The darkness is overwhelming…

brown bagI received a text telling me of their imminent arrival in approximately thirty minutes. Following a long half hour wait, I heard car doors shutting and voices getting close to my entryway. I whipped my wheels around to answer that famous ding-dong that soon followed as they promptly pushed the doorbell. After their arduous and adventurous eighteen hour peregrination, they walked in carrying fast-casual eats. They brought a big brown bag brimming with bulky burrito bowls from the famous Chipotle down the street.

We all three sat at the kitchen table dining and discussing their challenging trip. The conversation soon turned into a detailed description of moms schedule for the eleven-day visit. I see them once per year and share the time with the seemingly millions of friends that they have here in Columbus. It is always essential for me to get in where I fit in.

darkI cannot see causing me to reach out for help, but there is no one. The light is being blocked by the magnificently majestic amounts of food that they have brought. Like when a cloud blocks the sun, I can only see a few things, and these items are the only ones that I can reach.

20190716_173808For the first few days, my mom continually cooked meals in the crockpot to freeze. For example, on day one, she made enough chili for a family of four with two growing boys. She prepared it and then put it into Ziploc hard containers for the deep freeze. Mom allowed them to cool on the counter and then placed them in the icebox. She then washed the crockpot by hand and prepared to cook something the next day. She is filling my freezer to the brim with plenty of bean soup, chili, chicken noodle soup, and spaghetti.

cpotThe meals that mom has been cooking leaves an amazingly awesome aroma in the air that no TV dinner or cold sandwich could. I wake up the next morning, and this fantastic aromatic breeze still lingers and covers the smell from my air freshener.

“This place looks like you just moved in a week ago,” my mom pointed out. I quickly said that I did move in a week ago plus two months and then add a full year. Here is the thing I am a guy and tend to put very little concern into how my environment looks. Do not misunderstand me because I keep my place very picked up and leave nothing on the floor. I mean I have four wheels on my wheelchair, but I cannot go four wheeling or off-road in my house. Most days, I am focusing all of my time and energy on one of two things, either water and land therapy or this blog.

indexMy mom and Phil helped me hang some pictures on the walls and a valence on my window. She gave me plenty of great design ideas to give my house that comfortable lived in look. I can continue to work on these creative concepts even when she goes home. However, since the internal image of my house sits so low on my priority list, those concepts will not likely come to fruition. Not to mention that at a thousand miles away from my mom’s enthusiastic encouragement it holds little sway over my follow through.

No road is long with good company.

DO NOT TELL ME WHAT I CAN’T DO!!!

paragraph oneMy buddy came over with a pizza so that we could have a conversation and mastication. We talked about many things, including how my wheelchair life had begun a few weeks earlier. I was deeply discouraged and disheartened at my new station in life, so this was the focus of our colloquy. I allowed my intensely irrational imagination to run wild on how my existence in a wheelchair would look. My profoundly creative brain showed me a purgatory on earth. This perdition would have roads made of gravel and friends and family on a sandy beach that I could not traverse.

3.6 million people in the world over the age of 15 use wheelchairs to assist in their mobility. However, the idea of being stuck in this seated contraption permanently unsettled me to the core. It made me more nervous than boot camp for the Marine Corps. I lived alone in a house that was built in the early 1950s, and it was not remotely wheelchair accessible. I did not have the mandatory moving money to make my residence better. I could see that this new wheelchair life would be a constant uphill battle deeply embedded with my blood, sweat, and tears.

wheelchairI still did not have a way to get in and out of my house using this new wheeled mechanism. My friend happened to know the right person at his church to ask for help with this radically ramping riddle. There were some minor back and forth conversations, trying to figure out exactly what was needed for the requirements of my house. More importantly, we had to wait for winter to end before they could begin construction on my new elevation inclination. Building this big beautiful bridge took four gentlemen an entire weekend to construct.

first aidMy friend, who had been in the Air Force, realized that the best thing that he could do for me was to challenge me. He told me that if I did a 5k race in my chair that he would walk with me, and together we would conquer this beast. This new goal of mine had me searching for a 5k race in Columbus that would fit my needs. This monster had to have a few things like a first aid lodge, bathrooms, and a place at the halfway point to stop and eat lunch. Apparently, for a 3.1-mile race, they do not include those amenities, so I settled for a first aid tent and banana at the end of the race.

Once my new elevated entry was complete, it was time to start training for this complex competition. I knew that I needed a way to track my distance without using a paper map and a ruler. Then I learned the true meaning behind “there is an app for that” as I found a plethora of distance tracking apps. Once the user presses the start button on their smartphone, several things happen. The phone uses GPS and tracks to within twenty-five feet of its fixed location. I found an app that I liked, then I downloaded and set up an account to tally my trip totals.

thOn the first distance trip, I planned on conquering the world or at least traversing a few miles. Sadly it did not take me long to realize that I did not yet have the muscles that a race like this demanded. On day one, I completed an excruciatingly exhausting 0.2 miles. I now understood that this training would take more time than I thought and there were now only four months until race day.

brhsEvery day I wheeled around my neighborhood and watched my distance grow regularly. I met some perfectly pleasant people, and I explained my 5k goal. While I trekked around the community, I celebrated every milestone that I achieved. I saw several people frequently as some walked dogs, and others walked part of my practice trip alongside me. My circuitous route took me around a school several times and all through my neighborhood. I watched as nearly every day and more quickly than I expected my distance crept higher and higher.

The night before the 5k, my friend again brought pizza to palaver and discuss the next day’s procedures. He reminded me to get plenty of sleep that night and to eat somethingin the morning not too heavy. We talked about when he would pick me up and what I would wear for this 3.1-mile marathon.

Four months after starting this dynamic distance drill was game day, it was time to put up or shut up. Now was when I needed to put my big boy pants on and show the world, or at least those that showed up, what I could do. My nerves were shaking more than a guitar string playing heavy metal music.

I spoke with the correct person and requested to start the race early. I was in a wheelchair and move slower than a herd of turtles stampeding through peanut butter, so I wanted to get an early launch. I was hoping for an hour head start but was allowed to leave just after the kids and ten minutes before the runners.

20190630_155227The race was excessively, excruciatingly, exhaustingly long at 5 kilometers or 3.1 miles to be exact. Of all of the wheelchair users that day I came in first place and got my picture in the newspaper. So after exactly four months and one day of training and starting with 0.2 miles, I completed 4.11 miles that day.

When you are told that you can’t, do it and prove that you can.

How much is too much???

bsaThe Boy Scouts and the Marine Corps have both molded me into a man who has never been afraid of hard work. I used to find the point of working too hard and hover dangerously close to that line and only periodically crossing over. Working hard was never good enough, and I would often push it to the extreme always doing a little more. Consistently putting excessive effort into everything that I did and using every ounce of my energy until the job was complete.

However, I now carry a heavy burden called multiple sclerosis that stifles the stride of my progress. At times this awfully alarming affliction can feel like running a marathon while carrying an anvil. This maleficent monster can make necessary movements more challenging than putting an elephant through the eye of a needle. Yet 2.3 million of us brave souls worldwide who are impacted with this torturous tribulation trudge on showing our great strength every day.

I still repeatedly try to push too hard, move too fast and go too far drifting dangerously close to that thin red line. Finding and crossing this line can be devastating and can cause the need for extreme respite. This extended recovery can be as simple as sitting for a few minutes or as significant as being bedridden for several days.

I have done well with my workout routine of three hours a day on three days a week. I had some physical impediments that arrived well over a year ago with very little likelihood of their disappearance. However, I keep moving forward, knowing that my struggles now will help my endurance later. My fitness habits will help me live a longer, healthier, and happier life, causing my MS to flair as little as possible.

wgWhen I return home on the day of my workouts, I am weaker, limiting many of my daily duties. My dinner and evening cleanup is impacted significantly, and my evening tasks are discouragingly diminished. However, my strength slowly returns by the next morning, making that the day that I try to get things done.

I have now added a physical therapy session on each of my two free weekdays. This augmentation makes five consecutive days of strenuous activity that causes conflict for all MSers. So far, the first week has been an intensely debilitating life that is beyond comprehension. This level of tiredness makes me fall asleep quickly but creates a wakeup that is too arduous for understanding. Keep in mind that I have always instantly gotten up when my morning alarm sounds, never believing in the snooze button.

ccSo here I sit contemplating my complicated conundrum. I have been swimming seemingly indefatigably three days a week for the past two years. The day after each swim day, I have a full day of needed respite that I must now fill with more physical activity. My new enigma is how I do both events without crossing that MS line of too much. With multiple sclerosis, that line of too much jumps like a caffeinated Chihuahua making it hard to not pass.

Know your body and listen to it, it will forewarn you.

Finding the line in the sand…

start3The hate, sadness, and self-centeredness that fill our world all demand joy, happiness, and humility to counteract its impact. However, there are a time and place for everything, and not every moment is the correct instant for every comment. I try to keep life fun by using humor to exploit every situation. I always try to take a good or bad circumstance and find its funny aspect. However, I have recently realized that I sometimes need to change my tune. In specific situations, I tend to take it a bridge too far, and I do not read the moment like I should.

Back when I was poorly walking with a cane, I politely held the door for a woman as she left the building. I quickly grabbed the door and proudly held it as I have always done for others. As a gimpy guy, I was glad that I could still open doors for others no matter how unsteady I was. As this woman passed me by she gave a quick thank you and I returned with you are welcome. When I then walked through the door, I tripped over something, and like a skipping rock, I lost the fight to gravity and fell. I jumped up like a Mexican jumping bean and recovered just as quickly. In that instant, I said in a loud voice, “I give that dismount a 4.5!” I quickly found the closest chair and sat for a bit to rest.

bambulanceOften I take it excessively far at the improper point and place. Medical situations like hospital visits and doctor appointments are not complementary comedy conditions. I am the knucklehead who thinks it is ok to be funny while riding in an ambulance in a snowstorm on icy roads. I soon realized that they probably have some tape to put over my vocal hole to get some quiet so I decided to zip it. Thankfully for them, it was only a thirty-minute drive, and I stopped talking after ten minutes or so.

My one-liners can also get me into trouble as I tend to spout them off at the most inopportune time. A while back, I was in the ER and wheeled up next to the bed. The nurse asked me if I could get into the bed by myself, or do I need help? I quickly said, “Thanks, but I am sure that I can make it, but if I hit the floor, then I take it back.” Within the span of a blink, I had six pairs of hands on me ready to help me to get onto the bed. I honestly meant that I could do it, but they did not understand my lousy humor and poor timing. That being said, they were not even going to chance me falling.

pol trfrI was at the pool, and I had quite literally fallen during my transfer on my last visit. The lifeguard was there and asked if I was feeling ok to make the transfer this time. I said, “sure, but if I do not make it tell my mom, I love her.” He knew that I was joking from my laughing, but he did not walk away until I safely transferred from my chair.

Periodically in the pool, my legs will spasm and throw me onto my back while I head to class. While the spasms cause my legs to tighten, I cannot do anything except lay on my back and kind of swim using only my arms. This swim is more of an imposing endeavor because of me holding the pool noodle. There is always at least one classmate around, and inevitably they ask me if I am ok. I quickly say no and then say yes, and by that moment, I do not always know anymore if I am ok or not.

prosIt is complicated to break a habit as I have become proficient in this punctually practiced proclivity. These jokes make me laugh, but the professionals involved tend to be all business and have no time for my shenanigans. This behavior has been going on for an excessively long time and needs to change. My new job is to focus hard on my conduct and slowly change my inclinations and become more mundane in some situations.

Read your moment. Jokes may not be a good idea.

Define the meaning…

bsaWhen I was a boy, I was very active in the Boy Scouts. To find me packing for a camping trip was not a surprising discovery as our Boy Scout Troop camped once per month. I enjoyed being surrounded by Mother Nature to meditate in her awe-inspiring beauty. These trips allowed me to escape the troublesome topics of my childhood and let me contemplate conundrums as they arose. I would, of course, have everything resolved in a weekend like a TV sitcom.

At one of our Scout meetings, our leaders said that we would be inviting moms on a moms camping trip. The scoutmasters wanted the moms to see what their sons did and how their boys lived on a camping trip. We were advised to share with our moms that they will be staying in the camp lodge. We were warned that the boys would be cooking one meal of foil dinners for the moms. How scary and exciting this adventure would be for us as well as our moms.

backpackAs I packed, I suppose that I was in my own little world, although others might simply say that I was oblivious to everything. None the less I had a camping preparation procedure making packing a very systematic endeavor. I knew that every time that a certain father went camping with us, it was guaranteed to rain. Since this dad was going camping that weekend, this meant that bad packers would have to work with wet woes. I had been in the scouts for several years by then and could not make errors like that. I had to stand out as a positive example for the new boys.

overnightMy buddy, Mike’s mom, was driving the four of us, both of the mothers, Mike and me down to the camp for the weekend. When Mike and his mom showed up, I loaded my pack into the trunk. When Mike’s mom, Sandy, saw my mom’s overnight bag, she posed a query. “Where are your camping stuff and sleeping bag?” she questioned. My mom explained that she did not need it because they were staying in a lodge. Like a petulant little girl who does not want to wear her shoes for the day my mom was sent back inside. She was told to at least get a couple of blankets and towels, and without the dramatic stomping, she complied. Little did my mom know what she was in for.

As we arrived at the camp, Mike and I grabbed our gear full of sleeping bags, clothes, and other necessities. We then began our campsite preparation process, looking for a spot to set up all of the tents for our patrol. There was also a requirement to find the correct location for the campfire. We were genuinely unaware of the chaos that the mothers were battling.

lodge3All of the mothers arrived to see the retired rickety Boy Scout camp first aid lodge. This lodge was where they would be living for the next three days and two nights. They walked in to find some rusted old hospital style beds complete with plastic covered mattresses from the 1970s. There was a nice layer of thick green mold in the sink to protect any dishes that they may drop. There was also a chunky coating of blue-green mold in the tub to protect anyone who fell while showering. The lodge had running water because outside it rained significantly, the roof was punctured severely, and the ceiling leaked profusely.

My mother was horrified as she was ill-prepared mentally or gear wise to deal with this ludicrous lodging. The moms came to a consensus to sleep on top of the mattresses on the cement floor. This idea was questionable because the floor had a small stream from all of the rain. No wonder the other mothers were smirking behind her back. Well, at least she brought a blanket and her pajamas. It would be an extremely long weekend.

patrol boxThe scouts moved through the next day as the mothers conversed and contemplated everything that they observed. The boys demonstrated doing dishes and other daily duties on a camping trip. They also displayed the patrol boxes and explained everything that each patrol had in their box and what they could do with its contents.

fdinnerSaturday night for dinner, the boys made foil dinners for the moms. These foil packets had a hamburger patty along with cut veggies and sliced potatoes. Then the foil packs were salted, sealed tightly, and placed on hot coals to cook for 30 to 45 minutes. The moms appreciated coming to the campsite to get a hot meal and not having to clean up afterword. Although they were getting used to their new sleeping quarters, no meal cleanup took the sting out of the dilapidated conditions. The moms were delighted and proud to see their sons in their element. They later enjoyed the activities around the campfire that evening.

The mom’s campout was fun for the moms and the sons alike. The boys got some unforgettable and hilarious stories that we can tell our friends and children for the rest of our lives. My mom was the best because she gave us a list of funny material that would last well into our adulthood.

Clarify and verify by questioning everything.

Odd optical object…

eyeAt an annual eye appointment, I brought up an annoying eye issue. At the place where my two eyelids meet, there was a raised spot on my skin that would periodically prickle. This itchy issue was not a significant concern for me, but I wanted to mention it just the same. The doctor wanted to get a closer look at it because I rarely bring anything up, meaning this might be important.

The first machine to check out my eye was in the room as they use it generally for various reasons. Perpetually probing the pressure of the eye is this mechanism’s primary purpose. The system of parts also allows the doctor to see excessively close to your eye to see deep into your windows of the soul.

While the doctor was looking at my eye in the proper place, he looked at the entire eyeball as well. He figured that while he had me under the microscope, he might as well view my viewer in its entirety. The medical guy noticed a small blemish on the left side of my right eyeball and wanted to get a close-up photo for a more detailed look. However, he still needed a better portrait of my peepers, meaning a new camera was in need.

pressureDown the corridor, and in the next hallway, there was a small room with a machine that looked similar to the previous device. The tech asked me to set my chin on the metal plate while resting my forehead against a white plastic band. While I was in this position, the photographer tech was viewing my eyeball close-up. This chore allowed him to take photos while looking at everything on a computer screen. These images showed extremely close pictures of this minuscule blemish allowing a better look at this optical occlusion. Sadly, this seemingly infinitesimal imperfection was not evident, and a better set of images were still needed.

The third device was a camera that gave elevation images to see just how raised this mini macula was. I explained several times that I could not feel this raised deformity and that it did not seem to impact my vision. They still required a photo showing the altitude of this insignificant disfigurement.

After all of these photos of my slight sight blight, they still had not concluded. My eye doctor took a few minutes to talk with another eye doctor, and they determined that I needed an ultrasound. My medical professional let me know that one day per month, the Veterans Administration has an eye specialist who visits. They would set an appointment for me on that day, and I would receive an ultrasound. This scan would hopefully discover what this bio blotch indeed was.

birdI sat in the waiting room cautiously optimistic of my appointment with this visual virtuoso. I was expecting the specialist to arrive in a chef’s hat and not a lab coat to slather this cream like peanut butter on my eye. Between our conversation and my imagination, I was misinformed enough to let the trepidation settle in. Every other thought vanished from my brain box except for the idea of this thick cake icing smeared over my eyeball. The longer that I waited, my heart began racing like the wings of a hummingbird after a triple shot expresso.

I was taken back to the room for the ultrasound and noticed that there was an old style dental chair waiting to meet my seat. The tech assisted me in getting into this chair and set it back and pulled out a microphone sized wand connected to a long cable. The end that was placed against my eye had a plastic looking dome at the end that held a small amount of the belly jelly. After the two doctors and three techs completed the shop talk about what they saw, I was brought into the conversation.

ultrasoundThe ultrasound showed an unexpected benign cyst that was not of consequence to me once they used the word benign. The medical crew could not give a definitive answer on what the ocular obtrusion was. However my doctors plan to keep an eye on it, pun intended, with as needed future ultrasounds. It is also the case for the itty bitty on my eyeball. So I can rest assured that I am not losing an eye or going blind anytime soon.

No one ever injured their eyesight by looking on the bright side.

Individuals inculcating inspiration…

This is another blog that I did for the MSAA.

pan and pupsSomeone recently told me that I was an inspiration to them, but I do not feel like an inspiration. This person explained to me that I have a great attitude. They shared that I have an excellent positive disposition despite the numerous adversities that were placed in my path. They do not realize that my life is not pansies and puppies especially when dealing with my MS. These compliments make me think that the definition of inspiration might be nebulous. The following stories tell the tales of those who are inspirational individuals to me.

There is a soldier named Travis Mills. He came back from the Iraq war after an IED explosion. He was the fourth quadruple amputee that came back from this brutal battle. Everyone would have understood if he played the “sympathy card” upon his return. However, that is far from the case.

toughWith his wife and family by his side, he now does more in a day than most of us do in several days. He talks with all of the returning veterans mostly focusing on the severely wounded. He has a fitness training regimen rivaled only by die-hard fitness junkies. He also wrote a book sharing his life story and often does book signings as well. This amazingly inspirational book is called “Tough as They Come.” Travis shows that nothing can stand in your way when you have the will to keep walking forward.

There is another man who was on the X-Factor named Immanuel who is physically debilitated. Immanuel was born in a war-torn country. Later as an infant, he was adopted by an American family. Even though he is ambulatory, his legs and arms are in bad shape physically. He stood on the X-Factor stage with a slight tilt and sang “Imagine” by John Lennon beautifully. Faced with all of life’s difficulties Immanuel stood up and stood out letting nothing block his path.

Kanya SesserThere is a woman Kanya Sesser who was born in Thailand. When she was born with no legs, her parents abandoned her at the hospital. An American couple later adopted her. She grew up and became a model, skateboarder, surfer, and a snowboarder. Kanya does not let the challenge of no legs slow her down and rolls through life with a smile.

nvThere is another fellow named Nick Vujicic. He was born with no legs or arms and became a powerful motivational speaker. When confronted with his physically challenging life he did much more than anyone would have imagined. He speaks all over the world reminding people never to give up. Nick shows that with a compelling story and steady voice nothing can talk you onto the ledge.

I will also mention the many people that I often see at the gym in seemingly lousy shape, and they still show up. There is a guy who I always see walking at a ninety-degree angle bent at the waist, and he is there at least three days a week. One gentleman walks with a limp at an angle that makes me think that the wind from mosquito wings will knock him over. There is also a small waif of a woman who I see working out as hard as someone half her age and she is over seventy years old.

The list of infirmed individuals that I have seen at the gym is too lengthy to list yet they inspire me every day. We all have obstacles in our lives, but it is how we deal with them that make us who we are. I do not know about you, but I do not want to look back at my life and say that “I wish I had” or “I could have.” If these individuals can overcome the significant obstacles that they were dealt of no legs, no arms or even both then why can we not do the same? I will continue to find ways to overcome the conditions that life challenges me with. I cannot sit idly by while these individuals are living full lives with the struggles that they have been dealt while my difficulties look minuscule next to theirs.

If you can’t find inspiration be an inspiration.

Satisfactory survival sustenance…

muppets chefPeople periodically ask me if I can cook and what do I like to cook. I tell them that things are pre and post MS for me now. For example, I could cook very well pre MS, and I received many appreciative accolades when I did cook. I explain that I began from a young age to prepare meals using the stove and oven. I was not merely assembling bologna sandwiches on the counter. From the age of thirteen, I was cooking for my mom so that when she got home from work, she could simply sit and scarf.

Since we did not have cable, I vigilantly viewed many of the cooking shows on public broadcasting television. I carefully watched these shows drinking in every drop of education that they served. I learned the difference between making onions translucent and sautéing them. I was taught how to sear, stir-fry and even when to bake or broil. These instructors shared to steam and not boil your veggies as you should be able to eat them with a fork and not drink them through a straw.

young chefI learned so much about cooking as a young boy that I became pretty good at it, so cooking became second nature to me. It was as easy as tying one’s shoes. I cooked not only for my mom and sometimes friends but also as other situations would arise. I was extremely good at both cooking and baking doing whatever the case demanded.

At this young age, I was so creative with my provision preparation that others were amazed that a middle schooler cooked it. I made magical meals like an open-faced beef patty and broccoli sandwich that was topped with provolone cheese. I knew to steam the broccoli so that it was hot but not mushy and how to superbly season with salt. My high school teacher got married in my freshman year. As a fourteen-year-old boy I gave her a gift basket in celebration of her wedding. This gift had a loaf of my homemade of zucchini bread, homemade chicken noodle soup and a bottle of sparkling wine.

My MS and laziness have eliminated the idea of actual cooking from my brain‘s post medical condition. I am lazy because I am one person and do not want to deal with the hassle of cooking or cleanup for just me. My multiple sclerosis put me in my charming chariot making stovetop or oven use literally as well as figuratively out of reach.

“So what pray tell do you eat?” was their query. I explained that it depends on the moment and how I am feeling, meaning how much energy do I have. Let me give a few examples of some of my current go-to meals. Keep in mind that even though I mostly eat frozen meals, I will skip all TV dinners, frozen burritos, and cold breakfast cereals as well. I have stepped up my game from the days of eating poorly since I had no money to now that I am in a much better place mentally and financially.

cornGo to meal number one: I put about one cup of frozen precooked diced chicken into a bowl and microwave for one minute. Next, from the refrigerator, I get my oil and vinegar salad dressing of choice and parmesan cheese. I then open drain and dump in a bowl one can of sweetcorn and add chicken. At that point, I add the amount of salad dressing that I prefer and stir then add the cheese. Lastly, I get a starch like a slice of bread, pretzels or crackers and serve with a side of seltzer water.

Meal number two: a package of frozen salmon fillets that I put on a plate, cover with wax paper and microwave for four minutes and thirty seconds. After the filets are done cooking I set them on the table to let them cool. Next, I cook dried pasta in the microwave twelve minutes total. Then I cut the fish into bite-size pieces. Serve the pasta with salmon mix everything with salad dressing and a side of seltzer water.

chickenMeal number three: first I cook in the microwave boil in bag rice and set it on the counter to rest. I place six precooked frozen meatballs in a bowl, and I cook them for sixty seconds. I have always been a bread snob and have always bought great bread that can handle a meatball sandwich. Then I season the rice typically with oil and vinegar dressing and serve it all with a side of seltzer water.

34Thanks to WOSU television my education was extensive and varied. I saw these Italian, Mexican, Japanese and even southern chiefs cook foods from all over the world. My mom, of course, fed me well through my childhood as I always had three meals every day of my childhood. However, there were many times when she was still at work and would not come home just to make me a snack. That was abuse if you ask me. I ate great goodies during those times because I had the needed skills to cook and the required appetite to eat.

If all else fails, there is cold cereal.

With love from me to you…

long agoNearly two years ago a friend recommended that I start a blog because of the many unique emails that I sent her. Out of absolute boredom, I packed her email with my creative discourse. I needed a creative outlet of some kind, and a blog was it. In the very beginning, it was basic nonsense and evolved into inventive nonsense on this blog. I was trying to learn about writing using trial and error.

beginEventually, she recommended that I share my MS story on this blog. She told me that it would show others that my life has not always been sunshine and smiling faces. It could also indicate to other MSers how things will get better if they simply hold on. The idea of sharing my story terrified me more than anyone could ever imagine. With the proofreading skills of her and her husband, my writing got the help that was required. I was telling the story of my dark beginning and how that changed significantly for the better.

I have always hoped that my blog would be helpful for people living with MS and others living with a variety of debilitating illnesses. My additional wish is that it can be a window for those without MS to get even a slight sense of what life with MS looks like. I desire that people can see the funny through the fear and how a positive attitude makes everything manageable. I even make a concerted effort to both never complain and to always wear a smile while in public.

After I felt comfortable with writing, I shared my untold MS story in my early blog days in January of 2018. After fifteen months I have received several positive MS stories that astounded me. Little did I know that my ramblings about my MS life could or would touch anyone in a meaningful and life-changing way. I merely wanted to share my story with others and was not expecting very much in return because the initial intent was more about therapy for me. I honestly did not think much of my writing but was told that people with multiple sclerosis might find my experiences helpful. This reality shows me that no matter how little I think of my writing it is beneficial to others.

gbAmazingly, for the past several months I have also been a guest blogger for a national MS magazine online edition. I sent my untold MS story to an MS magazine to ask about publishing the story in hopes of helping others. They told me that they appreciated my story and explained where it would fit in the magazine in time. This woman then asked me if I would be interested in being a guest blogger for the magazine and explained what it would entail. I enthusiastically accepted the pleasant proposition.

In recent weeks I have received several messages or heard from a friend of other MSers who read my blog. Their stories also had dark beginnings, and it astounded me when I was told that their stories turned out positive because of my blog. They were lifted out of their funk or personal situation of darkness from reading my blog. My story of continual perseverance touched these struggling and lost individuals in a meaningful way.

expAt that time I did not know what to expect for this blog, so I kept my expectations low so that I would not be disappointed. I am incredibly moved and honored that my blog writings have positively impacted the lives of other MSers. I will continue to write, and I hope that my blog continues to make a difference in the stories of others.

Make a difference in someone’s life; it takes so little and means so much.

With great power comes great responsibility…

lost brainI slept horribly the other night and decided to sleep in because a tired brain is a dysfunctional brain. I had nothing planned that next day to wake up early for and realized that this would be a great day to be lazy. I am not sure what caused my unrest though I lay all night with busy mind syndrome. Sadly the chaos that was to ensue would not allow the extra slumber that I so wanted. This terrible technological turmoil would not allow the excess rest to calm my brain that I desperately desired.

From a very young boy, my mother was relentless in the idea of not burning daylight. I would stay the night with a buddy, and as young boys do, we stayed up until at least three in the morning. Inevitably my mom would show up at eight in the morning to take me grocery shopping with her. The idea of a snooze button was like a unicorn; it did not exist in her life.

The Boy Scouts also fostered our sleepless behavior when we went camping. They allowed us to stay up until the wee hours of the morning. Although we were able to stay up late, we also had to rise early to start the day together. No matter how tired we were, no snooze button was allowed to help us.

The Marine Corps continued to maximize this behavior of inadequate sack time. They wiped the idea of the mythical snooze button from anyone still holding onto this unicorn concept. Zero dark thirty was our typical wake-up time and even earlier on training days.

sneeeeezI am such a light sleeper that if a mouse sneezes in my living room, I say “blesses you.” All of that being said my motto has always been to hope for the best but plan for the worst. However, technology has a habit of modifying your ideas no matter your goals. I never want there to be a chance of oversleeping. This desire of not wanting to be late is of the utmost importance. I stagger my morning alarms so that if one does not work the backup number one or even number two will wake me.

While trying to sleep in the first alert in the morning were my lights that come on at ten percent power. They gradually get brighter by ten percent every sixty seconds or so. Keep in mind that I am a light sleeper and this is all that I need to wake me from my deep sleep coma. All of the lights in my house would hit maximum power in ten minutes, so I quickly turn the lights off and close my eyes to revisit the Sandman.

Fifteen minutes later my Google home begins an alarm sound. When my Google home alerts me, my response needs only to be vocal, and I do not need to move. Annoyed I wake up and loudly tell this tiny tech “ok Google stop!” The problem is that I must shout during the lull in the sound especially when I am waking and in a torpor state. Once the siren sound stops I close my eyes and try to return to my dream once again.

Keep in mind that it can take the average person twenty minutes to fall asleep. However, it can take the body an hour and thirty minutes to slip into restful REM sleep. Needless to say by this point I had not gotten the needed extended sleep for which I was aiming.

smart techTen minutes later the alarm on my phone began to shriek and shout to wake me. When my cellphone alarm rings I must physically manipulate the phone to turn it off. This task is daunting because for me to roll over and grab my phone is a challenging task since my body does not always cooperate. I fight with my body for several minutes making me wide awake, and I remember that this is my last alarm for today. Settling back into bed I close my eyes to finish my dream of running a marathon as I stood in the winner’s circle.

Ten minutes later was the introduction of the straw that broke the camel’s back. I hear the three small motors that open my living room blinds. They are set to open every morning bright and early at seven in the morning. I also begin to hear chirps from my phone reminding me of various upcoming tasks. Obviously, today I will not be getting the needed peace for extra hibernation.

offThis day reminds me that although technology is usually fantastic, it has its weaknesses too. Most importantly you must look for an off button for those times when you require extra respite. If only one of these alarms sounded that day, I could have continued sleeping even with the motors of the blinds whirring. Alas, I will have to try to sleep-in next month.

I cannot go to work tomorrow. I fractured my motivation.