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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!

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.

Sadness

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

It comes unbidden. No event set it off. Nothing lingers in my heart that justifies it. Perhaps it’s seasonal or cyclic. It doesn’t matter.

I feel the sadness leeching through my life. My body slows. My mind wanders. Work comes much more slowly to me. I am sad. I am so very tired.

It’s inexplicable. The sadness is not my own. Perhaps it comes from chemical imbalances in my brain. Perhaps it comes from the cloud-covered sky. Perhaps it comes from the grayness taking over the landscapes that surround me. But it is not my own. It’s not mine.

I try to think of the last time I took a full day off. I can’t be sure. I suspect it was around my latest graduation. It’s time to do it again. I have to. This time, it’s around the Thanksgiving holiday, starting a little before, ending a little after. It’s a good time for it. At least, the pressure to work is less. The pressure to produce scholastic material is less.

Still, I hear me telling myself to snap out of it. I need to snap out of it. And I do…for a while. I do something. Go shopping. Wash, fold, put away laundry. Organize the coming day. I stay awake to start the morning right for my children. I wait for the time to wake them up and get them ready for their big day back to school.

Then, I’ll sleep. I’ll wake. I’ll get back to work. I’ll work away this sadness that is not my own. I won’t claim it. It’s not mine. I let it wash through me and wash out of my system. Then, I’ll push on. That’s the plan. I hope, as I always hope, that this time it won’t drag me down. I pray that this won’t be the time I fall and cannot pull myself back up.

I’ve been there. I will go there again. I know that. I accept that. But it won’t be this time. It won’t be this day. Not yet.

Aggression: Understanding Willy

  • Posted on April 10, 2013 at 10:00 AM

Kathleen and Kim wrote a post for The Autism Channel about aggression. This is my third response.

I’ve already discussed Ben’s aggression and Alex’s aggression. Now, I’d like to turn to Willy, because Willy’s experiences with aggression are both markedly different and even more heartbreaking than those of his brothers.

Willy has had a few minor phases with overt aggression. Early on, when we were just learning about autism, Willy would throw tantrums and he’d throw toys. His initial “social” attempts involved hitting, kicking, biting, and pinching to try to get his way. Then, he developed the language and social skills he needed to be more successful. So, basically, he developed in a fairly “typical” way, but on a different timeline than his “normal” peers. For many years Willy exhibited few aggressive behaviors, even fewer than his older brother, who is a typically developing child. Willy is compassionate and passionate about justice, which has sometimes gotten him in trouble when he’s argued with teachers or parents who use their authority in a way that Willy disagreed with, but it also made him conscious of how aggressive acts were acts of harm.

Then, this summer he “developed” or “manifested” epilepsy. (Honestly, I don’t know how much epilepsy is always there, like autism, or if it is developed, but that’s neither here nor there.) Ever since, he’s had a rough time of it. Even though the seizures are under control, we’re still dealing with the emotional fall-out from that experience. Added to that, Willy started the school year as the victim of bullies, which may or may not be on-going in a way that’s too subtle for Willy to understand but not too subtle for him to feel (at least, this is a theory shared by his counselor). So, it’s easy to understand why he’s having problems. And, yes, under these stressful circumstances, he is acting out more, including some aggressive behaviors.

Unfortunately, acting out is really the least of it. Willy has become somewhat more aggressive, and that’s unfortunate. The bigger problem is his self-destructive emotional state. He’s “acting out,” but it’s more on an emotional level than actual aggression (though he did hit a teacher after he saw the teacher (playfully) hit another teacher, because he didn’t understand the interaction). He’s experiencing bursts of anger that he doesn’t really understand and can’t control, which results in some aggression, too. What worries me so much more is that he’s also experiencing bouts of sadness and anxiety. He’s had suicidal thoughts.

This is aggression turned inward. He doesn’t really want to hurt other people, so he turns it on himself, which in turn makes him feel worse. Neither the help at home nor school is sufficient, so we’ve started taking Willy to a counselor. It’s early in the process and we’re still in the “it’s going to get worse before it gets better” stage of things.

Now, on the surface, it may seem that Willy’s story has little to do with aggression. Yet, from watching all three of my boys, actually all four of them, it seems rather clear to me that this self-destruction is aggression turned inward, which also involves lashing out when whatever that’s going on inside becomes too much for Willy to bear. I don’t know what to make of that observation, but it seems significant. Regardless, understanding and support are the keys to helping us cope with all of this as a family and provide each of our children with what they need. Right now we’re finding both rather lacking.

The Shadows of Genetic Shades

  • Posted on June 14, 2012 at 8:00 AM

When Mark and I married and began our family together, we didn’t know we were likely to produce autistic offspring.  We did, however, know—between my history of depression and Mark’s bipolar disorder—we were likely to see ourselves in our children, in the form of depression at least, and probably mania, too.  (It wasn’t until after we were married that we realized I brought anxiety into the mix as well.)

As our boys grew, there were signs that were indicative of what was to come.  Alex would get wound so tight—between anxiety and hints of mania—that his emotions burst out for lack of effective opportunities of expression.  Willy’s emotions would swing—from elated to morose and back again—with such rapidity it would be hard to predict from moment to moment whether he’d be crying or telling me I was the best mother in the world and his day was great.

Up until recently these feelings—these uncontrollable emotional swings—had a juvenile innocence to them that took off the edge.  Yes, anxiety, depression, and mania in children can be severe and painful, but in our boys it was relatively mild—enough to be present, but not enough to be too worrisome.

Then came puberty with all its changes, imbalances, and turmoil.  For both Mark and I, puberty was a major trigger, though the signs were apparent a bit earlier with Mark.  It seems this is true for Willy, too—and probably Alex, though he’s not quite there yet.

Knowing it was likely, even knowing it was coming, helps I’m sure, but not by much.  Having an intimate familiarity with depression helps us to be more understanding, but at the same time it seems to make the ache of watching it blossom in our son all the worse—at least for me.

I want to wrap Willy in my arms and make the hurt go away, but I know I can’t.  I do what I can, knowing it won’t be enough, knowing that for all I can do I cannot fight this battle for him.  I watch and I ache for my son and I ache all the more knowing that when it passes this time around, it’ll come back again and again and again.

The shadow of depression stretches over us.  The shades brought about by our genetic heritage dance in the overarching gloom.  I wait.  I love.  I help.  I ease.  But I cannot dispel the shades that tear away my son’s happy smiles, leaving a tired flatness in their place.  But I trust that the spring will return to his steps and the smiles will wreath his face in delight once more—for a time.

Almost Okay

  • Posted on September 20, 2010 at 12:29 PM

Some things in life take on a feeling of regularity, despite their seeming abnormality.  For me, depression is one of those things.  As the clock strikes midnight on January 1st each and every year, I know I will experience four or five bouts of depression in the coming twelve months.  As abnormal as this may or may not be in the grand scheme of human living, it is normal for me. 

It is expected.  Knowing that it is expected makes it slightly, but only slightly, more endurable.

Also expected is the journey of depression itself.  It starts with resistance.  “I won’t let it happen again.”  “I’m going to power through and I’ll be fine.”  Or maybe even denial.  “I’m not heading into a depressive episode.”  “I’m not slowing down.  I’m not losing track of my own thoughts.”  “I am motivated.  I’m still working!”

Then, I reach the point where denial is no longer possible.  I’m stopped.  Like a sudden halt in the stampede of life, I’m thrown from the saddle and I find myself sitting in the dust—stunned.  Or, more accurately, I find myself sleeping for ten or twelve hours—when I usually subsist on six hours a day.  I find myself watching television or reading obsessively.  Episode after episode; book after book.  Anything to avoid dealing with the things on my to-do lists—the things of my life.

After wallowing in depression for a few weeks or a month, I drag myself out.  I force myself to be productive.  I move.  I work.  I get things done.  Slowly—so slowly—I climb from the depths of depression back onto the track of daily living.  I travel this path for a few months, then I fall again.

My depression is cyclic.  I know I will be depressed, but the times of depression are not themselves predictable.

Sometimes, however, there are hiccups in this cyclic process.  For example, illness can trigger depression for me.  At this stage of my life, productivity has taken a consuming, looming presence in my life.  There’s much to be done, and me to do it.  So, when I get sick, I become unproductive.  When I’m unproductive, my brain tricks itself into being depressed—after all, depression = unproductivity, therefore (logic assumes) unproductivity = depression.

I become sick.  Days pass by unproductively.  I feel depressed because I’m unproductive.  I feel worse because I’m sick.

I estimate that two or three of my depressive episodes each year are triggered this way.  I don’t start out by slipping into depression and unproductivity.  I start out unproductive and trick myself into depression.

Now, I’m trying to learn to trick myself out of it.  The past two weeks I’ve been struggling with illness, and thus with unproductivity and depression.  The reason I’ve been in bed is because of illness, but being in bed and watching the days slip by with so little getting done makes me depressed.  But being depressed keeps me in bed and ensures more days pass by with little getting done, even though my body is strong enough to start doing things again.

So, I do things.  I get things done.  I check things off.  And I try to feel undepressed.  Sometimes it feels like this strategy is working.  Then, I remember that I’m still doing things that should have been done last week.  And a little more time slips by.

Ending the Hiatus

  • Posted on August 17, 2010 at 6:35 AM

It’s been a busy summer.  I graduated with a Bachelor’s degree, launched a business, and started working on my Master’s degree.  I started two novels, a nonfiction book, and many shorter projects.  And, of course, I’m always trying to keep up with my boys.

Soon, Ben will be transitioning from the intensive to the post-intensive stage of Wisconsin’s autism waiver, which means more flexibility but fewer hours of therapy.  Willy is going to middle school, which is a point of anxiety and excitement.  Alex is still struggling with bouts of aggression, but has been much happier this summer.  There’s been considerable excitement, loudness, and activity all around.

Recently, my brother, my uncle, and their friend—along with a lot of local helpers—implemented a landscaping plan to address the leak in the basement.  Unfortunately, the only rain we’ve had since then was a big gusher—four and a half inches of rain in an hour and a half, but it rained for much longer than that—and it did not give us a clear idea of whether or not our efforts were successful.  The cleanup work is still not done, but I’m doing a little at a time.  The important thing is the system is in place and should work during a normal rainfall.  But, there is still a lot of rock and dirt to move.

Despite all the activity and all the good things that are going on, I have been struggling with depression.  Perhaps it would be more accurate to say “because of all the activity and all the good things that are going on, I’m struggling with depression.”  Each day there is more to do than I can possibly get done and I’ve tried for too long to do it all anyway.  Working on the landscape project was unavoidable—it’s my house and there wasn’t as much labor as we needed—but after that I let myself crash.  But I predicted that, so it’s all good.

I guess the point is that I’m back, but I’m still tired and still trying to get back to a manageable schedule.  But my to-do list is still over-full.  Hopefully I don’t work myself to a crash again this year, but that’s the risk of being me.

The Little Things

  • Posted on March 1, 2010 at 7:14 PM

Little things seem to be undervalued.  Even the label little things implies insignificance.  Not too long ago a little thing set my world reeling.

 “I love you,” I said, sincerely but also distractedly.

“Yeah, but sometimes I wonder why,” my husband responded.

I stopped in my tracks.  Distractions…gone.  Words…gone.  Thoughts…gone.  Seconds passed and the only thing in my conscious mind was a fleeting thought to count in anticipation of a response, something I do with my boys when there is an apparent delay in processing.  But this time the delay was my own.

A response surfaced, along with a tragic sense of…something.  The response was completely inadequate yet completely true: “If you don’t know, I can’t explain.”

In twelve days Mark and I will celebrate our twelfth wedding anniversary.  We’ve had our ups and downs, our yelling matches, our rough patches, and our breaking points.  We’ve survived them all.  Yet, depression and the words of others eat away at us.

These moments come and I’m never prepared for them.  I can no more put into words why I love Mark than I can put into words why I love my children or anyone else.  Love doesn’t have a why.  Love goes deeper than all the whys we’ve ever put into words.  I can tell you why I like Mark, and even why I sometimes don’t like Mark.  I cannot tell you why I love him.  I just do.  I always will.

The tragic sense of…something lingers.  Again, there are no words for this.  Loss, sorrow, and regret…these words are part of it, but they’re as inadequate as my response.  I mourn for that part of him that is lost in the depression, where the light my love shines cannot reach.  I regret the busyness that keeps me moving and going and trying, working towards a dream that seems both too big to accomplish and too necessary to fail to accomplish.

Somehow I have to express to him (and others who find room for doubt) the why for something that has no why.  Perhaps this will be enough:

This morning, as Alex was just getting his morning started he slipped a DVD too far down his finger and it got stuck and started to swell.  I tried to get it off, but it would not budge.  I buttered it, but it would not budge.  I tried to break the DVD, but it would not break.  Mark was sleeping, so I lead Alex—who was fussing about the pain in his finger and wasn’t I going to fix it, now please!—upstairs and woke Mark up with a hasty plea and he removed the DVD without hurting either Alex or the DVD.

It seems little all by itself.  But there are many strings of little things over these last twelve years.  All together they prove to me, if only to me, that we complement each other.  We fit.  We are two “wholes” that make a better “whole” (versus two “halves” that make a “whole,” which is a phrase that I feel inaccurately describes people).  Our relationship isn’t perfect.  Our lives aren’t perfect.  We’re not perfect.  But we’re the perfect “wholes” for each other.  We enrich and complete each other.  All the struggles, the complications, the disagreements, the deficits, and the inadequacies mean nothing compared to this.

Together we are whole and the little things prove it so.