I have so much pain inside of me.
I never imagined myself having to UN-learn so much.
So much of my “learned behaviors” I’ve carried with me throughout my lifetime. Never did I make the time to re-evaluate if any of these behaviors needed to be unlearned. Never did I entertain the concept of unlearning so much of what has helped me move from chapter to chapter throughout a tumultuous life. Never did I take the time to dissect the inventory of my toolbox that I reference when I find myself in challenging situations. In panic mode. In survival mode. Never could I have imagined that something I once leaned on for support was the very thing holding me hostage in that space that I so wanted to run from.
It’s only once you find yourself in a situation with someone who doesn’t operate or tick off of chaos, that you quickly realize the dysfunction you exist in. That you crave to feel something other than pain. And yet the pain you feel is so deep. The pain you feel runs thru your veins. The pain you carry is the essence of you. No matter what they do it’ll never trump the pain. Nothing is ever good enough to ease the pain that plagues you. You become addicted to pain. Pain is the only thing that makes anything real. You pray you receive a love that isn’t associated with pain. But even the slightest indication of pain brewing sends you in a tailspin because all that past pain starts to burn. And it hurts.
It starts to suffocate you.
It’s easy to think you learn what you want to learn. You imagine a blank canvas and the world is your oyster to paint on that canvas whatever you choose. And everything will be beautiful and innocent. It’s much harder to digest that many of the behaviors that have been learned were out of sheer survival. Panic mode. Desperation. Many of these behaviors are detrimental to you and the rest of your life… You are not thinking this when you just want to stop the pain. Stop the bleeding. You learned something while crawling your way out of a situation you found yourself in that you don’t want to be in. You had no choice. You learn to process pain in whatever way eases that pain… You are not thinking if this is the right way to process. If this is the healthiest way. There’s no manual or guide on how to manage difficultly. You don’t weigh out if this is the healthiest way to process said pain. You aren’t thinking of the consequences 20 years from now. You are in pain and you want that pain to stop by whatever means necessary. You just want to make it stop. You suppress. You lash out. You get angry. You cry. You yell. You hurt yourself or others. You are drowning in utter despair. You need to stop the madness. You just want to be seen and heard. You want someone to hold you and take all the pain away… You want to be saved.
You push all this pain behind these iron gates inside of yourself. You work hard every day to keep those gates tightly closed. But every once in awhile you are tired and for a minute, you let up on that gate. You trust someone else to be the gatekeeper of your heart and they fail. They disappoint. They get weak. For a moment, you remove your grips from those gates to take a small break for yourself… Pain starts seeping out. Slowly by slowly until the gates have come down and pain is now flooding out of those gates.
There’s no control at this point.
Pain is coming out and going in every direction. I want everyone around me to see me, to hear me. To feel my pain. To make me feel like you feel my pain. I want to hurt you because I’m hurting.
You are now in panic mode. Survival mode. You crave destruction so you can see that your pain is real.
Something you work so hard to tame constantly but survival mode has now taken the wheel.
Survival mode is pulling at the straws that have gotten you through every other panicked moment. Every other painful moment. Every other disappointing moment. You are here again… Why wasn’t I enough? How could someone not think of you? Your feelings? Don’t you matter? How do you not matter?
Do what you do. Do what’s familiar. Do what’s worked in the past. Let your pain fuel your rage. Like a hit of drugs you’ve been craving for so long, all you want to do in that moment is to ease that pain. All you want to do is make everything stop.
Then you exhale. It’s all over.
Then you look around at the devastation and realize nothing’s fixed. The releasing of the wrath did nothing but destruct. You let your pain do what it does best and have nothing to show for it. You allowed your pain to steal everything from you. No one showed up. No one fixed it. No one saved you.
Pain stays with you. Whether it’s ruminating thoughts that manically steal your joy as they replay negativity over and over again in your mind or like a stranger you are able to hide from and pretend it doesn’t exist-only for so long.
Pain stays with you. Pain lives inside of you. Pain doesn’t go away. Enough years doesn’t erase pain. Time doesn’t ease pain. Writing doesn’t erase pain. Talking about your pain doesn’t erase pain. Pain is unforgiving. Pain is relentless.
I’ve only realistically really been diving into my childhood trauma for maybe the past year or so. I’ve never felt I had the greatest childhood, however, because of the perception of my childhood I’ve never received the true validation one probably would’ve needed to begin this healing journey a lot sooner. The perception of my childhood probably looks great. I remember people thinking we had money, I remember people assuring me that I was just spoiled rotten. I remember wondering as a child how money equated to a good and happy life? The way I looked always gave the assumption that life was good (again, I wondered how having a pretty face equated to being happy or why that gave people the impression that my life surely must’ve been good?). But I don’t remember ever feeling happy as a young person. I’ve ruminated alone in dark rooms all my life. Head always spinning. Manic thoughts always consumed me. I remember always wondering why I was here if no one wanted me. Why would God bless people with a life they didn’t even want. And where does that leave that unwanted person… What will the rest of that person’s life look like? Mind racing constantly. The voices never stop. Stir crazy. Anxious. Vicious thoughts replaying over and over. Music was my escape. I remember I could drown in song lyrics. I would sit in my dark room-with my blacklight on just spinning in thoughts of self-loathing. Feeling worthless. Reciting things that moved me, chanting lyrics that exhibited whatever pain was flowing thru me. Cutting was my escape. Controlling something. Feeling like you are letting all that pain out. Easing the pressure. My face never let on that I had such a dark side. That the troubled waters on the inside were brewing up constantly and it was only a matter of when and where that hurricane would surface. I didn’t come with a warning label.
I don’t know how to unlearn what I’ve learned to survive. I don’t know how to unlearn what has helped ease a lifetime of unbearable pain that’s always lived inside of me. Pain that’s grown with me through every chapter. I don’t know how to be ok with feeling so unloved. With having so many questions of why. With feeling thrown away. I don’t know how to decipher as an adult when someone is walking away to let a situation settle. It all feels like abandonment. It all triggers the same pain. I don’t know how to decipher that someone can love me if it’s not the way I understand love.
I hide it.
I smile past the pain and always hope for the best.
Then triggers find me. And when enough triggers find me I give in. Eventually, I give in. Eventually, the gates get too heavy and I’m tired. Eventually, I explode and I see red and I burn everything down around me until there’s nothing left. Then I sit in solitude. Feelings of guilt and shame becoming overbearing. Regret. No words. But all the while so lost. So broken. So much pain. All the while wondering why love didn’t and couldn’t just save me. Still that little girl hurting and crying for help.
I bleed positivity in an effort to pretend the pain doesn’t exist.
I smile past my tears and exude strength at all times to appear ok. I constantly flex my alpha to remind myself that I’m stronger than my pain. But I’m not. My pain is much stronger than me. My pain controls me. My pain suffocates me.
I have so much pain inside of me.
I thrive in ideal environments.
Who doesn’t… right?
It’s keeping that ideal environment that becomes challenging.
I’m so afraid of a not ideal environment because of my fear of those gates opening up and revealing the monster inside of me.
The second my ideal environment is threatened I want it restored immediately. I need it restored. I need to see effort. I need to feel something other than pain. And if I see it’s still struggling… Sometimes I can keep pushing-other times I just throw open the gates in an effort to hurry the painful process along. (Self destruct much?)
I’ve spent a year unpacking childhood trauma. I’ve spent a year of sharing my insides with a complete stranger and all thanks to covid it isn’t even in person-it’s thru a screen. I’m opening up and showing my guts to a stranger on a computer screen….
I started with all the obvious childhood traumas.
Strained relationships with parents who created an absurd amount of abandonment in someone who never asked to even be here. A lifetime of asking yourself why you weren’t enough. Why you weren’t enough for those around you to do better? To be better? To do right by the person they chose to bring into this world. Why couldn’t someone ever fight for me? Why if you love me, it hurts so much?
You spend a lifetime answering your own questions that you never received answers for. Coming to your own conclusions. Writing the story the best you know without the answers you deserve.
You move past pain and try to give yourself as much closure as you possibly can with the tools you have been given-with the tools you’ve picked up along the way. You never stop to re-evaluate if the tools you are using are doing more harm than good. It’s too hard. It’s too hard to admit that what you are doing isn’t working. Isn’t healthy. Because all you are really trying to do is survive.
I find myself still being triggered by these loathing feelings that I’ve spent a lifetime running from.
My pain only knows anger. Anger is my pains only friend. Destruction. Devastation.
I’ve associated love with chaos and pain for so long. I couldn’t possibly have recognized a healthy love-it just wouldn’t have been possible. Healthy love shouldn’t cause pain. Right? Shouldn’t cause disappointment ever. Right? I have love on such a high pedestal, I don’t think anyone will ever feel like they can deliver. Every person I’ve ever been with has said the exact same thing to me at one point or another… “I don’t feel like I will ever do or be enough for you”… No one ever feels they can make me happy. No one ever feels they can please me. No one ever feels enough… The same way I never felt enough.
People don’t trigger you… so I’ve read. Your own triggers trigger you. Pain triggers me. Even the smallest amount. Disappointment triggers me. Feeling unseen, unheard, and unappreciated all trigger me. All things I’m positive I lacked as a child while tryna figure this world out. All things I NEVER deserved to feel but did as a young person who should’ve been protected from the evils of the world. All things a child absolutely needs and deserves. Now I float around in life making men owe me what my parents failed to provide. What I can’t seem to provide for myself.
As a little girl, you needed someone to hold you. Tell you everything would be ok-no matter what. Someone to be there. Someone you know will always be there. Someone to choose you. Every time. Over anything. Tell you that your pain does not and will not define the rest of your life… Then you wake up at 38 and realize no one has ever said or made you feel safe. No one has ever said all the things you needed to hear. No one has ever caught you when you were falling. No one has held those gates with you. Many have helped open those gates and watched you scramble to hold it all together alone. No one will save you.
Maybe you get a pat on the back when you conquer one battle but no one understands the struggle. No one knows how hard is it when pain consumes you.
People with pain inside of them relate better to those with similarities but when that kaboom finally hits… those similarities are what burns it all down. People who don’t relate to the pain some of us carry-look at you with judgement. Look at you with disgust. You walk away with shame and guilt. You face that your way of dealing with chaos isn’t the right way and you are now being judged. There is no winning when you have so much pain inside of you. There is no way out.
For moments, you convince yourself that alone is the safest path. And you find your own happiness. You pursue your own happy place. Eventually, it gets lonely and you want to share this journey with someone or not be on a journey at all. But every time you think you are ready to embark on this journey with someone… similar challenges rear its ugly head. Deja vu. Your expectations become your own worst enemy. Your needs becoming challenging to fulfil and the disappointment is eventually equated as a lack of love. And then you find yourself asking the same questions the little girl asked, why am I not enough? Why am I not worth it? Why is this happening?
And you want to escape the pain yet again.
I’ve never challenged myself more to be different. To look at things different. To think differently. To process and move past things differently. But every so often my old ways win and I feel I’m back at the starting gate again. And I’m tired. I’m tired of being back here. I’m tired of fighting myself. I’m tired of regretting the actions that ease my pain in difficult times. I’m tired of the cleanup crew. I’m tired of having to recite bullshit to myself that I am enough. I’m tired of constantly battling the everlasting negative self-talk that lives inside of me.
I have so much pain inside me.
I don’t know how to be loved. I don’t know how to accept love. I don’t know how to love without rules. Milestones. Checklists. I don’t know how to free myself from this pain. I work endlessly to keep the pain at bay. I appease my pain. I distract myself from this pain. I starve my pain.
But my pain is always there.
Just like my MS.
I have so much pain inside of me.
Just in time for the Lunar New Year… Few things I’ve recently noticed. First thing, I recently realized I’ve been finding it harder and harder to get motivated to blog. Not that I don’t have just as much to say as I always do but more so just getting inspired enough to sit and put all of my thoughts down. I went and re-read all of my past blogs and figured out that I’m most inspired to write when I’m feeling down. So, year one, I have the most entries but as the years went on (as I learned more and more to better “live with” my new self), I wrote less and less because I focused more of my energy on actually just trying to live instead of writing about all the ways in which I wasn’t. It just didn’t seem priority to want to write about good days and sit in a bed that I resented so much to do so. Maybe its feeling entombed to my bed that inspires me most, maybe its the correlation between blogging and it being a bad day that scared me, or maybe the inspiration is always within me but I just don’t make enough time to actually sit and do it when I am feeling good. In any event, it challenged me to want to make it a point to dedicate more time to sharing more of me… On good days and bad.
So… NO new year, new me BS. Different year, same-ish me, still hyperfocused on getting better and better every day, still me and my ninjas, and still have MS. With that being said, I will admit I did feel an odd sense of guilt that I wasn’t one of those folks eagerly awaiting the new year as if it contained some magical potion to be released at midnight that was gonna cure all of the chaos of the world we found ourselves in-the covid crisis. I know 2020 was very hard on most and while I can empathize with tragedy, I don’t want to carry any guilt or dim my light that 2020 was one of the best years for me, that I can remember. Second thing I noticed, I feel I grew in 2020 more than I’ve ever grown as a person, from the inside out. It wasn’t just finding the love of my life in 2020 that made it great. It was the work I started on myself, it was finally feeling ready to face many demons of my past, it was a new willingness to be accountable for who I wanted to be moving forward, it was the extra time I got with my kids being locked in the same house, and most importantly-it was putting so much outside noise into very clear perspective. By outside noise, I mean, ever since getting diagnosed and very quickly having all the effects of MS take over my life (mainly daily battling extreme and constant fatigue with the occasional drunken sailor syndrome as far as walking and then the gastro issues as the cherry on top), I’ve always felt very resentful and scared that I could no longer work in the ways I knew how. For example, if I wanted to buy something or if we needed something that I hadn’t budgeted for, I would just work more to earn more (seems simple right?). Well without ever knowing how I’m gonna be feeling on any said day, this made me feel like I was out of control of my own destiny, my own life, my own body and unable to ever feel confident that I could provide as I always have. I felt trapped and angry constantly and would allow myself to drown in wallow that this was now my reality… Maybe showing the world how devastated I was for the losses I couldn’t seem to move past would somehow make my MS magically go away?!?! Maybe I’d cry enough tears so life would magically get easy? I felt helpless but somehow the misery of the pity party felt good in those moments. Somehow, I was convincing myself that if I mourned the things I missed the most enough, those things would return but everything else would remain in its revised versions?? I wanted it to go back to how things were, I wanted to feel in control… But this just wasn’t my reality any longer and for so long, I allowed the FEAR of what I could no longer control to hold me hostage to negativity and self-induced doom and gloom. This caused me a layer of underlying stress that constantly loomed over me because this affected income which affects my entire world and everyone in it. Just the mere thought of NOT being able to work as much as I used to caused me to automatically create all these negative stressors in my own head that were not even my reality yet… That may never have ever become a reality. I worried about being able to pay things now and in the future, I worried about taking care of my kids and their futures, I worried about not being able to function on days where I had scheduled work, I worried about what I would do if I just couldn’t accommodate doing real estate any longer, I worried about my sickness progressing and how that would truly devastate my whole world and everyone in it who relied on me. I just worried way too much about a lot of shit that I was actually just poisoning my own head with. I had to stop spinning in slippery thoughts, get out of my own head, and fight to stay in the here and now because everything around me was so beautiful. With or without money, I will always have my babies by my side no matter what and that is whats MOST important. I’ve come to love the new me and I’m learning every day how to accept the price of the new me was shedding every part of the old me… Even the parts I miss and cry for. I’ve made peace with not being able to bring what I pick and chose from the old me and am learning how to love every part of the new me, challenges and all. It’s always easy to validate worry over money because its actually a thing. No one really faults another for their worry about financial stability-especially a single mom who doesn’t get any child support. 2020 happening and the way it did, taught me that first and foremost, I definitely don’t need as much money coming in as I seemed to scare myself into thinking I did. Realizing how much I overly stressed about money and getting thru almost an entire year without barely leaving my house led alone working has really taught me that many things I worried over, were absolutely things I created in my own head… Thus causing me more unnecessary stress than I ever needed (and we all know how great stress is for MS). I had everything I needed all around me and I definitely allow myself, at times, to dwell more than I need to on the life I HAD and the one I wish I still had at times, instead of just soaking up the beauty of where I’m at right now. I often feel bad for my significant other because he only knows this version of me. He only knows Nicole 2.0. So whenever I do go down the rabbit hole of self misery, he doesn’t really know how to console me. He didn’t experience the old Nicole and therefore can’t always grasp what exactly it is that I’m crying over. I sometimes tell him that I don’t even think he would’ve loved the old Nicole because a lot of the time, I didn’t love the old Nicole. And then with a heavy heart and confused look often ask myself what is it exactly that I miss so much then?
I once saw a meme that read “MS continuously challenges me to find a balance between pride and humility”. I never read a truer statement. I know who I used to be and what that person was capable of and while MS has tragically changed a lot of me, I have to constantly remind myself that it may look and feel different on the other side but both sides are beautiful. There are parts of me that I resent now, like not ever being able to plan anything reasonably or feeling like I lean on those around me more than I ever did but when I compare which Nicole I would choose, I think I would still choose this me. And not just for myself but also for those around me. So this new year brings for us, still working from home, still distance learning, still no youth sports, still not going out a whole lot, still enjoying each other at home (hopefully in our new backyard very soon), but also many, many blessings in the forms of revelations. What and who is really important, who and what truly deserves your time and energy, what things you allow to live inside your head, and always being completely accountable for what version of yourself you present to the world. I now challenge myself to live in the faith I so often claim to have. Faith is the pure trust and confidence that everything will work out and despite my many worries about everything under the sun, everything has always worked out and I do absolutely trust in my heart that everything will continue to work out exactly as they are supposed to.
The foolish man seeks happiness in the distance (or PAST like me), the wise man grows it under his feet. Cheers to another trip around the sun and to watering and cultivating the here and now.
The last post I had made was back in May… At that time, I had written about all the covid craziness. I wouldn’t say things got worse per se but I will say that things kept to the same pace that I had felt all those months back and unfortunately things didn’t magically get better (not even with the election concluding as it had once been rumoured). The days continued to feel long, so the desire to LIVE kept building and bills did not stop even though everything else in life seemed to be on hold… or at least operating in what appeared to be slow-motion because while normalcy was craved, anyone could look around and see that no matter how much everyone wanted to just pick life back up, as it stood, life was definitely anything but feeling normal. My son did end up having a graduation ceremony in July, as you can imagine, it was nothing like I had expected or hoped it would be after waiting 18 years for that special day. But we made the best of it and despite my crippling fears of the virus, was proud of myself and grateful that we were able to celebrate with a small family dinner at Outback (and how fitting, lol).
Anyway, it was also around this time that I had started therapy (telehealth, video chatting-if you are even remotely uncomfortable with the idea of therapy, this is definitely an option that makes the uncomfortable-more comfortable…if that makes sense)?! Anyway, so I started therapy and my “lockdown lover” moved back home to his place when the lockdown restrictions started lifting.
I initially started therapy because I was overthinking everything concerning the virus. I was paranoid to no end, didn’t imagine ever leaving the house again, and feeling like I couldn’t hug my own kids out of fear that they may have been exposed when not in my presence. My co-workers were having the best year ever financially since real estate was still booming in Las Vegas, coupled with the historically low-interest rates and here I was afraid to even leave the house led alone meet with clients, especially new clients or those driving in from out-of-state. Even the clients I did meet with, I met with them in such an eerie state of mind because I just absolutely felt I couldn’t trust anyone, couldn’t trust where anyone had been, and just lacked the basic faith in humanity that every person was following the guidelines that had been suggested especially when compromised or dealing with someone compromised (I don’t even disclose my situation to most people so that part is my own fault). I didn’t want to be there but since I don’t qualify for unemployment felt I had no choice but to work when I absolutely could.
I couldn’t live like that anymore.
While I had physically been present for therapy sessions of the past, this was the first time I was actually ready for therapy. This was me wanting to be a better version of myself and admitting that I would need help to get there. This was me surrendering to the fact that I already operate at a max capacity majority of the time (physically/mentally/emotionally) and adding on the mental fuckery the virus was doing to me, was just too much. This was me truly committing to the hard work I knew it would take to make myself healthy from the inside out (I anticipated this being a much more difficult venture than taking my pills on time, eating better, and exercising when I could). After the 2019 I had, I felt I owed it to myself and those around me to better myself where I could and continue to strive to be the best version of myself.
Therapy, this time around, has truly been life-changing. I’ve always had people I could vent to throughout life and I’ve always utilized that option the most (in hindsight-probably NOT the most conducive avenues since those around me, who love me, also likely fear me most of the time and don’t always say what they probably should or would want to). I always appreciated the fact that my sounding boards were just a simple phone call away or a short drive down the road and conveniently always available but everyone knows you are drawn to the support source that makes you feel better (instant gratification) and unfortunately, truly getting better and healing deep wounds usually takes hearing a harsh truth you don’t want to face and definitely won’t happen overnight and without work… So while I would end up feeling better about whatever was bothering me for that moment, I wasn’t getting the true push or hard dose of reality to really take the steps to wake up and work on myself-to really look within and commit to doing the work (whatever that looked like) and truly heal instead of quickly moving on and adding more resentment onto the mountain of suppression I already carried. In addition to the smoke up my ass I had been filled with for years (thanks to those around me who love me), I was putting a lot of things behind me but not actually working through anything so, therefore, ZERO resolution in reality… Moreso just a lot of moving from one toxic situation to the next with my same baggage in tow (I’ve learned people with many “options” can tend to have the hardest time to look within because what one person won’t tell you, someone else will and what one person won’t give you, someone else will-grass is greener syndrome). Plus, as I mentioned previously, I had been to therapy years ago when I had filed for divorce… Obviously, I ended up divorced anyway, so my faith in “therapy” was weary due to this fact as I’m sure you can imagine. I looked at people who heavily relied on therapists as a weakness and I battled with my own level of self-guilt when I found myself wanting to reach out to my own therapist between sessions because now I was feeling overly reliant on a crutch I had looked at as negative for so long. This entire process has been so humbling but more importantly very healing for me and it has taught me so much. Now I even find myself feeling accomplished at times because I was finally able to see how much I stood in my own way (if you are looking for excuses, you will find them).
Since starting therapy, there has been many highs and lows. I have reached my witts ends at times where I found myself begging and pleading for things to “just get easier” or to let me off of this roller coaster that seemed to have no end or days where I just talk to God constantly for guidance and strength. I had never imagined starting therapy for my paranoia of a virus and that turning into a complete overhaul and cleanse of my entire life-being-and existence. Situationally, I have re-visited dark chapters of my life at times… Ya know, things occur in our everyday lives and they trigger some painful past event and you re-live those emotions and pain temporarily but NEVER did I imagine allowing myself to surrender completely and opening the flood gates completely of every past pain, disappointment, or resentment that I had until now. I have now processed many of my childhood traumas (most of which I didn’t want to remember and many of which I would’ve never imagined sharing with anyone especially with a stranger) and this process led to talking about, working through, and reliving many of my painful failed adult relationships as well as a result of everything I’ve always denied myself of feeling. At this point, I wasn’t having relationship problems currently per se but starting a new relationship during a global pandemic/lockdown can have its own challenges and I am so happy therapy has helped us both to grow individually as well as to get closer than ever as a couple. I always imagined what starting a healthy relationship built on a strong foundation would look like and while I don’t have a crystal ball-feel the MOST confident I have ever felt in a budding relationship. I feel confident that I have my first healthy relationship and am happy to build something without starting in a deficit for the first time in my life. I know therapy has helped me to become a better version of myself and I am beyond thrilled that this is the person I am presenting versus the version of me in my past. I no longer look at therapy as a weakness but rather a beautiful bridge between childhood traumas that no one asked for and living each current moment as your best one-allowing yourself the freedom to live your best life. Cutting the ties to many of my childhood traumas and actually working through and processing these events in healthy ways has resulted in me learning to react less overall, control my anger and anxious ways, think more about what I’m actually feeling in that moment, react appropriately for whatever is happening just in front of me, stop the fight-or-flight auto-responses, and get my wound responses under control so I am not making some innocent person in front of me pay for my painful past that I chose to carry with me. I feel healthier and a whole lot lighter. I know I always carry MS with me but the load of my overall stresses became so much easier to carry when my hands weren’t full of past pain preoccupying my whole life. I no longer feel like a ticking time bomb.
I don’t know what lockdown or covid would’ve looked like if I wasn’t compromised. I imagine I would’ve gone without the extreme paranoia but would have continued to try to live as normal as possible so I can empathize with those who feel stir-crazy and crave social environments and interaction with others. I never considered myself a very outgoing or social person and enjoyed being a homebody even prior to my diagnosis but I understand much better the true differences between the choice to leave your comfort zone or not and having orders to completely isolate in your home because you cannot leave. I don’t know what the world will be like when the panic passes or if it will ever really completely subside (especially for me), but what I do know is that I wouldn’t change anything that’s happened because it brought me to where I’m at and there’s no place I’d rather be. I can actually say I am proud of the person I am becoming and will continue to strive and work to be better with each day and that I am right where I belong. For the first time in my life, I feel like I can exhale. I have had chapters in my life where money was no object and I’ve been overwhelmed with material things but nothing compares to the true fulfilment I feel since I’ve started the healing journey back to myself.
2019 was the “year of the boar” in Chinese astrology. I did an entire rant previously about how that should’ve been MY year. Anyway- fast forward to 2019 coming to an end and my excitement to welcome a brand new year and decade… Hello, 2020! You know, the whole “can’t go anywhere but up from here” attitude… Who would’ve known what 2020 would’ve had in store for the world-at least the beginning half of 2020 anyway since we have yet to see how our world and city will actually recover from the first shutdown in history… Fast forward to May (pretty much halfway through the entire calendar year) and how quickly do the problems of your 2019 seem much more trivial now than they actually were in those moments. In hindsight right? In 2020-perfect vision (pun intended), when if you needed something from the grocery store-it was so simple to run there and get it, right?
With so much going on concerning the CoronaVirus for the last 7 weeks, it was hard not to get uber consumed in the mayhem at times. The panic grocery store runs, seeing the aisles of what should be full shelves of canned goods or cleaning products absolutely barren, going down the black hole of conspiracy theories, and talking yourself out of that eerie feeling of “is this all really happening”? Oh, and don’t forget the constant reminders throughout this whole ordeal that WE are compromised, WE are high-risk, WE could be affected much more severe than the average person getting COVID-19. That is a scary reminder to have constantly looming with no end in sight and if they do come up with some miracle vaccination-do WE even get to truly benefit from that? That is a heavy reminder to carry as if it’s not already hard enough to leave the house and see nothing but face masks everywhere you go, wearing of gloves, people intentionally avoiding each other like the plague, and just a sheer feeling of desolation in a city that supposedly never sleeps. As ridiculous as I feel this has all gotten at moments-when I see people wearing entire hazmat suits at Costco or a lady wearing a legit eye mask to sleep over her nose and mouth as if it is an actual mask for your nose and mouth?!?, it is equally as frightening at the same time. Like I legit go through moments where I feel like if I get CoronaVirus, I’m gonna die… and it sucks!!! I’m sure I’m not alone in all that paranoia and as much as one can attempt to stay sane in between all the craziness-eventually it wears you down, eventually, it’s everywhere and constantly in your face and I often run questions through my own mind like is this really gonna be a thing every year (I’ve heard this theory)? Will this become the new flu season? Could I really imagine living a life primarily like this forever? Depending on others to go grocery shopping for me or run my errands, barely leaving the house, hell! barely changing out of pj’s these days and keeping my young, vibrant, healthy boys locked inside with me because I’m high risk? Completely panicked to go outside, feeling eerie and overwhelmed to do basic things like grocery shop or put gas when I do decide to be brave enough to attempt a field trip, panicked to let my kids outside or to be around friends and not even seeing my parents for months when they literally live streets away and if so, is that truly even considered living? If we continue to “honor” what this virus requires (which is stay inside and completely isolate), is that really living? For anyone? Parts of me feel vindicated that now the world finally gets to walk a mile in my shoes (when I say WALK a mile that is completely for theoretic and rhetorical reasons btw-we all know I’m not walking many miles these days literally), but seriously, apart of me feels like I’m looking at the world like why is it so bad to stay home a lot? Why is it so torturous that your life had to slow down momentarily? Why was it that out of the ordinary to expect basic human cleanliness like washing your hands, no touching your face or mouth, containing your coughs or sneezes, and staying at home if you don’t feel well? How or why did it take a global pandemic to call people out on basic everyday hygiene practices? Why did it go to these extremities to get people to see how ones irresponsible actions can have grave consequences for another? So the entire world had to slow down… ironic to watch now as my whole world came to a screeching halt a few years ago and the world didn’t slow down for me a bit.
As this lockdown slowly comes to a hopeful end… I look back and there was such a whirlwind of events in what was actually a very short amount of time. Right before the lockdown was officially announced, I had been dating someone new for a couple of weeks. Let me just tell you that a “quarantine relationship” ages in dog years! Right after quarantine began, my birthday was quickly approaching. At the time of MY birthday becoming a quarantine celebrated event, I never would’ve imagined that we would’ve still been in quarantine for every other important event that should’ve happened-but didn’t thanks to the lockdown. My older sons 18th birthday-celebrated in quarantine with just the people he lives with, senior trips cancelled, senior prom cancelled, and now a commencement ceremony that was technically cancelled but is now rescheduled for mid July-not to mention a graduation party we had been planning in Hawaii for about a year already…all cancelled. As I look back on the devastation I faced when I felt my whole life changed overnight thanks to MS, I feel horrible that my son will never forget his senior year either. All 2020 graduates will NEVER forget their senior year and they will never get the proper do-over. Senior year will never have the memories for my son as my senior year did for me. My biggest hope is that my son, as well as everyone else sharing in this disappointing and devastating time, can always remember what this has taught us all about life and family, about patience, about gratitude, about coming together, and about slowing down and they can use these lessons in positive ways as they transition into adulthood.
I think the best post I’ve seen throughout this whole ordeal (since we all know idle time makes for amazing keyboard cowboys) and one that hit home quite hard for me, personally was: “I understand people have no idea the dangers that immunosuppressed people are in with any type of contagious illness. I didn’t care about MS and being immunosuppressive until it affected me. I get something like a simple cold and it takes me out for 3 weeks now”. This post hit home for me so much because even as someone with MS, even knowing I was immunosuppressed, I myself didn’t really realize the true blue effects of being immunosuppressed until I had my surgery last year… When I took 5x longer to heal than someone would have had they been my age BUT without a chronic illness looming. When my dissolving stitches did NOT dissolve as they should have and there I was having to have stitches, 6 months old, literally unstitched and yanked out (painful? FUCK YES!!!!), but completely normal for someone in my shoes. So basically, we MSers primarily live our lives in a forever quarantine, we exist in our own bubbles, we always wash our hands and are always extra mindful of cleanliness and hygiene in general, we frequently avoid uber crowded places and anyone seemingly showing any remote signs of a possible sickness that could be contagious and we NEVER want to intentionally be around anyone or exposed to the sick in general… period… not just COVID-19… We are fragile and whether the world is slowing down or being mindful around us, those requirements for us are endless and have had to become our permanent way of life. It is unfortunate that while the world may want to rush back into normalcy as quickly as possible, nothing really changes for us…
Sadness is not good for the sickness, yet the sickness brings me so much sadness.
It’s so crazy how you can have so many good days and one bad one can take you all the way back to level one… Erasing all the progress you feel you have made… Leaving you feeling defeated yet again and desperately searching for the strength to avoid the rabbit hole of self-pity. It’s like when I forget to collect my daily rewards on Candy Crush and when I finally do log in-I’m back at day one-the starting line… It’s like working so hard to take those 10 steps forward and in an instant, falling 20 steps back… and desperately trying to remain motivated to keep pushing forward for another day.
Every day there are little reminders that remind me of a forever changed life (not just the no wearing heels part). Little post-its that metaphorically pop up everywhere throughout your day as subtle reminders that even on your best day/days this monster is never really gone and is always inside of you. Waiting… Always reminding you that it comes with the package (as if two baby daddies are not enough baggage to come with…) So, while you have done a great job at presenting your best self for someone, at some point you will be forced to open up your worst side so vulnerably. You have to disclose what could be the stop-everything-in-its-tracks deal breaker… Your dirty little secret will have to surface eventually-hi, I have MS and if you decide to be with me, it will feel like WE have MS.
Being naked is no longer the most vulnerable position you may find yourself in with essentially a stranger, now it’s sitting them down and trying to portray that you may LOOK fine all the time, but things aren’t always as they seem. It’s a morbid idea of almost talking somebody out of wanting to be with you and listing all the what-ifs that their future could hold and then asking if they still wanna sign up… It’s literally like talking someone out of wanting to share a life with you because you are so afraid of that getting taken away at some point once you’ve already become reliant on their presence in your life and you just don’t know how to allow yourself to let yourself get caught with your pants down again and stuck standing there, ALONE, looking at the ruins that you are once again surrounded by… You never want to start anything (relationship included) out of fear of failure because dependency takes on a whole different form when someone takes on the role as a caregiver. Your caregiver. You lose faith in people and in their words and you learn to depend on no one except those within your safe zone (this also prevents you from wanting to share or open up with anyone but those marked “safe”). You also don’t know how to let anyone new into the safe zone (circle of trust). And while every break up/failed relationship or idea of starting over can be detrimental in general, dealing with heartbreak and relearning to do everything for yourself when you’ve lost a critical caretaking piece of your day to day life is absolutely devastating and puts the pressure on those who remain around you tenfold (this was my 2019). I know I don’t want to put myself through this ever again nor do I want to subject my sons to this rebuild process ever again. I don’t know how to love without an insurance policy.
It’s the looking at someone who is telling you everything‘s gonna be OK but at the same time nobody knows what the sickness will bring in the future therefore nobody can say that you will be OK and is it my own insecurities that wants to push everything away NOW so that I don’t have to experience loss later when I’ve already become dependent or is it that I truly just feel sorry for someone thinking they wanna join this party and their kind, naïve nature that thinks they want to sign up for something and they really have no idea what it’s actually about. How can someone say they are willing to sign up for something when no one knows what it will truly bring? How do I believe any of it? What would it take to make me believe any of it? I don’t open up enough about the day-to-day struggles. I find it much easier, maybe it’s even a little deceit on my part, but I find it much easier to pull myself together and be my most presentable self for those few moments that I do share time with people outside of my home (get dolled up for isolated nights out here and there) and when I find myself having bad days or bad moments I go back into my little hermit shell and shut off from the world, not wanting to share that side of me with people, not wanting to explain all the weird things that are happening that I myself don’t even understand and definitely am not wanting to think about this being forever and possibly progressing to a more severe physical state down the road. No one can tell you they will hold your hand thru whatever life throws at you when they don’t know what life with be throwing right? How do you just have faith and trust someone’s words? You don’t… sadly, if you are broken enough or have been broken enough, the reality is you believe nothing. The reality is that if forever was meant to find you, it likely would’ve by now, right?
Is it a lack of trust I have in others that makes me question the sincerity in their words or is it simply the disappointments of life that has given me no faith in the longevity of anything including long-term relationships with other humans?
There are a number of awkward moments that two people will encounter at some point when you just start dating someone… Who wants to add onto the pile of awkwardness by inserting here I have a sickness and I never know how to warn you how to deal with it because I never know what’s coming and I don’t know how to warn myself of what tomorrow will bring or the next day or the day after that. And I definitely can’t tell you what 5 or 10 years down the road will look like with me… And I swear I’m not flaky and I know that I look normal but if I’m telling you I don’t feel right then please believe that I just don’t feel right and I don’t know when I’m gonna feel normal and I don’t know how to deal with what I’m feeling in those moments in any other way but how I have been dealing with it (420 all day). And that’s not really what I would consider “presenting my best self” either… The slope is unbelievably slippery, figuratively speaking.
Who wants to appear flaky and unreliable or possibly even disinterested in the very beginning stages but at the same time who wants to fully disclose what bad days truly look like or how you individually may choose to cope with your bad days… #ijustmedicatetothehighheavens
And even though medicating relieves me of some of the other ailments I may be feeling or dealing with, it is still not the state of mind you want to be around someone in especially when it’s still the beginning and you’re wanting to always put your best foot forward at any moment. Dating is for being cute and bubbly and experiencing all those awesome early stage butterflies and not for being transparent about an illness right out of the gate, while full of anxiety that something is gonna go wrong at any moment and you will be forced to share your secret anyway… but at the same time, I cannot just continue NOT telling people and then it’s a feeling of this constant grey cloud looming over everything because then I feel like everything is a lie. After all, a very critical piece of the pie is missing. So while everything may appear to be going well, I know on the inside about my dirty little secret and that it will surface eventually… I guess I just go off of vibes and however I’m feeling in those moments. Some people do make me feel comfortable enough that I can attempt to open up to them about something that still isn’t very easy for me to talk about (why I blog) and then there are just other people that I just don’t think that they would receive what I’m saying in a way where the feedback could give me the confidence that I’m yearning for or that it doesn’t change anything or the way that they look at me and then I am unable to bring myself to share anything with them.
I realize more and more every day about things about myself and also about some of the relationships I have been in, in the past because of the person I may have been in that chapter or that particular period of my life.
I realized just yesterday actually, that telling someone you are sick and having to explain that whole charade to someone brand new who’s looking at you look completely normal is way different from actually getting sick with someone from diagnosis. We took the initial hit together and we experienced all the changes overnight together both physically and required lifestyle changes and everything that I had to learn, WE learned and I got to learn with somebody by my side instead of now I’m just the teacher trying to explain intimate details of a part of me that I, myself still struggle with accepting wholeheartedly that all this shit really is a part of me forever . I realized why staying in a situation longer than I should’ve was easier for me to validate in my head back then, it was probably because subconsciously I knew not staying in that situation would leave me where I feel like I am at right now.
I feel like I’ve spent my entire life teaching people how to love me in my complex and dissecting true nature (make it make sense) and it got exhausting and so I gave up and just totally surrendered to being single and taking on the treck of life with MS alone just with my kids by my side. Now I’m realizing even the thought of being with someone, present day, will still require an immense amount of teaching… the only difference is now the energy and time I put into teaching someone will not be as easy to walk away from because the investment got much more costly for me. How can I dedicate time to teaching someone and showing someone all the intricate parts of my insides when I don’t get the crystal ball guaranteeing forever will follow suit?
I’ve realized even the very things that we may have prayed for, we may not be prepared for and this was truly eye opening for me. I guess I just always imagined things I prayed for arriving and everything else just being easy, everything just fitting, everything falling exactly into place perfectly… like the fairy tales? I guess it just didn’t dawn on me that something I’ve prayed for would still require work and would still challenge me constantly.
It is hard at times to not think: Is it my destiny to come up the runner up in the fairy tale? Was forever never meant for me? It is only through enough devastation, disappointment, and desolation that you start to really believe that maybe all people are not meant to have someone by their side through every chapter despite how amazing the warm and fuzzys feel when you do temporarily have that role filled.
The universe doesn’t always play fair, but it does have a sense of humor…