Monday, July 26, 2010

Two Years

What were you doing two years ago today? It was a Monday, so you might have been working, going to class, or enjoying a hard-earned day off. Perhaps you were playing with your kids, or on vacation? Maybe you don't even remember.

However, for my family, July 21, 2008 was the day that the whole world changed.

I had spent the day at home in Oakland, fretting about my 6-month-old son's newly scheduled neurosurgery date. My Little Monkey had been born with a skull condition that had required a complete craniectomy at 7 weeks of age, and we'd just found out he was going to need yet another surgery in September. When my husband came home from work, I needed a break, and took my little motor-scooter out to do some errands. What I returned to was a scene out of a horror film.

Right as I was coming home from doing some errands, I’d heard a crash, then these guttural noises coming from the back yard. I’d run to the gate, unlocked it, and was met by the sight of my nearly three-year old little girl, Rorysaurus, blood matting her curls and smeared all over her face. After realizing she wasn't hurt, I’d assumed something had happened to her brother, as all of my fears at that point centered on him, and was afraid she’d fallen on him while playing and had crushed his skull.

I raced around the corner of the house, and scanned the ground for my son’s body. My eyes swept over the grass, over towards the laundry room, then back. I couldn’t find him. "He’s over there," our neighbor had said, pointing to the cement in front of the basement where we all did our laundry. And there, on the ground, was a mass of red, blue, flesh and dirt. I stared for a minute before rushing over to the heap that was my brother, Needlenoggin. He was lying flat on his back, looking up towards the swinging wooden planks that had been our landing, nearly three stories above him.

Needlenoggin, then 22, had been taking Rorysaurus out the back door of our third story apartment, when the stairs had collapsed. They'd been holding hands, and then they were falling. In a split second, Needlenoggin pulled my little girl to his chest, rolling around her before they hit the support-beam midway through. His first thorasic vertebrae burst as they smashed through that 8 inch piece of wood, and then they finally slammed into the pavement and garden fencing 30 feet below my back door. He shattered two other T-level vertebra upon impact, fractured C-1 and C-2, sustained a traumatic brain injury and a compound fracture of one arm, and partially scalped himself.

Rorysaurus walked away with a few minor scratches.

After his fusion, and his 6 week stay in a rehab facility, my brother was sent home. We weren't provided with a nurse, a wheelchair, therapy or a doctor. We had to buy a wheelchair van, and my life became all about paraplegia, lawsuits, therapies, medications, bowel treatments and depression. Rorysaurus began treatment for Post Traumatic Stress Disorder, but a wheelchair is a more visible sign of an injury, and so my brother commanded a much larger share of our attention, energy, time and money. We were told he might never feed himself, and wouldn't sit up, stand or walk ever again, and I had to encourage him to fight to get as well as he could in spite of the grim prognosis.

What passed was easily the worst year of my life. I made new friends in the disability community, and learned important things (like not to say "wheelchair bound"). I gathered knowledge and pushed my naturally-lazy and now-depressed baby brother into working as hard as he could. MediCaid repossessed his wheelchair, refused to cover life-saving medications, and wouldn't provide for important Durable Medical equipment. I was forced to beg and borrow to keep him alive, all the while wondering what happens to people who don't have family, or who don't have tenacious family. One social worker answered bluntly. "They die." I felt myself losing my mind, as I didn't see an end to the constant care, and I couldn't see any chance to get help.

The lawsuit ended, we moved out of California, and my brother now lives independently, with minor household assistance from live-in help. Had the lawsuit not gone the way it had, he'd still be living with me, and I know I'd have lost my mind. I now see my brother a few times a week, when we go to visit or go see a movie with him, or when he has some friends drive him over. He's still battling some pretty severe depression, and doesn't have enough fine-motor control to drive.

However, this was our 2009 Christmas picture:

He's standing, unsupported, holding his 40lb dog. And, when the Oakland fire-department invited him to their big gala, and we couldn't afford to go, my brother practiced, and practiced and practiced to make them a video:

That is as far as he can walk, and, as you can see, he's a little unsteady. He wanted them to see how well he's doing, however, and for them to know he's grateful for everything they did for him, and for my daughter. (Full disclosure: the bike was a gift from the firefighters to my daughter, after they took her and Needlenoggin for a ride on a firetruck, and PJ is her favorite guy on the crew).

Needlenoggin still isn't healed, either physically or mentally. He functions like a 13 or 14 year-old boy, has lost most of his short-term memory, and has horrific anxiety attacks. He can shuffle a few feet without crutches, and needs to use a wheelchair to do anything more than get through a parking-lot, but to a degree, his disability has become far less visible, which makes it hard to deal with things like this:

The other day, I took Needlenoggin grocery shopping, and we took one of the blue reserved spots up front. I hopped out to get one of those little electric shopping carts, and he eased himself out of the passenger seat, a little unsteady on his feet, but upright, and shuffled over to meet me. A middle-aged woman, helping a spry elderly woman out of a sedan a few spaces down, looked at him, over at his placard, and then told him that being fat wasn't a disability. Needlenoggin I and just looked at one another in shock, and cracked up laughing, much to her dismay. When we'd settled, he turned to her and said, "One, neither is being old, and your mom seems to move much better than I ever will. And two, don't make assumptions. If you had taken the spot, we'd have parked that few feet away, and wouldn't have told you how you weren't "crippled enough" to use the space." Then, he summoned up all his dignity, sat down in the little cart, and pulled down the back of his T-shirt, exposing the foot-long, inch-wide fusion scar as he rode away at half-a-mile-an-hour.

So yeah, the young man they told us would have a hard time writing his name now keeps his wheelchair in his garage, only to be used for long excursions. He moves around most of the time on fore-arm crutches, and has more friends than he did before his accident. He won his lawsuit, and I don't have to take care of him for the rest of my life, and we now live in a state where, if he hadn't won the lawsuit, he wouldn't be nearly as abused and mistreated as he was in California. We've pretty much escaped what we were handed two years ago today, and we could just count our blessings, be thankful for the miracles we've had, and never look back.

But we don't. We protest, we write to our Senators, and to the ones who "served" us in California, we write articles and we agitate. We donate time, and what little money we can, to the charities that pick up the slack left by state programs, and we are some of those that continue to demand real universal health coverage. Because we were lucky, we feel compelled to do something to repair the non-existent safety-net for those who aren't so fortunate.

And, for those who will appreciate our family's sense of humor, I share with you his favorite picture of himself:

And the Spinal Fusion Cake I made for him (Note the injuries to multiple vertebra and the burst T1):

X-Posted at DailyKos