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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.

Still Progress

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

Two steps forward, one step back. It’s not the kind of progress I want, but it’s still progress.

Willy got sick. He felt unwell for less than 24 hours. I got sick, too. I felt unwell for three days. Neither is particularly unusual. Willy has a robust immune system. I don’t. Willy inherited his from his father.

So far, neither Ben nor Alex has shown any signs of illness, though I suspect my mom might have it. Willy had gone over to her house to play, ended up getting sick, and then spent the night. Still, I was the one who came down with it second, after Willy. If my mom got it, she waited a few days before showing signs of it.

I may have been exposed earlier than her, but neither Mark nor the younger boys are showing any signs of it. It comes down to my physical weakness. It was a rather mild illness, as far as those things go, consisting of headache, a slight fever, and nausea. The weakness lingered for me, forcing me to sleep even though I was too comfortable to sleep well.

I had just gotten back on track to where I wanted to be, then I got sick—and I was forced to sleep—and got shoved off track again. My battle with my to-do lists is so tenuous it doesn’t take much. Losing a single day sets me off track. Losing three… *sigh*

The only thing that’s saving me right now is that I wasn’t going at my full pace. I wasn’t even trying to be full-time. So, in that sense, it should be easier to catch up. Of course, the reason I wasn’t going full-time was because I don’t have the strength for it, so I doubt I have the strength to “catch up” either.

Two steps forward, one step back. It’s still progress, but that doesn’t mean I have to like it.

Speaking of Progress

  • Posted on July 11, 2014 at 10:00 AM

Having surgery, then sleeping through a good portion of my recovery, gave me something of a power boost. I felt better than I have in a long time. My mind was clearer, at least for a little while. After I came back to work full-time, I realized two things:

  • First, the time I put in when I could only work part-time wasn’t as clear, coherent, or organized as it seemed at the time.
  • Second, my priorities had shifted because I’d had plenty of time to consider what was going well, what wasn’t, and what I could do about it.

I cleaned up my messes. I cleared up my backlogs. Now, I’m feeling like I’m really and truly back. I’m ready to walk my walk and make it work. My priorities truly have shifted.

I’m going to keep these shifts close to the vest, but I’ll give you a hint…I’ve talked about doing this before, but then I lost track of it. I’m starting fresh, breaking free, and doing a little cheating.

It’ll make sense in time. For now, I’m just going to enjoy being back and keeping my little secret. :)

Recovery-In-Progress

  • Posted on July 9, 2014 at 10:00 AM

So, I went to my post-surgery check-up, but the surgeon wasn’t there. I don’t know why I thought he would be. Instead, I met with another assistant. She checked out my incisions, but other than that the check-up was all verbal. I told her what I had experienced, good and bad, with my recovery thus far. She was pleased with my progress.

Her informed assessment, however, was something of an obvious conclusion. I’ve had too much stress. On the one hand, my life is stressful. This is seen as being particularly true whenever I bring up the boys. I brought up the boys to make the point that I’ve spent too much time putting their health (and educational) needs first; and that I’ve been putting my own health on the backburner for far too long. Her point was “Wow, three with autism, that’s got to be stressful all by itself.” Hm. Yes, I suppose it is, but not nearly as much as people might think, especially now that we’ve figured out what works for them.

On the other hand, she also made a point of stating that my body has been under particular stress lately. My crash or flare up, my diagnoses, my sleep issues, and now surgery – there is absolutely no “wondering why” I’m physically fatigued. No matter how much I may want to accelerate this process, and just be better already so I get back to things that matter, the fact is that my body is still healing, still recovering, and that this matters, too.

There’s so much I want to do…but if I focus on that, instead of on what I can actually do right now in this given moment, then I just add to my stress unnecessarily. For some, this might seem self-evident and obvious. For me, it’s kind of revolutionary. My idea has generally been: “Get through this as quickly and thoroughly as possible, so I can get on to the next thing.” It’s not that I am in such a hurry that I forsake quality, because that isn’t effective. It’s that I’m so focused on doing as much as possible that I’m actually reducing what I’m capable of because too much of my energy and focus is spent worrying over or planning for things I can’t do yet.

Here I am trying to recover, trying to build my capacity, and I’m eroding my good intentions with unnecessary stress. [Grumble, grumble.] I swear I’m going to get this balance thing right one of these days.

A Family Reset

  • Posted on July 2, 2014 at 10:00 AM

A little a while ago Ben brought home a piece of school work that Mark put up on the wall. They’d written statements for him and marked where he should complete them with a long line. “My name is _______,” “I am _____ years old” (which he got wrong), and other things Ben is expected to know. One of the statements was “My mother’s name is ______” and Ben answered “dad.”

Mark is a stay-at-home father. I am a work-at-home mother. While I may share more of the domestic responsibilities than the typical working spouse, Mark has a heavy load to carry to fulfill his daily role (especially during the summers) and he has access to far less support than traditional stay-at-home mothers do. Mark and I both appreciated that Ben recognized that Mark’s role was a bit untraditional.

Now, with me partly out-of-commission, we’re undergoing some changes. I can’t lift more than 15 lbs. without endangering my abdomen. Since I don’t know 15 lbs. versus 10 lbs. or 20 lbs. when I’m lifting it, I may not be the strictest adherent to this rule; however, as a family we try our best to accommodate my recovery needs. But this simple restriction changes a lot.

Since my sleep cycle is so screwed up, I have to make most of the days when I’m awake during the day. I usually do my shopping at night, late at night, when everyone else is asleep. I would go to the grocery store, load up my cart, go through the self-check lane, bag my groceries, load them into the cart, load them into my van, and unload them into the house all by myself. Then, I’d put them away. The boys would wake up to a house full of surprises.

Laundry is a bit different. Sometimes I would do it all myself, but sometimes Mark would lug the heavy hampers downstairs for me. Now, I can’t even carry the baskets of clean clothes upstairs unless I separate a load into smaller baskets and make several trips. Daily chores have become especially exhausting. So, now Mark’s doing all the heavy lifting for this family, both literally and less literally.

I may be the one bringing home the bacon, both literally and figuratively, but his job is harder. I know, because I’ve done it. It’s easier when I can help more, but getting me healthy is a priority, too. Resetting expectations and obligations isn’t easy and the timing isn’t good. Summer is not the time to mix things up. But we’re trying, as a family, to make it work. You can’t reset Mama without it spilling over to the entire family, even if she’s a work-at-home Mama.

A New Kind of Recovery

  • Posted on June 30, 2014 at 10:00 AM

So, last Tuesday I went to the doctor because of severe stomach pain and came out of the hospital without a gall bladder. By that time, I’d nearly made a full recovery from my last flare up of fibromyalgia (the diagnosis will be confirmed or changed later today, I hope), which doesn’t mean “cured” of course, but it does mean I had energy and concentration levels that were similar to what I’d had before my crash.

Now, I’ve spent almost a week recovering from my infection and surgery. I’ve got about five more weeks before my body is fully healed (no more weight restrictions and no more bathing/swimming restrictions), but I suspect I’ll have my energy and concentration levels back up before then. I’m already feeling remarkably better consider I slept all of the first day after my surgery and most of the second. I’ve even put in a few part-days of work and one full one, though only the one. With any luck today will be my second.

Unfortunately, now that I’m well-rested and on the mend, my insomnia is back, as was proven last night. I tried to sleep, but I couldn’t. Then, I took melatonin and a sleeping pill and they sort of worked and sort of didn’t. I’m starting to think my sleep issues are going to be the most difficult to resolve.

Before my surgery, I was beginning to sort out the difference between fibromyalgia pain and arthritis pain. Then, once the gall bladder issue started I had a new kind of pain to factor into the equation. By the time I went to the doctor it was all gall bladder pain all the time. After the surgery, my other pains were muted and I had a rather deep, cutting kind of pain to deal with, but I also had the kickass power of percoset to keep that under control. Now, I’m off that and my abdomen is tolerable and I’m back to feeling my fibromyalgia pain.

It’s been a rocky week. Alex missed his Summer Swim two times in a row. If he goes again at all, it will have to be because Mark or my mother takes him. I’m on a no-swimming, no-baths regimen until after the first week in August. It’s a new kind of recovery. It’s certainly better than having kept my gall bladder, but it’s going to take some getting used to, now that I’m actually awake enough to get used to it.

Review: Blazing My Trail

  • Posted on November 28, 2011 at 12:00 PM

Rachel Cohen-Rottenberg’s book, Blazing My Trail: Living and Thriving with Autism is a sequel to The Uncharted Path. This memoir picks up where the other left off, providing new information and insights that will help to put the first book into perspective. Most importantly to me, it follows up on her description of burn-out. In my opinion, her new understanding and her recovery were what made a sequel essential. Like The Uncharted Path, this is a self-published book available in soft cover and e-book formats. It’s a text-based book; I do not remember there being any pictures and a quick scan didn’t reveal any.

In Blazing My Trail, Rachel approaches autism from a slightly changed perspective. Instead of focusing as thoroughly on her struggles as she did in The Uncharted Path, Rachel focused on solutions, accommodations and living with autism. The distinction, though subtle, is significant. Blazing My Trail is definitely a book about hope and about acceptance; whereas The Uncharted Path was a book about understanding and accommodation. In the first, Rachel struggles; in the second she thrives.

While I find Blazing My Trail to be a necessary sequel, and I’m very grateful for the book and its timing, I can’t help but feel that something is lacking from the book. The first book stuck with me. I can close my eyes and I can recall the experiences revealed throughout the book. There is an intimacy and an awareness that seems rather lacking in the second. Perhaps it’s just my experience and the distressing nature of my own fears, but I can remember little from the second book after her medication revelation without flipping through the book for a refresher. There is less cohesion to this second book; each chapter seems more distinct from the others. Yet, as individual essays, these chapters are each significant in and of themselves.

Perhaps a second reading will reveal that this feeling of disconnectedness stemmed from me and not from the book itself. At the same time, I cannot recommend the book as a stand-alone experience. Its significance is in direct relation to its predecessor.

Nevertheless, Blazing My Trail is a beautifully written sequel that is highly recommended to everyone who wants a continuation of the story they read in The Uncharted Path.