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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.

The Counseling Angle

  • Posted on December 13, 2013 at 10:00 AM

I’ve never been much of one for counseling. I’ve tried it for depression. I’ve tried it when Mark and I were working our way through a rough marital patch. I’ve also watched Mark go through counselors until he found one he more or less clicked with. It’s hard finding the right person, and sometimes there just aren’t enough options.

After Willy started having seizures, he struggled to cope with them. The seizures destabilized his moods and made him prone to irritability. When he started taking anti-seizure medication, we expected his moods to stabilize, too. Instead, his moods got worse. In a moody fit, Willy wrote us a very scary letter that expressed suicidal feelings without suicidal ideation.

Mark is diagnosed with bi-polar disorder. I’m diagnosed with depression. We know way too much about emotional imbalances to let something like that slide. I made an appointment with Willy’s pediatrician, showed him the note, and asked for a referral. Actually, I didn’t have to ask for the referral, because the pediatrician offered me a referral before I got the chance to ask. Of course, Willy’s doctor was well-versed on Willy’s autism and epilepsy diagnoses, so he knew we’d need someone with special skills. He had just the person in mind.

When I made the call, I explained the complexities of our situation to the receptionist and asked for an appointment with the person Willy’s pediatrician recommended. It turned out that the person our pediatrician had in mind was a psychiatrist. The receptionist confirmed that she would be the very person she would recommend for a family in our situation, if we needed a psychiatrist. The receptionist recommended, however, that we start with a psychologist. She selected one based on our criteria and we scheduled our initial appointment.

Willy’s counselor turned out to be a great fit. She was easy for me to talk to, which is important because I’m the one who has to explain the complexities of our family dynamics. She’s also easy for Willy to talk to, which is even more important because he’s the one she’s trying to help. She has a solid understanding of autism, a good understanding of epilepsy, and a fabulous understanding of how special needs and adolescence can collide.

During our next neurology appointment, I showed the same letter to the neurologist. I talked about the counseling and I also talked about my discovery that mood instability and depression were a side effect of the prescribed medicine. After discussing our options, the neurologist recommended that we try a supplement called B6 before we considered changing Willy’s prescription. We were very lucky to find a medicine that eliminates Willy’s seizures with such a low dose and there’s no guarantee that another medicine will have the same results. In his experience as a neurologist, B6 had helped several patients with such side effects, though there wasn’t a documented medical explanation for it.

I can’t tell you how much of the transformation is due to the B6 and how much is due to the counseling. All I can tell you is that Willy is doing much, much better. It’s going a bit far to say Willy’s mood is stable, because he is, after all, a teenager. But he’s not depressed and his mood instability is not abnormal in its frequency or its severity. While we’re not ready to stop the counseling sessions quite yet, we’re focusing more on skill-building than on damage control. The hope is that, when we’re done, Willy will be better able to cope with life without the safety net of counseling, though we’ll continue the supplement.

Epilepsy Awareness: The Buzz Word is Control

  • Posted on November 8, 2012 at 10:57 AM

So, November is Epilepsy Awareness month and, apparently, the color is purple. Well, I think I’m covered there!

At this point in our epilepsy adventure it’s all about control. Last time we went to the neurologist, he upped Willy’s dosage of Trileptal. Since then, Willy has had only one seizure (that I can remember being told about) and it was after he missed a dose. I’ve gotten him a fancy pill box that holds a whole week’s worth of pills, with boxes for both morning and evening doses and with extra boxes if he gets mid-day doses added to his medication schedule.

It may be too soon to feel so confident, but I think this medication and this dosage will continue to be successful with seizure control. Willy has enough medicine in his system now that even if he does miss a dose it doesn’t automatically mean he has a seizure. Though, I’m getting better about checking to make sure he doesn’t miss a dose and he’s getting better about remembering to take his medicine so he doesn’t miss a dose. None of us want to take that chance.

While controlling the seizures is a major victory, other issues of control have arisen. I recently attended an IEP for Willy. We discovered that the periods when Willy’s anxiety and depression-like symptoms have seemed to get better at home, they’ve gotten worse at school, and vice versa. So, there’s not a reduction of anxiety. It’s simply being displaced between his different environments. Along with the anxiety and depression, we’re seeing decreases in his self-control and impulse-control. Now, after two years of not needing one, we’re going to have to create a behavioral intervention plan for school.

Unfortunately, there are too many unknowns. Is the re-emergence of these behaviors and the increase in emotion instability a result of the onset of epilepsy? Is it a side-effect of the medication? Is it the result of puberty? Is it a combination? Or is it its own thing? To try to get answers and help, we’re going to seek out a therapeutic psychologist with experience with children with autism and we’re going to try to make sure the psychologist, the neurologist, and the school can work together effectively.

On the up-side, bullying no longer seems to be an issue.