Like Tears in Rain

I really resent what’s happened to me.

Yes, I said it. Self-centered of me, huh? Note that I didn’t mention I resent what happened to my wife or my family. I’m deeply resentful of what this whole mess has done to me. I’ve lost opportunities to advance my voiceover career, I timed my exit from an incredible job with great benefits about as poorly as is possible to do because I didn’t know what was coming, and now we’re limping along with terrible insurance that barely lets us keep afloat (still better than the alternative, don’t get me wrong)… it’s all about me!

Of course, that’s not entirely true. Obviously it’s not all about me- it really is about Robin, her injury and her recovery from it. However, if you’re the significant other of someone injured by TBI or some similar catastrophic event like cancer, it’s not OK to be unhappy about it, except in the most vague way. You’re not really allowed to say “This sucks! I hate that this happened to me” because that’s being selfish. I mean, I’m not the one with the injury, right? I’m not suffering through the trauma of dealing with losing 50% of my ability to plan, organize and remember things. How can I possibly be so self-centered as to put my needs and wants ahead of the person suffering?

Except that she isn’t the only one suffering. I’m in terrible pain watching what this has done to my wife. She’s literally not the same person I married. I’m having to meet this new person who is almost, but not quite, like my wife- except that she is my wife. This isn’t what I signed up for. This is not the person I fell in love with! But it’s not OK to say that. Of course, something like 85% of all TBIs that happen to married individuals ultimately result in divorce, and I’ll tell you why: Because in addition to having to deal with the stress and caring for someone fundamentally changed, you’re not allowed to even express that you’re unhappy about it! (Edit: More recent studies show that divorce rates actually are lower for couples where one has had a TBI, so I may be off-base on the 85% thing. I can tell you it doesn’t make marriage easier!)

It took me a long time to come to the realization that yes- it is OK to be angry and I don’t care if people don’t like it- judge me all you want, but pray to whatever god you believe in that you’re never in my shoes. We’re doing a lot better and while I’m still bitterly resentful of what happened, I no longer direct it at the people who don’t deserve it. It’s allowed me a lot of leeway to see the things that really are important. I still love my wife very much- that never changed, and never will. But I’m not going to smile and say it was easy.

I finally realized was that I was making it worse on myself by trying to quash my feelings of resentment and that made my relationship with Robin more strained because I was projecting my resentment at the situation onto her personally. By internalizing all that and just keeping a brave smile on my face all the time, I made things a lot worse until I had the epiphany that yes, I should be allowed to be unhappy about this situation. While it’s true that life isn’t fair, it’s also true that it’s OK to be irked about that. Then you can get it out and move on.

In a sense, recovering from a TBI means going through the standard process of grieving- denial, anger, bargaining, depression, and acceptance.  I was stuck on anger. In some ways I still am- but knowing that makes it easier to manage. Once I realized that my feelings were valid, it got a lot easier.

A Stroke of Terror

“COOOOREEEY!”

That was how it started. My name screamed from the other side of the house. Even now, when I hear that voice screaming my name in my memories my palms get sweaty and I feel nauseous.

My wife was calling me and something was very wrong.

I had just left her alone in the bedroom with our infant daughter Amanda, born a week prior via C-section in March of 2004. It had been a long day and it was time to feed the baby and try to get some rest. I helped her get Amanda situated on the nursing pillow and turned down the lights so they could both get some sleep after. I knew Robin had been having a very bad headache all day long and I hoped the lights being low would also help. I was worried about the headache and how lethargic Robin had been since the birth. It was more than could be accounted for by the C-section recovery, and was markedly worse than the same period after my son was born several years prior.

However, I just chalked it up to being a bit older. We were pushing our luck a little bit, having a second child at Robin’s age when she had diabetes. But we managed her pregnancy well, and she had better blood sugar levels than most non-diabetics. Testing 6 times a day can do that. It wasn’t pleasant but we did what we felt was necessary to make sure both Robin and the baby would be healthy. I was confident we were on the downhill side of the whole affair and we were ectstatic to have had a perfectly healthy baby girl.

But now, something was dreadfully wrong. I hadn’t closed the door on the bedroom more than a minute before. I had made it to the other side of the house- a 1250 square foot rambler with a basement and a little add-on apartment above the garage. I was halfway down the steps to the basement on my way to do something with the laundry when I heard my name being called in pure panic.

Of course, I reacted. I  barreled through the house, knocking our friend B. (who was staying with us for a few days to help out) aside in my haste. My head played horrible visions- Amanda was choking, she was dying, turning blue in Robin’s arms… I’m not sure anyone but a parent can appreciate the horrors you can inflict on yourself when thinking about the things that could happen to your child. To this day both my wife and B. will tell stories of that night, amusedly pointing out that I got more than twice the distance in less than half the time than anyone else in the house in responding to Robin’s cry.

When I opened the door Robin was half on and half off the bed, as though she had attempted to get up but couldn’t (which was in fact the case). Amanda was in her left arm, and her right arm was flailing around, grabbing at whatever was near to try and keep her body from sliding further off the bed. Her right leg was on the floor, bracing her. She had an odd expression on her face- in my panic I thought it was a grimace of effort, trying to keep from falling.

My first thought was that she had slipped and her sutures were giving her problems or had ruptured and she was trying not to make it worse. I thought she was grimacing with the effort of not falling out of the bed while holding the baby.

Of course, that wasn’t the case.

My wife Robin had suffered an ischemic stroke. The grimace on her face was actually the muscles on one side not working right and she was unable to stand because half her body wasn’t responding. She was confused and not being very responsive to my questions- kept saying she could hear a horribly loud ringing sound, but her words were slurred and indistinct.

It only took a few moments to figure out this was something worse than problems with the c-section or (my second thought) a massive collapse in blood sugar levels, which can lead to confusion, disorientation and things like slurring words. We had seen that before.

It was obvious after a moment that something was terribly wrong. I knew in my mind that she was having a stroke, but didn’t say anything out loud. I called 911. The ambulance and fire trucks arrived in fine, light-flashing style and whisked her away to the emergency room.

I knew we were going to have some hard times ahead, but I had no idea what was coming. It took years to realize how much my life changed in that one instant of my name being screamed. My entire world had just been thrown into disarray- and like my wife, I didn’t even know it yet.