When I started this blog, the intent was to have a place to write out my heart. Well that’s proven to be a difficult task, for various reasons. What I’ve decided to do is to keep my blog separate from facebook, and rather than solicit readership, I’ll let you decide to visit or not. Not that this story will be any different from my facebook version, but it will be as my “about” page indicates, unfiltered and human.
Isolation is a huge component of my journey. And it comes in various stages. I mean, I know that people love and are praying for me, but very few people have the inclination to have regular or in-depth contact with me. For example, think back to Monday of this week. Beginning with when you first open your eyes from sleep. How many people did you speak to, or kiss before leaving your own house? Then factor in texts and phone calls. Upon arrival to work, or to drop off the kids; you greet everyone with a “Good morning!”, Some people even rate a hug or handshake. Then your workday or school-day involves whatever inherent communication, and finally that’s over. Then you leave, and what? Go home, get the kids, consider dinner? Connect with spouses, go to the gym or classes, church or bowling? Finally it’s time for bed, and you get into bed with whomever you share it with, or alone; but not before talking your girl or your significant other. All in all, it was a normal and typical day. Everyone has rushed, packed to the minute days, especially if you have children; and by the end of it you’re spent. But hey, it’s your life, right? Whatcha gonna do?
For the sake of comparison we’ll assume that my wacky sleep patterns have me waking at seven-ish. I awake to whoever worked overnight and request suctioning. Sometime in the next hour Jennifer will come downstairs and pass me en route to the bathroom and say good morning, often touching me as she passes (the bathroom is connected to my room and you have to enter and walk past me to get to it ). While she’s in there one or both of the kids enter my room to ask something of their mother through the closed bathroom door. Most times they’ll say good morning if they notice that I am awake, which is a 50/50 proposition in itself. When she exits the bathroom, she gathers the kids and their breakfast, has them come say good-bye, and they head out to school. At nine, there is a nursing shift-change. This nurse will stay until four. In that time, my wife may be working, sleeping or any number of things; largely predicated on whether she went dancing the night before and what time she came in. So, from nine last night until four this afternoon, with the exception of the occasional bathroom break, I am alone with a nurse. The only interaction with them is care related for the most part. I have a friend that I text a few times almost every day, but that’s it. When the nurse leaves at four, I am either alone in my room with my wife listening for my alarm so she can render care, or she sits in here using her iPhone or computer. This is usually predicated on whether I am watching something that she finds interesting. Then at nine, the overnight nurse comes in.
Every day is a close variation of this. A family movie gets me more time with the kids similar to how an interesting show gets me more time with my wife. But overall, the nineteen hours of nursing are spent with just the nurses. Other variations are Tuesday, which is bath day. And on weekends the agency occasionally provides 24-hour coverage for one or more days. This allows for all-day or overnight excursions for Jennifer and/or the kids.
So this social isolation is a real issue for me. Let me be clear about this. I am NOT throwing off on my wife or anyone else. Everyone has their burdens to deal with and I am simply sharing mine.. Over the last year or so, we have tried to address it several ways but invariably, this seems to be the default pattern that we always revert back to. And I have to admit, some days it makes me extremely angry! Those are usually the days when I post on facebook. I find that writing allows me to visualize the situation outside of my own mind, making it a little easier to deal with. More importantly, it allows me just enough distance for God to move on my heart and be ministered to. Apparently you can, indeed get in the way of your own deliverance!
So take it from me, even though your anger and frustrations may be justifiable, holding onto them is rarely beneficial! God will help you put them in perspective if you bring them to Him! And even if He doesn’t deem fit to resolve the situation, He will give the the strength and grace to withstand it; at least for today! Lest you decide that you no longer need Him! Lol! Peace and Love Fam!