Gnarly dude, totally tubular!!!

Several doctors have explained that the MRI or Magnetic resonance imaging is the Holy Grail for patients with multiple sclerosis. Most doctors prescribe an MRI once yearly to search for new lesions showing the possible progression of MS. However, my doctor in Ohio, Dr. Connor, only prescribes an MRI when something significant occurs, as instructed by his mentor. That being the case, since my diagnosis twenty-two years ago, I have had fewer MRIs than the average MSer, with no new lesions in eighteen years.

My Floridian neurologist, Dr. Fein, wanted me to get an updated MRI to look for new lesions; my last MRI spot was nearly two decades ago. Unfortunately, Dr. Fein is just over an hour away, yet thankfully we can perform the MRI much closer to home. When scheduling the MRI, they told me it should take ninety minutes, but I should plan for two hours just in case. So I booked the magnetic photography session as soon as possible, four months, two weeks, and three days after the phone call. I kept reminding myself that time moves quickly and would be here before I knew it.

When I arrived on the day of my scans, volunteer Chuck quickly pushed me on what felt like a tour of the building. He wheeled me past the pharmacy, optometry, and even a few doors anonymously labeled with only room numbers. We ended our Australian Walkabout through the facilities as we arrived at a door marked Radiology. Chuck pushed me to the check-in counter, where I met Receptionist Audrey, and he abruptly left while I checked in and wheeled myself into the waiting room. “Hurry up and wait” is the military’s motto, yet this pleasant pause was pithy, and I then held for the next task.

After several minutes of sitting in the waiting room, Jim brought me to the camera control room. Unfortunately, I have four pieces of, for fun, let’s call them, metallic party flakes in my back, which require extra steps before an MRI. This additional work makes an x-ray mandatory before my first giant tube visit to verify the location of the metal confetti. Once they confirmed the exact positioning of the party favors, we could only then safely move on to the magnetic tube. Each MRI machine has different specifications for the allowances of metal, whether specific tattoos or welding residues.

As radiology techs Jim and Jenny helped me into the MRI, I explained my legs would minorly twitch and majorly jump. My plans were for them to lock or pin my legs down to help control the spastic movements ahead. Unfortunately, I do not think J and J took me seriously, and they left my legs precariously positioned freely to move wildly. I explained to them again, trying to preempt the dance scene that was sure to follow; I wanted to convince Jim and Jen, but had no success. This day will only go well if they heed my warning, but getting upset does nothing to change the outcome, so I stay relaxed, mellow, and go with the flow.

The first few minutes of the scan were uneventful as my legs were still, but I think it was “the calm before the storm.” It surprised the MRI twins when my legs began twitching and shaking, requiring a scan stoppage and a body readjustment. They started pinning my legs down to stop the movements by wrapping them in a blanket. For useless legs, they are shockingly powerful, and the blanket did not hold them in place. When Jim and Jen came in perplexed, my next suggestion was for them to stretch my legs to reduce their wiggle and jiggle. This attempt also did not last long at controlling my leg shifting, and we looked for another option to combat these flailing, fidgeting legs. It felt like an eternity while we continually stopped and started the scans as we struggled with my leg jerking.

After nearly two hours, we were halfway through the scans when Jim stopped the machine. He offered me the option to leave and return on another day to finish the second half of the scans. My reply was, “I’m game to stay if you are. I’m here now, so why not just keep going? Besides, it has to be better for you to get everything done at once.” So, with the continuous jumping of my legs, we resumed the second half of the scans, which took an additional ninety minutes. Jim explained how the Charleston dance-style leg movements shook my head and body, making the scans somewhat blurry.

Jim took me to the transportation pickup point when he surprisingly said, “Thank you,” with a smile I could hear, though he stood behind me. He explained how many people get furious when something takes an unexpectedly extended amount of time. I asked him, “If I yelled at you, would you have worked faster? I quickly answered myself and said no, but it had the potential to ruin your day.” “Had I raised my voice, could the machine scan faster? Again, answering myself, I said no, but it would have raised my blood pressure, and who needs that?” I shared how after my diagnosis, I do not know if I lost friends because of my attitude or if my personality was from losing friends. However, my thirties were a dark time for which I will never return, and I never want to revisit that attitude or mindset either. This knowledge means I stay Zen at all costs because life is too short.

Don’t Worry, Be Happy. Bobby McFerrin.

Tell me more, tell me more…

I used to feel shame and embarrassment when telling someone I had a caregiver, feeling like it made me weak and less than. Luckily, I realized that a good caregiver is priceless, and they have become a basic fact in my MS life, while several have even grown into genuine friends. So today, I will talk about some of the leading cast members in the movie called Scott’s Life. I unlock my front door when Brianna leaves after lunch and relock it at bedtime. I do this so that anyone can walk in saying hello, like Lenny and Squiggy in an episode of Laverne & Shirley. I like to be welcoming to everyone because no one was stopping by unexpectedly before my new Floridian life.

Brianna is my Personal Aide who assists me with everything and always has a smile and a positive attitude, even in an unpleasant situation. I often tell people she is a wonderful work wife who should wear a superwoman uniform because she is fantastic and a lifesaver. Brianna works weekdays for five hours, and upon her arrival, everything needs doing, yet when leaving, everything is complete. Constantly moving like a Mako shark, when she stops to rest, you can put a clock on it as within 90 seconds, she is up doing more. Brianna has undebatable, inexplicable, and unfathomable abilities, and her existence in my life is irreplaceable. She is the person I see the most in an average week, and if you think I am exaggerating excessively, then you do not understand. While yes, some are for dramatic effects, the truth is that the rest of my days are impossible without her twenty-five hours of work each week.

My next-door neighbor is Devin, who has cerebral palsy. Although his name sounds like “yachting with Devin and the other one percenters,” he has a genuinely down-to-earth personality. He is a great guy with CP and is funny; although he talks more slowly, his sluggish speech makes me think he is simply being thoughtful about what he is trying to say. These paced words are as opposed to those I know who have verbal diarrhea and do not care about getting their mess in others’ conversations. Devin would give you the shirt off his back, although because of his CP, he might not get his shirt off. Still, he would be willing. However, do not mistake his kindness for weakness; he would not hesitate to give a tongue-lashing to anyone who disrespects him or anyone with a disability. On the other hand, if you would rather talk behind his back, good luck; more people in this town know and love him than not, so speak at your own risk.

Then there is Devin’s mother, Dolly. This remarkable woman is always willing to help others whenever pleas persist, even to her detriment. Sometimes I have been in a pinch and needed help, so I called her and received aid quickly. I have always considered myself an old soul. For example, in my mid-teens, I could often converse with my mom’s friends many times better than those my age. Dolly and I get along and can chat extensively about any topic, issue, or concern. She and I do not solve any of the world’s problems, but we can have a decent conversation about them. Dolly will not think twice about verbally standing her ground in the vociferous defense of her son, Devin, or others with disabilities. Keep your comments to yourself because not only does everyone know and love Devin but Devin’s mom as well.

Alyssa is another person who helps me in the evenings and on the weekends, even though she is Devin’s caregiver. Strong as an ox, she has caught and picked me up, keeping me from falling, and gentle as a lamb, placed me back down. She is always sporting a smile, so having an enjoyable conversation with her is easy because Alyssa is also into music of all genres. So whether talking about Al Green or Meghan Trainor, our chummy chats make me think of caregiving less and friendship more.

My mom and stepdad are also highly beneficial and essential in my life. I live close to them, which is suitable for the convenience of visitation but disappointingly close. I do not want them to feel obligated to care for me, as I have lived independently since leaving High School nearly 30 years ago. It is important to me they can live their lives, and I live my life and occasionally interact for dinner or socialization. I love them very much, but this is their retirement, and they should enjoy every minute.

These five people are currently the most important and impactful in my life; each merit mentioning magnanimously. In Ohio, during the pandemic, I regularly went two weeks without seeing another human being making for a sad and lonely existence. However, that is far from the case in my new home state of Florida, as I now have very few days in a month when I see no one. I am happier in Florida, no matter the medical ailment issues, because friends and family make it manageable.

We are social creatures; people need people.