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Disability Identification

  • Posted on January 9, 2015 at 10:00 AM

I’m reading Nothing About Us Without Us by James I. Charlton. One of the topics he covers is disability identification. As the argument is presented, one of the biggest challenges of the Disability Rights Movement (DRM) is getting people to both identify with their disability and their peers with disabilities and to feel empowered; because, dominant cultures assert that disability is weakness and inferiority.

As the mother of three children with disabilities, it was easy for me to reject the idea that my children were weak and inferior. I value my children as they are for who they are. It was easy to recognize that, yes, they have disabilities, but no, their disabilities don’t mean what the dominant culture says they mean. This is especially easy when confronted with the dominant culture’s willingness to see children like mine as disposable, where parents who murder their kids are the real victims. That makes it really, really easy for me to reject the dominant culture wholeheartedly, because I just can’t find it in my heart to sympathize with parents who kill their own kids, let alone empathize with them.

As a woman with a newly diagnosed disability, it’s a bit harder for me to reject the idea that I am weak and inferior while still acknowledging my disability. Really, the only thing I have going for me in that regard is that I was already primed to reject the dominant culture. When you’ve lost abilities that you once had, it’s hard not to see yourself as “less than” you were. I don’t have the same physical capacity I once had, but since I was never a very “physical” person, I can handle that. But I don’t have the same mental capacity I once had, either, and that’s much harder for me to cope with, because I was and am a very “mental” person.

I think a lot. I think when I work. I think when I “play.” I think instead of getting bored. I am a nearly endless source of my own “amusement.” I hate the fact that I lose track of my own thoughts. I hate the fact that I can’t remember things as readily as I used to. And I hate the fact that fatigue and cloudiness interferes with the way I want to live my life.

I can deal with the pain of fibromyalgia a lot easier than I can deal with the mental impact. There is part of me that sees that impact as making me less than I was. For that part of me, acknowledging my disability is acknowledging that I am less than I was. But there’s another part of me that knows that this struggle misses the point.

When people without disabilities regard people with disabilities as being “less than,” they’re not talking about being less able, they’re talking about being less human. The dominant culture treats people with disabilities as if they were less human, less valuable, less worthy of life, of rights, of support.

I am less able than I was, but I am no less human, no less valuable to my family or my clients, and no less worthy of my life, my rights, and the support of my fellow human beings.

This is simply true.

I could make it a matter of arrogance and point out that I was more able before my disability and that I am still more able than most of humanity with regards to the things that I value. I am still more able to handle three children with autism while respecting them and nurturing them into adulthood. I am still more able to write a damned fine piece, whether it’s a blog post or a web page or a book. I am still more able to create a loving, sustainable marriage with a partner with bi-polar disorder. I am still more able than anyone else to live my life.

That’s true, too; but, it’s not the point.

The point is that people with disabilities should feel free to identify as having a disability without shame and without being made to feel less human. The point is that people with disabilities should not be ashamed to associate and affiliate with other people with disabilities, or even with other people without disabilities. Humanity isn’t measured by degrees of ability. Humanity is an either/or option. Men are human. So are women. But gorillas aren’t. Dogs aren’t. And the fact that I can’t remember the right word(s) to describe the distinction doesn’t really matter either.

We are all human beings, regardless of our abilities and our disabilities, and we all matter.

 

 

(This is not to be construed to mean that we should be free to go around killing gorillas and dogs for fun, because they don’t matter. Animals matter, too. So do plants, for that matter. It’s just that, in my opinion, people matter more.)

(Now, I’m going to go ask my husband what the word(s) I can’t remember are, because it’s bugging me that I can’t remember. Apparently the words I couldn’t remember are binary distinction, but Mark doesn’t think it works, because there is more than one type of animal, so it’s not binary. But either/or and yes/no are binary, and that was the point I was making, so I’m going to stick with the thought that refused to be pinned down.)

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.

It Doesn’t Take Long

  • Posted on August 13, 2014 at 10:00 AM

Speaking of bugs, over the weekend I had the energy to do something I hadn’t done in months and months. I knocked down the cobwebs that had accumulated in my den. You see, it doesn’t take long. My den is in the basement. The den is the only room that’s “finished” in the basement and this room is only semi-finished, with a bare-beamed ceiling and either bare-beamed or concrete block walls. Considering that our foundation isn’t sound, bugs can find all kinds of ways to get in and the spiders just eat ‘em up. So, there are cobwebs wherever I’ll let them grow. I’ve even had a few over-friendly spiders land on me over the years. (But never in my pants!!!)

Recovering from my flare-up and subsequent diagnosis of fibromyalgia has been a long process, especially with a surprise surgery thrown in to complicate things. I still have days that are more flare than flair. Anyway, the last time I really cleaned was sometime before May and probably way back in 2013. I went through an entire 16-sheet box of Swiffer Sweeper cloths just to get the layers of cobwebs down in my den alone. Ick!

A lot of other things haven’t gotten done. Between my being out of commission and the boys being home for the summer, the house is in dire need of a thorough cleaning. This is planned for the week they go back to school, but I’m thinking I’ll work my way up from my den and just keep going now.

School-Year Anxiety

  • Posted on August 8, 2014 at 10:00 AM

After the muddled end of my last school year, I admit I’m anxious about starting up school again. I still haven’t quite gotten a handle on my fibromyalgia. My business is growing, but it’s growing primarily in a way that involves me doing more work to make it grow, as well as the work I need to do to provide for my family. I’m not up to a full day’s worth of work, quantity wise, even though it takes me a full day (or longer) to do it. I’m not sure how I’ll strike a balance between work and school once it starts, since both are priorities. There is so much that is unknown and I feel so unprepared, that there’s definitely an anxiety factor involved.

Willy, on the other hand, seems willfully unaware that school will start in less than a month. He will acknowledge it if I bring the issue up directly. He’ll discuss what concessions he’s willing to make with regards to new clothes, new school supplies, new shoes, and a new backpack. He’s willing to talk, briefly, about how he felt last year went. He won’t talk directly about his hopes and fears about the coming year. It’s difficult to weigh his anxiety levels, because he asserts a blasé attitude that seemingly belies his willfulness on the matter.

Alex, of course, is impossible to gauge. Honestly, I think getting back to the routine of school will be good for him. We have had something of a routine this summer, which has helped; but it’s a routine that spreads across the week, not over a single day, and it’s subject to far more change than the routines of school. This is not to say that he isn’t experiencing anxiety over the start of school. It’s more to say that it’s difficult to judge that anxiety relative to the buzz of anxiety he seems to feel most of the time. There are times when he’s completely free and, by noting those times and repeating the surrounding circumstances, we’ve even been able to increase them. However, the onset of anxiety is never so easily pinned to one cause or another, because he can experience both instantaneous and delayed reactions, depending on his processing during the moment. He seems to be handling the idea of returning to school well, but it’s hard to tell.

Ben is another matter. He seems genuinely unaware of the imminence of school. If I bring it up, his behavior reflects a belief that what I’m saying is not interesting, and therefore not worth attending to. This doesn’t necessarily suggest a blasé attitude similar to Will’s, because Ben’s hyper-focus can be very difficult to break through, even if you attempt to do so with something immediate, tangible, and desired. Ben has very much been “in his own world” this summer. He’ll zone into something desired and prolong it as long as possible. The easiest way to break him out of it (not that we do this on purpose or anything) is to give Alex the opportunity to do something he likes to do that annoys Ben. Ben will stop whatever he’s doing, wherever he’s doing it (as long as they’re both in the same house) and try to make Alex stop. If Ben cares one way or the other about the start of school, then he’s not saying so. I suspect he’ll care once he has to go back to focusing on tasks and timetables that other people set for him.

Of course, Mark is the stay-at-home parent who is not going to school, so the start of school means something different to him. I remember what that was like and, if he’s anything like me, he’s looking forward to the relief. After all, he’s borne the brunt of a difficult summer. He’s definitely ready for a break! And he definitely deserves it!

One Long Night

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

When one’s sleep schedule slips like mine does, it’s hard to know whether one will be awake during the day or during the night or both. I awoke Thursday afternoon. My progress was slow, but my energy was high. My thoughts were often scattered. I had work to do, so I made what progress I could as the afternoon inched towards evening and evening inched towards night and night inched towards morning. Still, I wasn’t done and I wasn’t really tired.

I knew I should stop and allow myself to wind down, but there were Friday things I had to do and Thursday things I hadn’t finished. I pushed myself onward and onward and onward and still I wasn’t tired, but nor did my progress speed up.

I did every Thursday thing I had to do and every Friday thing that must get done. Then, I finally crashed—leaving both Thursday and Friday things left undone, including a date night with my husband.

Slowly, slowly, over the weekend, I made up a few things here and did a few things there and still I inched by, mostly completing those things that couldn’t wait. Mark got his date night. I got some sleep. Every time I slept, though, I seemed to wake up sore and stiff like I’d wrestled with bears all through the night or maybe rode a long road on horseback in my sleep.

That one night turned into two workdays put together. That one night cost me my weekend and several days’ worth of productivity. I haven’t begun to catch up to what’s been leftover from that one night and the days that followed. At the time, it seemed “worth it.” I’ve got to remember that’s it’s not. I’ve got to remember that I don’t have that kind of capacity, even when it seems that I do, because I can’t recover like I used to do.

Pacing the Day

  • Posted on June 16, 2014 at 10:00 AM

As I write this, the full moon is still up, though now the dawn is too--and so am I. Technically, today (as I write this) is Saturday. My day started at 5:00 AM yesterday (Friday) morning. I woke up bright and early in order to be to court on time. As my husband so eloquently said, “No day is a good day when it starts with a court appearance.”

I spent my early morning hours journaling, praying, and trying not to give in to the worry monster within. I got ready. Then, I waited for my Mom to arrive. She got here and we rushed off and barely got into the room on time. Then, we waited for about an hour for our case to be called. It was painless, but exhausting. And the worst part was that I felt as if I hadn’t actually accomplished anything.

Mark and I went to my Mom’s to move some televisions around and we went home. I finished journaling and praying. I worked my way through my self-development exercises. I checked my e-mail. I felt so exhausted I went to bed without feeling as if I’d accomplished anything.

I’m getting better at recognizing when my body has had enough on whatever sleep it’s gotten, in this case a total of four hours. Of course, acknowledgment isn’t enough. Action is required. That means going to be at 10 or 11 in the morning, even though I haven’t actually done anything, because my body is ready to sleep. If I miss that window of opportunity, then I could be up for sixteen hours with all my brain cells putting up neon signs that would read “Out of Order.” At least, I’m assuming they do. It’s not like there’s any cells that retain the ability to read when that happens, so there’s no way to know for sure. Anyway, the point is that there are consequences if I ignore my body.

So, I went to bed. I woke up around 5 PM. I got to work. I took a break from work. I put the boys to bed and got some caffeine. I went back to work. I took a break to read with Willy and then I sent him to bed. I went back to work. I took a break to go grocery shopping. And now I’m back at work. Pretty soon I’ll be going to bed again. At least, I hope I will be.

This is how I pace my day. I assess my responsibilities, my appointments, and my deadlines. I compare these to my fatigue and my concentration. I plan accordingly, at least as well as I am able to do. I pace myself. Day and night have very little to do with it.

Waiting to Know

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

So, I went to see the rheumatologist. On the one hand, she could confirm that all of my symptoms are consistent with fibromyalgia. On the other hand, she told me that fibromyalgia is only diagnosed when all other alternatives are exhausted. Now, I’d thought I’d been through that already. When I first went in to see my regular doctor with my symptoms – before they’d gotten worse – he had the lab draw a lot of blood and run a lot of tests. Apparently, the rheumatologist knew more tests that should be run before a diagnosis of fibromyalgia could be confirmed.

I did quite a lot of research, so I was rather surprised when she started listing off possibilities that I’d never heard of or never considered. Ironically, while some of these possibilities seem a lot scarier than fibromyalgia, she was adamant that all of them are considerably more treatable than fibromyalgia and any one of them would be a better alternative that settling for an inaccurate fibromyalgia diagnosis. She reinforced this idea by telling me that she wouldn’t be upping my dosage for the drug my regular doctor had prescribed, because the improvement I was seeing was “as good as it gets.” She did, however, prescribe an additional medication to help my muscles relax enough so I could sleep better. Perhaps the fact that this new medication has only had marginal results is indicative that she might be onto something. I also learned that I already have some arthritis, which may be why rheumatoid arthritis came up as a possibility.

So, not only did she have the lab draw even more blood for even more tests, she also had me go in for an X-ray. To top it off, I’ll be having a sleep study done in the middle of June. (I wonder what will happen if I can’t sleep for them during the study.)

It will be another month before I see her again and see what all of this means. Will it be fibromyalgia or will I be researching something new? Will I get a treatment plan or is this really “as good as it gets?” Personally, I’m inclined to hold out for something better, particularly when it comes to the concentration factor.

Phoenix Rising

  • Posted on May 23, 2014 at 10:00 AM

I don’t know about you, but I’ve always kind of loved the idea of the phoenix. It gets to light up the night sky while it soars and swoops, or even while it rises from its own ashes to live again. Once I thought about it, I decided to turn my crashed-and-burnt airplane metaphor into a phoenix.

For those who don’t know me quite as well, I’ve overcome significant adversity in my life. I’ve crashed. I’ve burned. I’ve gotten up. I’ve dusted myself off. I’ve flown again. Time after time. In the past, depression has usually been my downfall. After experiencing a true crash-and-burn fibromyalgia style, I have to say I kind of prefer the depression.

Sure, depression feels worse in a lot of ways. Let’s face it, hopelessness sucks. On the other hand, fibromyalgia is physically painful. I can handle that surprisingly well. What I dislike is the impact it has on my ability to concentrate.

Again, for those who don’t know me quite as well, I’m a professional writer. Particularly, I’m a freelance writer. I own and operate my own writing business. I’m also the primary “breadwinner.” I support my family (or not) by writing. Lately it’s been more the “not,” which sucks. I’m also a graduate student with a 4.0—again. Yes, this is my second graduate degree. I am also the go-to person for my children’s IEPs and other issues.

The frustrating thing is that all of this requires the ability to think clearly, to remember things, to hold words in my head long enough for them to get off my tongue/fingers, and to make them make sense when they do. For me, the worst part about fibromyalgia is that I’ve been feeling like I’m losing my mind. Not in a going crazy sort of way, but in a dementia sort of way. Of course, that’s a comparison that fails to capture the true loss of dementia, but still.

The most poignant part about all of this is that my ability to think started to slip right around the time my grandfather, who was experiencing symptoms of dementia, made it perfectly clear that he didn’t want to live that way. My situation was totally different and I wasn’t quite as stuck in the inevitable decline as he was, but it made me much more sympathetic to his position. As much as I love and miss my grandfather, when he passed I respected the fact that for him it was a relief.

Now, I have my own relief. I’m getting better. My phoenix is rising into a new period of my life. A period of growth and productivity. A period of profitability and publication. It’s time to light up the night sky as I soar and swoop and fly again!

Recouping Until Fall

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

Before I crashed and burned, I was planning on taking a summer semester of courses. Now, I’m looking forward to having the summer off, though that’s something of a misnomer.

Sure, I’ll have the summer off from school, but not from:

  • Taking care of my children,
  • Making a living,
  • Finishing my memoir,
  • Building up my platform,
  • (Hopefully) preparing my memoir for publication,
  • (Maybe even) publishing my memoir this fall.

So, it’s not like a vacation. Of course, my last vacation culminated with Willy’s diagnosis of epilepsy, so I’m not really sure vacations are my thing.

I did get some time away recently. I flew down to Texas, drove up through Oklahoma, Missouri, Illinois, and back into Wisconsin. This wasn’t a vacation either. My grandfather passed away and my mom inherited his car, which is in MUCH better shape than hers. We didn’t linger anywhere, because I had to get home to my family, but it was a road trip.

Still, between seeing the rheumatologist today, getting a treatment plan in place, tweaking my medication, and taking it relatively easy, I should be able to get through the summer and then through my fall semester without any sudden losses of altitude. For the moment, however, my airplane metaphor is still under repairs.

Crash and Burn

  • Posted on May 19, 2014 at 10:00 AM

Maybe you haven’t noticed, but I haven’t been on for a while. I haven’t been blogging. It’s been much, much longer since I’ve been on any of my other social media sites. I’ve been like an airplane falling from the sky, dropping projects, tasks, and responsibilities in the hopes of getting airborne again, until, eventually…I just crashed.

Crash and burn. I crashed a few weeks before my graduate courses ended. I was in so much pain I could barely stand it. I was taking a round of OTCs every four hours and taking up to three super-hot baths a day to relieve the pain. The low point, however, was the day I tried to do some reading from my textbook. I was having so much trouble concentrating I had to force myself to finish a single page. When I made it to the end of the page I looked up and realized TWO HOURS had passed. I spent TWO HOURS reading a single page from my textbook.

I called the doctor. Finally, he was convinced. I received a tentative diagnosis of fibromyalgia, a prescription for pain relief specified for the treatment of fibromyalgia, and a referral to a rheumatologist. The medicine helped just enough to allow me to finish my course work on time (barely) and secure my 4.0. Now, with less than a week to go to my rheumatology appointment and no more school work, I’m diverting my new-found ability to concentrate on generating some much-needed income for my family and starting up those things that don’t generate income, but do keep me connected with the world—like this blog.

So, I’m back. I’m not at full-strength, but I am back.