Midnight Rider by Brenda Tucker

Midnight Rider
by Brenda Tucker

It's 3AM and the rest of the world is either in bed or out partying. But here I sit laying words to paper. Why am I not asleep? Even my cats and Gary's dog are curled up together cutting zzz's and Gary, my hero is sprawled across the couch, snoring, making sounds like a small freight train.

Life changes after you "retire" on disability! Where once I dragged my unwilling body out of bed every morning to walk into an office smiling and chipper at 8AM, now I'm up at 3AM in front of a computer, eating a bowl of cereal and surfing the net. The thing that gives me that warm fuzzy feeling is that several PLWP friends are on as well. The Internet highway is not lonely. Not sleeping or sleeping at weird hours, is definitely a parkie thing.

I now believe I understand this dilemma, but I didn't come by it easily. My hero's nose for a long time would get bent out of joint when he caught me up at 3AM. Feeling guilty at first, I would sheepishly tuck my tail between my legs, like my dog Katie does when she occasionally leaves me a present on the kitchen floor, and follow him back to bed. I lie there miserable until a "decent" hour for me to get up. That attitude lasted a couple of months. Then we went to the confrontation stage...who the hell was he to tell me what to do!?!?!? So for a while, a few months actually, we were "at sorts" just about every night. Routinely, he'd climb out of bed around 2AM and peek around the door of the study. Not saying a word, I usually glared at him, threatening him with "that look," as he calls it, until he went back to bed. Now be assured, come time for my first cup of coffee I would hear about my late hours and how I knew I was wrong and he was right! Does any of this sound familiar? Then one night, out of the blue, this warm and understanding face peeked around the door. Without him saying a word, I knew he was over it. He smiled and said goodnight...and that was the end of our middle of the night disgruntlement.

I didn't know if he just gave up or if something inside of him understood. So finally I asked him. He simply said, you can't sleep when you're hurting and you don't want to sleep when you're feelin' good. Talk about hitting the nail on the head! My retired First Sergeant has this way of short but sweet, to the point answers to the world's problems. (Actually, it ticks me off! LOL)

Understanding in the case of the Midnight Rider, came from living it. I reckon all those nights that he came to the door at 2AM, he was pondering and trying to understand what I was doing and why. We argued about it because nothing ever comes easy! True to form, my life's education came from living the good and the bad. Making the wrong choices or defiantly making the right choices just to objectively stand back and watch each scenario play itself out. I guarantee you; lessons learned this way are not forgotten. Ain't it too bad we never listen to people who've already "been there"! So much wasted time!

So the Midnight Rider here, stills rides the net in the wee hours of the morning. I guarantee you if you catch me there, I'll either be complaining of hurtin like hell or feeling so good you can't stand being around me! Hate it when he's right. END

Well, isn't that a nice cozy little picture. "The writer sits up and pulls her hands away from the keyboard and smiles to herself....'job well done'!" Then words came to me in a flash that I just couldn't ignore...(forgive the crassness)...BULL SHIT! You know there's more to it than that. Where's your guts girl? Then the realization of what I had been doing for several years enveloped me. I've never let myself think about me...that's why doing that stupid questionnaire for Social Security a couple of weeks ago threw me into a funk. Depression BIG TIME! I have to admit I go to great extremes not to think about me. To give you an example I'll tell you about a little push button game called Yahtzee! He's my buddy! In order to keep my mind busy all the time, Yahtzee takes a bath with me when I feel like a good soak but don't want my mind to wander. And, well, uh, er...you know those morning constitutionals (psst in the bathroom!) Well, Yahtzee sits on the throne with me. Just cannot allow myself to think.

Anyway, after sleeping on it, from 7AM till noon, and walking around talking to myself and to God, I sat down to do a rewrite. But decided that this revelation was part of the story. How often do we go beneath the surface, to the depth that it takes to get to the core of problems? So now, this writer is getting her BB's (and if you have to ask what BB's are, you don't need to know) out of the bottom drawer and delving into this issue of sleepless nights...The Midnight Rider!

Let's brainstorm here...make a list of what I think are causes and then we'll discuss them.

Guilt
Fear
Anger
PD in general
Our meds

Whoa, that's enough! Any deeper than that and I'll need an anesthesia!! LOL

OK, let's start with guilt. You may think that's a strange one to list, let alone think of it first. As a matter of fact, the order that these issues came to mind is rather scary in and of itself. Let's start with guilt. Guilt for being less of a contributing family member and more of a burden. Wow, that's a big one. Learning to accept that and live with it is enough to keep us awake for days. But there's more to the guilt. I'm in my haven when I'm with my fellow parkies. But there's guilt there! Now let me tell you this was a revelation I could do without. There's guilt there when I'm with someone who has symptoms much worse than mine. Especially if they are younger and have been diagnosed for a much lesser time than I have. Now let me tell you my friends, that is a horrible and truly upsetting discovery. And I'll tell you why it was. Not only the obvious reasons but also one that I'm not proud of at all. If a person, place or thing makes me feel guilty my common reaction is to avoid that person, place or thing. So personally, guilt is an extremely difficult issue for me mainly because most of the people I love more than myself fall into that category. That sure explains it being number one on my list. If I lie down without being totally exhausted and on the verge of collapsing, I'll think about these guilt feelings and may react inappropriately. How many times have you gone to bed just to get back up and go to your computer, written an email or made a phone call that to this day you regret? Could you contribute any of them to feeling guilty? Guilt changes my personality, creating someone I really don't know nor like.

Fe6ar is next. I would have thought this one would have been first. Well anyway, fear of the unknown and the known. Fear that we're going to waste time by sleeping! Fear that we'll wake up hurting like hell! Fear that we'll wake up frozen. Fear of looking in a mirror and not recognizing the person looking back! We could go on and on here, but there's nothing earth shattering about fear. We all know Mr. Fear.... which doesn't mean we allow him in. He never asks permission.

Then there's anger! Big, big issue…anger at who or what? Well let's see, calls for another list. I'm angry at: PD, healthy people, drug bottles with safety caps, child-safe cigarette lighters, our government, pharmaceutical companies, and, let's not forget my anger with God. The only issue here that I feel that I should go into a little detail with is my anger with God. The others are pretty well self-explanatory.

My anger with God is a difficult one to explain. Mainly because this is the first time I've written it down. I'm not angry because I feel he gave me PD, because I don't feel that way. I think my anger comes from knowing He can help my friends by curing them and He doesn't. I get angry when I catch my hero wiping his eyes when he thinks I don't notice. God could heal that hurt in him for me. I get angry too, when (this is a biggy) He tells me to do something and it 's like climbing Mt. Everest. Everything is so difficult to do. I joke that He forgets that I have PD. There are probably more explanations, but I choose not to go there now. One level at a time my friends. Again, if I go to bed and am not totally exhausted, this anger builds up inside of me and when it explodes, it's not a pretty sight!

The next two issues have less to do with my mind and more to do with my body. Many nights the rigidity is so painful I can't lie down. I have to be moving because if I stiffen up it's painful loosening up again. And I don't know anyone who enjoys pain. And, because the meds cause hallucinations and nightmares, sometimes I wake up from a nightmare and can't go back to sleep or wake up flexing my muscles because of the nightmare causing severe muscle cramps. Here's where my hero's understanding comes in to play. The pain and the lack of pain are both reasons to not want to go to bed

Well, that just about takes care of the issues for the Midnight Rider. The bottom line is just controlling my mind and not allowing it to linger on negative issues. I can keep my mind busy through the day but when I go to bed, if I don't go to sleep right away, I think about me and about these issues and I soon lose control. We lose control over most of our body to the extent of degradation; I totally and adamantly refuse to give up control of my mind. If it means losing sleep, by george I'll lose sleep.

Well, my friends, this has been an adventure. I hope some of you can identify with this gathering of words on paper and that it may help you in some way. You're not alone in this battle of will. Just remember, a shared sorrow is half the sorrow and a shared joy is twice the joy. Now the writer pushes back from the keyboard. Box of Kleenexes almost gone, empty pop cans fill the trash and neck muscles aching from the stress of doing this right. Strangely enough, I felt a smile on my face. Sub-consciously I put the BB's back in the drawer for another day. I had faced the enemy and stood my ground. Neither winner nor loser here, merely an understanding of myself that will make life a little easier.