On a brisk October day of 2001, Doctor Cook called me into his office. I waited for him, and I sat on the padded exam table as my trepidation made me ponder the worst-case scenario. When the doctor came in, he pulled out and sat on a wheeled metal stool that squeaked as he rolled towards me. In a calm and clear voice, Dr. Cook said, Scott, you have Multiple Sclerosis. I could not have imagined what was to come as the next two years were hectic, chaotic, and had me drowning in confusion. I would soon learn life is ever-changing as this tumultuous filled pandemonium became my new normal.
Right away, the doctor put me on an intermuscular injectable interferon, an MS medication. Genuinely I am not too fond of needles, yet at that time, all MS medications were injectable, so my fear of needles did not matter. I began doing a lot of research on MS and found everyone had a cure for this autoimmune disease. Let me let you in on a well-known secret about MS; there is no cure for Multiple Sclerosis. However, I found many scammers who usually wanted you to buy their product. They would sell you special tonic water made from the tears of butterflies or some such nonsense. This pointless potion is guaranteed to deplete your savings account and make theirs swell like a deer tick.
The internet and I had a close relationship for a long time after my diagnosis. I felt I needed to learn as much as possible about this maleficent monster preparing for the fight of my life. I spent hours that turned into days on the internet, trying to soak up MS knowledge like a sponge. On my quest, I quickly became educated about the shysters and charlatans that are out there ready to take all of your money. I was not about to give away any of my hard-earned coins to some low down swindler.
I felt like someone threw me in the deep end of the wave pool, and I did not know how to swim. Multiple sclerosis symptoms were smacking me around like waves from all sides faster than I could move. My eyesight went haywire, and I became legally blind, although I could sort of see causing constant consternation. I woke up one morning, and my legs were as unsteady as a newborn fawn forcing me at times to drag myself across the floor. Sometimes I had to military craw to the bathroom and somehow get myself up and onto the commode. At times while driving, my legs would be as useless as the ay in okay, forcing me to control my legs literally with my hands.
Since I worked as a draftsman, and vision of details was paramount to my job, those crazy symptoms forced me to stop working. I also had to stop driving as using my hands to physically grab my pant leg to move to the gas or brake pedal was unsafe. My body was simply going crazy, and I did not know what to do or if there was anything I could do. It seemed like every day, my body was fighting me and not letting me get up to defend myself brutally punching me blow after blow.
So I was now unemployed, which required me to live off of my seriously small savings. Once I moved out of my mom’s house after high school, I never again asked anyone for money. I now had to become creative in my accounting to make my bank account last as long as possible. I made sure my mortgage was on time, so I always had a roof over my head and a safe place to sleep. When it came to my utility bills, I paid one bill per month. January water bill only and February only electricity in March only gas in April it started over with my water bill.
Primarily I lived like the downtrodden wearing clothes that were old and made me look homeless. However, I had a few less worn clothes I could wear to my doctor’s appointments and not look excessively destitute. I kept my house at an uncomfortable temperature, to help keep my utility bills as low as possible. I had forty watt light bulbs in a few places around the house, meaning I walked around my house in near darkness most of the time. I am an Eagle Scout and a US Marine, so I was not afraid of camping in bad weather or with no heat or electricity. I did everything I could to keep from spending money needlessly.
By this time, my weight had fallen below one hundred pounds. My doctors would always ask me if I was eating, I would say I ate three meals a day. Little did they know my portions were kept ridiculously small to keep my food bill exceptionally low. I would count twelve biscuits or one serving of spoon-sized frosted shredded wheat cereal with powdered milk for breakfast. I may have a drained can of corn with some Italian dressing for lunch. Then for my evening meal, I would possibly have one cup of mac-n-cheese always drinking water because my water bill was always paid. If I got hungry in between meals, I would have a couple of multigrain saltine crackers.
My new MS life was not going well…

When I walked into the offices of the neurologist Dr. Cook sent me to, I was in awe of the beautiful facility. My primary care doctor offices were pleasant and clean middle-class America welcoming. However, this new doctor’s office felt like I walked into upscale offices on Saks 5th Avenue. When I spoke to the receptionist, she did not wear typical medical scrubs but instead a business blouse and slacks. I gave her my name and appointment time, and she handed me a clipboard loaded with paperwork to ask medically all about me. I had a seat and began scribbling away, answering their queries, knowing the doctor would soon ask the same questions in his initial examination.
Soon the doctor walked in and introduced himself as Dr. Michael Mann, one of four neurologists at his medical office. I told the story of the verbal sparring between my lips and tongue and the conversation complications it caused for me. He did not tell me what he thought my ailment could be, but said he would be sending me for various tests. This doctor of few words did not explain the tests at all, and I left without asking for details as I was apprehensive about everything.
The next test was an exam of my brain. The nurse had a swim cap looking device, which was prodigiously perforated and loaded with metal prongs. Wires connected these metal studs to a machine for reading my brain waves as she placed it on my head. The nurse took some gel and put it on the underside of each of these metal nodules. She then took the cap, placed it on my head, and began wiggling and digging each metal nubs into my skull. This nurse finally had me lie on a padded exam table in this dark room and said it was OK to fall asleep during the test. I had dozed off several times as the test was incredibly dull for me.
The following is my true personal MS diagnosis story, including how my life moved along in those early dark years. It is not a pretty story, but it needs to be told so others will know they are not alone on this MS battlefield. I am going to format it into a series of five blogs that each will focus on a different part of the story. My history proves life is not all rainbows and butterflies, but we need to play the hand that we are dealt.
I did not see it coming; after all, I was an Eagle Scout and a Marine who overcame every challenge I had faced. During my last year in the Marine Corps, I started experiencing little things that were a bit off. Looking back, I can see what the symptoms were, but at the time, I merely blew them off as clumsiness or stress. My buddy Mike and I were running and weightlifting regularly, so I continued to think these issues were stress-related. I did not know that something awful was stirring deep inside me, waiting for the wrong time to rear its venomous head.
My divorce also left me in a banking deficit nightmare, which meant I needed to work two jobs to get financially on stable ground. I worked five days a week as an engineering draftsman and many evening and weekend hours at a local Walmart. I began to climb out of this destructive alcoholic lifestyle and pull myself together both economically and mentally. Although it was robbing Peter to pay Paul at times, I got on payment plans and slowly got caught up.
I soon began to lift weights with my friend Mike, who had always lifted weights and looked the part. Steadfast in my determination, the weight started to fall off as I trained three days a week by lifting heavy weights and running. This new physical fitness went so well that I began losing weight very rapidly, too quickly, some said. I lost so much weight that I thought I might fall through a sewer grate. After my hard work, I became a svelte one hundred and a twenty-five-pound guy with a twenty-nine-inch waist losing seventy-five pounds in about a year.
At this point, my speech issues had completely and strangely disappeared. I debated whether I should follow up and see this doctor of neurology. On the one hand, it was inconvenient, time-consuming and I had to miss the work that I truly enjoyed. On the other hand, I had the insurance that I rarely used, so I decided that I would get some use. I also realized it would be one thing if it was just my family doctor, but Dr. Cook was now sending me to a neurologist. Something told me that this new doctor visit was probably pretty paramount.
Everyone has things they cannot do like, maybe you do not have the skills to cook and only have the ability to boil water. Possibly you do not have the talent to write a poem and barely can write a birthday card. However, most times in life you can learn those things by having someone show you or you can read how-to books. Depending on the skills you are looking for, you could take a class or even find instructional books at the library.
One of the most challenging things for me since the introduction to MS my permanent nemesis is asking for help. I know that most people with multiple sclerosis hate asking for help because it makes us feel weak and indolent. There are things that I cannot do in my house to live life and keep a clean and welcoming home. I have fought physically to change my sheets and make my bed clean, comfortable, and cozy. This mission has been unsuccessful, requiring me to find assistance from someone on a routine basis for many household duties.
Seven years ago, I began looking for a much lower cost, if not a free option. I thought I would have a quiet and quick quest, but it seemed endless as my list of conditions made for a slow hunt. I was beginning to have difficulty getting my laundry and myself up and down the slightly steep steps of my basement. This issue added one more task that needed to be done again, making my pursuit a bit more challenging. My search lasted hours each day and ended successfully after several long weeks.
When Shakira started working for me, she took the city bus for one hour to my home and one hour to return home. Her trip home was after working at my house for four hours, making an exhausting six-hour day for her. Her dedication to me and the job was more apparent when three months after starting, she moved even further from me. Her new place made a one-hour bus ride become a one-way two-hour sojourn that made me think her help would end. This new eight hour day was done once every two weeks rain or shine snow or hail, proving Shakira had a strong work ethic unlike many.
Everyone needs a little help sometimes even though asking for help is harder than jumping the Grand Canyon on a ten-speed. The people who do these types of jobs are some of the great unsung heroes in life and get paid very little. These individuals help keep their clients, or in some cases, friends lives in good working order. Without this assistance, our lives could easily fall into the dark ages and become a cluttered, disorganized pigsty.
Some people think MS is contagious, like a virus that causes people to fear and avoid us. Others believe that we have mental problems making them ignore and reject us. Some individuals feel multiple sclerosis is simply a made-up illness, so they want to shun us. However, MS is a real and debilitative medical condition that can ruin lives, friendships, and even families.
The other day I woke up on a swim day, and something felt a little off. I had a challenging start to the day, but I was not about to give in. I was moving slower with a hint of weakness in my arms. Thankfully I always plan for an extra thirty minutes or more for unexpected MS and other life issues.
I have been a member of my pool for over a year and never dealt with a debacle like that. I say all that to say this: there was an older woman in the pool, and her first words were you should get a caregiver. I let her know that I live alone and one hundred percent take care of myself and that this was the first time that I have ever had this happen at the pool. I told her not to worry if I show no fear.
When I was planning to move, my former neighbor Jeff said to me, “you should move into an assisted living facility.” “Why,” I questioned. “Because of…you know…your MS” he said sheepishly. I reiterated that I live alone now with no problems. I reminded Jeff that people live with this condition both alone and with families all of the time.
A friend Heather who also has MS was shopping and was using her walker. A little girl saw her and asked her mom, “What is wrong with that lady?” Her mom grabbed her and said, “Be quiet.” Heather went up to the little girl and nicely explained why she used a walker so that a little kid could understand. At that point, Heather looked at the mom and said, “I would prefer to be asked about why I use a walker than being feared.
These real-life stories show how people who do not know how to act or what to say can look bad. The lack of understanding and empathy makes some people double down on saying or doing the wrong thing. I think people act the way they do around the disabled because they do not know what to say or do, and I understand to a point. I mean, you may not know what to say but talk to us like anyone else you see in public. So if you see us smile and say hello and talk to us like anyone might you meet on the street.
I typically get my blog ideas from my life experiences as I muddle through my daily existence. How someone interacts with me or maybe has an attitude and verbalizes it gives me some ideas. I might write about a fall I had or how a piece of equipment helps me in some particular way. A few times, a TV show or movie has widened my eyes to an issue that has allowed me to feed the brains of my readers about MS. There have been times when a book and even a song helped mold a blog topic that made a difference in at least one person’s life.
In this seclusion delusion, we find ourselves in I am struggling mentally, physically, and even emotionally. My brain and my emotions battle with each other in search of any blog ideas that can help me educate anyone who still reads my writings. Physically my exercise options are significantly limited not only restrained by my lack of abilities but by the fact that I am alone. There is no one here to keep me accountable, and that fact allows me to limit what I do.
I try to eat healthier to avoid gaining weight so that seat to seat transfers are as safe as possible. I eat only three meals a day and do not snack throughout the day to again lessen the chance of my midsection swelling unnecessarily. I also eat on a schedule and limit the volume of my food to keep me from engulfing all the food I have. Lastly, I do not eat candy or sugary sweets I fend off fast-food, and dodge deep-fried meals as these all can help pack on the pounds.
I understand that this quarantine is hard on us, forcing us to do things and be places that we usually are not. I do not know about anyone else, but the consequences from this lockdown will have devastating setbacks that will last for years. This solitary confinement will still have such negative impacts even with all of my cautious preparedness. So I say to anyone reading these written words do you a favor and hope for the best but plan for the worst.
Everyone knows this Christmas song, but with a word twist or two, it can be played in the summertime for us MSers. As spring advances into summer, the outside temperatures jump up and down the thermometer like a pogo stick. This season change with its drastic temperature swings, is physically draining for most of us with multiple sclerosis. However, the summer heat can drastically debilitate the majority of those with multiple sclerosis.
It is common knowledge among those with multiple sclerosis, their families, and even friends of our heat sensitivity. When the summertime stampedes into existence, the various MS organizations begin to pass out cooling vests as well as tips to stay cool. For some MSers, this is not the only challenging time of year as the mercury in the thermometer sticks in the upper temperatures. Some of us are also impacted by the drastic swing of spring and fall, where the temperatures move inconsistently. This seemingly mild time of year for others is rough as the thermometer moves like the wings of a hummingbird after a triple shot espresso for us. This issue is not the entire spring or fall, but just as the season begins to roll into summer or winter.
I want to wrap myself in protective padding as my falls during this newly arriving season precipitously rise. Arm strength is essential for wheelchair users, yet the muscles in my arms become extremely weak. This weakening muscle issue is due to the temperature that rises and falls like the stock market and causes my transfers to be hazardous. For an ambulatory person, legs are the cornerstone for most daily tasks like standing and walking. However, for the average person in a wheelchair, our arms are our ambulation mode, and we need them to be in top form. We cannot depend on our legs to help at all because, for many of us, our legs do not work.
However, the horrific heat can cause us to fear the outside temperatures and dread leaving the house. Some MSers wake up feeling stiff and barely able to move all day while others feel tenacious tingling thru-out their body. The optic neuritis that many have tends to go haywire, possibly causing temporary blindness, which shakes us to our core. As our multiple sclerosis flairs in this inconsistent and chaotic weather, we fear the unknown of the MS monster. Many times we move slower, doing our best to muddle through our day at times, counting on our reserves to get us home.
We appreciate being invited to most anything even if our answer is no like maybe you are going skydiving. Most MSers will probably say no, but some of us would literally or at least figuratively jump at the opportunity to leap out of a plane. Quite possibly, you are merely going to have a family game night at home. That type of event keeps the activity level down, making the majority of us say yes to this less strenuous day more reasonable. You may also entice more of us with a trip to the movies provided you choose the correct theater. We wheelchair users do not want to break our necks as we sit in the front row, looking directly up at a forty-eight-foot screen.
I have shared the importance of keeping the body moving so often that I am sure people can spout my speech like saying The Pledge of Allegiance. I tell people so often I guarantee that some people are getting sick of my disgustingly dull diatribe. I remind them of the success of just how far I have come using fortitude and tenacity through my struggles. I tell people how my story of overcoming my adversities is meant to be inspirational and motivational. These tales of mine are not intended to be derogatory or accusatory of others.
An older woman and her husband sat next to me in the pool a while back as their granddaughter played in the water. Lisa and I spoke for about twenty minutes before I realized that she has a twin sister named Melissa, who has the same medical issues Lisa does. She explained how Melisa’s husband babies her by doing everything for her negatively impacting her daily life. He does not allow her to lift a finger, causing deterioration and atrophy, making the dependency on her husband more of a requirement. The longer you use a crutch of any kind, the more you will come to depend on the assistive device.
Simply walking outside down a few houses and back will have a significantly beneficial impact on one’s life. This short journey should be made once maybe twice per day to affect your total physical and mental wellness positively. If you do not want to walk outside, then walk around inside your house every time a commercial comes on. You get out of life what you put into it, so put in a little effort in and reap the rewards as you extend your life.
I hope my writing encourages everyone to get off the couch and begin even a mild fitness program. These stories remind us to move whatever you can as much as you can for as long as you can to slow the effects of father time. We must remember that any rust build-up comes from a sedentary existence. The truth is that “if you always do what you’ve always done, you will always get what you’ve always got.”
Just at the point when I think that I am not going to have anything to write about something new occurs. A bright light has been shined on someone’s ignorance and imbecility, allowing my faith in humanity to get knocked down a peg. This belief backslide of my credulity was caused by the total lack of empathy for someone. Luckily for me, in my older age, I have learned how to avoid confrontation in these silly situations.
I patiently waited while eating a protein bar and talking to a physically challenged friend who also found no benefit in the men’s locker room. A woman and her daughter came out of the dressing room as they slowly gathered their belongings. She looked at the two empty rooms and then, with a curt inflection, asked me if this was the only room that I could use? This brusque tone to her query felt snarky and, for just a minute, made me question if I belonged. I said yes and then nicely explained how the other two rooms do not work for my physical needs. Can’t you use the men’s locker room she continued with her terse tone these are the family changing rooms as she emphasized the word family.
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, and as she walked by, spoke into the open car window and complained about its positioning. She vociferously declared that the handicap placard legally needs to be hung on the rearview mirror. I then corrected her and explained that the law states that it needs to be hanging on the mirror or placed on the driver side dash. She just walked away without apologizing or acknowledging that she was wrong and learned something.
I think that in America, people feel overly entitled and involve themselves in things of which they know nothing. For those who want to be helpful to those who are being attacked or challenged then yes, say or do something. Stand up for someone who is being picked on, abused, or devalued. However, do not say anything if you do not know anything.
I previously did a blog on the topic of toxic people focusing on seven types of noxious individuals. However, I have found that some people do not fit neatly into only one category or one specific grouping. Instead, they are a smorgasbord of toxicity boiling in a caldron loaded with controlling narcissistic self-importance with a smattering of jealousy. Many times these poisonous people can even be marinated in drama smeared with a dash of exaggeration and are dictatorial.
Take, for example, my friend Brad who is a massively materialistic monster that often stretches the truth. When his parents died, they left him not much money but did leave him a nice average American house and two used cars. This gift has caused him to feel superior to others, claiming that their parents should have left them an inheritance as well. If you spoke to Brad, you would quickly understand that he only cares about others if there is something in it for him. He says that he is a Christian, but his thoughts belie him his words contradict him, and his actions prove him wrong.
I decided to keep Brad as a friend because I understand that I have a greater pull on him then he has on me. When we palaver, I sprinkle love, kindness, and compassion into all topics making sure that he walks away with no negativity from me. When he uses a bitter barb towards someone, my response is usually some positive affirmation loaded with benevolence.
Joe, as a guy who is in his late sixties, is very stubborn and set in his ways and not willing to accept the opinions of others. He is not willing even to bend his ideals to the possibility that someone else could be correct. I have no impact on him, so I have no ability to show him that there is more than just his way. These facts lead me to the realization that my health is more important than our fifteen-year friendship. I have made the decision to remove the cancerous cohort from the body of friends that I have. I am monumentally mournful at the loss but feel better that this stress will no longer impact my MS.
On the other hand, there are a few toxic people in my life that I have decided to keep around. I feel that the benefits of our friendship outweigh the negative aspects as I think I have a stronger pull away from the dark side. However, for our friendships to continue, I cannot and will not be the only one to acquiesce to the ideas of others. Some days I have to put me first and say to them it looks like today is not your day, so we are going to do my thing instead.