Tag Archives: pain

Mayhem and Migraines

In a rare park trip with me in the picture

Hard Times by Santana from the LP Marathon

As I sit writing this it’s 3:30 in the morning.  It’s not a choice.  For the first night since Thursday I had managed to get to sleep at a reasonable hour, mainly due to the fact that I’ve averaged a few hours each night only.  Sam, you see, had such horrible blisters and pain in all parts of his body that I had to keep him comfortable.  (I’ve gotten tons of flack, by the way, for not leaving his blisters alone and seemingly doing more harm than good.  But the poor kid has them so he cannot even sleep.  I know why they happen.  I know your body heals with them . . . but if he lies on his back, side, or stomach, he would pop or then peel them off . . . creating a situation where he’ll either bleed or infect them.  I did what was necessary.  Leave me alone already, sometimes I actually do know what I’m doing, alright?!)

It seemed like I might be able to get through the night.  Exhaustion has a way of doing that to you, after all.  I was in a dead coma-inducing sleep . . . until about a half hour ago.  Why, you ask, when I write every night did I not write this before bed as usual?  Well, again . . . no sleep for 3 days will change your priorities.

But just a few minutes ago Sam, the blisters finally manageable and able to lie back on his bed without tearing up, was standing in front of me . . . in serious pain.

I’ll preface this with the fact that Sam seems to have gotten so many of the best parts of me and his Mom.  He’s cute as a button (his Mom); he’s built like a wrestler . . . not sure who gave him that; he sings in perfect pitch – even when he was a little toddler – me again; He has that wry sense of humor, my side of the family; He smiles a lot, his Mom; he’s confident, flirtatious and outgoing . . . again, the amazing part of his Mom.

Unfortunately, with all that, he got one of the worst things I could have possibly given him.  The kid was doomed to get them, by the way – headaches.  In fact, they started much like I did, as migraine headaches.  That was something his Mom had as well, horrible migraines.  But then they turned into what I get – paralyzing, horrific “cluster” headaches.  These headaches, you see, are blindingly painful and literally bring you to your knees.  A doctor once asked me, in the height of one, sitting in the office, what it was like – to describe the pain.  He then shined a bright flashlight directly into my pupils after shutting the lights off to “give me a break from the photosensitivity.”  I nearly ripped his scalp from his skull.

The best I can describe this to you, and it’s not exaggeration, is that if someone took an icepick and found a spot above your eye (doesn’t matter which one) and then jammed it in your forehead with intense force.  But far from just jabbing it, which would dull eventually, they turn it back and forth so that it doesn’t throb, like a normal migraine, it pierces.  It is intense, physical, and horrific pain.  If I catch it soon enough I can stop it from paralyzing me.  Same with Sam.  If I can’t, I get sick, throwing up, and unable to function for most of the day.  They are called “cluster” headaches because they come in clusters, bunches of them.  Some of them really short, others horribly long.  They can happen one a day, or 3 to 5 a day for weeks on end.  The idea is to break the “cluster”.  That, and avoid triggers.  For Sam and I both, that’s the sweetners – NutraSweet and Saccharine . . . they both create such intense headaches you literally want to rip your forehead off your skull.

The latest theory, you see, is that these start much like a normal migraine would.  Your blood vessels open up and the blood flows freely, starting to throb.  but rather than that throbbing, painful thumping in your head, the vessels have wrapped around a bundle of nerves in your head, start to constrict them, and strangle them.  Rather than throbbing pain you get searing pain.

That was Sam just minutes ago.  Since it hit so late at night, in the middle of his sleep, we couldn’t catch it early enough.  I think, like me, he cannot be too long without a good night’s sleep . . . and like me, cannot sleep to late in the day or it triggers a headache as well.  Believe me, as a guy – not sleeping until noon or even 10am is maddening.

Sam was in tears.  He hurt.  He kept sobbing asking why they had to hurt so bad.  I gave him the ibuprofen first, that didn’t help.  20 minutes later he was throwing up.  He started asking silly questions like “why can’t I talk when I feel like throwing up?”

There are other symptoms.  My wife always knew when I had one coming.  I couldn’t put my sentences together correctly.  I got scatter brained.  My eyes would be like looking through a fog.  I was sensitive to light.  Even when I managed to get rid of the pain the other symptoms remained hours after.  My first doctor, a neurologist, was more Dr. Frankenstein, I think.  I learned more than he had.  He tried Depakote.  It made me exhausted all the time.  He tried Lithium – something they use for people with bi-polar disorders – that made me gain an extraordinary amount of weight and sluggish; they tried oxygen therapy – that made me dizzy and the headaches stayed; they tried Imitrex, the medicine for migraines – and it made the headaches twice as bad, literally making me pass out once from the pain.

Sam is like me now.  I give him ibuprofen.  Mine is a similar formula to it.  If that doesn’t work, there’s an old drug, sort of like a version of pseudofed, that is the last ditch effort.  After he threw up last night, I gave him one.  I put a very cold compress on his forehead and as his tummy settled I put it on his forehead and laid him next to me on the bed.  I turned on the TV and found that nearly every channel had “Friends” reruns and began writing.

My point to all this is the fact that I had as many problems.  Not headaches, but breathing problems.  I had a lot of issues, ones I’ll detail in another post, and I woke my parents up a lot.  Sam looked worried to wake me but I assured him it was OK.  I don’t ever want him or the others to think they can’t get me, that’s what I’m here for.  I’ve been very adamant that even though we became parents we didn’t lose our own identities.  It’s why I told my wife I had no issues with her working or even making more money than I did.  I wasn’t going to stop being a musician or journalist because I had kids, I wanted them to know that it was still my life and theirs would be the same.  I’m just lucky enough to have them as part of that life now – a part that takes a lot of my time, but still a tremendously rewarding part.

My Mom and Dad never, ever, chastised me for waking them up.  I didn’t Sam, either.  He was so hurt and sad I wanted him to know it was OK.  I reached over, the wet rag on his forehead, and rubbed the spot that hurt.
“How did you know that’s where it hurts, Dad?”
“I know, Sam.  I get them there, too.”
“I hate this.”
“I do too, buddy.  I will be right here next to you.  You just relax now and rest.”

I knew he’d overcome it when his breathing slowed and evened out.  The big sigh coming out of his lungs and expiring at the air signaled his resignation to enter the dreaming realm.

I sit now, hoping I don’t get the same headache in a few hours.  I doubt I’ll sleep now.  I look up and wonder how writers of any TV show thought it was a good idea to have a guy become roommates with a monkey.  I could lie down and try to sleep but worry with the presence in the bed next to me I’ll dream about Andrea and don’t.

But mostly, I just want to watch over Sam in case he needs me again.  It’s mayhem, this madness of migraines.  But I embrace the mayhem.

Because it won’t be long and he won’t be here to need the help.  I still take it one day at a time, I have to, but the later chapters of our story are still looming there like some obelisk from the movie 2001.  (Not sure if that makes me Dave or Hal . . .)  But for now I want Sam to feel the comfort that I’m here to watch over him.

I want them all to think it’s calm, collected, and cared for.  Even during the mayhem and migraines.

Falling Slowly

Falling Slowly (Live) by The Swell Season  One of the most beautiful songs ever written/performed – by the REAL artists, not the crappy Fox American Idol version . . . 

Abbi and my son Noah, in a happier moment

It’s funny, the holidays came and went and by that I mean not just the holiday itself but all the buildup, the decorating, the seasonal songs, the feeling in the air, all of it, and we seemed to get through.  But it’s exactly as I’ve told everyone before, it’s not the major events, the massive holidays or birthdays and major events that are hard on us.  It’s the little things, the stupid, silly routines we’ve forgotten about that make us turn around to say “hey, Andrea did you see . . . ” only to falter realizing she’s not there that make you sit and fall apart for awhile.

It’s also true that we’re not really getting “better” as many people want to quantify it.  In fact, now that we’re through the holidays, it’s kind of like  things have gotten a little bit worse, something I wasn’t really prepared for, I have to admit.  Now, don’t get me wrong, it’s not like the first month or so after she passed away.  Things then were a haze of torment, depression, exhaustion and dehydration.  That first week, even up to the point of going to the mortuary and all of it I spent on the couch.  I sat in a daze, unable to sleep, unable to really move or do much.  I sat up most of the night, in the odd stillness of the late night/early morning and couldn’t process what I was going through.  I go through emotions, pushing to resolve to succeed with my kids so they would feel safe then falling forward with my head in my hands wanting to just roll into a ball.  I tried to read.  I watched the entire series “The Wire” (not a season or a few episodes, I watched the ENTIRE series) via download.

One of the things that people don’t grasp is the fact that this isn’t a typical wound.  This isn’t like you’ve been shot or stabbed.  Sure, the bleeding may slow, but the wound never closes.  The hope and feeling by most people is that you get through it.  If you’re solid, Midwestern stock, like I claim to be, you just power through.  If you go to therapy you talk out your problems and the TV version of your life shows how everything gets better and eventually your life is rosy pink and you move on.

It’s not how it works, though.  I can’t blame people for thinking this, I don’t think most people are exposed to it very often.  We don’t live in the times of the prairie when Scarlet Fever and Tuberculosis would sweep through and take a number of people, leaving families to struggle on their own.  Modern technology and medicine help us to live longer and survive more, so we aren’t exposed to the life and death struggles our ancestors did.  We also are so much more surprised when we lose someone to something like pneumonia, a curable disease most of the time.

No, as a friend once put it to me, you don’t get better.  You just don’t.  You learn to adjust and you learn to live with it.  It’s your ability to cope that changes, not your physical or mental wounds.  Maybe some learn faster than others.  It’s clear we haven’t gotten it right yet.

I knew this already, sure, but I saw the physical signs over the last couple weeks as they appeared.  Today when we went to church, the kids usually break from the parents and go to a children’s liturgy, partly so they learn the readings easier, partly so they’re not bored stiff in the church and bothering everyone while the priest gives his homily.  Neither of my sons would leave.  They stayed rooted to the pew, steadfast and tears starting to form in their eyes.

“I don’t want to go!”

Their sister, Abbi, tried to make them go, but even Hannah, our middle, wouldn’t budge.  They wouldn’t say why, but I got it.  They seemed OK up until the last couple weeks, but now they want the security.  They don’t want to be away from their family, particularly me.  The boys have asked if I actually have to go to work every day, could I be home when they get back from school?  Do they have to go to Nebraska for the summer?  They’d miss me!

None of these factors came up before this last couple weeks.  But I know why they have, I feel it too.  My daughter tonight had a long discussion with me.  “I feel like I’m just kind of askew,” she says.  Not upright, not quite on the regular path.  From my own perspective, I feel like I’ve been going through the motions, and even then, not very well.  I started off with such a massive surge of energy, the push to get it all right, to do it all.  I got up really early and stayed up really late, which I still do, but I made breakfasts from scratch every day.  I made dinner in the morning so it could be heated up that evening to have dinner at a decent hour.  Now I can’t.  I just can’t keep up the routine.  I burned out too quickly and it kills me.  The laundry for 5 people is massive.  I run the machines daily, at least 1-2 loads, many times more.  Now, instead of getting it all done, I feel like i’m falling, slowly and surely, watching the world blur as I go.

Worse, I feel like the daily requirements make it so I can’t talk to the kids or do anything.  Abbi is not doing as well as she should, I can tell.  As close as she is to me, she had her Mom to help her through all the things you need when you have to talk to your Mom.  Particularly when you are a girl.  Andrea was uncanny with those things, knowing exactly what was going on, what to do.  It was like she was inside her daughters’ heads.  I know it, because there were so many times I felt the same way, when things were wrong and she knew exactly what I was going through.  You have no idea how hard it is to cope when you have that and then it’s snatched away from you.  Abbi lost her Mom and then I had to take what was her normal life, her high school days, and snatch those away.  I couldn’t afford her school anymore, and she didn’t want us to pay for it, but I see it.  She is having so hard a time letting that go, and having such a hard time getting the new school to accept her.  I can’t fix it, I know that, but it hurts both me and her, I think, because I want to try, but unlike her mother, I don’t know what to say.

We went right after Christmas to see the movie “The Adventures of Tin Tin” because Noah wanted desperately to see the movie version of the books he’d read over the summer.  When we go there, the parking lot was packed, insanely filled with people.  I had Abbi take them up, pick up the tickets from the ATM/kiosk, then send in Hannah and the boys to get us seats.  After finding a parking spot, getting my tix from Abbi and then going to get food, I’d come into the theater already through many of the previews. (Including, to my chagrin, one on the Hobbit, which I was dying to see!)  Noah was in tears.  Not the tantrum, angry or sad tears.  These were panicked, scared tears.  As I walked up I could see him stretching, trying to see us walking into the theater.  He stood up, sat down, was looking back and forth through the theater, trying to see with his little form, the gap between the wall and the front of the theater where I’d come in to walk up to the seats.  When I got there he shrank back into his seat, turning his head so I couldn’t see.  Noah had taken his hand the back of his wrist, and rubbed the tears away.  He was a bit embarrassed, which he shouldn’t have been, and a little angry.

“He was really worried, Dad,” Hannah told me.  “He thought you weren’t going to make it.  He thought something had happened.”
“I just thought you’d miss the movie,” Noah spat out, a little angrily, and I almost broke.  The little guy was panicked and he was angry at himself and me for getting that scared.  I sat next to him, moving one of the other kids over a seat so I could sit by him, and put my hand on his head, squeezing a little, gently, to let him know I was there.  He looked up a little, but turned back to the screen.  It wasn’t until something he recognized from the book that he warmed back up.

I don’t have the answers.  I really don’t know what to do half the time.  The days I feel straight and upright are so few it really is, as Abbi put it, like I’m looking at the world from a slant.  The trees growing diagonally, the world moving forward and us moving sideways.  The wound doesn’t heal, we learn to live with it.

It’s obvious this last few days that I still have a lot to learn.  Until then, I’ll fall, slowly, until I can pick myself back up.

The Forecast Calls for Pain…

One of the HR people at my old shop used to tell me she thought a dark cloud just followed me around every day – like a depressed version of “Pig Pen” in the Peanuts strips.

This week was when the cloud caught up.

Once it does, it takes twice as long to get ahead of it again.  When Noah hurt a little kid in the EDP room this week, in fact, it didn’t just drop a cold mist on my head, I could see the lightning and hear the thunder.

The Forecast Calls for Pain, as the great Robert Cray says.

To begin with, the first indications that there was anything wrong came from Noah’s big sister, Abbi, not the teachers.  Understand, now, that I don’t dispute that Noah was wrong, nor do I think any kid deserves to have somebody bigger than them push or hurt them.  That’s just not right and I won’t put up with it.

What makes me angry, though, is that the first I’d heard of this was when it was already too late.  Noah is like a pressure cooker set too high.  It doesn’t take much more pressure to make it go off, so if he’s bothered, even if it’s not meant to be bothersome (in this case, he was dead wrong, Noah should have just held his temper) he reacts.  He’d been reacting this way for nearly a week, I think.

I heard about it Tuesday.

Worse yet, I talked with him, and he then goes to school with the promise of behaving.  He didn’t.  In fact, he moved directly from yelling to hitting, pushing the kid over and pinning him to the ground.

I could see the lightning flashes.

We went through the apology letters and the letter to his Mom, and then one of the teachers, a person I trust and admire had a talk with Noah about his behavior and told him how he needed to find other ways to work out this aggression.  She gave him a journal to write in, helped him find ways to work out the anger, everything he needed.

Then the school called because the principal had a talk with him as well.  Parents had complained.  He was getting a disciplinary form, nothing for his permanent record, in the backpack.  Was he getting counselling?

And there was the thunder.

He is a loving, wonderful, funny little boy and smart as a whip.  But he likes being the center of attention – not as the class clown but just as a matter of fact.  But he has been through this once before.  He just needs to be able to control his actions better, which I know is reaaallllly hard at the age of 8.  It’s hard at 38.  (No, that’s not my age, don’t send me messages, please, I know how old I am, it matched the point I was trying to make.)  I know it was wrong, I feel awful that others are having to deal with this too, but he’s also not a kid that can be so much more than the reputation he’ll get.

Now, of course, he can’t even be near trouble when it happens.  It’s like the corollary to the “Boy who Cried Wolf!”  Someone gets in a fight, Noah’s nearby, he’s part of it.  Kid yells at him on the playground, he’s going to be questioned what did he do to start the shouting?  Now, as a result of his lack of control he’s going to have to be TWICE as good to avoid getting in trouble – when it’s deserved and when it’s not.

I’m not going for dramatics here, Noah’s not getting suspended, he’s not going to be on anti-psychotics or anything, the principal’s being very nice about it and seems thankful I’ve responded quickly.

But I have to ask this: why is everything about their mother?  Here’s the thing nobody took into account: Noah had this problem well before he lost his Mom.  We had issues in Kindergarten, even had problems last year.  I know that it’s a contributing factor, it’s the 800 pound gorilla standing on top the white elephant in the room every minute of every day in our house.  I have no doubt that it helped spark this latest storm front, but it doesn’t change the fact that it’s not the biggest factor in it all.

I honestly believe that it’s not just my son who used his mother’s death to try and get out of trouble that first day.  I think it’s an easy answer to the problem for everyone.  If the kid is misbehaving, it’s an easy thing to say it’s because he’s upset about his Mom.

Of course he’s upset, wouldn’t you be?  But is it the chief cause, the main determining factor?  Are you kidding me?

Believe me, I wish it was that.  I wish it was the fact that his Mom passed and that he missed her and had closed down without talking about her, it would be SO much easier.  It’s just not right.

Guess what, everybody, he DOES talk about it.  He misses his Mom SO very much.  My worst example:  We were on our way home from Nebraska, just a couple months after Andrea had died.  We needed something to eat and in the Denver airport your choices are ice cream or the freaking Clown house.  So it was a happy meal.  When he read on a McDonald’s Happy Meal box that “Little Ryan (name changed to protect the innocent and because I can’t really remember his name anyway) was gravely ill.  Thanks to the Ronald McDonald house, Ryan had his friends and family near him and he was able to get better!”

I watched his face blanch, I really did.  His eyes got glassy and watery, his gears were turning – I could see it.  He could easily have just sat there, holding it in, but I have told ALL of the kids that we’re in this together.  If they need ANYthing at ANY time, call, email, text, or just come up and talk to me.  I’ll make the time.  If I need to stay home, work be damned, that’s what they mean to me.

He looked up at me and I knew something was wrong.  He simply asked “is that why Mommy died, Dad?”

“Is what why, kiddo?”

“The box here – it says that because his family was there with him he lived.”  His voice grew a little more frantic . . . his thoughts were getting erratic.  He started to stumble to put his thoughts together.  “I wasn’t there with Mommy, and that’s why she died.  If I had been there, would Mommy still be alive?!”  (It’s here that I have to tell you how much I sincerely hate McDonald’s – worse than I ever did before.  Not the food, which is horrible for you; not the atmosphere, which is chaotic; it’s that they would write this kind of thing on a Happy Meal box like it’s the ONLY thing that helped a cancer-ridden kid survive.  Not the doctors, medication or the little boy’s flat out tenacity and strength. )

Yet Noah talked with me and asked me about it.  You may see this as unreasonable or silly, but in the 8-year-old mind of a little boy who saw his Mom on a Tuesday morning and the next time he saw her, she was closed in a casket – that’s not silly.  It’s scary.  Horrifying.

I told him that it wasn’t his fault, it could never . . . ever . . . be his fault.  I looked at Sam and he did what he always does, closed down, his eyes now glassy, too.  “Sometimes bad things happen,” I told them.  “They aren’t nice, they don’t make sense, and it’s really, really unfair!  But I never want you to believe that this was EVER your fault.  Mommy got sick, it’s that simple, and no amount of company would have helped that get better.  She tried so hard to stop it but her body just couldn’t fight any more.”

I told him that his Mommy would never have left us if she thought we couldn’t do this on our own, something I truly do believe.  That, and she wasn’t alone.  I was there – the day she went in, the moment she left.  She was NEVER alone, and she would never have thought it was his fault.

As much as she wasn’t alone, neither is he.  I don’t work for 90 hours a week and I don’t get home insanely late.  I don’t come home, expect my daughter to cook or do laundry.  I don’t plop on the couch and stare at the TV.

From the moment I got home from the hospital, I had to buckle down and show these kids that they were going to be cared for.  I don’t break down in front of them.  I keep the routine, I try to get them to activities we wouldn’t have done before, and I make sure that they know they’re not alone and they are supported by me.  Sure, the horrible quiet of the evening makes me think about these things, but I’ll be damned if THEY have to face it alone.

I don’t write this in an effort to say I won’t take Noah to counselling nor do I think it’s a bad thing.  I’m just saying – to paint this little man, hell all 4 kids, in a corner and say their behavior, let alone their lives are defined by the fact that they lost their mother is so painfully wrong.  They’re defined by us both – hopefully getting the best parts of Andrea and me, the pieces of their lives put together by the influence, affection, activity AND events in their lives.  It’s that box everyone talks about.  The problem is, we don’t fit in it.

Still, it doesn’t change the fact that I can see the cloud following us around – the Forecast Calls for Pain . . . but if I can hear the thunder and see the lightning, maybe we can handle the storm.