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.