thrilled me. Cultivating my talent and turning it into a business was something I was proud of, something I loved.

Then, once I’d actually got my business up and running, there came the pressure and the consequences of that pressure and the consequences of those consequences. I became driven. I was still inspired and I was still passionate, but I wasn’t using that passion or that inspiration, not to its fullest. I was working towards a purpose. Everything else fell to the wayside, including the love I had for what I was doing.

So, while I’m still recovering, I’m recovering with a purpose. I’m recovering my faith. I’m recovering my inspiration. I’m recovering my work ethic. And, yes, I’m recovering my health, too. My life is imbalanced, but I’m getting better now that I have a purpose I can really live with, despite the pain. And I’m about one-fourth of the way through the first draft of a novel that I’ve been trying not to write for at least six months. Now, that was stupid and useless, wasted effort. And I realized it by realizing, once again, that pain is necessary for growth and renewal.

The Long Weekend

  • Posted on November 28, 2014 at 10:00 AM

Now that the holiday is out the way, the boys are eager to enjoy their long weekend. There was a time not so very long ago that the disruption such a change represents would be traumatic. I remember times when each boy (though never all at once) would begin any long weekend by getting ready for school, as best as he could, all by himself as a sign of defiance, if you will, against the change in schedule.

Sometimes that simply meant putting on his backpack. Other times it meant getting dressed, including snow pants, boots and a winter coat, all by himself. I would coax, explain, and coax some more. Finally, I’d leave him be until he gave up on school and decided to play. One time Alex went around in coat, shoes, and backpack until well into the afternoon. Every time the front door opened, he’d go see if his bus had finally come. Eventually, though, they always gave up.

Things are very different now. Even though children with autism do not follow the developmental trajectory of their typically developing peers, they do develop—at their own pace, in their own time, and most definitely in their own ways. Now, the boys enjoy the long weekend. They’re perfectly happy to play all day long. So, that’s what they’ll be doing today and for the next two days. Still, they’ll be happy to return to school and their normal routines until the Winter Break comes.

Happy Thanksgiving!

  • Posted on November 26, 2014 at 10:00 AM

Raising three children with autism can be quite challenging. Celebrating holidays with three children with autism—or even just one!—can be especially challenging. Over the years, our extended family has grown accustomed to the differences my children’s needs bring to the holiday season. Our family has adapted excellently and I know just how lucky we are for their support and accommodations.

Many families are not so lucky. Many families struggle with basic necessities and holidays can be especially trying. On the one hand, the expectation is that they must somehow access the mainstay traditions of the season, such as a turkey for Thanksgiving, whether their budgets allow it or not. I’ve been there and I know how trying and miserable that can be. On the other hand, parents can go through all the work to procure the ingredients and make the feast, only to find that their child(ren) with autism won’t touch the holiday meal. Instead, they want something that’s more familiar and comfortable. I’ve been there, too.

When spending the holidays with extended family, these complications can be further exacerbated. Grandparents, aunts, uncles, and cousins can do their best to love the children with disabilities in their family, but if they don’t understand the disability the child has and they don’t understand what the child needs to celebrate the holiday, it can spoil the event for everybody. I’ve been there, too; though, once again, I’m lucky to have an extended family that’s very understanding and accommodating, but it has taken work on all our parts to get there. It is important for everybody to understand and keep in mind that it is not the disability, per se, that spoils a family event; it is the lack of understanding and accommodation that makes the event unsuccessful. That seems to happen in families a lot, and the issue isn’t always a matter of disability, but I’ve found that if people are willing to put in the work to love, understand, and accept one another, then any event can be a success, whether you have little or much.

So, I want to express my gratitude that Willy will be joining my mom, my husband, and me for a traditional Thanksgiving dinner. And I want to express my gratitude that Alex and Ben will be able to enjoy the special family time of Thanksgiving without having to try any of the traditional foods. I’m thankful we have the choice and flexibility to ensure that our whole family can enjoy this holiday. And I’m especially thankful for the many holidays we have shared with our understanding and accommodating extended family.

Thank you all!

Try, Try Again

  • Posted on November 24, 2014 at 10:00 AM

I’m on a new prescription to fight the illness that has been lingering far too long. According to the doctor, it’s still just sinusitis and bronchitis. I haven’t developed any tertiary infections (bronchitis is the secondary one), including and especially pneumonia. So, I’ve got that going for me. The doctor also changed the antibiotic and extended the length of time I’m taking it. So, while I’m not better yet, chances are good that I will be by the time this medicine is through. Meanwhile, I am coughing a bit less and getting a bit stronger. So, I am getting back to work.

Working has been a problem for several weeks now. My work is very cerebral in nature, which means I have to reach a minimal level of concentration before I can produce quality work. The length of time I’ve been away from my work, along with other complicating factors, has also made it necessary for me to start from zero.

Basically, along with the concentration (which is improving) and the knowledge (which I’ve retained), my work depends on my confidence (which was depleted) and my skill (which has become rusty). A final ingredient, which is a bit more mysterious, is the creativity factor.

Creative writers—novelists and memoirists, for example—often speak of “the muse,” which is a nod to Greek mythology. Personally, I see creativity as being less dependent on external forces (like a demi-godish being whispering in your ear) and more dependent on internal forces, like a bubbling “pot” of a variety of inputs and a willingness to put different things together until you create something fantastically new. Though, I believe there are internal and external forces that interplay and interlay amongst each other, which is what makes creativity such a mystery.

For me, the biggest factor is that my creativity is most robust when it’s used abundantly. The more I use my creativity the more creativity I can bring to bear on a new project. Concentration tends to work in the reverse: the more I concentrate the less capacity for concentration during a given day. This creates something of an X-factor, where the one is rising, the other is lowering, and the optimal time to perform the hardest work is when they cross each other. Finding my X-factor is a matter of trial and error, because it is dependent on factors that change from day to day. If I spend long periods of time not working, then I get out of practice. My moments of optimal work time become shorter and finding them becomes harder.

As my strength has improved, I’ve devoted time to getting in the practice I need. So far, my X-factor has eluded me; but, the last few days, I’ve gotten pretty close. This is a sign that I’m ready to get back to producing end-product work for clients.

It’s about time!

A Good Day

  • Posted on November 21, 2014 at 10:00 AM

I am still in the midst of illness and hardship, but recently there was a bright spot in this time of tribulation. Alex had a very good day on Wednesday. It started with a check-up with his pediatrician. For the first time, Alex sat still while the nurse took his blood pressure and his pulse. When the doctor came in, Alex let him look in his ears and his mouth without any problems and without requiring any special maneuvers on the part of his doctor. Then, when the nurse came in to give Alex his vaccinations, Alex only needed help staying still enough for the needle. He endured not one but three shots without any kind of fuss.

After such excellent behavior, Mark and I wanted to give Alex a treat. We discussed the possibilities and decided to take Alex to IHOP, because there are three different meals he likes there and the menu is one he can consistently use to make his own choices. He chose a grilled cheese sandwich, and I requested fries instead of fruit. Alex ate his entire sandwich and all his fries!

After that, he had some free time at home before I took him to the speech clinic. When we got there, the speech therapist had a new selection of toys so they could explore different areas of the device. Alex was surprisingly cooperative and attentive. He didn’t lose focus until the very end and he used the device beautifully.

When we returned home, he continued his fabulous day without any significantly disruptive behaviors. (We have also heard that Alex is now proactively extending his hand in greeting and, at home, he’s watching Willy and his friend play together as if he’s trying to figure out how they do it.) While this stellar behavior didn’t roll over into Thursday, I did get another, stronger dose of antibiotics. Unfortunately, my mother required a trip to Urgent Care and was diagnosed with vertigo, which took up all my energy for the day.

I’m Still Sick

  • Posted on November 19, 2014 at 7:35 AM

Back in October, I had a sinus infection that became bronchitis. I also had an overwhelming amount of stress. I got a prescription for the infections, but there’s no prescription for stress. I took my meds, they helped for a while, but even with their help my immune system couldn’t fend of the infection. So, weeks later, I’m still sick.

After sleeping for most of two straight weeks, you’d think I’d have been rested up for this. But I’m still sleeping more than usual and I’m still struggling more than I’d like. I’ve been trying to get back to work, but I haven’t produced much yet—particularly for my clients.

Now, it’s time to go back to bed. I’ll catch a bit more rest before my busy day—taking Alex for a checkup, and then I’m heading back up to Madison for another speech appointment. (We’re booked through March now.) Wish me luck, because I’m going to need it!

Ownership vs. Stewardship

  • Posted on November 17, 2014 at 10:00 AM

In the United States, we have a culture that perpetuates an ownership mentality. We own a lot of stuff, we own our land, we own our rights, and according to some people we even own our jobs. With ownership comes a sense of entitlement: we have the final say, we make the decisions, we can use what we own however we want. We have many rights, but we recognize few responsibilities. The world owes us a lot, but we don’t owe anyone anything.

In contrast, quite few of the cultures we interact with practice a stewardship mentality. The stewardship mentality generally takes the longer view. According to this perspective, we don’t own much of anything, regardless of property laws, because these things will last longer than we will. This is particularly important with regards to land usage and community. The stewardship mentality recognizes fewer rights and many more responsibilities. Namely, as stewards, we have the responsibility to take care of—not simply use and certainly not use up—our property.

As I’ve said, I’ve been reading First Things First by Stephen Covey and the Merrills, and the issue of stewardship was brought up regarding the roles we choose. Then, after reading this, I watched a news clip about a child that was accidentally vaccinated by the school. In this clip, one of the guest speakers—I don’t remember who—was talking about how parents have the right to decide when and if a child is vaccinated. On the surface, I agreed with her. Personally, I don’t think schools should be vaccinated children at all—it blurs the lines of governmental authority too much for my taste. But, as I listened to her, I couldn’t help but hear the ring of ownership in her voice as spoke about parenting her child.

This isn’t atypical in the United States. Among the many things our culture tells us we own, we’re told we own our kids. This idea has been with us since the founding of our nation and it lingers to this day, though we have made inroads in recognizing our children as people with human rights of their own.

For centuries, parents enjoyed the right to treat their children however they saw fit. Slowly, over time, the rights of parents have eroded. Once upon a time, parents could decide whether or not their children worked or went to school. Then, school attendance became more or less mandatory. Once upon a time, parents could decide how their children were punished. Then, certain forms of punishment were labeled abuse and outlawed. Once upon a time, parents could decide whether or not their children were vaccinated. Then, vaccinations became more or less mandatory. Once upon a time, parents could decide whether or not their children received medical attention. Then, medical care became more or less mandatory.

While there is a part of me that resists the encroachment of government on individual rights, mostly I agree with these shifts, because I firmly believe that children are people with rights of their own. (Though, I can’t help but comment that it seems ironic that as our “old” rights are being eroded, we now have the “new” right to kill our children via abortion, a mentality that I suspect also leads to tragedies like this.)

When it comes to our children, our rights as parents cannot and should not outweigh our responsibilities to our children. This is stewardship, not ownership. We have the right to make decisions, but we have the responsibility to consider our children’s interests when making those decisions. We have the right to direct the courses of their young lives, but we have the responsibility to raise them into people who can choose their own paths. We have the right to resist social and even legal/governmental norms, but we have the responsibility to base our resistance on the best interests of our children and not on our own convenience.

In the name of cultural diversity, we learn about other cultures and we are exposed to how those cultures are mixing with the dominant American culture. As a child, I learned a great deal about Dia de Muertos in the name of cultural diversity. I’ve acquired a smattering of other cultural nuances from my classroom instruction, too. But it wasn’t in school that I learned about the truly substantial differences in culture. It wasn’t in school that I learned the difference between Native American and dominant American attitudes towards land. It wasn’t in school that I learned the pervasive significance of “ancestor worship” traditions among Asian cultures. It wasn’t in school that I learned that there are people whose views of the world are so completely and utterly different from our own that we cannot help but miscommunicate and misunderstand each other. What I learned in school in the name of cultural diversity was decidedly trivial, so as to not even open up the opportunity for us lowly students to challenge the norms of the dominant culture.

As much as I love this country (most of the time), there are things we need to learn from others, and it’s not simply to respect holidays that are different from our own. In grade school, I learned that America takes pride in being the melting pot of so many different peoples. In college, I learned that America could more accurately be described as a salad, because we all don’t end up with the same culture or the same world views and belief systems once we’re mixed together. The irony, which I didn’t learn in school, is that “America” is itself an arrogant misnomer. Canada and Mexico are part of “America,” too. So is the entirety of South America. We may be the United States of America, but “America” is not our own to claim. But the dominant culture does not want to be challenged. People en masse don’t want their minds to be opened to ideas that make them question themselves and their beliefs. We don’t want to learn the truly important things.

The United States has the potential to be that melting pot of yore. But it is not done by making everyone who comes here melt into some longstanding norm. We’ve already figured out that that really doesn’t work—thus, we say “salad” instead “melting pot.” But the melting pot ideal isn’t, by itself, wrong. We have the potential to take the best of the cultures of the world and to melt these “bests” into something truly exceptional, something truly ideal. What if we could combine the Protestant work ethic with the longer, sustainable view of land held by Native American cultures? What if we could honor our history while working cooperatively for a better future? What if we could balance freedom with responsibility, liberty with equality, self-determination with self-restraint?

What if we treated our children with the respect, dignity, and humility they deserve from us? What if we raised our children to balance their rights with their responsibilities? What if we were the kind of parents who made the world a better place simply by sending our children out into the world?

We don’t own our children. They aren’t “ours” do with as we please. We are stewards of our children and stewards of our future. We have the power to shape our children into people we will be proud to know, people who will make the world a better place simply by living their lives. We have this power because we can look beyond our own culture and embrace the best of the cultures we discover amongst others.

The Mystery of the Undisclosed Diagnosis

  • Posted on November 12, 2014 at 10:00 AM

My husband Mark has been in and out of mental health treatment (outpatient services for the most part) for bi-polar disorder, a.k.a. manic-depression, since he was a teenager. For much of this time, he has received his psychiatric services from the same doctor who, for the most part, simply provided him with medication. These meds have changed a few times over the years, but for the most part he responds fairly well to the medication.

Recently, he noticed that his pill bottle described “schizophrenia” as the reason for the prescription. This was odd, because he’d never been told he was schizophrenic and what he experiences doesn’t seem like schizophrenia at all. But his doctor is now retired and he won’t be seeing the nurse practitioner who took her place (temporarily) for a while, so he brought up this “new diagnosis” to his therapist. His therapist accessed his records and, as best he can tell, the “schizophrenia diagnosis” is nothing more than a clerical error. But in refuting the diagnosis that Mark had seen on his pill bottle, the psychologist discovered something interesting.

Mark’s records included an official diagnosis from his long-time psychiatrist that Mark had never been told about. Apparently, Mark has an official diagnosis of Asperger’s syndrome, as well as bi-polar. This isn’t a surprise in the sense that we disagree with the diagnosis—we’ve long suspected that if Mark ever wanted to go through the same diagnostic process we went through with our children, then he’d be diagnosed with Asperger’s syndrome. This is a surprise because he’d received the diagnosis without that process and without ever being told that he’d gotten it.

In all fairness, the diagnosis doesn’t change anything. Mark’s primary diagnosis is still bi-polar disorder; that’s the one he needs ongoing treatment for. A secondary diagnosis didn’t change anything with his old psychiatrist, because she’d already been working with Mark’s quirkiness and knew how to handle it, which is why Mark always opted to be under her care when he needed help to manage his mood swings. A secondary diagnosis didn’t change anything with his therapist either, for the same reason. It may help the new people coming on board, but it doesn’t change which medication works with the least side effects nor does it change anything about Mark’s life.

The only thing it does is confirm what we already suspected. Mark is an Aspie. While I don’t quite fit the usual diagnostic criteria, we know that I am, at the very least, adjacent to the autism spectrum myself. Thus, when our genes combined, we created three autistic children. We already knew this!

That being said, it’d be kind of nice to know when one gets a new label slapped on oneself, don’t you think?

Culture and Consciousness

  • Posted on November 10, 2014 at 11:21 AM

Clearly, it’s taking me longer to recover than one might think. I’m feeling much better than I have been, but if you could hear my voice you’d know first thing that I am still sick. I am still congested and still coughing quite a lot, though no longer so much and so deeply that my sides ache. What’s more obvious than that is that my voice is still recovering from a bout with laryngitis. Still, I have been “off” too long and I’m doing my best to get back to being productive. As I am starting to get back to work, I wanted to take a moment to share some of the thoughts that have been with me these past several weeks.

I’ve wanted to read James Charlton’s “Nothing About Us Without Us” for a while now, and I finally got my own copy. Currently, I’m reading five books at a time—each book covering a different subject. (This count does not include textbooks.) Don’t be too impressed, because I’m reading them all very slowly, because I’m not just reading them, I’m also reflecting upon their contents and studying them as deeply as I can. I like the eclectic nature of it, even if it means my progress is slower than it might otherwise be, because I come away with a much deeper understanding than a cursory reading would provide. Besides, sometimes the things I read from these different books click together in unexpected ways.

I hope you read my confession, because this is directly related to that post. Something that Charlton wrote on page 27 helped trigger the realization I describe in that post:

“Most people with disabilities actually come to believe that they are less normal, less capable than others. Self-pity, self-hate, shame, and other manifestations of this process are devastating for they prevent people with disabilities from knowing their real selves, their real needs, and their real capabilities and from recognizing the options they in fact have. False consciousness and alienation also obscure the source of their oppression.”

Charlton goes on to explore the meaning of consciousness, culminating (on page 29) in this:

“The point is that consciousness cannot be separated from the real world, from politics and culture. There is an important relationship between being and consciousness. Social being informs consciousness and consciousness informs being. There is mutual interplay. Consciousness is not a container that ideas and experiences are poured into. Consciousness is a process of awareness that is influenced by social conditions, chance, and innate cognition.”

I live in a culture that systemically devalues people with disabilities. I live in a caretaker culture, in which our government is expected to take care of people with a variety of disadvantages in a variety of ways that further reinforces the notion that they cannot take care of themselves. This culture is being reinforced through my “human resource management” studies, which consistently uses ablist language and caretaker ideas while purporting to support diversity.

It’s left me feeling like I’m getting it from all sides. On the one hand, I firmly believe that the “safety net” the U.S. and other “developed” nations provide is necessary and beneficial to society. Furthermore, I believe the “safety net” should be stronger than it is in the U.S. Simply put, some people fall through no (or little) fault of their own and these people “deserve” to be caught in the net. Other people fall due to their own failings and vices and, though they seem less “deserving,” it is still in the best interests of our society that these people are caught in the net. Finally, there are people who are “pushed” by our society, who have few natural chances to succeed, and need to be caught be the net. Unfortunately, the fact is that this “safety net” we’ve created often fails to catch people. But the true social crime is that we have inadequate means of helping people out of the net and back up into “regular” society.

On the other hand, I reject the paternalistic, caretaker attitude out society projects towards people who get caught by the net. (Note that these condescending attitudes are even stronger to those we’ve failed to catch in the net.) The underlying prejudice is that the people who provide the net are “better than” those who get caught in the net. Many of the existing mechanisms that are put into place to help people out of the net (or to make sure they don’t have to rely on the net at all) are just as paternalistic and condescending as the net itself, including affirmative action and the many other mechanisms that “promote diversity.” The idea here is that these people shouldn’t be treated differently; to ensure that they aren’t treated differently (because we know that they really are treated differently) we help them out of the net using “progressive” initiatives (because we know that they cannot succeed on their own). The whole system is a subtle, but powerful reinforcement of the underlying belief that the people our society casts off really are “less than” those that society embraces.

This is one of the reasons why I just can’t support Democrats. The language they use and the policies they so often create are just so patronizing that their underlying belief in inequality seems blatant to me and it’s offensive. But it’s also one of the reasons why I just can’t support Republicans, either. They’re less patronizing, but they’re also less apt to care enough to create the policies and programs that can actually help people. It’s frustrating, because neither the “safety net” nor the “hands up” need be patronizing or paternalistic. That attitude is not necessary, but it is beneficial if you’re more interested in maintaining a voter base than you are in actually helping people. The more people who are dependent on Democrats’ initiatives for basic survival the more people are likely to vote for them. And our bureaucracy often expresses both the political interests and the patronizing attitudes inherent in the system, when they’re not reinforcing them outright.

So, I’ve been struggling with my own limitations for over a month now. Not only have I been stressed beyond what I can bear, not only have I made myself quite literally ill (thrice over now), but I’ve also been imbibing this ablist garbage, while also reading two books (Charlton’s and a book about revising government) that help me to better envision how things could be. I’ve come away from this mess—rather I’m trying to climb out of this mess—feeling very weak indeed. Physically, I am weakened. More than that, I’m demoralized, because I’ve learned that I am not immune to this culture that I live in. I internalize it. When I’m strong enough, I reject it. Mentally, I reject it outright. But emotionally, when my filters and defenses are shredded, I internalize it and it sticks with me. I spew it back out in the form of self-talk that makes it harder to stand back up and get back to work. Then, I have to go back and clean the garbage out of my system by analyzing it, weighing its merits, and then discarding it once I realize (again) that it really doesn’t have any. Before all of this, I was arrogant enough to think I was immune to this garbage, because I was conscious of it. I know it is garbage, so why would I be susceptible to it! But it doesn’t work that way. Intellectually, perhaps I am immune, but how I feel is something entirely different. Sadly, I hear it, I feel it, and it hurts. When it gets its slimy tentacles tangled up inside me, it hurts more than I can bear.