FOUNDATIONS (The Story of Us)

It was our first time meeting somewhere to spend an entire weekend together after our initial 3 dates—each lasting 9 hours!—in Warsaw 23 days earlier. He had flown all the way from England to meet me at the Polish Seaside in a charming town called ‘Sopot.’

At the time, I didn’t know what illness specifically I was suffering from, but I knew I was very ill with whatever was still waiting to be diagnosed. I was so exhausted and defeated from living in this state for going on a seventh month at that point, that the image of me in a doctor’s office, finally hearing WHICH TERRIBLE illness specifically was underlying my symptoms, brought relief. Even if it were to be something like MS. Actually, MS is exactly what I had concluded, and even mentally started preparing myself for the moment I received that diagnosis, just before that weekend. I had so many overlapping symptoms of countless possible illnesses at that point, but all of Multiple Sclerosis’s to a tee. I was EXTREMELY FATIGUED, bogged down by BRAIN FOG and in so much nerve and muscle pain radiating throughout my entire back and neck 24/7, that I fantasized about using a wheelchair all of the time, which I felt so GUILTY about! It felt so strange and WRONG to be comforted—RELIEVED—by the mere thought of using a mobility aid when I still had the privilege of being able to walk on the wonky, jelly legs that had replaced my own. But at least if I had MS ‘officially,’ I’d start getting treated the way I needed. Well, I’d hope. Finding out I had MS felt better than continuing living this way in the DARK. That is, with the sensation of countless, dainty, strong fingers digging their way to my muscles through the outer tissues of my body just to scrape them out and squeeze them into bruising until they’re itchy like deep cuts in their final healing stage you can’t relieve. Which no over the counter painkillers could to any degree, either. I’d eventually figure out this is most likely ‘neuropathic pain.’ But in the meantime, spinal tumours crossed my mind as possibilities many times, especially when I felt like my vertebras were about to combust and shatter.

The thing is, I was under the impression people don’t really die from MS directly, so a part of me was both terrified, and, on my darkest days, relieved that it actually could be something else in its terminal stage. Just so I wouldn’t have to go on this way ANYMORE!

We can’t know what people are going through just by their appearance alone, nor by judging how we perceive them moving through their day. They might be feeling like they’re on death’s door living in a total haze, as I did on every single one of those days we spent together that weekend, and would continue to for a long time afterward.

You’d NEVER KNOW THE TRUTH just by looking at me.

Recently, I wrote a poem called ‘The paradox of being strong.’ When you become ill, it can feel like an impossible battle to cope in the way you truly need. If you let people in on how you’re actually feeling, too much, they might start to feel you’re a burden weighing down on them with your ‘victim mentality’—that’s what I always worried about anyway. ‘Complaining’ too much and being perceived as someone who’s become completely ‘identified’ with their illness, which you know, wouldn’t have been very ‘strong’ nor ‘spiritual’ of me. But when you decide against that route of total honesty and openness with how you’re actually feeling every moment of every day clawing your way through life after crying your way out of bed in the mornings, people assume you’re totally FINE. Nobody can tell that you have merely DECIDED to rally up every cell in your body weighing you down with 1000 tonnes of exhaustion to function as ‘normally’ as possible with ALL of YOUR MIGHT. And recommit to fulfilling all your life’s duties and obligations DESPITE BEING EXTREMELY ILL. And not because you want to, nor are fully capable, but because you have to FORCE YOURSELF to, in order TO SURVIVE.

When you do mention how terrible you feel, people often just react with indifference, or not at all—PERIOD, assuming it’s not as bad as you describe because your outward appearance and behavior don't align with their preconceived notions of how a ‘sick person’ should present to be treated seriously. When you don’t ‘look sick,’ people, including doctors, assume you’re just exaggerating or being melodramatic. Or that you’re just a weak, whiny woman with a low pain threshold—the opposite of what is actually true. I used to run 10KM every morning on an empty stomach with a malnourished body weighing 85 lbs. at 5’7.5, having barely eaten the day before with my hair falling out. Did that make me weak or strong, healthy or sick? Do I have a low or high pain threshold? They also have no problem expressing their assumptions to your face either! Doctors have told me not to use such ‘serious words like attack’ to describe my symptoms (that’s exactly what your body is doing when you have Lyme disease; attacking the parts of you where it senses the bacteria as a pathogen, to eradicate from your system. And that’s exactly what it felt like). Or that, ‘in (their) opinion, (my) pain is not that bad.’ I’m not even kidding you. Meanwhile you’re FORCING yourself to LIVE when the desire to sleep all day is overwhelming, as is the urge to sit immobile in a wheelchair while getting around to preserve every ounce of energy you do still have to manage the basics, and avoid experiencing your own body’s torture. It’s fucking lonely.

You know what I had decided that weekend? That I’d better make the best of my energy levels because ‘it could be one of the last few times I get to spend a weekend like this in my favourite place to be on earth: by the ocean or sea.’ On top of it all, my nose kept bleeding sporadically and heavily—not exactly romantic bedroom ambiance for our first time together! I still have the image of my blood on his face, lol. But he’d known about everything since day one and he still wanted to meet me. To be honest, I felt something greater than me was moving my involvement forward because, intellectually, I had decided I’m crazy for even entertaining a relationship at this ‘inopportune time,’ knowing I have NO CAPACITY to give this man what he deserves. This one-of-a-kind man I cried over losing before I even fell for him because I decided that pushing him away was ‘the right thing to do.’ I had really just gone on that first date on a total whim to get myself out of the house, having been isolated, mostly laying around and sleeping between teaching, in hopes of a decent conversation and something interesting to add to my memories living abroad! After all, he wasn’t even the Irish pilot I met in Porto the summer before, who I set up an online dating profile in search of! ‘Honestly, I’m just here searching for the Irish Pilot I met in the queue of Continente supermarket downtown Porto in the summer of ‘23…’ my profile read.

Right, so you can’t tell from any of the photos from that weekend, which I took in a total fog and am certain, thanks to, are mostly why I remember moments of this trip at all, but I’m in constant pain. And behind the scenes, there were many tears he caught as he held my tingling, numbing body, or my hand, walking out and about as my jelly-like, cramping legs did their best to carry me around this charming seaside town. It was the least enthusiasm I’d ever felt exploring a new place in my entire life. I felt like a total zombie, even though I was ecstatic to be there.

He kept reminding me that we didn’t have to do anything if I felt too weak. The first day after arriving, we just walked along a beautiful white sand, which felt like plush fleece against my feet, beach for a bit and then parked in the shade laying on our extra set of coats we’d brought ‘just in case,’ cuddling, talking and getting to know each other for hours. Who is this man who sees me like nobody else ever has, straight through all of these sick layers clouding my reason, self-image and self worth? He speaks my language, understands things about me like nobody else does. Sees the world similarly in ways others have called ‘weird.’ It all felt like a surreal dream. Maybe even like one of those movies when two people meet at a devastating time in one or both of their lives. Will they make it? At my darkest hours, I felt like I wouldn’t have the stamina to fight whatever illness I did have by the time I was finally diagnosed. Or that I’d be dead before I got the chance to be. And this would just end up being a fling that never really stood a chance because of my days that had already been numbered before we even met.

He had waited for me to come around, even as I tried to push him away, until I eventually said that I do want to meet him again. ‘Of course I do, I just feel so lost and confused in this situation,’ I had said. ‘You also live in England and have an entire life there. But I was thinking, let’s meet at the Baltic Sea instead of Warsaw, what do you think?’, I finally proposed one night over video chat. I woke up the next day to screenshots of his plane tickets to Gdańsk airport for the following weekend, which he bought the next morning before going to work and captioned them ‘SURPRISE!’ Before leaving for that weekend, I had made sure to give my dad his number and him my dad’s in case I took a turn for the worse while away from ‘home,’ which I was very afraid of.

Since then, we’ve started living together in England, but it’s been in pretty short-lived bouts, always shorter than we’d like, or even plan, due to my having to come back to Poland for medical appointments. Finally, Lyme disease was revealed at the end of January of this year and only because one of my English students suggested getting a test done privately. Get this, Poland has a tick problem and public healthcare doesn’t cover testing for Lyme disease! Poland has a tick problem and not one doctor out of the many specialists I’d seen ever once associated any of my symptoms whatsoever with Lyme disease, a condition that, incidentally, can mimic MS to a tee, not that anyone tested me for that disease either. Come to think of it, nobody decided to investigate further when all of my preliminary health tests, other than a Vitamin D deficiency (also common in Lyme patients) back in the fall of 2023 when it all began, came back perfect. ‘You’re healthy!’ a doctor once exclaimed after I’d spent 8 months untreated waiting for specialists’appointments, so sick I was having suicidal thoughts anytime I waited for the train. My brain was simply starting to respond as a way to get me out of a state no longer suitable to meet the demands of living. To save me. I knew depression and anxiety as mental illnesses, which they conveniently diagnosed as the roots of everything in the end, were not the roots but further symptoms of something else. But they sent me on my way anyway, and I must admit that, at that point, the repeated gaslighting started getting to my head and left me doubting my own voice—-my INTUITIVE, INSTINCTIVE KNOWING.

I settled.

He’s NEVER wavered on wanting to get to know me; he’s always seen my soul, heart and brain as the only things that count in deciding whether or not getting involved with me was worth it. And he dared to start building a foundation with the shakiest version of me I’d ever met. I guess when you meet someone unexpectedly at your worst and you both fall in love anyway as he stands by your side long enough to get to know you at your best, ‘in sickness and in health’ is spoken long before vows are exchanged.

He’s made one of the hardest years of my life equally beautiful and made me feel safe even when I was terrified for my life. A massive part of me honestly feels like he helped save me on levels that feel bigger than both of us together.

I’ll always remember one of the things he wrote me during our first online chat—‘let’s meet so you can see if you think I might be a good match for you,’ his humbleness rippled through me like the ocean. And that first evening I ever saw him as I walked up to meet him for dinner in downtown Warsaw after talking for three hours online the night before, I heard my inner voice whisper LOUD AND CLEAR, ‘he’s your husband,’ a thought I right away dismissed as irrational – ‘don’t be CRAZY!, don’t get me wrong! Well, it turns out I was right and thank God I didn't allow my discouraging intellectualizations born from my physical depression due to the Lyme disease itself stop me from acting on KNOWING IN MY HEART WITHOUT A DOUBT that he was the one I’d been looking for from the very start.

Sometimes you need to trust what you can’t yet explain. Or maybe more often than not, as I’ve been learning :)

PS. It’s not over, I still have Lyme disease, I’m getting treated and recovering still. But I did meet the man for me in the thick of all it all. And this is JUST the beginning of US!