A New Outlook

My eyes slowly open from a deep, peaceful slumber. I think for a moment but I am unfortunately unable to recall any of my dreams from the night before. Too bad. For when I can they have always been pleasant ones. To my right, atop an antique buffet, there sits a small lamp that shines its dim light. It is on because I developed the anxiety of waking in a dark room unable to see or move while I was still in the hospital. The lamp is now my comfort and it shields me from the darkness. Also on the buffet, I glance to see the time. 5:57 is what it reads in red L.E.D. numbers. I think I remember that the news reported last night that sunrise was 7 something, I’m not sure. I know it is probably cloudy outside, it’s supposed to be cloudy all week. Cloudy means the light from the sun will be greatly subdued when it finally makes its appearance. I cannot see out any window, my bed faces toward a wall. There are no windows on my left or right either, only at my back. I have wondered if they could turn the bed 180 degrees? It would be strange with my footboard on the wall but it would allow me to see outside. Just a thought to talk to my wife about. I’ve often wished I had a hand mirror. My left arm in which I have regained some of its use, should be able to hold it up enough or tilt it to an angle where I would be able to see. Few will likely read these words. I have found that everyone leads a life much like mine that is a hot mess. For a brief moment, I may have garnered some sympathy and support, but life keeps moving forward as it does. My words are written for me mostly anyway. Or perhaps they will be read by a great, great something or other who stumbles across them someday. These words would be written in a small journal were I able to put pen to paper. Perhaps hidden away in a dresser drawer or tucked away beneath the corner of a mattress. They might be seen by my sons or daughter, someday in the not-too-distant future. However you come to read these words I bid you greetings. Don’t be sad for me but let your heart be filled with joy, for I’m on the mend and I have faith in my Lord and Savior. I’m not a great writer, but I hope to give you a sense of my life. I wrote the first 100 posts always trying not to make my writings be too much about my faith. I am ashamed. I had a fear of being off-putting to anyone who wasn’t a believer. This will be my first post where I have shifted my focus to an audience who like me have a strong faith in God. I’m not angry or upset that people without my views on faith may no longer read what I write. They have lives of their own and a need to continue on the road of their journey, and I too need to be true to myself. I am still grateful that our paths crossed, if only for a while, even if we don’t agree. As I alluded to earlier, this life occupies but a moment, and it keeps moving forward. These thoughts and many others run through my mind as I also think of the day ahead. Distracted by my writing I notice that the room is now washed in a gray, ghostly white. The clock reads 7:21.

100!

This is the 100th post of this BLOG. Believe me when I say that nobody is more surprised than I am. When I wrote my first word a year and a half ago, I didn’t really know what I could write about that was going to write about to keep it going week after week. And yet, somehow I managed to do it. Admittedly, I never could or would have done it without the help and encouragement of Celia, someone that I am proud to call a dear friend. I also received the love and encouragement of Jonell and Lydia through some rough times. And believe me, there were some rough times!. Times when 100’s of hours of writing were wiped out by a glitch in my computer, and I was ready to throw in the towel. Obviously, I didn’t, and now I celebrate this auspicious occasion. Nobody likely noticed, but I don’t call this my BLOG, but rather the BLOG. This is because I consider it the accomplishment of many, I don’t consider it my BLOG in any way. Today I was notified that the BLOG received its first subscription. I have no way to know that subscriber’s name, but to you, I say thank you and welcome! Perhaps it’s apropos that I recall last night’s dream so vividly. It is the first time since I suffered my stroke that I recall dreaming that I was bedridden. I’ve always had dreams where I had fully working limbs. I dreamt that several other people were around me as I lay motionless. When suddenly I started moving first my left leg then my right. I then sat up, moved to the edge of my bed, and rose to my feet to the astonishment of all those around. After a moment, I started walking, awkward at first, but more confident with each step. I walked down a hallway, did a quick turn, and returned to my bed. I woke thinking I was able to walk, but when I tried I couldn’t. Nonetheless, I had an eventful day. It seems that I have developed an intolerance to bananas. Today Jonell was giving me small pieces of one as part of my reteaching myself to eat again. I thought I could learn to chew again and a banana would be soft enough for me to start off on. I didn’t realize how much my tongue was used for chewing.. Moving that little piece around my mouth so that it was small enough for me to swallow was difficult indeed. When I was finally able to get a few pieces down, I started coughing uncontrollably and began having acid reflux. The severe coughing lasted more than 5 minutes. I was done with my experiment of eating. It was funny though because Jonell dropped a piece of banana on the floor and attempted to get our dog Tigger first, then our dog Rip, but neither would have anything to do with it. I say it’s funny because they will each eat cat turds, but they find banana to be unappetizing. A short time later I was treated to a portion of a baked potato with sour cream and cheese. And for dessert pureed fresh strawberries. While the strawberries didn’t pose all that much of a challenge for me, they were quite good. The potato was also a treat for me. Jonell said that tonight I can have some mashed potatoes. All together they offered a cornucopia of pleasure!

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Big Dreams

I didn’t think yesterday would be so hard but it was. Looking back on the past two years makes me realize how much I’ve lost. Don’t get me wrong, I’m proud to have created the BLOG. I don’t think I ever would have done it were it not for my LiS, much less stuck with it. I know I had a couple of hiccups along the way, but I was able to push through them. I of course have Jonell, Lydia, Celia and all of you to thank for that. You were my life preserver when I felt like I was drowning. Physically I still feel I have a long way to go. I work on it everyday. Though I have to admit, I should do more. I worry that the absence of real physical therapy may stop me from any chance I may have at recovery. Has the door closed on any progress I will make? Will I begin to lose any progress because my muscles continue to atrophy for lack of use? Questions I ask myself all the time. I do have a speaking valve, but I struggle to even make a noise when wearing it. I don’t have enough lung capacity to push sufficient air over my vocal cords. This seems to be a common theme of people who suffer from Locked in Syndrome. This is according to what is being reported on one of the LiS sites I am a member of. There doesn’t seem to be any real solution for it though. I’ve even been on a site that speaks of muscle fatigue being a common symptom among stroke victims. It happens to me often, but I struggle to remember, did I notice it happen as frequently before I read it on the website? I don’t like to be negative, but have I uttered my last words? Sung my last song? Singing has always been something that I do for enjoyment. Some even say I had a nice voice. That I sound like Neil Diamond when I sing. There were people who would actually come to my karaoke shows to hear me sing classics like, “Sweet Caroline” and “Cherry, “Cherry”. Very dear memories for me.  So many dreams, I’m certainly not ready to throw in. I the towel. If I’m going to make a recovery, then this old dog is going to have to learn some new tricks. I don’t want to lose my positivity or that of those around me, but I would be lying if I said that nothing was wrong. I sometimes lie awake at night, staring at the ceiling and thinking this could be how I will spend the rest of my days. I can’t help but wonder,  will I ever see my reflection in the water, or hear the sound of my own voice again?

Two Blue

Two years ago today I suffered the stroke that is responsible for the state I find myself in today. Best described as up a creek without a paddle. Not at all an anniversary to be celebrated, but like Pearl Harbor, it forever will be a day I will commemorate. Not a day to celebrate, but surely a day that changed my life. For a long time I mistakenly believed that the day my stroke occurred was September 22, even wrote about it previously. However, Jonell has informed me that in fact, it was the 21st. I am much more inclined to trust her memory over mine. Besides, those early days in the hospital are a blur to me. Pretty much just short little home movies, the really old black-and-white type without sound. I guess the most difficult part of suffering from LiS is learning to cope with the loss of autonomy. Waiting on someone to do every little thing for you, from positioning me in bed to adjusting my glasses is exasperating. It happens so frequently that I just type out on my screen and wait until someone checks on me rather than disturb them, otherwise, I’d be asking for things nonstop. You simply don’t realize the number of times you unconsciously go to scratch an itch, until you can’t. And believe me, it isn’t easy to allow, I should say need, others to clean your most intimate body parts. That has been one of the hardest parts of my LiS to get used to. Truth be told, I still struggle with it at times. There have been a few blessings that have occurred as a result of my LiS, I can’t say that they justify everything that I’ve been through, but I can’t imagine never having met, much less becoming friends with many really amazing people. Also, early retirement has given me the opportunity to be closer to my wife and daughter, otherwise, it would have been years before that would have been able to have happened. When you’ve had your whole life stolen from you, you try to hold on to anything you can color as positive. Sometimes no matter how hard you try, all you end up doing is thinking how hopeless it all seems. I confess to spending many nights crying myself to sleep. They say you’ll never walk again. They say there’s no coming back from this. Still, I try to remain positive. If you believe in the old saying, Into each life a little rain must fall, you have to agree I’ve had a hurricane pass over me. And like hurricanes are apt to do, it has left behind a trail of destruction and tears. Like in a real hurricane, some recover and some don’t. I’ll not let the things I can’t do take away from the things I can!

Hope

Nearly daily, I research the internet for articles that can educate me on new developments into LiS. Being the rare condition that it is, so too is the funding, and thus the interest in discovering a fix for this life-altering curse is almost nill. There are the many articles that give the same information on how rare LiS is, and how bleak the prognosis is for its victims. It’s almost as if they were cut and pasted. Sometimes though, I stumble across something that gives me hope, even makes me cry tears of joy. These rare gems do of course hawk their wares, trying to sell you this or that. I especially dislike, it when the website asks if I will accept their “cookies.” Not accepting means that I won’t be able to read the article. I know I probably shouldn’t, but I usually do. I thought that just my being on your site meant that I was accepting your “cookies.” But more importantly, even if I could I didn’t accept, regardless of how interesting your article seems to me, the mere fact that you are asking me, probably means that somewhere in your seven pages of “Terms of Service, ” is hidden away my agreement to a whole bunch of stuff I shouldn’t agree to. And as much as I will miss him, even though he can sometimes annoy me, I think I just gave up the rights to my firstborn child! What they do in their articles which is so great though, is leave you with a longing to be so much more than just a patient in a bed. A belief in a future. A desire to overcome hurdles. What’s odd to me, if not a little frustrating, is that all the research appears to be coming out of universities and research centers from abroad. I really don’t care where it comes from. It’s not me trying to be all nationalistic or anything. The very fact that I have not yet come across a single article that is American born, means to me that it is all about the money. Finding a solution to this terrible affliction doesn’t mean millions of dollars to some special interest. And as long as that remains true, slow and few will be the discoveries, which may someday be what lifts me out of this bed. I hold out hope, that soon I will read about a discovery, that breaks the chains which keep me prisoner to this cruel master I have spent nearly two years with. I at least pray for its arrival in my lifetime. That one day soon, I hold family members and friends, who have given me their support through this all. Someday in the not-too-distant future, I will once again feel the cool green grass or warm sand between my toes. If I close my eyes and concentrate hard, I can almost bring myself to one of those places, but no matter how good the home movie in my head is, it doesn’t hold a candle to having been there when the movie was made!

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Play the Hand You’re Dealt

Nearly two years into a new lifestyle I did not choose, I still do not have a pain medication that is effective for me. Though they have tried many, sadly none have worked. I have sometimes wondered if the blockage in my brainstem is responsible for my quadriplegia, and could also be keeping the pain-killing drugs from performing the job they are supposed to? Either way, my usual means of dealing with the constant pain, being distracted doesn’t work. On a 10-point scale, where 10 is “I slammed my finger in a car door” bad, I usually stay at about a 2. However today it’s at about a 5. My usual distraction techniques don’t help when I go above a 3. So all I can do is sit here and hope it goes away, and if history is an indicator of that happening, my chances are slim to none. Fortunately, it is almost bedtime and I have found a way to mitigate the pain as good as any drug can. Nonetheless, what bothers me the most about my Locked in Syndrome, other than being a quadriplegic mute of course, is being treated differently. I’m still the same person, as long as you don’t expect me to play a game of hide-and-seek with you. I just want to be treated like I was before my stroke. My wife pointed out my double standard. I had taken to feeling sorry for myself because people had stopped texting or coming to see me as often as I thought they should. After all, I was a quadriplegic mute now, remember. The truth is, before my stroke, there weren’t a lot of people I kept in touch with or went to visit. If I want to be treated the way I was before my stroke, then that’s exactly what I’ve got. I hate to admit it, but my wife was right! What I do now is a bit different than before, but I still have most of the same abilities as I did then. I can text as easily as I can receive texts. I’ve also had a lot of people make the long journey to come and visit me, no easy thing to do, so I can’t really complain. In the beginning, I did get more texts to check in on me. I guess like me, they get busy with their lives. And anyone I’ve initiated contact with has always gotten back to me. Mostly I occupy the days with writing, either content for a book or the BLOG. I have also taken to watching TV. Though mostly I watch discs, classic TV series and movies with Jonell & Lydia. My life is pretty routine and full now I’d have to say. I try to help Jonell out as much as I am able. I do some of Lydia’s homeschool planning and help her with her studies. I must admit however that it has become a little challenging to keep up the organization of it all. After a year and a half of writing, it’s hard to keep up with it. When I was having all of my crash issues, I had taken to emailing my writings to myself, both to free up space in the writing program I use and as a means to be able to retain it. A good idea as long as I don’t exceed the limits of my email program, which I just discovered I had. So I have lost all of my oldest emails, A.K.A. some of my writings. I am limited with the programs I have access to. I have faith though that I’ll figure it out. I hope it is before I lose any more. If anyone has any suggestions on a program I can use I’m all ears, remember I do have the use of my laptop now. If anything, I’d have to admit that my life is nothing I can complain about. It is somewhat the way I pictured it being in my retirement years. Only I can’t do my woodworking or toss a ball around with the grandkids, but I’ve replaced my love of woodworking with a love for writing, and instead of tossing a ball around, it is playing checkers. We play the hand we are deal

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Setteling

We too often settle on a lesser version of ourselves. When we are in our formative years we want to be an astronaut, doctor, or in my case, it was an architect. Somewhere along the line, I let myself get distracted, but I always thought that there was plenty of time. And while we may change that vision of our true selves with time and as we gain life experience, we too often settle and cease to grow or challenge ourselves. We become complacent. Life beats us down. We take jobs just to pay the bills, telling ourselves it’s just for a little while. All the while knowing that there is more we could be doing. More we should be doing. If you manage to find yourself a good-paying job, you get pulled into wanting the next new gadget or maybe a shiny new car. Why not? You work hard. Besides, you can easily swing the monthly payments. Then suddenly, you’re barely scraping by again. Or worse yet, you’re underwater. Too much month left at the end of your money as the saying goes. Before you know it your life is nearly at an end and you look back with regret. I’m not referring to how much money you could have made, but the difference you might have made, to your family, to yourself, and to everyone around you. I recently completed a college course I took while working my dead-end job. The immense sense of pride I had when I was done, especially having earned a 4.0, made me proud. There were many nights that after having put in an 8-hour day that studying was the last thing on my mind, but I did it. It felt good to know I could do it. And it made me proud to show my family that more than just coming home and plopping down on the sofa and watching TV was possible. That was my primary reason for having done it. And for my kids, if their 61-year-old father could do it then why not them? You never stop trying to teach your children. And who knows, starting a new career when close to 70 wouldn’t be such a crazy idea. I could live to past 100. In fact, I said I was going to live to 115 didn’t I? If I was to end up some college’s oldest graduate I wouldn’t be upset at all. Doing it while I was a quadriplegic mute, now that would be something to talk about! I just have to figure out what I want to be when I grow up. You’re never too old to grow and learn. As the saying goes, If you’re not moving forward you’re moving backwards.

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Thanks to my 2nd cousin Veronica Jo Brassfield who drew this. I can’t say enough how much I love and appreciate it!

Labor Day 2023

Today was Labor Day, 2023. A day that is for many the end of summer, though officially that will not occur for a few weeks. I say good riddance. It is my least favorite of the seasons, and this summer has been particularly brutal. Soon we will hearken back the season I enjoy the most…  fall. I love the vibrant colors and cool but not too cold temperatures. Am I the only one who finds it counterintuitive that Labor Day is celebrated by taking the day off from WORK! Labor Day has become for most, a barbecue holiday and a reason to be,  like I said, off work. For me, it is mainly one more chance to gather with family members who have scattered near and far. What once seemed to be a small and manageable world has now gotten so big that I can no longer see it. Relatives whose names I don’t even know. Whose faces I will never see. But today, more than anything, is a time to reflect and be thankful for those I can be with. A day that has been set aside to honor all the hard work that built this land. Today has also been special because my son John and his family were able to stop by. It was actually an eventful weekend as on Saturday I got to visit with my sister Pam, step-father Rick, and from Ohio my sister Theresa and brother-in-law Eric. Theresa and Eric had driven in from Ohio for a little day of remembrance of their own, the birthday of their late son Michael. On Friday they had a chance to celebrate and remember Michael with his daughters, grandchildren, other family members and friends. Michael’s first birthday since his passing, I’m sure it was a very healing day for all. Something my sister Theresa desperately needed I’m sure. It was very good seeing all of them. We enjoyed each other’s company and laughed and joked while we spoke of bygone days. I just wish circumstances were such that I could see them more often, that it didn’t have to be such an event. I was for a moment a bit saddened when I realized that I could probably count on one hand the number of times I had left to be with my sisters. I let the sadness flow past me like a warm summer breeze and embraced what I could hold onto, if only for a short while, for soon I would be left with only memories. Sweet, sweet memories. But today was spent with my Son John, his wife Jerica, and my grandkids JeraLyn and Jase. Jonell made everyone’s favorite, chili, with Lydia’s help of course. Then everyone, except Lydia and JeraLyn who stayed behind to be with me, went out to do a little metal ‘tecting as Jase calls it. Jase ended up “discovering” a hidden treasure of sorts. A small metal box filled with various keepsakes of no particular value except to the young boy who had unearthed the time capsule. He pulled each item from the box with care and a sense of wonder and much joy. He speculated on who might have buried it and why. Jonell and I locked eyes and she gave a knowing smile. All and all, quite the successful and enjoyable day had by all. Although they could have done without all the seed ticks that managed to find them. I know this entire weekend will be a special memory for me. For Jase, today will be a day he will most definitely remember. Likely one he will grow to cherish all the days of his life. That was the plan anyway.

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