Drifting Into the Meltdown Lane - Life After Brain Injury

You can only go so long on adrenaline and caffeine, you know.

Last night, on the Expressway heading out of Boston, I drifted into the Meltdown Lane.

“I hate being disabled,” I said to Sarah, my eyes giving serious thought to overflowing with tears.

“I hate it, I hate it, I HATE IT!”

In that moment, I was more exhausted than I’ve ever been in my life. Exhaustion and brain injury are a very uncomfortable combination.

Exhaustion works like Miracle-Gro on my injury. The ever-present brain fog gets thick, the processing slowdown is unmissable, but perhaps the most uncomfortable part of it is the stunningly uncomfortable cranial pressure. For those lucky enough to be unfamiliar with cranial pressure, it feels like someone is overfilling a balloon in your skull. They just keep blowing up the balloon, even thought there is no more room.

And the pressure builds, and builds, and builds… with no place to go. Yes, it’s as horrible as it sounds. You can’t rip your own head off, though I’ve thought about it.

To call life a bit challenging of late would be akin to calling the Titanic a rowboat.

Over the last couple of weeks, I watched a cherished friend slip from this life. There were countless phone calls, trips to Boston hospitals, and eventually hospice. Sarah and I said our goodbye’s on Saturday. At 2:00 AM Sunday, he passed from this life. I am still in shock that he’s gone.

While has was passing, unknown to us at the time, a beloved family member was also struggling for his life. As he holds privacy in high regard, I will honor is wishes. Taken by ambulance to a regional hospital, he stopped breathing a couple of times, and had it not been for an intervention in the form of CPR, he would have passed away Sunday as well. Now stable in a Boston hospital, he has been the sole focus of our lives. I wouldn’t have it any other way.

But the one-two punch has come with a very high price. Like an acceptance hangover, I’m still feeling it today. Most times, I try to bury the fact that I am disabled.

 I struggle just saying the words, “I am disabled.”

The weight of not being able to function as I once did is heavy today. The frustration at not being able to move through life with as much grace and ease as I once did brings great sadness.

Any human being would be exhausted at this point. Living with an invisible disability just complicates things.

I’ve been an outspoken disability advocate for many, many years. It was not part of my life’s plan, but no one has a life that goes as planned. I would tell someone in my shoes to take it easy – but sometimes life rapid-fires things at you at a pace that does not allow rest.

Why even share this?

Good question. I am very open about sharing life’s victories. That’s quite easy. But sharing the times when the road gets tough? No so easy. But I would be offering a disservice to not pay homage to the fact that more often than I share, I struggle.

Today I despise being disabled. Some days I accept it with ease, and on the best of days, I never give it a second thought.

I really miss how things used to be.

And I pray that I have the strength to continue to do what’s needed.

~D