No illness indictment this time…

I have fought with MS for nearly twenty years through an undeterminable tug of war. This major battle rages on as it leaves deep-rooted physical, mental and emotional scars with no care for me. Multiple sclerosis may catch me off guard or by surprise at times but I usually rebound much more quickly. However, in its world full of the unknowns and uncharted territories being occasionally flabbergasted is an absolute probability.

aaa top dogI say all of that to say this; the real shock is that multiple sclerosis is not always to blame for my disheartening debilitating dilemmas. This situation is not a fight over the territory of my body and MS reigns as Top Dog. I can and have been sick with other medical issues though they have been few and far between. Typically they have been minor issues, but the following story shows that sometimes extreme Non-MS cases occasionally arise.

I woke up on Tuesday, and something felt way off. It was like I had a loose wire and my brain signals were not connecting. I tried to turn onto my side to turn my alarm off causing a challenge of massive proportion. After five minutes that dastardly decision was done. My alarm finally was silenced. This issue again alerted me of some physical error that was causing complicated chaos.

The procedure that follows is typically a simple one as I shimmy on my back to the edge of the bed. I then smoothly sit up pulling on my bed covers to aid my rise before I do my fling and flop onto my chair. However, this day I was not so lucky. This time I was going to have a rude awakening.

I shuffled with great difficulty to the edge of the bed. I grabbed my bedcovers as usual and pulled hoping to again pull myself to a sitting position on the side of the bed. My muscles were excessively weak and I did not have the strength to pull myself upright. I continued to lie on my back at a perfect distance from the foot and head of my bed as to not allow me to grab the headboard or footboard. I fought for an hour rolling side to side trying to lunge myself upward and into a sitting position. I looked like a turtle on his back with no chance of recovery.aaa turtle back

aaa grmblingEventually, I realized that my stubborn, bullheaded ways could only take me so far. I decided that I needed to call for help, but this was in the daytime meaning that everyone was at work. Let me state for the record that I have never required calling anyone for help. As an independent, self-sufficient guy I never want to be that needy guy that people dread talking to. I never want people to see me approaching and dreadfully wonder “what does he want this time?” However, sometimes unexpected illnesses can eliminate all other options. Hopefully, the goodwill seeds that I have planted have grown enough to help win others over. Maybe others will be willing to overlook this new blemish on my record.

I texted a friend from down the street I knew that he was retired and hoped that he was home. He arrived a few minutes later and contemplated this confusing conundrum before him. Sitting me up would be easy but getting me into my wheelchair would be a difficult endeavor. After some struggle we had success as I was now sitting in my wheelchair.

Properly positioned, in my wheelchair, I was faced with the new struggle of self-propulsion. To depend on me on any typical day is easy though today is not normal. I could not tightly grip my push rims making pushing myself an arduous task. I slowly and carefully pushed myself into the kitchen and got some water. Thankfully my friend was still there so that he could open a protein bar for me of which I ate very little of by the end of the day.

He stayed with me for an additional thirty minutes or so. I explained that to eliminate the risk of a fall I would not move. However, just after he left, I spilled my water onto the floor, and as I tried to clean it up, I flipped out of the chair. At this point, my phone was on the table entirely out of my reach though I struggled to get it with no success.aaa no move

aaa cant get up[Then I remembered that I could make phone calls using my Google Home device and my voice. “OK, Google call…” I shouted. It asked me if I wanted to call his home or cell phone. We live in pretty amazing times so there was no need to own life alert although I had fallen and I could not get up. You have to be able to see the humor in everything in life.

He came back from his very short respite and was befuddled and bewildered by my new bearings. Sitting me upright in my bed was much easier than picking up 140 pounds of dead weight and putting it in my wheelchair. We struggled for several minutes trying to position and then reposition me and my chariot for the best floor to chair lift. Thank God he has a strong back as success came after ten minutes of this terribly torturous tussle.

My friend left again, and I did not move until another friend came to assemble some furniture that evening. I called 9-1-1 at about 6:40 pm when my other friend showed up. I imagine that he was pretty surprised because when he called to let me know that he was on his way, I used all of my reserves not to sound sick. After what seemed like forever the ambulance showed up and started to check all of my vitals and thus began the trip to my first hospital stay.aaa 911 2

Listen carefully to your body because it will not wait for you to hear it

The final countdown…

This is my latest blog for the MS Association blog website. I decided that I would save everyone time by reducing the needed clicks for anyone who is interested in reading it. This means that it is posted here and there is no need to visit https://blog.mymsaa.org/7-things-for-MS-independence/ to read it. The given topic was New Year new beginnings so sit back relax and read my twist on this MS topic.

We are in the time of year that we hear many top ten countdowns. These top charts rank everything from music to cell phones and from movies to kitchen equipment. Here are some of my own top things in my life. Of course, I will not be saying goodbye to these items unless something better comes along. As for these irreplaceable items in my life, there is a bountiful list and here are seven.

aaa-wheelchairLet me start with my wheeled chariot. Without this magical manual mechanism, I would be bedridden and merely be waiting for the end. It helps me to stay active by requiring me to propel myself from one place to another. It is essential to keep the body in motion, and my chair demands that I do just that.

My microwave helps me to keep my independence. This programmable product provides by allowing me to cook the sustenance that I need to stay alive. I also do not have to stand above it to peer in, meaning that my microwave cooks at my eye level. I have even figured out how to cook dry pasta and not merely reheat it. I love spaghetti.

My smartphone and internet banking are essential for keeping my self-reliance. I am a private person with problematic penmanship. Internet banking eliminates the need for check writing to pay my bills. It also means that I do not need to wait for my monthly statement to verify my banking activity. aaa phone

My computer and smart technology are both paramount to my true freedom. When connected to my smartphone or computer all technology that I use can be activated even from a distance. It also makes these tasks simple to complete. Wi-Fi connectivity means that I can be anywhere in the world as long as there are internet and Wi-Fi.

aaa musicMusic of all genres is vital to my total well-being. With no music the silence of my house is deafening. As I roll around my house, I do not merely want to hear the noise of the television. I enjoy the rhythmic and melodious sounds of music echoing throughout the halls of my house.

The community center swimming pool and my swim instructor are imperative to my life. The pool has made me a stronger person both physically and mentally. This strengthening ensures that my daily tasks are possible for both brain and body. My instructor taught me how to use the pool fitness equipment to build the muscles that I depend on daily.aaa-pool

Although not things, my “fortitude and tenacity” are fundamental to my existence. My attitude and ability to “adapt and overcome” the adversities that are before me have made me a better person. It has made every breath that I take exceptional and worth having.

The above is a list of the “top seven” things in my life. These are just a few of the things that I cannot live if I did not have in my life. As you can see if any one of these items were not in my world it would be much more laborious and burdensome. As we enter into the New Year, we have many new and exciting opportunities. Are you ready?

Find the things that can jumpstart your journey to the independence that you deserve.

*Scott Cremeans lives in Central Ohio. He is a US Marine who was diagnosed with RRMS in 2001 at the age of 27. Scott has successfully managed his MS symptoms on his own with his faith, friends, and humor. You can read more about his MS journey by visiting his blog http://www.myramblings.blog where he muses about life in the slow lane with his literary wit.

SORRY FOLKS…

To the readers of my blog:
I am sorry that I did not post this past week, but I was ill -to put it mildly- and in the hospital for four days. I do have MS but funny enough it was not the cause of my time of torturous trauma in the hospital. I foresee a blog or two coming out of this pondering and perplexing puzzle. I do have a new post ready for posting on Monday or maybe Tuesday. I hope that life is treating you all well.
Scott

The strengthening…

It is unquestionable that I have had a few challenges and struggles as of late. However, I can tell that my arms are getting much stronger. Movements that used to take me extreme amounts of energy now happen exceptionally quickly. My legs still spasm shaking like a leaf in a windstorm, but my upper body is getting stronger by the day.aaa strong arm

I used to have a tough time transferring into and out of a sedan. I simply did not have the correct muscles to make it happen without great struggle and help from others. My wheelchair and the passenger seat were at similar heights. I still could not get close enough to make a smooth transition. The lack of closeness is due to my chair being longer than most causing the distance between seats to be nearly a foot. Without the needed muscles to transfer that gap might as well be The Grand Canyon.

A friend and his wife recently picked me up for a group dinner that we were attending. They have a small sedan loaded with vegan leather upholstery. For my abilities, I try to avoid cars with any form of leather when I can. These leather surfaces for me tend to be slicker than a wet bar of soap covered in Vaseline.

When they pulled into my garage, I came out of the house as jovial as usual. I angled my wheelchair next to the passenger seat and pulled as close as I could get. Using my hands, I placed my feet precisely positioned for proper posterior propulsion. aaa footplacement I launched my derriere onto the passenger seat with extreme accuracy. This point is when the slick seating surface can become a problem. I use my hands as a brace yet this slippery material causes my hands to slide out from its bracing position repeatedly. This last part would take several minutes, and I did not want anyone to have to wait on me. My friend at my request simply grabbed my legs one at a time and placed them carefully into the car. I then belted myself in and away we went.

aaa chair 2 couchWhen my wheelchair is at a higher elevation than the seat that I am transitioning from is when the real struggle begins. Transferring from my couch was one of those terribly turbulent times. Not to mention my chair has to sit perpendicular and not parallel to the sofa. Both of these situations make a transfer trickier than catching a magician when hiding the rabbit. However, as of late this couch to chair movement is more straightforward than first-grade math.

The last sign that I am getting stronger that I will talk about in this blog is my speed. Now when I swim laps, I move faster and farther and can hold my breath longer than ever before. I swim faster and can get to the other side quicker.

I thought that after my swim challenge to raise money was over I would stop swimming laps. However, I now swim laps for the health of it, and I am thrilled that I keep it up. I bought myself a pair of webbed swim gloves and have been swimming harder ever since that purchase. The resistance of the gloves in conjunction with my pushing harder has strengthened my upper body tremendously.aaa swim gloves

As you can see getting a stronger upper body is the name of my game. My new water training is as follows: thirty minutes of trying to move my legs as much as possible. The next thirty minutes I spend swimming laps and doing several weight-bearing squats. The following half hour I do mild leg movements as well as rest. Then it is time for fifteen minutes of designated disciplined dumbbell drills. Lastly, I participate in the water fitness class for the last forty-five minutes. My fitness routine lasts for two and a half to three hours.

Perseverance is failing 19 times and succeeding the 20th

Adapt and overcome sport style…

Adaptive sports have become very popular. We have come so far in technology that what was once impossible is now possible. Great minds have gotten together and figured out how to make things work correctly specifically for the disabled. We have all heard the line “there’s an app for that.” Now it seems that we can say “there is an adaptation for that.”

aaaa-hand cycleingAdaptive sports include things such as surfing, kayaking, skiing, skydiving and more. It was explained to me that no matter your talent level and abilities you can ride a bike with a handcycle. Not only can you kayak but if you have the needed skills, you can whitewater kayak. If you are willing, it is not out of the question to snow ski in Colorado with the best of the best. For all of these sports, you are limited only by your willingness to act and what the imagination can create.

I was told about adaptive sports several months ago. Then I recently put two and two together and realized that I am bored, lonely and shy. My shyness causes me to mess up every time that I have met single women. A great way to hopefully change that is to put myself in a situation that does not allow me to be introverted. These environments, where I need to depend on others, encourage me to communicate and interact with other people present. They force me to step outside of my comfort zone and enjoy the companionship of others. aaa-skiing

In my research on adaptive sports, I found that a person can travel all over the world to indulge in these athletic challenges. Every country seems to have their famous place to kayak, ski, or even bike ride. However, I will stay close to home as I do not have the “travel the world money” that is needed nor do I want to travel alone.aaa-kayaking

I was not comfortable in the water when I began water class nearly four years ago. I felt unsure of myself and unstable until my latest instructor began to encourage me to do more little by little. I started by clinging to the pool wall like saran wrap. Now I swim laps with no flotation device, and I feel incredibly comfortable in the water. I still need a noodle when doing standing exercises as my legs are as sturdy as cooked spaghetti.

It is incredible how things are connected. I have talked before about “the knee bone is connected to the…” That song can be used to explain all aspects of life. My fear of the water when I started caused my trepidation when attempting anything new. I am now so comfortable in the water that I do not even think about “going under.” The few times that I have made mistakes, I did not panic and recovered with ease.

This evolution of my skills reminds me that “practice makes perfect.” So no matter if I am kayaking or hand cycling the more that I do it, the more comfortable that I will get. It seems so obvious because it is that simple.

I feel incredibly comfortable in the water my next step seems inevitable. My next logical move is to track down a place to learn to kayak. I did a lot of research including watching several videos on Youtube. Let me tell you that those wheelchair users do some spectacular things in a kayak especially in whitewater. The major obstacle that is currently in my way for this new stage of my life is transportation. There are no kayaking destinations that I know of where I can take COTA Mainstream. The other puzzling question is will they allow a kayak on the bus?

It does not make sense to buy any of the needed equipment yet. The significant cost will be the kayak itself as a decent kayak will cost nearly a grand or more. Then there are the mid-priced items like a helmet, life jacket, and the paddle. I am sure that I could find a cheap helmet and life jacket at many stores. However, these items will be protecting my life so I must spend wisely when it comes to these items. Lastly, I am sure that there are probably small ticket items that I do not know of yet.

aaa-surfingI have always said: “do not tell me that I cannot do something.” With time and effort, I will find a way to make them happen. I was challenged to do a 5k in my wheelchair, and even though others doubted that I could, I succeeded. Some said that I could not do three miles of swimming yet I swam eight. There may be obstacles in your path, but you decide to allow them to stop you or not. The question becomes how badly do you want it? How much are you willing to sacrifice to accomplish the goal?

Do not let life limit you. Find the adaptations that will make you live better and make it happen.

No object of pity…

Friends and even family can occasionally act funny when it comes to the unwell. They seem to feel entitled by proxy to the term of disabled. Some of them can even get bombastic when they come to the defense of anyone in a wheelchair. These people can periodically become overly pro “accessibility” to the point that it becomes excessive.

cashierA friend and her husband were taking me to a fast-casual eatery for lunch. There was a light rain coming down that seemed to cause people to drive erratically. As we pulled into the parking lot, there was construction equipment all around. The trucks and dumpsters blocked many of the parking spots. There was one accessible parking space where someone was illegally parked. This lack of convenient parking caused us to get rained on as we rushed to get inside. We moved as fast as a herd of turtles stampeding through peanut butter, but we made it.

I am the kind of guy who knows that to find this illegally parked person is unlikely. Not to mention all of the stress that it would cause if we found them. I said it before and I will say it again: stresses and MS are like oil and water. This bad mix can create physical consequences that can put a stoppage to my progress for the day. I do not want to visit these significant problems, so I avoid the catastrophe causing concerns at all cost.

My friend went to the cashier, and with a vehement passion, she began to protest loudly. I tried to calm her down, but like angry Pitbull holding food, she would not let it go. I explained that the cashier is not the one to blame for our damp dilemma. I reminded my friend that her ferocious temper is scaring the young female cashier. She soon calmed down, and we eventually had a nice lunch. I imagine that my friends vociferating may have scared the offender who caused our wet woes to the point of never parking like that again. On the other hand, it may have accomplished absolutely nothing at all.angry pitbull

I accidentally left my accessible parking placard in the car of a friend of mine. He called to let me know that he had it so that I would not panic when I could not find it. “I can bring it back to you whenever you need. When do you need it next?” he questioned. “Bring it ASAP please because I will need it tomorrow morning” I explained. When he brought it to me, he explained: “I had to use it to run into the grocery store real quick to grab one thing.” hyandicap

I proceeded to let him know that there is paperwork that goes along with the placard to prove it is yours. I also made him aware that either of us could get ticketed for him using it illegally. This citation could be handed out even if he had the paperwork. I would get the ticket if I let him use it unlawfully or he could be ticketed if he used it fraudulently and without my knowledge. Then I reminded him that these tickets for illegally using these placards are no joke costing on average $250 to $500.

The question is will he do this again? I don’t know, but he will not be using my placard.

The COTA bus arrived one day with two drivers one of them being a trainee. I had seen the trainer before, and he made a funny, smart comment. He said something about getting myself on the lift in a jovial way and I laughed. The trainee was shocked and said, “Are you not going to push him?” “Why,” the trainer asked. “Because he is in a wheelchair.” She said morosely. He explained that just because a person is in a wheelchair that does not mean that they are helpless or unintelligent. “Many of them live independently without issue” he proclaimed. cota bus

I say all of that to say this: I want to be seen as just another guy out in public. I do not want people to see me as less than or different. I refuse to ask for special treatment, and I do not want people to feel sorry for me. Many people hold doors open for me, and I appreciate that. Depending on the timing I try to hold doors open for other people. I do not cut in line or complain when there is no handicap parking.

I am in a wheelchair. It’s not who I am. It’s just how I get around.

Reviewing the record…

The following is a review of the year of 2018 for me. Ten years ago my life was so dull that to say that my life revolved around TV would be an understatement. I knew that it was meal time not by my stomach growling but by what was on television. If someone called me and asked what was new, I could say that absolutely nothing was new. The following is a flashback of how my life has evolved in the past year.

In 2017 I began the arduous process of building a house with MI Homes. Let me tell you that the home construction ordeal is not for the faint of heart. Sadly, MI Homes did not offer me the help that I should have had so I was flying by the seat of my pants. The house was finished eight months after they broke ground. Just for the record, there are plenty of mistakes that I made from lack of knowledge. The home is not as good as it should be, but it is massively better than my old house was.house

blogI began writing this blog on the Word Press platform well over a year ago. I deleted the very early stuff as it was pretty superfluous to the writing process. During the next few months on the blog, I was writing both fiction and non-fiction stories. I was trying to learn about writing in all of its forms. After this few months of learning my blog changed a bit. I developed the new blog specific topic of my daily MS, and I began to phase out all other writings. As a result of my blog, I also became a guest blogger for a national MS magazine!

I started this new “my MS” focused blog by telling “My Untold MS Story.” The story is of my dangerously dark diagnosing days. Believe me when I say that it was a terrifyingly torturous tale to tell publicly. Currently, my blog is focused on my daily MS life and the issues that I and probably many MSers encounter and experience. No matter the subject line, I try to keep it light by adding humor. I do not let the blog drag-on by keeping it on point. I also post my blogs once per week.

Nearly four years ago I joined an arthritis water movement class at the local YMCA. I was hoping to get stronger physically, mentally and socially. Since the instructor did not know how to help me, I made up my exercises. I did the fitness routine that I invented while clinging to the wall like a barnacle on a ship. After a year of class two of the ladies in my class tried to help me periodically walk in the water. I continued to use the YMCA for two years while seeing minuscule benefits.

Then one day we had a substitute instructor who came from Prairie Township Community Center. She told us of the pool where she taught and recommended that we check it out. After we visited it many of the class members left the YMCA and joined the community center. This move changed our lives for the better and changed my life forever. pool

The instructor constantly encouraged me to get away from the wall and its security blanket impact. Within a few months, I no longer needed the wall for support as my water confidence had grown immensely. My legs are still as sturdy as bread ties meaning I need to keep a water noodle under my arms for better body buoyancy.

This past June and July I paid for a few private swim lessons. The instructor quickly found the things that I could not do and how to work around those challenges. By mid-August, I was comfortably swimming without the use of my legs or a flotation device. I swim face down and roll onto my back to breathe and then flip face down to swim again.

One evening I was on the MS Association of America (MSAA) website. I saw a swim challenge posting asking for others to help them raise money for multiple sclerosis. I thought to myself “I think that I might be able to do this.” I knew that I had time as I am in the pool for three hours three times a week. I decided that over fourteen days in October I would swim four hundred and twenty laps. I ended up swimming five hundred and fifteen laps totaling eight miles and exceeding my goal. All told I swam farther and raised more money for the local chapter of the MSAA. I did this in October in comparison with any other swimmer who was raising money. They made me the October swimmer of the month and put a photo and description of my story. award

So this has all lead up to a place where I am in a much better place mentally and physically. This blog shows what has been going on in my world as of late. I swim for two and a half to three hours on three days a week. I work on my blog most of the rest of the time. I have not had cable and only use streaming services for over five years now. So I do not watch TV as much as I used to.

Of course, no one knows what the future holds. My goal for 2019 is to keep my body moving by continuing to swim. I plan to research kayaking and other “extreme sports” (and I use that very term loosely) where I can get involved. In my condition overcoming my fear of the water has opened doors that I closed a long time ago. My only limiting factor currently is transportation. However, I will not stop attempting to do the things that I once thought impossible.

Growth is painful. Change is painful. But nothing is as painful as staying stuck somewhere you don’t belong.

picture test…

Dance of the X-ray and MRI…

The Veterans Administration decided to send me to an MS specialist. This civilian doctor wanted to look at my most up to date MRI that I had. “I have not had an MRI in over twelve years,” I said in a matter of fact tone. I explained to her that my last MRI was done at a hospital downtown in 2005-2006. I then remarked that the VA has copies of these images if you cannot get them from the hospital. I told her that they should be available upon her request. She decided that she wanted to get a new MRI of my brain.

To get the most accurate results this doctor sent me for this MRI at her facility. However, in my back I have four pieces of…I will call them metal confetti for a more fun term. Because of these metal pieces, they had to take an X-ray before the MRI to verify the location.

I was taken into an office for an abundance of check-in questions. The clerk verified that I was the same person who was in their computer system. She did this by asking me many verifying personal questions. Things could have gone much faster if she had asked me for my state ID. I suppose that there is a reason that they do things this way and I am not privy to that reasoning. The entire session in her office lasted about five minutes.

She then handed me off to a new person who had a tiny three-walled room/cubby. This medically trained individual began to ask me a plethora of health questions. She was trying to ascertain if I was healthy enough to get an MRI. The MRI contrast chemical has been in the news recently because it has been poisoning people. She wanted to verify my health and make sure that I would not also be poisoned. These questions gave her insight to the rest of my general health as well.

Next, I was taken to the X-ray and MRI preparation area. dungon I learned that I apparently do not weigh as much as I thought that I do. The medical staffers picked me up out of my chair and carefully placed me onto the bed. At that point in one smooth movement, one staff member removed my shorts. I had removed my shirt earlier. At the same time, another person adorned me in a hospital gown. They also took my watch and told me that they would take my gasses later. Lastly, they put an IV in my arm for the contrast chemical.

I was asked if I was cold and would I like a blanket. I said no thank you and the nurse double checked by asking if I was sure. When I said that I was comfortable, she came back with a blanket that felt like it was from an oven. I respectfully said thank you and proceeded to pull it down to my belly button and up to my upper thighs. “Is that too hot? Would you like a sheet?” she asked. “Yes please,” I said smiling. I was trying to hide my annoyance since I said that I did not want a blanket in the first place.

Then my Marine Corps training came into play with four little words: hurry up and wait. Sadly, they had no music playing, and there was no television in sight. Every once in a while someone would come in and annoy me. I say that because they would come in for twenty seconds ask a question and then leave. I was board out of my mind as I could hear their conversation happening elsewhere. I only wish that they had brought the conversation near me, alas I was not in their click.

The building that these images were taken in was an old structure. Everything definitely looked clean. However, the imaging equipment was on the lower level, and the surroundings looked dark. This is in contrast to newer hospitals that tend to be extremely bright and white.

They wheeled me through the halls and down the corridor and into a smallish room. The x-ray tech had a flat panel of some sort that was approximately two foot by one foot. Her mission should she choose to accept it was to slip this panel under my back and rump. She completed the task with ease. “Take a deep breath and hold it,” she requested. When I did, I heard a click. “Ok you can breathe now” she let me know. The image showed three pieces of this metal confetti-remember happy term. She was not sure if they would be impacted by the magnets in the MRI machine.

I was then taken back to the dark and dull area for more waiting. Sadly, I was not tired, so I could not sleep nor did I have my phone so no music, book or internet. There was only time for more waiting.

After what felt like several days I was taken ten feet to the MRI room. MRI They pulled the bed next to the table that slides into this giant magnetic tube. She asked me what type of music that I wanted to listen to. She put headphones in my ears as well as earplugs of some sort. The final task was to put a cage over my head and glide me into this narrow magnetic tunnel.

A minute later her voice came through asking if the volume of the music was acceptable. “This session will last five minutes. Squeeze the ball that I gave you if you need anything.” She let me know. Two seconds later the jackhammering sounds began. I realized that now I needed that oven baked blanket. There was enough of a cool breeze in the tunnel that I could have flown a kite.

When the banging ended her voice asked me if I was ok and if I needed anything. “Can I have a blanket please?” I asked “There is a cold wind showing signs of an early winter” I proclaimed. She apparently did not have a sense of humor and quietly said sure and covered me with a blanket. The entire scan was filled with more jackhammering. Peppered in the loud banging was her voice asking if everything was ok.

All said and done the entire appointment took three and a half hours. After the MRI they moved quickly to send me on my way. Without haste, they carefully removed the IV from my arm. MS has taught me to have the patience of Jobe because nothing I do is fast except when I race a turtle. However, one of the nurses got fidgety when I put my watch on as I was not moving fast enough.

I could tell that I was not moving expeditiously enough as she preferred. As we walked towards the waiting area, she kept asking me if I wanted her to push me. I pulled my big boy pants on and made it to the car all by myself. I even got into the SUV with no assistance or difficulty. I was very apologetic to my dad the driver because I did not know that the appointment would take so long.

“Patience is not the ability to wait, but the ability to keep a good attitude while waiting.”

57 minutes in purgatory…

I have been doing exceptionally well as of late. The problem with doing so well is that I have become uncharacteristically careless. Now I tend not to think before I move. Moving a little too fast, leaning a little too much or bending a little too far can cause significant catastrophes. The cleanup from one of these calamities can be very time-consuming.

The other day I was feeling especially good. This positive day was not a reason for the alarms to go off and the bells to ring. Instead, it should have reminded me to always be on the alert. The flashbacks of my problematic past should encourage me to watch every move that I make cautiously.

I rolled up next to my bed so that I could take my twenty-minute power nap. Transferring to my bed from my wheelchair has never really been a problem. The issue has always been when moving from my bed to my chariot. This bed to chair transition is a challenge because of not having the extra height from shoes. The lack of elevation having footwear when getting out of bed in the morning is what causes most of my falls. Although this slight elevation seems superfluous to most, it gives height at the precise moment that it is needed.

I have a folding style chair that sits at the head of my bed. At my last house, I used this chair to change after my showers, before bed and at wake up time. I currently use this chair mostly as a side table because I dress in my wheelchair and on my bed.

When I was parked next to my bed, I began my quick transfer procedures. I removed my feet from the footrest by placing them on the ground in front of the wheelchair. I noticed that my feet were not in a good position yet I did not correct this as it seemed minor. I scooted my rump to the edge of the seat of my chair to prepare for my simple fling and flop.

I have done this basic hop and drop of my derriere a million times with no issues. The problem this time was the illogically placed and uncorrected foot position. As always I placed my hands for proper push propulsion. I thrust my fists down to launch my posterior onto the new location. With my feet in the incorrect position, I twisted and landed face down on the bed. I was so close to the edge of the bed that there was nothing to grab onto for my recovery. I struggled to flip over and correct my position for several minutes only to lose the battle and slide off of the bed and onto the floor.

I have fallen off the bed before and most times I easily get back up. Most of the time I get into the chair at the head of the bed with proper body part placement. However, this time my body was not cooperating during my self-restoration.

I tried for fifteen minutes to get onto the chair at the head of the bed. My goal was to lunge myself onto my knees that are shoulder-width apart while leaning on the bed and chair. Once I am there, I would place my right hand on the chair and my left on the bed and simultaneously push my body up and turn. This push and turn would land my seat on the seat, and I would sit and rest for two minutes.

I am not proud of my behavior at that moment. After I had been struggling to get up for nearly twenty minutes, my language began to get colorful. I started to cuss out loud like a drunk Marine just before a bar fight.

I decided to forgo the folding chair route and instead attempt getting into my wheelchair. I began to shuffle around so that I could sit in front of my wheelchair to start my wheelchair lifting steps. I did this shimmy having significant difficulty. My legs were more of a hindrance than a help at this point.

As I shifted around to the wheelchair my legs did the spasm thing several times. This leg issue made any movements more of a struggle than wrestling a T-bone steak from a hungry dog. When I finally positioned myself in front of the footrest a new challenge emerged.

My new task was to get my posterior placed precisely on the footrest. This movement would be a difficult task if my legs were merely deadweight. However, they were in spasm mode and not cooperating by not bending. I placed my finally bent legs so that the knees were touching and my feet were shoulder width apart. Then I put my hands at the top of the leg rest and pushed myself upward. The goal was for me to push hard and lift my derriere and place it on the wheelchair seat.

Fifty minutes of continual struggle with two-minute periodic pauses for peace began to wear on me. At this point, I began to contemplate my life choices. Did I do something to anger the big guy? Was I putting enough positivity into the world? Do I give enough to charity? Do I give enough in general? Am I a good person? Although I have used foul language, I have never used the Lord’s name in vain. Does that count for anything? When you struggle like this, you think of everything.

My first attempt to lift my hiney onto the seat was a failure. For the next five minutes, it was: lift, fail, rest, reposition and then repeat. I finally removed the seat cushion lowering the goal height by four inches. At that point, my rear-end finally made it to my chariot. The last step was to get to the bed and transfer from the chair and replace the cushion. At this point, it was fifty-seven minutes of H-E double hockey sticks. However, I can call this massively malefic mission complete.

I left part of the story out because I did not want this blog to be excessively long. This challenging day reminds me that life with multiple sclerosis changes day to day. It says not to let consecutive excellent days lure me into a false sense of security. MS is my new normal, and any idea of “typical” is indeed nonexistent. I still occasionally question my life and I am not sure that will ever change. I am hopefully an okay guy and this was just a difficult day.

BREATHE IT’S JUST A BAD DAY, NOT A BAD LIFE.

Do I belong???

Just when I think that I am not going to have anything to blog about something new occurs. A bright light has been shined on someone’s ignorance, imbecility, and inanity. My faith in humanity has been knocked down several pegs. This belief backslide of my faith was caused by the total lack of sympathy of society. Lucky for me in my old age I have learned how to avoid confrontation in these situations.

At the fitness center where I swim there are three rooms specifically for changing. These changing rooms are available for families or the disabled to use for pool preparation privacy. In all actuality, anyone can use these three rooms as there is no bouncer at the door. There are a variety of needs that cause the privacy need of these rooms.

I sat patiently waiting as I ate a protein bar and talking to a friend. A woman and her daughter came out of the dressing room as they gathered their belongings slowly. She looked at the two empty rooms and then asked me “is this the only room that you can use?” This woman had a brusque tone to her query as she nodded towards at the room that they just left. I said yes and then nicely explained how the other two rooms do not work for my physical needs. “You can’t use the men’s locker room?” She questioned “I mean these are the FAMILY changing rooms” she proclaimed.

The confrontation flummoxed me, and I was speechless at her interrogation. Thankfully my friend who I was talking with spoke up. He was quick to speak as he could see the look of consternation that was on my face. He explained that the men’s locker room is not set up correctly for the needs of the disabled. They went round and round as he tried to be clear and concise in his explanation. This woman was done with the information clarification conversation, so with her feathers ruffled she departed abruptly.

I often want to ask all of the antagonists one straightforward question. How does MY situation impact YOUR life?

Side note: Let us forget about the disabled for a minute and focus specifically on the original purpose of the family changing room. The initial reasoning was to help parents who had children from the opposite sex in the locker rooms. These rooms were extremely beneficial to moms with sons or dads with daughters. That means that since she had only her granddaughter-by her logic-she should have been using the women’s locker room.

I have experienced interaction from people like that in the past. My problem with this situation is that at the pool I am well known. She could have asked anyone in the pool about the guy in the wheelchair. I even saw this specific woman many times over the summer. Never has she asked me anything about my changing habits. She has also seen me go in and out of the family changing rooms many times.

There was one time when another woman saw me in the passenger seat in an accessible parking space. The handicap placard was sitting on the driver side dash. She spoke into the open car window and complained by saying: “the placard should be hung on the mirror.” “No, the law states that it needs to be hanging on the mirror OR the driver side dash.” I quickly stated. She just walked away without apologizing or acknowledging that she was wrong and learned something.

I understand that she did not know that law. She should have said nothing although she felt entitled to say something. I again pose my query: How does MY situation impact YOUR life? I have seen people question those who park in accessible parking spots many times. “You are walking fine. Why are you using handicap parking?” They say. “Because I have a degenerative disease that is very contagious so come a little closer” someone could say in jest.

I feel that in America people feel overly entitled. They seem to involve themselves in things that they know nothing about. But for those who want to be sensitive and helpful to those who are challenged, yes, say or do something if someone is being attacked. Stand up for someone who is being picked on, abused or devalued. However, say nothing if you know nothing.

Wise men speak because they have something to say, fools speak because they have to say something.