OK, maybe I’m exaggerating a little. It just feels a sack of cement up there on my neck. That was the second thing I noticed when I woke up from my post-stroke coma. (The first thing was: I said, ‘Who…? What…? Son of a -bleep-!!’ but all I heard was the sound of crickets chirping.) Sure, I just had a nice, long nap but now I can’t look around. What the hell happened to me anyway? I’m like a life sized bobblehead doll – completely immobile but with rubber bands for a neck.

Shortly after we came home six years ago, I got a standing frame that allowed me to stand. It was a blessing to be able to get out of my wheelchair, stand upright and stretch my legs for 30 minutes. On the other hand, it was kind of a pain in the ass too. It took 2-3 people to get me into the thing and since I couldn’t hold my head up (still can’t), someone would stand there with their hand on top of my head and manually hold my head up. This whole process happened EVERY. SINGLE. DAY. for about a year or so. Jen and my whole family worked out a schedule amongst themselves to be here and do this for me. No one ever even slightly complained, not even once, about having to do this but I know that it must’ve been somewhat of a burden (though no one would ever admit it) and I very much appreciated it. (sidenote: When a handicapped person is in the room and everybody’s watching TV, for some reason people will agree to watch whatever stupid crap he or she has on. Except for the one brother who always manages to find a college football game any day of the week!) After a while, my one brother – who is very handy – rigged up this contraption from the guts of a hardhat that attached to the standing frame and held my head up. Despite looking like R2D2 it worked really good! Eventually, I got this fancy schmancy power chair that is also a “stander”, thus eliminating the need for a separate standing frame. (another sidenote: You realize you’re in the ILIS long haul when your insurance company agrees to buy you a wheelchair that costs more than your car).

About a year or so after my stroke, I got some of the strength back in my neck – enough to slightly turn my head left and right. How exciting! No longer did I have lay there in bed with my head turned to the side with my ear folded over and scrunched under. Since my stroke mostly affected the left side of my body, including my neck, my head is always falling that way. Just a slight tilt of 5 or 10 degrees throws off my equilibrium and gets really uncomfortable after a while. I’m constantly asking Jen to straighten my head.

Thankfully, my Jack-in-the-Box sized head lost a little weight and now it comes in at about 50 pounds!