So here I am, a few years post-taper and coming out of a more recent recovery from concussion-induced TBI. Though let me qualify that, and please note that this is conjecture: Both my neurologist and I do believe that, at the very least, a background that includes harm from a benzodiazepine creates lasting neurological vulnerability. In other words, it just makes things worse if the brain receives a follow-up assault of some sort — e.g., a concussion, extreme stress, or the reintroduction of a benzodiazepine. Thank heavens no doctor ever suggested that I take a benzo post-concussion; but trust me, the prescribing of benzodiazepines for post-concussion anxiety continues. I see this on the TBI/post-concussion boards regularly. Yes, many doctors still prescribe a drug that causes brain damage to help people with brain damage. The irony is painful.
To those who worry about long-term damage from a benzodiazepine, I want to state upfront than I am now feeling pretty great. So I am one more story of post-benzo success, and it is probably not surprising that I am trying to enjoy life as much as possible, even trying to make up for the lost times. For too much of my daughter’s childhood, I heard the annual lament: Why can’t we go on vacation? When will you be better? And specifically, when can we go back to our island? Our island is a place where I made extensive visits, even lived, off an on through the 90’s until it just became too busy, too branded, and too expensive. We continued to visit for shorter periods. Despite the island’s frenzy of overbuilding and reaching for an over-the-top face of jet-set glitter, I could always find corners that were sublime and connect with old friends. It was my paradise, and I could not imagine living without it. But a benzodiazepine has a way of playing with the imagination, doesn’t it? It’s a cruel game. Forget about life as you know it. Let’s take your imagination to places you never conceived existed, let’s watch you suffer beyond measure, let’s escort you to the depths of hell, the benzo taunts.
Vacation? Travel for enjoyment? No way. Even if I could have afforded it (those finances sure do take a hit), I could not have made the trip. What was the sense? It was such hard work, just being. Any thoughts of pleasure were relegated to elusive knowledge that I used to actually feel life and enjoy it, thoughts now stored in some remote region of my disintegrating memory bank. My anhedonia was ever-present. My emotions were ideas of emotions. Nothing felt. So strange.
And there was that other “a” word: Akathisia, that horrific feeling that you are about to jump out of your skin, that there exists in you some sort of phantom tormenting force. It pushed and paralyzed me simultaneously. It cannot justly be described as an uncomfortable feeling. Discomfort is tolerable. No, akathisia is a beastly torture within. Even the knowledge that it is physiological and will end is cold comfort. Akathisia is agony. I’ll say it again. Agony. Life lived behind one of hell’s gates.
Let’s move on to “a” word number three: Aphasia — a totally frustrating inability to communicate as desired. I recall a colleague posting her exasperation after speaking with me on the phone in a career-damaging Facebook post. Should I have said: Accept me, please. My thoughts are sound. I just cannot form words or sentences properly right now. You see, I am tapering off a misprescribed medication. You understand, right? Ha! I think not. I stuttered and stumbled though conversations. It was soul-crushing. How lovely if a vacation getaway could solve that little problem while I was tapering. But that was not possible. The thought of negotiating friendly, simple vacation banter was beyond me. Aphasia, I’ll be succinct. Fuck you. And fuck you twice because I am still dealing with you.
Should I mention one more “a” word? Why not? Adrenals. Wrecked adrenals as part of benzo-induced HPA Axis Dysfunction. Oh, benzo-damaged adrenals, how didst thou affect my ability to function? How may I count the ways? I’ll mention a couple of my favorites. How about those round-the-clock inner tremors and those extended, hammering cortisol surges? Part and parcel of your fiendish game.
When I finally figured out a method of navigating around Benzo Buddies during the toughest months of my taper, I liked to find posts and threads written by fellow taperers who dared to do amazingly brave things like go camping, or to Disney World, or to a family reunion, that sort of thing. I found it hard to believe that these buddies made it through their travel adventures, but they did. Some were further along in their healing, but others white-knuckled it during a tough taper, and I recall one cold-turkey victim managing a visit to relatives. I can’t say that I sensed much enjoyment experienced, but they survived. All shared a sense of hard-won accomplishment. They gave me hope when I doubted. They gave me pictures of something I could dream about. We need our hopes and dreams. How they sustain us when it seems as though all is lost.
Now that I am feeling like myself again, my daughter recently pushed for a return to our island. When my tax refund came, I thought, why not? It is time. So here we are, and here I am, still celebrating every day, despite our messed up world, thanking God, the universe, whomever, whatever, for allowing me to find my way back to a version of me again — definitely older, with a few extra pounds, and perhaps a little bit wiser. You know, I often have that wonderful “take-life-for-granted” feeling these days. But I don’t. I am vigilant, and my sense of gratitude runs too deep.
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