News Snippets

Found a little time so I thought I would put it to good use and do a little writing. In the background game two of the World Series just finished. Not all that exciting for me as the Diamondbacks routed the Rangers in a very lopsided contest. I don’t really have a dog in this fight. I suppose if I were a Diamondbacks fan I might be ecstatic. As far as I’m concerned they’re just a bunch of highly overpaid babies who have ruined the game. In a sad turn of events, it was announced that Matthew Perry of the Friends TV series passed away this evening. Friends was a show that Jonell and I watched every week together. We liked it so much that we ended up buying the entire series when it was released. We occasionally watch it still today. Chandler was my favorite character from the show and he is a talent that will be missed. As for progress on my book; I have been experiencing a program compatibility issue. Things have been coming along much slower than anticipated. I think I’ve figured out what I need to do. I should know in a couple of days if this solution will work for me. If it does I will be able to do most of my work offline. Internet may still be an issue for me, but it should not be as bad. The holidays are fast approaching as you well know. This post will actually be published just one day before Halloween, which for some reason is becoming a month-long celebration. I have fond memories of traipsing through the neighborhood as a young boy for a candy bounty that would last me nearly all of November. Nowadays, kids go from car to car to get their reward instead in what is called “trunk or treat.” All because some idiots think it’s funny to lace candy treats with razor blades and drugs. Your punishment awaits you in the afterlife. And for my physical therapy as well as my overall health things continue to go frustratingly slow. Seems Jonell, Lydia, and I are battling colds. A persistent cough seems to be the worst part of it. Fall has only stayed a few short weeks, and winter is intent on appearing early. In fact, on Halloween night it’s expected we are going to have temperatures at a low of 20 degrees! We rebound a little later next week, but not to the level where I would consider it an Indian Summer. Had a real scare during the past few weeks. A notification letter from Social Security which alerted me to my February 1st acceptance into Medicare due to my disability and advised me to begin looking at plans arrived in the mail. Normally it would have been a piece of good news. Something we waited more than two years to hear. However, it seems it was also sent to my current insurance company. Whoever received the letter entered the date the letter was drafted rather than the February 1st date when I would have Medicare. The error canceled my current coverage leaving me uninsured. What compounded the problem was that even though they acknowledged their error, because it had been done to thousands of other people, they told us we were on our own until Medicare took effect on February 1st! Imagine the stress and anxiety for Jonell when she started worrying about having no supplies for the next four months. And what about my bed and oxygen machine and various other pieces of equipment I depended on? Was someone going to come and just put me on the floor? Jonell was crying over the whole matter. Fortunately, we had a friend Michelle who referred us to an attorney. One letter from them was all it took to persuade the insurance company to correct the mistake and we were covered as though nothing ever happened. I feel bad though for the 1,000’s of others they have done this to. By the way, I was working with Michelle before my stroke. She really knows her stuff and is a very compassionate individual. If you need any help with insurance I highly recommend her. Let me know and I will put her in touch with you. She specializes in Medicare but does all kinds of insurance. If she can’t answer your questions, she will put you with someone who can. Thanks Michelle, you saved my life!

Priorities

I‘ve reached a decision that has honestly been very difficult for me. I need to start focusing more time on the compiling and editing of my book. I also need to spend more time trying to make myself stronger. I’ve noticed small things that are encouraging to me and I want to really focus more on getting better. I thought I would have completed the compiling of the book by now. I really underestimated the time it takes to edit and proofread a book. Also, something Jonell said to me tonight which made me so happy. You see there’s a new couple we met recently named Melinda and Brad. Brad has already worked on our driveway for us. Jonell spent a good bit of time talking with them tonight. Brad is coming over tomorrow to sit and talk to me. Actually, Brad will be doing most of the talking, and I will mostly listen. Occasionally, I will peck out a few comments. Brad told my wife today that once I am ready for it, he will help me get my shop situated so that I can get back in there and piddle around. Melinda has offered to spend some time with Jonell as she tackles cleaning and organizing our shed. They are really good people. My plan is to still write the BLOG posts, however, they will not nearly be as often as I have been posting. As much as I enjoy writing my posts, I have to bite the bullet and set priorities. While I was editing today, I realized that I’m the one who has to do it. This will be for as long as I need to get my book finished. I only finished a single chapter today. It took me a little over ten hours. I do contribute some of that time as the result of poor internet coverage, but that is something I will always have to contend with. I may get a little faster as time goes on, I’m sure as I learn the program and shortcuts I can use. I figure I will be an expert by the time I am finished. I worry about my internet holding out, but we aren’t really in a position to do anything about that. I imagine the upcoming holiday will also have an effect on my writing. One feature of the program I’m working on is that it gives me the ability to see my book as it will appear and function as a Kindle book. It’s very exciting to me to have this option. I plan to make the book available both as a paperback and as a Kindle book. I realize that some prefer the textile experience of a real book, while many others are beginning to embrace the convince that the Kindle offers. You no longer have a need for a wall full of books. Used to be that I barely even touched my Kindle, other than to play games. Now it’s all that I can use. It’s been interesting thus far, to reread my words of over two years ago. My head was in a different place then. I believe I have grown as both a person and as a writer. Of course, I still can be rather corny.

I’ve created a Go-Fund-Me account to help with trying to get physical therapy and help to cover the other expenses not covered by insurance. Click on the picture below and you will be taken to the page. Thank you and God Bless!

The Hardest Part

Reflecting back on my recent milestones of starting to feed myself and having reached 100 posts has caused me to realize my doing so was certainly a team effort. You’re support has definitely led to my success.

Maybe not so much the eating part. I had my wife’s good cooking to motivate me to get that done.

The hardest part of my reaching 100 posts was not at all the writing. Writing is like talking for me, and anyone who knows me can tell you that I like to talk. More specifically, they might say that I like the sound of my own voice. Honestly, they wouldn’t be far off. People would tell me I sounded like Neil Diamond when I’d sing a song.

If you’re saying “Who?” I’m going to have to see some I.D.!

Tangent Alert! I should have been a politician.I ran for class president during my junior year of high school. I lost to a guy that didn’t even wear socks. That was what he touted as why everyone should vote for him, AND THEY DID! Obviously, I needed to be cooler. Frankly, it wasn’t even close. So that was the extent of my political aspirations.

I don’t know why I felt the need to tell you that. For some reason, I just remembered it.

Squirrel!

Oh yeah. I was telling you about the hardest part.

I guess I’d have to say the hardest parts, plural, were keeping myself organized, trying to remember what I had already written about, and waiting to get better. They have all been equally hard for me.

Of course, I could always go to the BLOG and read what I had written. But as the number of BLOGS increased, it became more and more difficult to do so. Plus, I didn’t have access to my laptop at night when I would do most of my reading. Sometimes Lydia will set me up with my Kindle so I can read myself to sleep. Then Jonell will put it away when she gets up to check on me.

It was also made more difficult because I am working on a book. When all is said and done, I may have more hours spent on putting it together than writing it!. So I had to figure out, “Does it sound familiar because I already said it in a BLOG post, in my book, or was I remembering something I had already written but was deleted in one of my many computer crashes?” It could have also been something I simply was writing or even just thinking about.

The struggle of a writer is real!

The Bedhead Bob BLOG was born of my desire to do something other than just lay around and watch TV all day. I do it primarily for posterity should anyone ever want to learn about me when I’m gone. And like I’ve already said, I like to write.

While it’s true that including my BLOG posts as the basis of my book is kind of cheating, it’s me who wrote all those BLOGs. As I read my words in my early writings, memories come flooding back.

I figure the book will be at least 50,000 words long. It represents 400-500 hours of writing. my part. As I said before, probably more when you consider how long it’s taking me to compile it. Pretty good for someone who types with their eyes. Some nights the strain on my eyes really gets to me.

A lot is written about the lack of quality of life among Locked in Syndrome patients. At least that is what was being reported in the research I read. But I have got to say it hasn’t been all that bad. Certainly, I would much rather that I was able to move about. However, I am blessed to be able to spend so much time with my wife and daughter. Although I do miss things like working in my woodshop and driving my car.

Sometimes, I will get a bit down. I get impatient a the length of time it takes to show any progress in my recovery. I’m not a patient man. Waiting has never been one of my strong suits. I suppose that’s true of most people. Nobody likes to wait I guess. Brings to mind an old Tom Petty and the Heartbreakers song. A  line from this particular song sums it up perfectly, The Waiting is the Hardest Part.

Hence the appearance of the Express lane. Seems rather counter-intuitive to me. Isn’t the goal to get you to buy more? Why then would they create something that helps you get out of their store quicker? Just something to think about.

What also bothered me was the back of my neck and my throat from looking over my glasses so the computer cameras could detect my eyes. My chin and throat would press against my tracheotomy cover. I sure do wish I had better eyesight.

Another positive note as I think that all of the writing, doing so has made my neck muscles stronger. I can move my head much better than I could two years ago. I’ve also gotten much better, I’ve noticed lately, at pecking away at my laptop keyboard. I still need assistance with maneuvers that traditionally require two hands. I have come to realize my recovery is more like a marathon, not a sprint.

I try to remain as much in the present as possible. Music tends to draw my mind to the past. So do old pictures. I drift toward the future if I start thinking about Lydia or my grandkids and their lives and the world we are leaving them.

I don’t think we’re going to have flying cars or anything. Weren’t we already supposed to have had them by now? We can’t even figure out how to handle what we’ve got!

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Your support is appreciated!

Eat It!

Today I reached a personal milestone! It may not sound like much to you, but today, Sunday, October 15, 2023, I was able to feed myself!  Such a small task that everyone does so often they take it for granted. My wife had walked away from a plate full of french fry pieces she had broken up for me, and an omelet that she had cut into little squares for me. She got distracted with something else and I grew impatient waiting. So I reached down, pinched a piece of french fry between my thumb and index fingers, then hoisted it to my mouth. It reminded me of a baby when it’s first learning to eat. I started out by grasping small pieces from the plate on my lap a bunch of Cheerios from Mom’s purse. I raised them to my mouth… sort of. In the beginning, I dropped at least as many as managed to find their target. It must have been quite comical. Jonell observed me doing this and excitedly called for Lydia to come and see. They smiled and gave me a hug. For a second I felt like a puppy that gets rewarded for learning a new trick, (all that was missing was they’re patting me on my head and telling me good boy!) I then realized they were genuinely excited about my accomplishment. Before long I had the idea of using the fork on the plate in front of me. It was difficult for me to find my grip at first, but eventually, I got it. Awkwardly I jabbed at the bits of omelet before me and then I would try to guide it into my mouth. Maybe dipping it in ketchup wasn’t such a great idea at first. I seemed to wear more on my face than stayed on the egg. However, I was soon able to put it into my mouth with a great degree of accuracy. I wasn’t able to twist the fork, so the fork would go into my mouth sideways, but it got the job done. Chewing was another obstacle I would have to overcome. I managed to use my tongue the maneuver and get the food to the side of my mouth so I could mash it up with my teeth. Finally, I was able to force myself to swallow. I have to be careful as my body still takes a deep breath about every twelve minutes give or take. I don’t want to aspirate by inhaling any food that might be near the back of my throat. I’ve already had a few close calls. You might as well know that I’m eating regular food now. When we were switched off of Hospice, there was no longer a vegan offering. All for the best. I don’t know how much longer I would have lasted now that I’ve had the taste of regular food again. It’s not like I had a problem with eating meat. I only did it because of a book that I read just before the stroke. Plus I don’t want to task Jonell with yet one more thing to have to do for me. Expecting a special menu seems selfish on my part. So today I dined on chicken fingers as well. I eat very slowly, wanting to ensure I don’t choke on anything. Besides, it really gives me the chance to savor the flavors of what I eat. I wonder what’s on the menu tomorrow? Could this be the beginning of the end for my feeding tube?

Picture Wall

Jonell likes to hang pictures on the walls. When most people have photo albums of their pictures, usually grouped in the various stages of life. Jonell creates entire walls of those memories. She will fill spaces between doors or just about anywhere she can drive a nail. Even a few places she shouldn’t. So as I lay in my bed I see a lifetime of events displayed before me. Sometimes I will just start crying as I think back on all the great times. Then this thing suddenly caused all the pictures to be taken with me in my bed. For the most part, with only a few exceptions, I think I have dealt with this major life-altering turn of events fairly well. I know it’s nobody’s fault and there is no one I blame. What has hurt the most though is that there are some people who I would have swore would have at least kept in touch with me via text. It’s been over two years since I’ve had any word from some. Even though I have made several attempts to reach them. If you think this may be you and by some remote chance you happen to read this BLOG, I hold no ill will and a simple hello text would be awesome! I’ve reached the age where I’ve learned that life is too fragile and short to harbor bad thoughts. Let’s start anew. It’s best to try not to let negative thoughts rent space in your head. If there is some wrong I’ve done to you, please forgive me. We are both reaching the age where things begin to happen to your body. I am the perfect example of that. I am worried about you. Even if you never want to hear from me again. I will of course be sad, but please let me know you’re alright. Sometimes when I close my eyes a picture of you will flash in my head and I will smile or cry from the thought. It’s my own picture wall, just like Jonell makes. Only I can change my wall anytime I want. It’s funny how one picture will lead to many others. They really are just still frames of my memories of you. I long to see you again, but I know the distance is a problem and I would gladly settle for a text or phone call through Jonell. My faith in God along with the support of my family and friends is what gives me the power to continue when I falter. There are times, as I said in my last post, when I wonder if I can continue. But then I survived a widowmaker heart attack and a stroke that kills most. I’m not being conceited when I say that God must have other plans for me. That’s what has driven me to speak more of my faith in my posts. Perhaps I’m supposed to be turning more people toward Him. I’d love to get a chance to create a new picture wall with you. And sit with you and reminisce about days gone by. Or exchange texts of life’s happenings with you. In case you’ve lost my number for some reason, you can reach me at 573-210-4556. If this is goodbye, I wish you the best!

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Dark Side

A long time favorite song of mine. You may recall it’s by John Cafferty & the Beaver Brown Band. Since it is the only song by them that ever got any play time, I guess that would make them a One Hit Wonder. Released in 1983 it only managed to climb to 64 on Billboards charts. However, a short time later it was rereleased and climbed to number 7 on Billboards Hot 100 chart. In this case, time proved to be fruitful. Time is rarely on your side. Time is not my friend I’m afraid. With each passing day it becomes more and more apparent to me. Not only am I up against the ravages of LiS and all that it entails. I must also face the fact that I am otherwise nearing what would be my natural life, even if LiS were not a factor. It just so happens that the projected time to live beyond the onset of LiS and what is my naturally expected life donation, converge at roughly the same time. When you get to around the age I am, you begin to really start to think about how little time remains in your life . The truth is, thinking about your death is really a waste of your time. The Bible says, “Man’s days are determined, you (God) have decreed the number of his months and have set limits he cannot exceed” Job 14:5. The fact is that we could all go at any time from the day of our birth. However, even knowing this doesn’t ease my mind sometimes. That’s why keeping myself busy with things like my writing is such a good distraction for me. I will write to the point of exhaustion at nights in order to keep my mind busy and away from the dark places I tend to go when I just lay here sometimes. It’s like my fear of the dark. As irrational as I find it to be, I still know that if I should wake in the dark, I will be gripped in fear. That’s why I believe you should continue to find new challenges for yourself. Not only is it good to always keep striving for a better you. It keeps your mind distracted and away from those dark places I eluded to and tend to frequent. Not only should we do it for our own wellbeing, but we should also encourage our friends and loved ones to do the same. Before my stroke I had gone back to earn a degree. And even though I worked full time for my family, I wanted to be more for them. So the time I would otherwise have spent parked in my recliner watching some actors in some pretend life dramas, instead was spent living a life of my own making. Working my brain all the time and not letting it be worked for me is what I believe is responsible for most the recovery I have had thus far. I feel though I have hit a plateau and need therapy to push past it. The research I have been able to do on Locked in Syndrome has renewed my hopes because I demonstrate some of the key markers for a partial to full recovery. When I first read the study I found, I kept saying to myself, “I can do that ” to the point that I laughed till I cried. I then called Jonell over to read it I was so excited. She gave me a kiss after finishing, “See, I told you you got this,” was what she said to me. Jonell and others believe in me. That gives me the determination to work all the harder. I must admit I didn’t really believe it could happen in the beginning, now I do.

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Journey Onward

We are authors of our own stories, and captains of our own ships. Life brings us inspiration from many sources and I believe those are sent to us from God. Maybe they come to us in a dream, in a breathtaking sunrise, or in a perfect stranger who walks into your hospital room one overcast November day, while you struggle with a catastrophic stroke that has turned your life upside down. That last example is of course how Celia first came into my life. Little did I know that on that day, I was not only meeting my speech therapist who came with the same type of device that I am writing this BLOG on now. But is also someone I would soon regard as one of the most selfless and kind people I have ever met in my nearly 63 years of life. Writing about Celia is difficult for me. Only because one BLOG post could never do her justice. Nonetheless, I will try to do my best. Not so long ago, Celia undertook what was a fairly risky endeavor, starting a business on the heels of a worldwide pandemic. It was also a very precarious time financially in our country. It still is in my opinion. And although it was a business that was steeped in government and insurance company red tape, she did so anyway because of her desire to help others. That’s about the time I took over all of the publishing duties of our BLOG. She insisted she could still do the BLOG publishing duties. I had no doubt she could, but I knew firsthand the complications of a new business and didn’t want to add to that. I soon regretted my decision but mostly because it meant that I no longer had an excuse for the nearly daily contact with her I was used to. It was ultimately a good move for me as it pushed me to learn new skills and grow. I recently saw a Facebook entry by her that talked about her impending 40th birthday and how she would challenge herself by as she put it, “to try and or learn 40 new things” by her 40th birthday, which is to occur in about six months. We often make the decision to challenge ourselves either mentally or physically. Rarely though do we make those decisions public for everyone to pass judgment and hold us accountable for our actions or lack thereof. It might be we want to learn a new language or go back to school. Or perhaps we desire to go on a diet or start working out. If we don’t tell anybody, there won’t be anyone questioning that candy bar and big gulp you are having for lunch. This is not a dress rehearsal that we are living. Growth is achieved through the challenges we place on ourselves. When applied correctly to your car, cruise control can be a freeing thing. But when we apply that same idea to our lives it can have a detrimental effect, causing us to become complacent in our lives. Disclosing your goals publicly is a brave thing. Very Celia–like. From my view, it’s the kind of thing Celia does daily. She came into my life as a breath of fresh air. She’s shown to me to be an answer to my prayers, and those who know her know that she is a beautiful soul. I love you my friend!

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The Visit

Ephesians 5:19 says, “singing and making melody to the Lord with your heart.” Friday was a very special day for me. It was this past Friday that we got a visit from my Aunt Sue and my cousin Brent. Two people who mean a great deal to me. They lifted my spirits! It has been years since I have seen either one of them. Brent was thoughtful enough to bring along his guitar and blessed me with both some Christian songs and some great soft rock songs which brought back a lot of fond memories. He brought joy to my heart as I journeyed back to where I was when I sang the song myself (As I once wrote, I was a karaoke DJ) or remembered listening to them. Music has always had that effect on me. I wish I was able to sing along with Brent, although he is a much better singer than I ever was. I just closed my eyes and enjoyed being serenaded. I found myself trying to keep the beat with my left hand, awkwardly tapping the bed. Since Brent and I are fairly close in age, we share an appreciation for the same types of music and singers. I always wanted to play guitar like he can. I even took lessons at one time. About the farthest I got was learning a simple version of  Folsom Prison Blues and part of Leaving on a Jet Plane. Brent even got his first guitar from our grandpa. Now we just get him to wear a funny wig like Grandpa used to do when he played for all of us kids. They stayed for as long as they could, but eventually, they needed to head back down the road. Aunt Sue had a good long talk with Jonell while Brent played. Aunt Sue knows the challenges and stress that can come from being a caregiver. She used to do it herself for my late Uncle Teddy. Aunt Sue and Brent bid us goodbye. They promised to come back soon for another visit. They are two of the kindest people I know. They made me very happy. Brent even said that I should send him a list of some songs I’d like him to play the next time they are here. Before they left, we all joined hands and first Aunt Sue and then Brent led us in prayer. It was the perfect way to end the visit. But in my heart, they’re still with me. Family can be hard and awkward sometimes. But I can honestly say I can never remember a time when that was the case with these two. It has never been fake or forced. They fit like your favorite pair of jeans. They make me want to get better faster so that I can travel and see them more often. Meantime, I’ll have to remain in this bed and wait until they can get back on a visit. They just left and already I find myself missing them.

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