The evening of the day that Steve Jobs died, Wednesday, October 5th, 2011, as I was putting my son to sleep with stories and snuggles, I told him to remember this name: Steve Jobs. I told him to remember that no matter what challenges he may face, he has everything in him that is required to change the world. He said the name over and over again. Because of some damage caused to his brain as a result of the Epilepsy that he lives with or because of the meds that he takes to control it (we’re not entirely sure), he struggles to remember things. I may have to remind him now and then. And I will. And he will eventually be able to remember it on his own.
The next morning, I shared this post on my Facebook profile wall:
This day is dedicated to hunger and foolishness..
That day began for Jazir and I with a short seizure in the morning, which he described as his “head twitching a bit”. I had an ominous feeling and resolved to stay tuned in to my Spidey senses even more than usual. I gave him breakfast, settled him under some blankets watching Toopy and Binoo and let him know I was about to take my shower and would come and check on him in a bit. It’s sort of a normal routine for us on days that we don’t have to ready him for school that I go about doing my thing while he does his thing. As I was running the water for the shower, a feeling came over me.. Jazir is having a seizure. I KNEW it. I went downstairs to find him merrily munching on his breakfast and watching is favourite critters on TV. Strange. It’s unusual for my instincts to be wrong when the message in my body is so resoundingly clear.
On about my business I went, checking on him periodically as always and getting us ready to head to Toronto for a Chiropractic appointment and healing energy treatment. When I came downstairs again with his clothes in hand, ready to get him dressed, I found him contorted in his chair and unable to speak. Seeing him like this is not out of the ordinary for us. Knowing that he was there suffering that horrible feeling and the terror that he has told me comes with it all alone wrenched my heart and my gut and my mind and brought me to sobbing tears in the flash of an instant. “I’m so sorry Jaz. I’m so sorry baby. I’m so sorry you were alone… “ words were tumbling out of my mouth. He came back after a few minutes with that punch-drunk look he gets after a severe seizure and asking why I was crying. He fidgeted and fussed and wandered and climbed onto and off of the chair across the room as his body attempted to reorganize itself once again. He then asked to lie down and for his favourite blanket and closed his eyes to sleep it off for a bit. I’d gotten the right message; it had just come a few minutes too soon. I yelled at The Universe. I’m not certain whether or not my message was received.
Shortly afterward, when I’d collected all that we needed for our trip, I settled him into the car and set off for Toronto. He slept most of the way and felt yucky when he was awake. He was cooperative and as brave as ever in the hands of his Chiropractor. He has spent so much of his life in the hands of medical professionals he has learned well how to “sit still Jaz”, “stand still for just a few minutes Jaz”, “lie still while the doctor tries to help you Jaz”.. through more poking and prodding and seeking and scanning than a child his age should ever have to endure. His courage and his wisdom never cease to amaze me.
Right at the very end of the session and from what I believe was the beginning of unblocking the blocked energy in his upper spine, he seized again for a full three minutes. That’s a pretty long time. At the five minute mark the instruction is to administer Ativan and to call 911 to avoid him entering what is called Status Epilepticus, a state in which a patient enters a seizure and never comes out. I feared that we would reach that mark this time. I still had no way of knowing how long the morning seizure had lasted because I had been out of the room. That excruciating awareness still lingered on my skin.
We finished up, collected our belongings, set another appointment and I carried him back to the car, grey in the face and dopey. He complained again of feeling yucky and said he, “just wanted to go home”. I left him with his dad and made my way back to Kingston, sad and disheartened yet hopeful still. Ever the optimist.
That evening I decided I needed to just get out of the house a while. I wanted to step outside of all of the responsibility and just rest my mind a bit. I opted for a glass of wine at my favourite local resto and settled in at the bar with a pad and paper to ponder menu ideas for an upcoming event. The fellow next to me struck up a conversation and it was fun to engage in that, hearing about someone else’s life. Shortly after that, a friend entered the room and joined some pals at the bar just two seats down from me. We’d been flirting quite a bit recently and I was pleased to see him. The thought of a bit of mutual ego-stroking and desirous attention was enough to allow me to forget some of the trials of the day for a while. The evening carried on. I’ll allow your imagination to fill in the rest.
The following day still riding an endorphin buzz and in a bit of a sleep-deprived and dehydrated haze, I sent a message to him that didn’t hit the mark I had hoped it would. It was a bad judgment call on my part but one that originated in a good intention. So, just as quickly as our fun little foray had begun, it ended. I felt stung and humiliated. In fact, I still do. This little thing we had going on held the promise of being an enjoyable way to periodically get respite from an otherwise stressful existence. There was relief in that possibility. And in one fell swoop, I had destroyed any hope of that. Having waited so long for even a glint of that kind of connection, it was a bitter pill to have to swallow. Worse still, the only person I could be pissed at was myself.
Sometimes.. I over-think things. I’m too sensitive. I over-analyze things. I get my messages mixed up. I think I know people better than I do. I jump to dumb conclusions. I falter. I embarrass myself. I screw up. Who doesn’t, right?
I abhor making dumb mistakes. I can handle making a mistake. But, making a dumb, I-knew-better-than-to-do-that kind of mistake doesn't bode well with me at all. Growing up in my house, mistakes weren’t really an option. As such, I still struggle with letting them go when I make them. I stew over them. That’s what I’ve been doing all day.. berating myself a little. Not flogging.. just berating. I’m not as hard on myself as I once was.
Then.. just now.. I got thinking (all I’ve been doing all damned day is thinking!).. if my day was dedicated to hunger and foolishness, did I not do precisely what I had committed to doing? Did I not act on my hunger? Yes, I did. And did I not allow myself to be foolish? Yes, I did. And did I not learn something valuable in the process? Yes, I did.
And so.. does it matter that I screwed it up? Does it really matter that something that had no future to begin with came to a grinding halt before it got to get really juicy and fun? Not really, no. The anticipation leading up to the moment had been delicious and I had savoured every moment. The moment itself was gratifying and just exactly what I’d needed at that precise point in time. And even if my overthinking, overspeaking self caused it all to prematurely crash and burn.. really, what difference does it make in the bigger picture? None. I have bigger matters to focus on and much more to be grateful for than not.
My conclusion and my wish for myself and that which I commit to demonstrating daily to my son is this: regardless of the pain and humiliation that may come with life’s harder lessons, may I never lose my hunger for living fully and completely engaged nor my willingness to be foolish..
“Stay hungry. Stay foolish.”
Thank you Steve Jobs..
