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My Confession: I Have a Disability

  • Posted on October 29, 2014 at 9:56 AM

If you haven’t guessed by my blatant lack of posting, I’ve been having a hard time of it lately. I’ve been feeling like Job; except, I have conscience enough to feel guilty for feeling like Job, because I know Job had it way worse than I have got it. After all, Job’s miseries started with the loss of all of his children in a “freak” accident. Thankfully, all my children are alive and well.

It all started with a good thing. I decided to try Chantix to help me quit smoking once and for all. It worked for my uncle. It was working for my mom. I was ready to bite the proverbial bullet and have a go. I was warned that it might make me “a little more tired” and that it may cause some “vivid dreams.” These warnings did not prepare me for what was to come.

While on Chantix, I slept 18 to 20 hours a day. The worst part, though, was that I wasn’t even aware of how much I was sleeping because I had very vivid dreams that I was living my life, including turning in the assignments I’d promised to my clients.

This went on for two weeks before I accidentally missed a dose and I started to realize that things weren’t making much sense. I became suspicious—paranoid, really—and I decided to intentionally miss a dose. I was sick with headaches, nausea, and a pervasive dullness that made me want to crawl right back into bed, but I was also aware, with a growing sense of dread, that there was a distortion in my sense of reality.

So, right before my mom’s hip replacement surgery, I stopped taking Chantix altogether. I spent the day at the hospital, which is its own kind of misery. We had a bit of a scare (regarding the delay in my mom’s “recovery” period). Yet, I was able to stay awake and alert and conscious of my surrounding throughout the day. I committed myself to ‘ssessing out what’s what.

The next day, Tuesday, went by pretty quickly, as I needed to be there for both my mother and my children. But that evening I hunkered down to try to figure out what had really happened and what hadn’t. I had over 800 e-mail messages in my in-box. That freaked me out. I shut down my e-mail and went to my assignment folders. I couldn’t find any of the work that I remembered doing. I went back to my e-mail, sent off a frantic message to my co-author, and called it a night. Honestly, I just wasn’t up to facing the dreadful truth. I was hoping to wake up to discover that this was just a nightmare and everything was really just fine and dandy.

Wednesday morning my co-author and I had a Skype meeting and he gave me the nitty gritty from his end of things. I’d been gone for two weeks. He couldn’t get in touch with me via any of my known methods of contact. He’d honestly feared that I, and possibly my entire family, had died.

By then my e-mail in-box had over 900 messages (mostly spam). I tried to sort out the spam from the legitimate messages, got through about 400 messages (just sorting them), and sent off heartfelt, honest apologies to my clients. I then went upstairs, told my husband how thoroughly I’d messed up, and cried on his shoulder for a good 15 minutes before I was ready to face the music. I went back downstairs and started reading the messages I’d missed.

Despite the mess my business was in, life went on around me and there were many needs I had to meet. My mom was in the hospital until Friday; then, she was moved into a nursing home. The boys needed me, my mom needed me, and my clients were all very understanding. I struggled to get everything back under control, but my confidence was shattered. I’d messed up so thoroughly and, even though it wasn’t exactly my fault, it was definitely my failure. I felt it keenly.

Day after day I tried to manage everything I needed to do and everything I hadn’t done—and I failed. Day after day, I tried and I failed. Again. Again. Again. Again.

The stress exploded exponentially and I succumbed to a fibromyalgia flare up that floored me completely. Before the Chantix I’d gotten my daily, regular pain down to a 3 out of 10 (10 being bad). Now, I was at a 7 out of 10. (For context, my broken wrist, delivering my children, and my bouts with my gall bladder usually rang in at around an 8 out of 10.) My ability to concentrate was at a 2 out of 10 (10 being good). I just could not do my work. At all. I could barely meet the needs of my children and my mother. I could barely function. I felt even more like a failure.

Last Wednesday was my day. I woke up, got the boys off to school, and decided I could afford to take a nap. I overslept. Scrambled to get ready. Arrived late for the IEP I was going to duck out of early. Contributed nothing and left anyway. I scrambled to finish getting ready at my mom’s, but we just got later and later. We were supposed to leave by 2:30 PM. It was well after 3 PM when we actually left. I tried to make up the time as best as I could, because we were driving down to Chicago. This was going to be my night. This would turn everything around.

I was doing fairly well—just a bit late—when we ran into a major slowdown that suddenly became a parking lot. We waited for over a half an hour before things got moving and by then I was definitely late for my night. It was pass time for things to start when we got off the interstate, but I was determined to make an appearance anyway. This was my night!

I was going to my alma mater, except I drove right passed it because the building had been completely refaced and was now unrecognizable. I backtracked. My mom decided we could park; I didn’t need to take the extra time to try to drop her off in front of a building we couldn’t find. So, we parked in the underground parking area, right near an elevator which would take us up to the street. I unloaded her walker and we were off, albeit slowly.

I managed to find my school, about a block and half away, and we made it into the building and to the room where the event was taking place—just as people were leaving. I wormed my way forward to present myself to my former advisor. She got out the mic and got people’s attention. She introduced the award that was being given and then she introduced me, the recipient. I read an excerpt from the piece that had won me an award for overcoming adversity. I was able to read it without any anxiety, because, honestly, how much worse could it get? I watched the audience respond to my piece with gratification. Then, when I was done, the audience applauded. This was my moment. This was the moment when everything would magically turn around for me.

Except it didn’t. It started with the walk back to the car. We walked back much more slowly, for my mom’s sake. And it was during that long, slow, excruciating walk that I realized that the cramps I’d gotten from the long drive would not be worked out of my legs before I had to get back into the car and do it all over again. Once we were back on the interstate, we still had to swerve through endless miles of non-existent road construction, where miles and miles of the road were “under construction,” but there were only two areas (with many miles between them) where workers were actually working. As bad as that was, the worst was yet to come.

The “highlight” of the evening was our stop at the Road Ranger. Mom didn’t like to pay at the pump, so we went in to pre-pay. My legs were still cramped and my mom still had her walker, so the walk to the store was slow going. Mom pre-paid for the pump. We went to the rest room. We got some drinks and hot dogs. Then, we made the slow, painful way back to the pump. But the pump wouldn’t work. I walked back to the store and the clerk explained that our transaction had been canceled, because we took too long. I walked back and my mom elected to use her credit card to pay at the pump instead, because I really, really didn’t have to walk back to the store. So, I swiped the card through, made the appropriate selections, and set up the pump. The gas didn’t come. I waited and waited, but the gas didn’t come. So, I let go of the handle, turned back to the pump, and tried to see what was wrong now. Then, the gas started to flow and it started with so much force that the pump popped out of the gas tank. I turned just in time to be sprayed from head to toe with gasoline—mostly in my face and all over my skirt.

I stomped back to the store and reported the incident to the clerk. She just blinked at me. I stomped into the rest room, cleaned myself up as best I could, but I still reeked of gasoline. I stomped back to the car and did the only I could. I popped the trunk, threw my coat and my skirt into the trunk, slammed it shut, and put on the trench coat I’d lent to my mom. The shirt I was wearing was a tunic, long enough that some people—but definitely not me!—might wear it as a dress, so this wasn’t quite as “revealing” as it might sound.

Finally, I got into the car and was prepared to drive away and never, ever come to a Road Ranger again. But my mom said she wanted her receipt. So, I drove her up to the store and got out her walker and let her go in by herself. She came out a little while later, saying that not only did the clerk say that I must have “done it wrong,” as if I hadn’t been pumping gas without incident since I was fifteen, but also claiming that she’d already given me the receipt. My mom told me to come in with her so she could get her receipt.

“Mom, I’m not wearing any pants!”

And that was that. We drove away. When I’d finally gotten us into my mom’s garage it hurt to get out of the car, because my sweaty skin had stuck like glue to my mom’s leather seat. I limped to the other side, helped my mom get out and up into her house. Then, I changed back into the clothes I’d worn for the IEP and I went home.

The days that followed didn’t get better, because the sinus infection I had had become full-blown bronchitis, and got progressively worse. My productivity went from being negligible to be nothing at all. And I was angry. I was angrier than I had been in a long time. As a person of faith, I’d been praying this whole time for some help—divine intervention. The Bible tells us that God answers such prayers. My prayers were being answered with silence and I was angry. I’d had enough. I couldn’t take it anymore and I couldn’t do it anymore and I was done. I was DONE. I QUIT. And if God wanted to change that He’d have to do something big.

But we develop routines for a reason—at least, the ones we develop on purpose—so, the next morning I did my prayer journaling, grudgingly, then I did my independent studies. And, while my anger and resentment didn’t evaporate, I realized something. There was that nagging voice saying, “Of course you couldn’t take it, of course you couldn’t do it, of course you should quit...” And I finally stopped long enough to examine why.

I am a person with a disability. And as long as I’ve lived I’ve heard that people with disabilities can’t… It doesn’t matter what it is, there’s always somebody saying that a person with a disability can’t do it, or can’t do it well, or can’t do it enough, and shouldn’t try to do it at all. And for as long as I’ve been aware of the disability rights movement I’ve been fighting this kind of stereotyping. I’ve been fighting the oppression that says that a disability—any kind of disability—dictates what we can and cannot do. Each of us has things that we can do, things that we can’t do, and things that we cannot do very well but might enjoy doing anyway. Disability doesn’t change that. I know this. I believe this! I fight for the world to see this!

But it doesn’t save me from that subtle and not-so-subtle voice I’ve heard all my life.

So, here is my confession: I am a person with a disability and I gave up—just for a day—for no better reason than that I believed that, because I am a person with a disability, I couldn’t do it. But I won’t live my life like that—that’s really something I just can’t do.

Compulsory Celebration

  • Posted on August 2, 2013 at 10:00 AM

By the time you read this, our monthly stipend will have arrived. The boys will have their routines back and we’ll be able to get some of the things they’ve been missing for them. Our celebration won’t be extravagant, because we have to be careful with what’s coming in to make it last, but there’s definitely some celebrating going on here!

Hardships and Progress

  • Posted on July 31, 2013 at 10:00 AM

The bad news is that my family has been struggling financially. Too many long-term freelance projects ended too close together. Those that remain are inadequate by themselves. Replacement projects have been hard to find in this lingeringly difficult economy. I’m being considered for several employment positions, but those are taking too long to meet immediate needs. So, it’s been a struggle for us, especially considering the financial hardships have impacted the boys and altered their routines. They’re not happy about it.

Of course, it’s not that I haven’t had work to do. This experience has kept me very motivated to make as much progress as possible with my book, while still seeking out other opportunities. I’m accumulating a very nice word count and I expect I’ll be able to keep that up. The project is taking shape quite nicely.

So, I’ll take the bad with the good and continue to pray that things get lastingly better very soon.

Rough Week

  • Posted on February 3, 2012 at 8:00 AM

Last week was our roughest week in a long time, though technically it started the week before.

Here’s a quick list:

  • Thursday we found out that Alex would need another surgery, and it would happen soon.
  • Also on Thursday, our tank ran out of oil—so we had no way to heat our home.
  • On Friday, we got oil, but the furnace wouldn’t start again.
  • Also on Friday, Alex was pronounced “in excellent health,” so that was a bright spot.
  • Also on Friday, it was snowing heavily (Wisconsin snow storm + no heat = bad).
  • So, we called a technician and got the furnace started again.
  • I also got a call that Chicago was being snowed in too, so class was canceled for Saturday morning, which was much appreciated.
  • Unfortunately, the furnace ran for less than 24 hours, and the technician wouldn’t stand behind his work and wouldn’t come out again.  So, by Saturday evening we once again had no heat and the house was getting cold again, and we’d wasted $75 on a bad service provider.
  • So, we borrowed two space heaters and bought two more, which rose the temperature in the house back up to 60 – 65 degrees.  Nice.
  • Monday, of course, was the surgery.
  • In the days that followed, we devoted a lot to helping Alex stay comfortable and safe from the rough-housing of his brothers.
  • Our Internet connection also went down, but only after I finished the rewrite I needed to send to a client.
  • Then, the man who the article was about passed away, and not quite in the way that he’d wished.

It was a lot to deal with all at once, but I’m hopeful that things are going to ease up soon.  Our furnace is working again and our Internet access is restored, and both are good signs.  But if you’re wondering why I haven’t been as present online or why I might need some time to recuperate before I jump back into the fray—well, I hope this is explanation enough.

Post-Op: My Tough Little Man

  • Posted on January 30, 2012 at 8:00 AM

In many ways, Alex still seems like a young child.  He enjoys Veggie Tales and other forms of entertainment geared for younger children, though admittedly Veggie Tales is one of those things that can be enjoyed for a lifetime.  He’s reliant on others for daily care needs.  He struggles so much with relatively simple tasks.  From a strictly “independent doer’s” perspective, Alex is very much like a young child.

But Alex isn’t a young child.  He’s a young man, a tween.  He’s a boy learning how to become a man. Brandon and Will’s paths to manhood, though each different from the other, have been more or less typical.  They each have their atypicalities, but the paths themselves form a linear progression, with ups and downs, regressions and bursts of development, lags and rushes, but more or less straight courses moving forward.  Their gains in independence have been fairly easy to mark and recognize.  Alex’s path is very different.  In some areas, he seems to make very little progress.  In others, he’s growing and changing.  But you have to be willing to see it, to recognize it, to acknowledge it.

Certain events and experiences show our characters.  These events come in many shapes and forms, but all represent hardships of one kind or another.  According to the movie, Shadowlands, C.S. Lewis compared these experiences to the master artisan chipping away bits of stone to form the beautiful statue we are to become; it’s painful, but necessary.  Other Christian references refer to the refiner’s fire or baking clay to make pottery.  The idea is that God is crafting us, as any master craftsman crafts his creation, and we are becoming more perfect by our times in the fire.

But not everyone survives this process, let alone becomes more perfect because of it.  We all struggle, we all fall, and we all fail at times, but some of us get back up and try again, try to be better.  Some of us sell out to earthly temptations.  Others break under the strain.

The vessel that is Alex—the outer shell, the body and its limitations—is childlike in many ways.  But inside Alex is growing strong and sure.  He endures.  He seeks comfort when it is needed, and accepts it when it’s offered, but he no longer clings to me as he did when a little child in truth.  He’s growing, he’s enduring, and he’s becoming the man he will be, slowly and surely.

I don’t know how to put into words what I observed.  It wasn’t so much a matter of doing.  It was how it was done, the spirit it was done in, and the way it was done.  Once, Alex was the happiest person I knew.  Despite his limitations, he was joyful and happy and exuberant.  The spirit shined and it was a light in our house that shone brightly and with a constancy that I dearly miss.  But the limitations and frustrations, not to mention the daily trials and intrusions Ben has placed on his older brother, have worn away that shine.  Alex is struggling.  But, as he suffered his recovery from surgery that first day in my mom’s house, I saw a renewal of that spirit, a glimpse that assured me it wasn’t gone or worn away, that it would shine again it its own time, as it shone that day he bore his pain and his new, if temporary, limitations.

The next day, Alex was back to struggling and discomfort, irritated and aggravated and frustrated.  But the light is there, waiting, banked against the daily trials, looking for the chance to shine again.  The vessel may not be perfect by man’s standards, nor even normal and acceptable; the spirit may still need perfecting by God’s standards, as we all do; but the soul in that little boy, who is becoming a man, is a great soul, full of something special that has nothing to do with “needs.”  Someday, and I’m committed to this, I will help to find a way for Alex to share this with the world, for he has something to contribute, something to be “productive” about, and I will not all that contribution to be stopped by earthly, able-minded prejudices.

Out of (Self-)Control

  • Posted on December 11, 2010 at 11:51 PM

Yesterday was Alex’s eleventh birthday.  At first, I was going to write a post reminiscing on how Alex used to be so sweet and happy and calm; and I was going to compare that to how worried I was about his escalating aggression and lack of self-control.  But, yesterday went so well.  He was excited and hyper, but he was happy and having a great time.  I decided not to write that post.

Today.  Today, Alex fell off a chair.  It wasn’t a big fall, and he wasn’t badly hurt.  He landed on his side, and it was clear to me that he struck the side of his face when he landed.  The skin was extra white and a little puffy.  I tried to help him, but helping him became a wrestling match.  He was hurt and wanted to lash out.  He needed to lash out.  And that’s the way things have been lately.  When things go wrong, Alex’s frustration and anxiety shoot through the proverbial roof, and he melts down almost immediately, except instead of melting down he lashes out:  biting, pinching, hitting, and kicking whoever he can reach.

We’ve tried everything we know to do.  We’ve tried everything the school staff knows to do.  We’ve sought outside advice.  But none of it has worked.  Alex’s aggressive behaviors are getting worse.  He’s ability to concentrate on his work and self-regulate is getting worse.  He’s out of his own control.  It’s not just that he’s out of my control or the school’s control; he’s out of his own control.  And we’ve tried everything short of medicine to alleviate his distress.

I hate the idea of drugging my child.  There is such an ugly history of using chemical restraints to induce external control on individuals with psychological or developmental differences.  It’s an ugly, ugly history and I want no part of it.  I don’t want to force my child to take drugs so he can be manageable.  And that is what I see.  I don’t think of it as medicine, but as a chemical restraint, an attempt to make him manageable.  And I don’t want any part of it.

But today….  What if Alex had been seriously hurt?  What if he needed to go to the emergency room?  Considering the trouble I had examining him after his fall I know we would have needed physical restraints to hold him.  If he had a neck or head injury, he could have done himself serious damage, just struggling to lash out.  If he needed emergency care, they would have drugged him just so they could treat him.  It wouldn’t be something that’s right for him.  It wouldn’t be something given to him in monitored doses.  It would have been chemical restraints given in an emergency situation so he could be treated for his injuries.

I don’t know that the medication that’s been recommended will prevent that need.  I don’t know what it will do, and the doctors aren’t really sure either.  It’s an attempt.  It’s an experiment.  And I hate that, too.

But, if it works, it will help reduce the aggression and the anxiety, it will help him stay calm and self-regulated, it will help him learn and communicate.  It may make a big, big difference in his quality of life.  And that would be wonderful

And if it doesn’t work, we can stop it.  Try something else.

But I still don’t like it.  I find the very idea repugnant.  But we’re out of options.  If the situation continues as it is, it’s just going to get worse.  Alex doesn’t need to get much bigger before he’s truly dangerous to himself and others.  And that’s not Alex—it’s not the sweet, happy person Alex could be.

After yesterday and today, and all the many days in the past, it’s becoming clearer and clearer that Alex is probably bi-polar like his father.  And as rough as that is, that’s not what’s bothering me.  As rough as the behaviors are, they’re not what’s bothering me.  And it’s not just the need for medication, either.

Even knowing there is no answer, I want to know why.  Why is Alex the one who has to go through all of this?  Willy and Ben are autistic.  They’re just autistic, but being autistic is enough of a challenge in this world.  Alex is autistic, with (formerly) bad tonsils and bad adenoids, bad eyes, hernias, nutritional deficiencies and resistance to the special diet that would address those deficiencies, and now probable manic-depression.  Why are Willy and Ben basically healthy and well-adjusted?  Why is Alex not?  Why does Alex have to deal with all of these complications?

It’s not that I wish Willy and Ben were more sick.  Of course not.  But why does Alex have to go through so much?

Recently I read a post by Sarah on PlanetJosh.  And I can relate to that.  I want to scream at the top of my lungs—to nobody in particular, to the universe at large—LEAVE MY SON ALONE!!!