Enabling: It’s Disabling

A few weeks ago, some girlfriends and I ventured on a beach getaway. That Saturday, while cooling off from a few hours in the sun, we somehow ended up watching several episodes of a show called My 600 Pound Life. It seemed only natural to munch on the Krispy Kreme doughnuts we had procured the night before. Before we knew it, we had been sucked in to a downward spiral of television watching. Much like watching a car crash, we couldn’t seem to turn away. Or change the channel. 

A common theme prevailed: either the subject of the show was ready to make a change, or she wasn’t. Sure, most people say they want to change (something – it doesn’t have to be a weight thing), but we all know that it’s easy to say or wish or think about change. It’s much harder to actually do it – to make the change happen. 

Frequently, those on the show who weren’t truly ready to change–to adopt a new lifestyle–were surrounded by people who enabled them to stay mired in their habits. To stay stuck in their comfort zone. Many times, the enablers were family members, and they didn’t know any other way. Or they couldn’t stand to see their loved one struggling. So, of course, it makes sense to bring McDonalds to someone who is grossly overweight and bedridden. 

This is an extreme example, sure. But in my experience, it’s not all that far fetched to say the same type of enabling occurs in other ways. And again, it all stems from the family member or friend not just wanting to help but to avoid the inevitable–the frustration, the heartache, the difficulty–of change.

The first post I wrote when I started this blog was called “Let Me Finish!”. At the time, I spoke in very halting sentences and often took a very long time to finish my thoughts. People would frequently want to help me out by finishing my sentences. But what they didn’t realize was that they weren’t helping me at all. They meant well, of course. But they were actually hindering my recovery, because the only way I was going to become faster and more fluent was just doing it myself–no matter how long it took. 

Additionally, when I first began using my phone and computer again, I frequently misspelled words or else completely left them out. My aphasia made it very difficult for me to string words together in a way that made sense, even though in my head, I knew exactly what I wanted to say. I have heard this example many times throughout my recovery, but having aphasia is akin to have all your words–your “files”–overturned and jumbled around in your brain. 

Now, mind you, I have always been an avid reader and writer at heart. I typically was also quite compulsive about correct spelling and grammar. Obviously, suddenly not being able to make sense with written or typed words drove me crazy. I immediately began to ask Paul to review and correct all my texts and posts. He indulged me at first but soon wised up after our first meeting at TAP. He then agreed to read my work but refused to correct anything that was wrong.

Not surprisingly, this development was hard to take. I would stare for what felt like hours at whatever I had written, trying to figure out if it was sensical and correct. And yet, it was exactly what I needed. By using Paul as my editor and lifeline, I was never going to learn how to recognize what needed to be corrected. By refusing to enable me, Paul actually helped me quickly recover my propensity for writing and honed my eye in order to carefully QC my own work, something I still have to do today.

Another way in which Paul stopped enabling me was refusing to order food for me in public. It seems very basic, but that was so key in my recovery. I live in downtown Durham, which means I am within biking distance to some of the tastiest food the state (dare I say, the entire South) has to offer. Not being comfortable speaking in public, even if it was only to order my egg and cheese bagel from Monuts, was disheartening. 

To be honest, when you have a language impairment, talking in public is really intimidating. Now, of course, I have made so much progress that I don’t hesitate. But at the time, it was scary as hell. I really just preferred to hide in the corner and have Paul speak for me. But, obviously this didn’t correlate well to my goal of getting better. In order to get better and more comfortable speaking in public, I sort of had to…speak in public. Plus, Paul started to refuse to speak for me. So that was that.

I suspect sometimes that people with similar impairments seek the easy way out, at least initially like I did, because (surprise) change is hard–more than that, change is painful.

You can’t go from 0 to 60 the first time out. Sometimes, all you can do is to take a walk down to the mailbox and go back inside. Then the next day, maybe you take a few more steps. But the point is, you still have to take those first few steps. No one else can do it for you. You can’t write a book without first writing a basic sentence. 

But, one thing I have learned for sure over the past year is that it is never too late to make a change. No matter what that change is. Improvement is always possible, though it may not come as quickly as we’d like.

Change starts with learning how to advocate for yourself and how to recognize the best avenue to improvement, even if it’s difficult. Change starts with taking that walk or re-learning how to order that bagel sandwich. Or by sending a simple text. Change starts by taking ownership of your goals and recognizing your weaknesses. 

Now I’m off to order my own beer, thanks.

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An(other) Inconvenient Truth

Death, much like sex, is still a taboo topic of conversation.

Oh sure, we like to watch it. Just turn on the TV. Heck, I have turned watching Forensic Files into a nightly bedtime ritual. Or maybe you ate dinner last night, half listening to a news story about another bomb in Gaza. Absentmindedly chewing your chicken, thinking about your weekend plans while the news anchor drones on about another school shooting or chemical weapons in Syria.

Yes, we are surrounded by death every day, but most of the time, we remain insulated from the reality of actually experiencing it close to home, save for the kinds of deaths that occur with the passage of time and in their rightful order: the loss of a grandparent; a beloved pet; an elderly relative. No, these kinds of losses are not easy, but we accept that they are bound to happen eventually–one of the natural consequences of time.

Yet, why is it that we never talk about or seem to accept the fact that our own death is a natural part of living? It’s sort of like pretending that abstinence is the only appropriate lifestyle to teach our children in school. As a large number of teenage moms can probably tell you, there has to be a better way to address these sometimes uncomfortable topics.

I’m not saying that the next time you’re out with friends, you should have a will signing party. I’m just saying that it’s time to stop avoiding what is, in fact, a very unavoidable part of life.

I mean really, we have books like, “Everyone Poops.”

I guess the sequel, “Everyone Dies,” probably wouldn’t fly off the shelves, huh?

If I have learned anything over the past two years–first from my father’s sudden and unexpected death to what could have been my own–it’s that yes, death in and of itself just plain sucks. Of course it sucks. But it flat out sucks even worse when you have no idea what you want–both for yourself and for people whom you love dearly.

On October 13, 2012, I had to make the most difficult decision of my life–the decision not to resuscitate my dad should the need arise. He had been in the hospital for just over two weeks, and the latest CT scan showed an additional bleed in his brain. A very kind doctor sat me down, showed me the scan, and talked to me honestly about my dad’s prospect for recovery.

I then had to ask myself what kind of life my dad would want for himself should he ever regain consciousness. My dad was my buddy; I knew him very well, and I was certain that he would not wish for the type of life he would experience should he wake up. Making that decision–though it was the right one–was the single most terrible moment of my life.

And you see, my dad never talked about what he wanted for himself. He never said, “If I should have a terrible stroke and lose all prospects for recovery, please let me go.” Instead, I had to place my faith in how well I knew him. But, would I have breathed a little easier if we had talked about it? If he had made his wishes clear? I would like to think so. Somehow, just knowing that you are carrying through with someone’s clearly stated wishes, provides more of a sense of purpose.

As for myself, Paul and I signed our new wills and health care power of attorney the day before my last surgery. While we both knew the risks associated with my cranioplasty were much lower than my initial craniotomy after the accident, we also didn’t want to take any chances. I was very clear in what I wanted for myself.

Yesterday, I took the day off work and drove down to the radio station and tower building to do some cleaning up. That way, Paul and I could still have the weekend at home.

When I pull up to the station, I always feel a little tug.

dadstation

The yard is sparse and weedy. Clearly, it is untended, as my dad was its sole caretaker. Inside, dust and debris seems to collect even though no one really walks through the door much anymore. I had packed a lunch, and as I ate my peanut and jelly and applesauce (because apparently I’m 12) in the half empty lobby, I thought about how much work death really is.

First, it is mental work, because the grieving process is ever present and evolving. And if that wasn’t enough to deal with, it socks you in the gut again with all the “arrangements” and “business matters.” If you thought running a radio station was complicated, imagine trying to clean up after 40 plus years of memories and a lifetime dedicated to work.

One of the other most important things I have learned in this process–this process of learning about life and death–is that your stuff doesn’t go with you.

I know, it seems obvious, doesn’t it? But how many of you are holding on to boxes of junk you can’t bear to throw out but haven’t opened in weeks, months or years?

Yesterday, I found a box full of my childhood school papers. I had to stop myself from getting nostalgic. While I immediately wanted to go through every single thing, I took a step back and reminded myself that these things have been stuffed away in this box for a couple of decades, and life has gone on.

I’m not saying that certain mementos aren’t special. I’m just saying that just know–holding on to every single thing that holds some sort of meaning or perceived significance is fairly pointless. You make memories with people that you love  and via experiences – not things. When I am 80, if I am lucky enough to live that long, I doubt I will feel cheated that I threw away my high school yearbooks.

At home, I have slowly begun to shed the things I don’t regularly use. The process is freeing.

My perspective has gradually but definitely been changing. Perhaps this is just growing up? Regardless, the point is that by accepting the inevitable in life–which is scary, yes–you truly allow yourself to begin appreciating what you do have. What’s really important.

And by being clear in what you want for yourself, you just might save those who love you some heartache.