Note: My goal for this blog is not to share often about my struggles with Epilepsy. However, it's important that I infuse some of my story into it at times in a effort to bring much needed awareness to Epilepsy and Seizure Disorders. And the need to find a cure. This blog entry is a cross post of my Project Rewire entry. All of the photos I've shared were taken in Hamlet.
From our brains, meaning our neuro wiring, as I tend to call it; throughout our bodies, to our business and personal lives, to our techy devices, so much in life comes down to connections. There is such a gamut of definitions for the word. But, as real people with real lives living in this new world of social networking totally driven by our connections, relationships, and hi tech stuff, they should be something most of us can find some common ground in our understanding of the multiple meanings and uses. As a dot connector from way back when, I see connections in practically everything.
Visual sights such as power lines strung over a network of towers placed in sequence resembling gigantic angels, toy soldiers, and robots are mesmerizing to me. Not only do the structures themselves amaze me, but the fact that their network of connectedness delivers electricity into our daily lives. I'm not only drawn to, but enjoy photographing the towering figures as I shared back on April 8, 2009 in a blog entry, entitled Angel Power. Just about every piece of that blog entry, I still believe, with the exception of the mention of a group in the first paragraph.
So, a side track update is now required, in case you click in...
Last year I was of a peace at all costs mindset. I'd had had it with strife and conflict brought to me by others, regardless of the avenue. Although life is most certainly a blessing, and God is in control, we are human beings trying to live together in harmony on this planet. It can be difficult to stay upbeat, positive and joyful, even when we have no problem whatsoever in counting our joys. It's a sign of the times that our challenges these days aren't getting any easier. There are things we can change and things that we literally have no control over. In an effort to be more focused on the positives in my life, I made choices to eliminate some things, activities, and even a few people that crossed my path(s) last year. So much in life also comes down to our choices. Why choose to rub shoulders with people who bring you down? Or, who are on individual power trips in a volunteer group, which undermine any chance of friendly cohesive teamwork?
Well, due to that very chosen mindset, my hubby and I decided to separate ourselves from that group. Without going any deeper into the specifics and details relating all of our reasons "why", bottom line there was too much conflict and too too many "us against them" type of attitudes. Since we were new to the group and not a part of either side of those "us" or "them" folks. Nor, could we tell them apart, it was better for us to part ways. Needless to say, it took the joy out what could have become a super fun hobby for us. And work we would have happily given to the group. Instead, it became a shake the dust off our feet experience. It's not a decision we look back upon and regret one iota. Connections were made, perhaps too fast, quickly became no fun at all and, sadly, not worth our time. Perhaps that sounds snobby, but not really. Time is truly precious, and since my condition unfortunately does play a role in everything we do, we try to make what we do worthwhile for ourselves. As well as benefit others when it comes to our outside "volunteer" commitments. We also had no vested reason to hang in to see if things would ever change. We gave it several months. It worsened. So, why bother? It wasn't a lesson that needed to be learned. But, more or less, a reminder to be cautious of connections that are over laden with valleys in the midst of an appealing interest peak and a desire to be a part of something worthwhile.
Now, back on topic and on to another twist regarding connections. Although I have it in my genes to love trains, and consider myself a railfan, another reason they captivate me is that they are very much an image in my mind of what connections, signals and networking is all about. Metaphorically, I can go all over the place about connections, signals and networking, but for the purposes of this entry, I'm tying the train connection to me, of course. My brain; my life living with "E".
I see the misfires in my left mid-temporal lobe as malfunctioning switches which takes my signals (neurotransmitters) off track from their original destination. I see the long six week seizure event I experienced beginning the end of December, 2005 through the second week of February, 2006 as a major derailment. One that created a domino effect giving ground to cluster seizures, that to this day, I've not recovered from. That I also believe set the stage for the non-stop 24/7 neuro sensations and pressure I feel in my head and then, random neuropathic driven sensations throughout my body. In essense, my signals are still screwed up. Even though I'm coping better, and God and Project Rewire have helped my speech and writing to improve, my quality of life is still no where near, I'd like it to be. Admittedly, I desperately want the uncomfortable sensations to subside. And I so very much want some of my freedoms returned to me. So, life will be easier on my husband, and easier for me. I'd say normal, but I've learned normal is not a state of being. Even though each of us has a different "normal" and many of us desire a better normal, we learn to cope and appreciate with what we have.
Normal is a fluid thing, and can change in the blink of an eye. The you you know is here one moment, and poof, that you can become history. To look at me, you probably can't see it, but much of the old me isn't there. The "E" still has its grip on it and another me has emerged. A me, I'm reluctantly trying to learn to live with. I'm asked often "how do you feel? You look healthy!" when we encounter folks that know a little about how things changed for my husband and I. For which I often reply, "Thank you, I'm better, but the 24/7 neuro sensations are still very much there." For which the next question usually is, "So, when are you going back to your doctor?"
I typically reply with some version of the following... "As an atypical case with hypersensitive and idiosyncratic reactions to medications I can't face becoming a guinea pig on a merry-go-around again right now. All of the diagnostics I was put through didn't get me anywhere. Inpatient or outpatient. I failed five medications, which means they either made things worse, or my body couldn't handle the side effects. I gave the medical profession three years of my life to get me somewhere, and got nowhere. I invested two years at Wake Forest Baptist Comprehensive Epilepsy Center, which made too many mistakes for me to continue with them. If the Lord puts the right Epileptologist across my path. One willing to look at me with fresh eyes and have experience with those whose bodies react uniquely to medications. I'll try again."
That's a mouthful isn't it? You may wonder why I share all of that... Well, to be brutally honest, I'm not looking for empathy, pity, nor attention. In fact, I detest talking about, and even blogging about it. But, they are both ways to help cause awareness by adding my face to those living in the United States (and elsewhere) with Epilepsy and Seizure disorders. The only way I know to do it is to share information about myself and how Epilepsy has impacted my life when someone asks how I am and is sincere about it. Otherwise, the asker is likely to get the vanilla "I'm fine", robotic response we all give.
So, how do I cope with my day-to-day existence? Because most days it doesn't feel like really living. Through my connections. The connections I have with my husband, my family, my rescue animal kids, my personal interests and friendships. Each moment my mind is focused elsewhere involving one or a combination of those connections, is a moment of welcomed distraction. Whether that means sitting at the Hamlet Historic Depot & Museum watching trains. Or, taking a walk down Main Street in Hamlet. Or, running errands with my husband around Rockingham, or in Raleigh, or Charlotte, for the day. Or, looking through a camera view finder for a unique view of something that speaks differently to me, than it may to you. Or, doing some hands on with my volunteer interests. Or, being the center of attention for some snuggly rescue Springers. Those are some of the moments I live for these days.
And those are the moments that get me through to the next...
One of which has been on my mind quite a bit the last few days. As it has been the past month or so, since there's been a very recent major cleanup by CSX around the Hamlet Historic Depot & Museum and Hamlet Crossing.
Last fall, my husband and I were watching trains there, which is known for the diamond where the North & South tracks intersect with the East & West tracks in Hamlet, NC. The Hamlet Historic Depot & Museum also faces this area. It had become such an eyesore, which was making me sad. I'd even hit a place where I was reluctant to take photos once everything began turning brown. No matter how much I tried, I couldn't find the beauty in the imperfections when I looked across the area. Aside from the trains, of course.
Finding beauty in the imperfections is something I'm always trying to find an example of whenever I take photos around Hamlet. Well, this particular day, I decided to stand at the diamond and shoot photos of the area while a train was heading west. Using the railcars as a frame, I snapped photos of the tracks heading north into the CSX yard and the beautiful sky in between the railcars. Here are just a few of those shots.
The images above reflect positive connections, in my humble opinion. The ones we need to keep us on track, together and strong. A steady track to follow, like iron rails. Ties that bind us together, like railcars attached to each other. All that the Lord gives us, such as the blue sky mingled with clouds framed uniquely by our lives and the way we view things. Signals, to guide us. And for support, sturdy ground to build our lives upon.
Lastly, we all need someone bigger than us to guide us. As a christian, that's the Lord and is reflected upon the cross. The old poles in the photo below, always remind me of the cross Jesus gave his life for us on. Then, there are times life throws us a curve ball and we find ourselves needing someone to help pull us along the tracks of life when we can no longer take to or go travel by ourselves. For me, that's my husband. He's the second engine. It's a tough job at times because he has a life, too. Fortunately, his driving force, is the Lord, too. The lead engine...
As I shared in the note at the beginning of this entry, normally, I don't cross post between Project Rewire and All Aboard Hamlet, but for the next few posts, I will be. Saturday, March 26th is Purple Day to support Epilepsy worldwide. I believe it's important that we start in our own backyards, which is my reason for cross sharing this entry and the upcoming entries. In essence, my blogs are my backyard. Both, in their own ways, reflect my story. And of course, the obvious connection is that I author both blogs.
If you, or a loved one or friend has Epilepsy please consider wearing purple on March 26th to help bring much needed awareness to the disease and the need to find a cure. Both, Roxy, my rescue ESRA Sprocker (English Springer Spaniel + Cocker Spaniel) who has Epilepsy and and I will be wearing purple on the 26th. My people connections, please think about joining us and if you are owned by a dog, why not add a purple ribbon to his or her collar for the day for Roxy and her canine friends with Epilepsy. Thanks!