The Things You Don't Tell People

I'm settling with the idea that this blog has become a tell-all for the chronically ill. Thanks to those of you who have messaged me with encouraging words and similar stories. It helps to know we are not alone. I think sometimes the things I share may be too personal, and this post especially so.

In the spirit of continuing to share the gory details, I want to talk about the side-effects of medications. I can't speak for anyone else, but it is without question the single most frustrating and isolating thing about being chronically ill. Unless you've been on the long ride through medication overload, this post will seem like a series of excuses, complaints, whining, and over-exaggeration. People say to me all the time, "Oh, I forget things too - that's just because you're getting older/busier/more relaxed."

Can I just say this is tantamount to telling a chemo patient that sometimes your stomach hurts too? Just because the side-effect is invisible doesn't make it any less a medical struggle than the visible ones. You may think we're mulling over nothing, but we know. In our heads, we know there is a disorganization and loss of ability to concentrate that didn't exist last year, last month, last week. We can tell it's getting worse. And it's not because we're too busy, or don't care. It's because we're drugged.

The fact is, that beta-blockers and two other drugs I (and most heart patients) take cause short term-memory loss, fatigue, and somnolence (a near-sleep state). Add to that the fluid retention and consequent diuretics (both of them) which can leave you alternately bloated and brain-fuzzy, or dehydrated and twitchy several times in the same day, and you've got a real cocktail for memory loss. If a medication makes someone vomit or pass out, no one would dare say to them, "Yeah, sometimes I throw up and get light-headed too." They are having an obvious and abnormal reaction to medication. But drugs that cause forgetfulness and loss of focus are more subtle. People try to commiserate because "I sometimes forget my keys too." It simply waves away the struggle that the medicated person has while they fight desperately to hold on to coherent thoughts, as well as fight the constant dread that they've forgotten something horribly important and will pay the consequences for it later.

I got lost three times this week driving to a friend's house that I've been to at least two dozen times in the last year. I'll spare you other examples, but it's scary to know that a 12 minute trip just took you 35 because you can't remember where to turn. Maybe normal people do that, but I got lost almost everywhere I went this week. My GPS is on the fritz and just the trip to pick Christie up from work at the Med Center (where I've been a hundred times) was so mentally draining I was sick to my stomach afterwards.

The isolation happens like this: (topropl dependents are already nodding their heads)

1. You forget things. All the time. Typically important things. Yet your head is filled with nonsense minutiae about every stupid TV show you've ever seen, or sports stats, or in my case, music history. Yet, I can't remember an important financial conversation with my wife yesterday. I can regale you with the specs of Chris Squire's bass rigs throughout the 30 year history of Yes' career, but I'm hard pressed to remember your response to an urgent question I e-mailed you 20 minutes ago. This is short-term memory loss. And the harder I to try to pound something into my head, the more likely it seems to slip out.

2. The people around you are at first sympathetic, then grudgingly accepting of your forgetfulness. But that soon turns to mild frustration and what I call "hand-holding." Over time, peers begin to treat you as a ward, or a child that needs to be reminded to bring his wallet, his keys, of what time things are taking place, of what you should bring...and you don't notice any of this at first. In fact, you are grateful because you need reminding. Even though you wrote it down, made a list, and looked at your calender just this morning, by the time you finished making breakfast, the whole thing is just gone, removed from your head. It's especially troubling when your own children have to take on this roll - retrieving forgotten pill bottles, running interference so you don't lock yourselves out of the house, constantly reminding you of the day's events and times. The roles become reversed. Friends who can gently help you along without viewing you as less an adult are valued more highly than gold.

3. People's perception of you begins to change. No matter how organized, on-the-ball, and sharp you used to be, you now seem flaky, behind-the-curve, always playing catch-up. This is honestly the absolute worst part. It sends the inadvertent, and untrue message that you simply don't care. That the conversation, or email, or event just wasn't important enough to hold your attention or to be remembered. That message is further driven home when you demonstrate the ability to remember insignificant details about other, less important things. But you can't pick and choose what is remembered and what is forgotten. The beta blockers do that for you. Every great once in awhile I forget the title of the 7th track on Rush's Presto album. But I'm more likely to forget my own birthday, directions, times, and conversations. See? It sounds like an excuse bank for being late and irresponsible.

I used to be the opposite of all that. People who didn't know me previous to my illness will never believe it, so far to the other side of the spectrum have I slid. My mind has betrayed me. Moments of clarity are cherished as I try in vain to figure out how to replicate whatever it is that caused it. But it's random. The next moment my mind is so tired that I can't remember what I was trying to figure out. I use the Luminosity website religiously in hopes it will keep an edge on on cognitive skills and attention span, but statistically, I'm only marginally ahead of people ten years older than me.

Random really does become the lifestyle. Do I show up on time? Randomly. Will I remember that we agreed to meet/discuss/cancel/postpone/bring xyx? Randomly. Will I remember the email or text that I read 4 times in desperation to burn it into my brain? Randomly.

I try to be at peace with this but there is simply no way to be at peace with standing people up, forgetting important information about your family and friends, or at peace with a growing reputation for instability, flighty-ness, and in-attention. I feel stupid and slow and most of all isolated. Because it is the prime invisible factor of my heart disease that is summarily dismissed as being normal or an excuse for personality defects. It is exhausting to find new words to excuse the same behavior. And others tire of hearing it, like I used to tire of the excuses of the addicts and alcoholics that crossed through my life during my ministry years. I want to change, but it's beyond any amount of willpower or resolve. The ability to do better disappears as surely and frequently as the pills down my throat every morning. I am not me anymore - I am buried under this fog of numb half-awareness, trying to get it together. I know what's happening in my mind, but I don't have the energy to continually express it to others.

Several transplant friends have warned me of this. I didn't believe them until about a year ago. I thought my life had become too busy. But my meds had increased, and they have increased again a year later. They told me to prepare for skepticism, exasperation, and much eye-rolling over forgotten appointments, mixed up calendars, lost valuables, and confusion. It is subtle and slow, but pushes you into yourself and you begin to see yourself as others do - a space cadet, unable to manage his own schedule and commitments. Part of the solution is to stop making commitments, a whole separate issue which I'll address in my next post.

There was something else I wanted to say here, but I forget.