I haven’t known Bertha a terribly long time, but I didn’t like her from the start. I mean, sure, she started off fairly tame and she seemed inconsequential, but that was before she had even begun to show her true nature! Because of her, I have been in the hospital more times than I care to remember. She’s caused me to miss out on months of work in a job I once loved. Bertha caused me to leave several jobs – including that one – because she treated me so unkindly!
I may be getting ahead of myself, though…
My name is Kelly and I met Bertha on April 7, 2009. She appeared to me so timid and small that day. It was a dreary Wisconsin day, in the season that is an early spring and a late winter simultaneously, and the rain trickled lazily from the steel gray clouds that felt sadder than they felt angry. Honestly, I’m not even sure if that memory is accurate, or if the eleven years of dealing with Bertha have simply recolored them monotonously. Other than my initial introduction to Bertha, it was a typical day off from my retail job, which really meant I wasted hours, mindlessly watching television and playing one of a multitude of games on my phone while also consuming copious snacks throughout the day. There was nothing else remarkable about that Tuesday, so I am actually quite relieved I don’t have any vivid recollections from the day my life would be forever changed.
Perhaps I should begin with a little background into what I was before Bertha so it will help you understand just how much she was able to impact every aspect of my life, in little more than the last decade. We’ll come back to Bertha.
I was born, the youngest of K and B’s three daughters, in May of 1981. My oldest sister, Ko, was born in May 1975 and Kj, the middle child, joined her in March 1978. (My parents planned us all nicely, didn’t they?)
I realize that it seems a little odd to mention birthdates of my family at this point, but I assure you, these bits of trivia will give you more insight into my personality and maybe some of my beliefs. For instance, would you believe that I’ve been stubborn since before I actually graced this world with my presence? My mom was told by Dr. A that they expected my birthday to be around April 20. Fun trivia: it’s the first day of my astrological sign, Taurus. I only mention this because it is where my argument for my fetal stubbornness begins – and ends. (This claim is in no way an official, scientifically-backed claim; it is merely an observation which makes absolute sense in my life, though I don’t fully believe in astrology.) My birthday is instead May 20, the last day of Taurus, which makes me one overcooked bun in the oven! I had a full head of hair and was already losing my first layer of skin upon arrival. It was also the beginning of the many frustrations I caused my poor parents to endure throughout my life, but we’ll get to that in due time.
Back to our family birthdays: my late arrival screwed up several “almost patterns” my sisters had staged so perfectly for my arrival – if I came on my mom’s projected due date. So, we could have had May, March, and April birthdays, but I thought it more appropriate to line up our family of five’s horoscopes instead: Aquarius, Pisces, Aries, Taurus, and Gemini. One of my sisters was born at 10:01 p.m. and the other at 11:01 p.m. What about stubborn Kelly, the anti-morning person? Well, naturally, I was born at 8:36 a.m. I am s-t-u-b-b-o-r-n! I insist on doing things my way and on my terms. But hold on, we’re just getting started!
When I was sixteen, Kj and I were bridesmaids in Ko’s wedding to my brother-in-law, S, whom she had been dating for around four years prior. Five years after their nuptials, Ko and I stood up for Kj’s wedding to my brother-in-law M, after – you guessed it! – roughly four years of dating. (Since I was the tagalong baby sister, this means I have known both of my brothers-in-law from young ages – I was going on 13 when S first met our family, and was going on 17 when M was introduced.) You guys, these two are much more like protective older (blood-related) brothers than they are “just” my sisters’ husbands, and I am blessed! Anyway, we were still on the topic of my blatant disregard for possible family patterns. Well, as I write this, I have never dated anyone longer than about two years, have never married, and have zero children. Since I will celebrate my 39th birthday this May, I’ve only missed setting their “almost-pattern” by approximately thirteen years (and counting).
The next weird near-pattern numbers I will most likely ruin? My Dad’s parents were six years apart in age, like both of my sisters and their respective husbands. My Mom’s parents were two years apart, like my parents are. Interestingly enough, I mostly have dated guys my age or within 2 years of my age, with only a couple exceptions (and completely unintentionally, I assure you). At this rate in my life, who knows if I’ll ever even get married! I could continue, but I won’t bore you with more of the random thoughts I’ve analyzed over the years with regards to my stubbornness (and my need for individuality). You get it by now, right?
Great! Because another very prevalent trait of mine is my nerdiness. I have always loved school and learning. When I was still too young to attend school myself, my sisters would come home on the bus and play “school” with me. I definitely couldn’t give examples of those days, but I know they made it fun for me. I have to give them a lot of credit for my ability to read at the age of four, because they certainly had a huge role in developing my love of learning. I am unashamed of being called a nerd or a geek because that is the furthest thing from an insult, in my opinion – I wear that badge with pride!
In fact, I was the kind of nerd who would write book reports and research papers on my summer vacations; the geek who still enjoys calculating correlation coefficients (among other statistics) to gain further understanding of the relationship between variables. I love learning new facts about players I love to follow, especially when they’re setting new records or approaching existing records. I am the kind of learner who seeks out answers to random questions that appear in my thoughts and then, in finding the answer to the first inquiry, I come up with subsequent questions and answers to those questions and repeat this process until I’m wandering aimlessly into the bottomless rabbit hole I created in my quest for knowledge. If it sounds exhausting, you’re right, it is! But it is also very rewarding when I can put that new knowledge to use, so I unapologetically continue my lifelong learning.
I am also a contradiction, because I am just as motivated as I am lazy, as physically healthy as I am damaged, as mentally tough as I am emotionally stunted (in many ways). If you’ve ever been frustrated with me for my indecisiveness or my inability to learn life lessons the first time, then I promise you that there is NO other person on Earth who is more frustrated with me than I am! Thankfully, though, my mission has always been to improve myself a little more every day.
Part of improving me has been deciding who I truly am. I mean, I’ve always been Kelly, but many versions of Kelly have existed throughout my lifetime. Several decisions in my life have led me to becoming a different “me” than what I envisioned when I was younger. Every choice I made led me further and further from those empty promises I told myself back in high school. Back then, I was going to get my degree in accounting, get married as a virgin, and start a family with my perfect husband. (My dream job was actually to be a stay-at-home mom to as many children as I could bear!) Instead, I dropped out of college after my first semester, moved home and worked a few years in the hospitality industry. September 11, 2001 changed how people were travelling, so it wasn’t long before I enrolled at the University of Wisconsin – Stout, earned my bachelor’s degree in psychology and worked mainly in restaurants and retail.
Fast forward to today and I am just a little more than a year until my fortieth birthday with no husband and no children – a spinster, if you will. I recently came to an epiphany regarding my many contradicting traits: I had allowed the world to create me how it saw fit, what others saw fit for me, and I had failed ME – the younger, more naïve, happier me, from long ago.
Instead of working toward what I thought I wanted, I chased that illusive “love.” The one that we’re supposed to want, the one we thought we deserved. I had spent the 20 years since high school, stuck in an endless loop of bad relationships and sometimes long stretches of single-dom and promiscuity. Einstein himself could have used my entire love life as a textbook example of his definition of insanity! I was seeking something outside of myself and therefore outside of my control, instead of figuring out what I wanted, what I believe, who I really wanted to be, and what type of work would be most fulfilling to me and therefore make me happiest. What I failed to recognize (for far too many years) was that I only needed to learn how to love myself – the good, the bad, and everything in between.
Telling my story to others helps me to learn more about myself because I am able to put together the pieces of the puzzle – the lesson(s) I should’ve learned during the experience(s) – but my thick skull, stubbornness, and indecision interfered. Introspection, for me, is necessary to truly learn from my experiences. I would imagine it is crucial for nearly anyone looking to improve themselves, but my personal struggle is that I need to have it said aloud to me. I have begun speaking to myself audibly more often. I may look crazy to others, but that is none of my business. It is how the life skills actually sink in and stay. To make matters harder, my emotional maturity does not match my intelligence quotient, so I just do the best I can, playing the cards I was dealt.
This all brings me back to when I met Bertha. In the fall of 2008, I had re-enrolled at UW-Stout to pursue a Master of Science in Applied Psychology. I had also been working for a national brand men’s store since almost two years prior (that job where I was once extremely happy). I had planned my favorite type of vacation for my spring break that March: the solo road trip. I love to drive and I would love to eventually see every part of this continent and as much of the world as I am able. I thoroughly enjoy traveling alone and have made many memories by myself and for myself. That March, I had planned an epic ten-day trip from Wisconsin to the Grand Canyon in Arizona, to Dealey Plaza in Dallas (where President Kennedy met his untimely demise), then further south to Houston (literally for A basketball game, singular).
Somewhere along my nearly four-hour trek from Dallas to Houston, I noticed a sharp pain in my left eye. The weird thing was, I could only feel an electrical shock type of pain in my eye if I attempted to look too far into my peripheral vision on the left. I didn’t think much of it and simply adapted the manner in which I checked my blind spot, while also maintaining my position in my lane, and made a mental note to get it checked out on my next day off. I successfully found my hotel in downtown Houston, checked in and then walked to the stadium to see the Timberwolves play the Rockets. A friend from work and I had gone to several Timberwolves games already, thanks to our awesome employee perks at the time, so I was ecstatic to see them play at a venue I’d never before seen. Unfortunately the Timberwolves lived up to almost every Minnesota team’s reputation of causing only heartache for their fans, but hey, it was fun to see a new court and city!
After the game, I headed back to my hotel room to catch a few hours of sleep before I started the long venture north on I-35. In the morning, I loaded my things back into my vehicle and headed out of Houston. Now, I figured it should be simple enough to get back onto the freeway from where I stayed. I say I figured, because I thought it would be simple, but for some reason the map I had wasn’t matching what I was seeing in front of me. (I should add here that I am usually quite skilled in finding my way, even in places I’ve not visited before. One group of friends has called me a bloodhound before because I’m so good at not getting lost, and finding places that they still have no idea how I did. Neither do I, really, but it’s one of my gifts.) As I’m trying to navigate this foreign city and find the signs that match the exits I needed, I noticed my left eye had begun to hurt a little more consistently, but still the worst of it was when checking out my peripheral vision. After far too many wrong turns on too many wrong downtown streets, I finally found my I-35 north exit, cranked my stereo, and set the cruise control for the journey home. I made it as far as Clear Lake, Iowa before I checked in to the last hotel of my memorable trip with me, myself, and I.
My final day of the trip, a Sunday, was also my sister’s birthday, so I had purposely planned it as my shortest, easiest portion of the drive. I wanted to surprise her with the gifts I had collected for her and her family in my travels. I visited other family and friends and brought their souvenirs to them as well. I was scheduled to work the next day, so I had made it an early night. Coincidentally, I had Tuesday off, so I had scheduled an eye exam at the Lenscrafters near my work. Tuesday’s eye appointment led to a referral to see a specialist on Wednesday because they discovered a small tear in my left retina. The optician mentioned that it was easily fixed with a laser surgery, so I thought it would be a quick and simple fix and I’d be back to work that night.
Wednesday came and I saw the specialist, Dr. S, who examined the small perforation and discovered something else: my left eye had optic neuritis. I had never before heard that term and Dr. S explained that it meant that my optic nerve was enflamed, and would need to be treated by a neurologist before he could complete the laser surgery to repair my retina. I called my manager and informed him of my situation and then apologized, because after my 10-day vacation and only one day back to work, I had to use a couple more benefit days to consult the neurologist. I was confident that I would be fine with some medicine from the neurologist, some rest, a little laser surgery, and then right back to work Friday. Oh, how wrong I was!
My parents took me to my appointment that Thursday, in Minneapolis at Noran Neurological. I met with Dr. D, who informed me that optic neuritis was treated easily with corticosteroids (such as Prednisone), but that the occurrence of it demonstrated that I needed to be further tested to determine if I actually had Multiple Sclerosis. Optic neuritis, he explained, is a common symptom found in persons living with MS; he ordered an MRI scan of my brain and spinal cord as well as a lumbar puncture (more commonly known as a “spinal tap”). Both tests were performed that same day and I wish I could say they went off without any problems, but that’s just not how my luck ever goes.
The MRI was pretty simple. First, I dressed in scrubs and was instructed to remove any jewelry or other metal pieces. They put me in the giant claustrophobia-inducing tube where the excessively loud grinding sounds of the machine were only mildly quieter with the headphones they had provided. After what felt like three hours of lying still, they pulled me out from the machine and injected me with radioactive fluids and back I went into the noisy, uncomfortable box for a little shorter of a stretch (that still felt like an eternity).
After the MRI was completed, the technicians sent me to where they would perform my spinal tap. The doctor who performed this was not as patient as I would’ve liked, because I will forever stand by my initial thoughts, which were that the numbing agents had not yet taken full effect. He instructed me to stop squirming while he jammed a long skinny needle into my back, and I can assure you that this has still been THE most painful experience of my (not quite) 28 years thus far! How on earth do you remain still when you are certain you can feel every movement of that needle? I am convinced he should’ve waited a little longer, but at some point he was done collecting spinal fluid and my body was back to a normal state, no longer in that excruciating pain.
I was then instructed to go home and rest; they would call to schedule a follow-up appointment when they had more definitive answers based on my results of both tests. Among my instructions were to remain lying down on my bed or on the sofa for a few days until the small hole in my spine healed itself. The doctor (or nurse, I don’t remember well enough anymore) told me to do everything lying down like Cleopatra,including eat meals, or I would feel the worst headache of my life any time I was upright (sitting or standing). These are called ‘spinal headaches,’ which in the simplest terms means my spinal fluid would slowly leak out from the small needle-hole in my back, causing the nerves on the top of my head to stretch as my brain sank a little lower within my skull, since the spinal fluid was no longer keeping my brain in its place within my skull.
“Ouch” doesn’t even begin to describe that pain! It was miserable. I dreaded using the restroom because I had to walk to get there first, then (of course) was still upright to use the toilet, and finally I had to walk back to where I had been lying down! I missed two or three more days of work when we realized we’d have to go back to Abbott Northwestern hospital because that spinal headache didn’t go away on its own within 48 hours. Remember when I spoke about my “luck?” Well, I certainly didn’t feel very lucky that I was in that small percentage of people who needed a “blood patch” to fix the leaky hole in my back, but bad luck had been pretty standard at that point in my life. Dad drove my mom and I up to the Twin Cities to the hospital to get the blood patch done.
I wish that I would have known how quickly it could be repaired because I would have insisted on it a day earlier! Once we arrived in a room at Abbott Northwestern, an anesthesiologist arrived at my bedside, drew some blood from my arm and injected it into the small hole in my spine. Almost instantaneously, I sat up, free from spinal headache and as good as new! (To this day I hope I never again see the doctor who performed the lumbar puncture because I’m pretty sure he is my mortal enemy now. Hahaha…I kid, though. He was nice enough; I just never want to see him again.)
After all the chaos of the previous week was over, I returned to work while I waited for my follow-up appointment with Dr. D at Noran on April 7, when he informed me that I indeed, have multiple sclerosis. Those of you who have been there already with your own diagnosis, or those of you who already know this about me (or even those of you who are just great readers and can follow a story well enough to figure out where this is headed) know that this was my official introduction to Bertha.
Bertha is my MS. She hasn’t always had a name, either. In fact, her name came to me during an exacerbation near the end of 2019 because I was frustrated that I was at a loss for how to deal with the pain, and my anger and depression that had invaded my life, whether directly because of her or not.
I have found that by giving her a name and a humanlike identity, I felt more in control. I am fairly confident that anyone who has not dealt with me much probably looks as me as if I am insane, but I am perfectly fine with that because I have turned Bertha into something less significant than she had seemed for some of the first decade of tolerating her. So now when I clumsily drop pens and spill drinks, I laugh and call her a klutz. Or I get mad and yell profanities at her for causing me pain once again. By treating her as an evil twin, so to speak, it has allowed me to let go of the things I cannot control (Bertha) while also acknowledging how utterly awful I feel on my roughest, toughest days, and that it is not at all my fault– because it is her fault. Nobody would ever choose to have a diagnosis as intrusive as MS has been in my life – I would bet my life on it! I have said on numerous occasions that I personally wouldn’t even wish this disease on my worst enemy, because that is the honest-to-God truth.
I would never wish this level of pain on another human being, even on my crankiest day! That being said, I also recognize that I wouldn’t have been given this disorder if God didn’t think I could handle it. I am humbled to think that He trusts me enough to put my best foot forward and begin navigating this life with big, bad Bertha, even on the days when I haven’t believed I was strong enough for this battle. But over the last eleven years, I have come to realize many things about myself and have decided that Bertha simply will not win.
I will not let her. I am a warrior, and Bertha is my (weaker) adversary. Many of the MSers in the world will tell you that we consider ourselves “MS Warriors,” and I love this moniker, especially when you realize that my name actually means “warrior.” I like to think that my dad had some inkling of the hardships I would endure later in life when he chose my name, or at the very least that God placed my name on his heart because it fits me so perfectly well!
I am definitely much better at tolerating Bertha these days, because I have taken my power back. I only allow her so much attention before I once again emerge, the phoenix from the fire. Last year, 2019, has been my toughest year to-date, as I was incapable of performing my job for just over thirty weeks, split into two separate long stretches. Berth was determined to wreak havoc in my body, but I just as stubbornly fought her at every step. I am sure some of my doctors would tell me that I need to find that comfortable balance in life, but it will undoubtedly be the constant struggle for the remainder of my days. My stubbornness is the strongest trait within me and I believe that God and I are just getting started with this new method for dealing with Bertha. I’m going to fight her with everything I have in me, just watch.