I have not posted, or written in a long while. I have been navigating a few chaotic life things of my choosing and settling into a new (old) job.

What all of this has brought up for me are reminders of how well I know my triggers; but also how frustrated I get at those triggers and how I try to rationalize and justify them away. For example, Friday night I felt sick…really sick, and I haven’t in a while. I spent some time trying to pick apart my last few days in an attempt to identify what it was I did or ate to bring on these symptoms, telling myself I’d be sure to avoid whatever that was in the future. When Michael realized what my little chaotic brain was doing he took a minute to stop what he was doing and tell me, kindly, that i have MS, I have a disease and I often don’t feel well with no rhyme or reason. This was more helpful that I think he realized it would be. So, while I am aware of things that cause me to feel unwell, or exacerbate any of my symptoms, I also have to remember that some of the time I also won’t know, and won’t be able to investigate away what is actually occurring in my own body.

2020 has been a lesson, for me, in not always needing answers despite looking for years for solutions and quick fixes. This has been a year of letting go of some of the obsessive ways in which I have tried to reign in this disease and work to eliminate as much discomfort as possible. As my nervous system wreaks havoc on literally every other system in my body, I have learned some of the things I can control to help navigate these awful sensations and poor symptoms.

There’s the standard, extreme heat and extreme cold that cause my sensations go to haywire. Hot leaves me feeling sluggish, extra fatigued and often very nauseas, whereas cold leaves me aching and stiff. There’s overstimulation of my sense, which is a hard one to wrap my head around. If lights are too bright, sounds are too loud or I’m feeling claustrophobic my nerves flip into vibrate mode. This feels like my inside are quite literally vibrating rapidly. And then there’s the more visible fatigue of specific body parts. This manifests in the form of arms, hands or legs being just so tired they start to shake; this most often happens after carrying bags or completely any tasks that require dexterity of any sort.
The more internal triggers I am aware of are that of inflammatory foods, extra sugar and sometimes a little too much wine on a weekend. These things lead to my body deciding it cannot function anymore and will nosedive pretty hard (hopefully into a pillow and a few blankets).

Some of the lesser known triggers, however, are what I perceive as making me look crazy…thank god for Michael. These include eating too much, or too little, not going to bed super early most nights, having too many mental or emotional tasks in one day, attempting new tasks, standing in lines, standing still period, driving for a long time, being in a car period if I am having a bad day, carrying on a conversation too quickly in the morning, talking for a long time, clenching any muscles, etc. etc. etc.

Any one of, or all of, these things seem monumental to me at any given day. These things are so common and so just…second nature that most people would never think twice about how daily tasks and unavoidable situations can impact others. This fact has led me to manage these on my own, to keep quiet about them or to secretly use my tricks for feeling better without bringing attention to myself or how I’m feeling.

And I don’t share this for pity, as I’ve said before, I share this for information. I share this for insight and maybe some form of enlightenment. More for me than anyone. Often times I navigate this disease on my own, then read another blog or article and realize I am not losing my mind; I’m living the best way I can with the cards I’ve been dealt, which is great because I don’t know how to play cards.

If I am lucky I stay asleep until my alarm goes off. If not, I’m either woken up by a dog whine, a cat hiss, baseline discomfort or general anxiety. Such is life at the Till family zoo, or life with chronic illness, life during a pandemic, or adulthood period.

Sounds somewhat chaotic, no?

Yes. Yes it is. Anyway, I will share some of my regular AM thoughts as I prep for each day.

Pending my cause for consciousness, my first thought is usually while I lay in bed in the dark for just a moment. At this time, I will take inventory of my body and my overall mood for the day. Do I feel well? Hopefully. Is it a challenge to sit up due to sore, fatigued muscles? Usually. What is that first deep inhale like? On occasion it feels heavy, hard and strenuous due to the tight intercostal muscles (the MS hug is nowhere near as comforting as the name would lead you to believe). Next, as I swing my sleepy legs over the side of the bed and feel around the floor with my feet for my slippers, I usually think, “ugh I should have drank more water last night.” This is often promoted by the blacking out and dizziness that accompanies any movement into a vertical position (this I can attribute to a chronically low blood pressure, but not quite low enough to cause concern apparently).

As I carry on through the morning, moving through my regular routine I think about what my day will feel like. I’ve had MS now for 12.5 years officially and have gotten pretty good at understanding what each feeling or sensation will mean for the remainder of that particular day. So, where most people plan their daily activities, meals, schedules, etc. I typically plan for modifications to all of those things in order to achieve optimal function, or to avoid baseline dysfunction. I begin to run though the priorities in my mind; feed self-what can I grab quick, or what’s already made, bathe self-hopefully I prepped and showered the night before, clothing-the comfiest, most reliable outfit options are readily available (thank god leggings can be office casual on occasion). Continuing to thoughts of any variation of self care I can achieve for that day-usually in the form of medication compliance, maybe washing my face and most definitely always a warm cup of coffee (wine at night if I’m lucky).

Now, my thoughts move to everyone and everything else. Are the pets fed? Is dinner thought out and/or is it something Michael can handle if I’m really not up to it? What would it be like to ask him for help but then step away and let go of control (haven’t mastered that one yet, TBD). How long is my work day today, are there chances to catch my breath at all during it? Is today a running day, if it is I should have extra coffee. Do I need a Ritalin? Oh maybe I’ll finally remember to take my electrolytes…probably not. Should I go to the vending machine, no, christina do not waste money when you have perfectly good snacks at home. And my all time favorite daily debate, if I just order lunch out today I can promise myself I won’t do it again until next pay period.

This stream of consciousness is usually followed by Thoughts of hope that all of my friends are okay today, I hope for them to have something good happen at some point and they smile at least once. And I think about each individual and what’s going on with them and follow those thoughts up with as many well wishing texts as I can get in before my day slips away from me (sorry if you’re my friend and you don’t get daily texts).

And by the time 8 AM rolls around I am exhausted, emotionally and physically because I don’t know what it’s like to turn my brain off-hence the wine some nights. At this point though I have prepped, catastrophized, planned and accommodated enough to last a week, fully knowing I will go through that cycle all over again the next morning.

Come into rag doll here. Bringing your feet wide, bending at the hips, opposite hands reach for opposite elbows. And rest, letting your head hang, gravity gently tugging at your neck. Slowly nod your head yes and release tension.

Breathe.
What is it like to sit in the shit? What is it like to feel that tension release and to feel all of your feelings without distraction, and without judgement? What is it like to not try to ch age the feelings?

These are the things I think about when life is hard, with and without a chronic illness. These are the things I think about when life happens and I am stuck in the suckiness of it, but also stuck in the MS because of it.

The other night I was whining to Michael over a weekday glass of wine, just expressing my frustrating in feeling so stuck despite working so hard to do all the “right” things. To continue doing the things I know will help, and do help regardless of how quickly I see the results.

Without knowing this, I had a dear dear friend say to me the following morning, “I feel like you’re stuck in an unfair spot, and also a pandemic.” And those were some of the most validating words I had heard in a while, and she was right, things do feel unfair; not only for me but for most everybody I spend time with and I talk to.

So, without boring you with the details and specifics, I will say that life has been throwing me some curve balls lately and the extra, out of my control stressors, have been piling up. Along with these things, comes into play my own mental health issues ( I plan to create a post about anxiety and depression in the future). My depression is at an all time low, that of which I feel I have not experienced since high school. And my anxiety feels pretty unmanageable to the point where I do have a hard time veering even slightly from my quarantine routine.

So, couple all of that with MS. Which causes which?! Is my stress made worse by my MS or is my MS exacerbated by the stress? The simple answer is both.

That being said, how do I navigate the suck that is 2020? How do I distinguish what it is that is causing that suck to suck so much? How do I manage being stuck in the suck?

I am still figuring that out. I am still working hard and challenging myself daily to find new ways to cope, or revisiting old habits that have aided me in the past.

Other than to sit in that suck, I suggest noticing it; what sucks? Why does it suck? And what does that bring up for you. No judgment. No shame. And name that suck for yourself.
Name that emotion (if you need help I have a great diagram!).
And know, please, please, please know you are not alone in the suck. Not one bit, not right now.

Sorry, I went on a therapy tangent there. Anyways, the things I continue to think about during this version of my life is how to work to continue on this track of feeling well, doing well and just being well.

For starters, I plan to absolutely keep working on running (right Michael, Ryan and Rosie? Those Friday glasses of wine make it worth it). I will keep teaching yoga as much, and as passionately as possible (now booking private classes if you’re interested). I will practice my own yoga independently (really enjoying that rag doll). And, I will continue to meal prep and work on some new fall recipes (thank god Michael is no longer allergic to butternut squash…I don’t think…). I will work to cultivate, build and cherish so many, many family and friend relationships. One thing I will say about this pandemic is that it has reminded me and showed me what and who is important and how to show and prioritize that importance. I have re-evaluated meaningfulness when it comes to social situations; and while wine is often the center of gatherings, so is conversation, and good conversation. Games are becoming a renewed pastime and stress reliever, as I have dig into the crevices of my memory and found my Mario skills, or lack thereof.

I will continue to take time to sit in stillness, or even just sit in presence and focus my attention on one single thing at a time, what a concept, huh?

Slowly, carefully bring your hands back to the mat in front of your face. Bringing your feet back to hips distance apart, rounding through your spine come up to stand. Reach up, look up. Inhale through your nose, sighing it out your mouth. Bring your hands to heart center and open your eyes.

• 

What is self-care in the time of a pandemic? What even are coping skills anymore? (I say as I drink a week day glass of wine.) These are the things I have been thinking about lately.

Up through February I planned activities and routines and structured my days, and my life around certain things that I considered “self-care.” For example, a weekly bubble bath, an extra glass of wine, waking up early to take a yoga class, even the occasional retail therapy trip; all of these things would be ways to manage stress, or curb the constant anxiety I am prone to.

But today reminded me, or I suppose validated me. today I spent some time thinking, more time than usual, and I had an “aha” moment. I went about my morning as usual and carried on with work, but I was sad. Today, for whatever reason (I have stopped trying to figure out the algorithm that is my emotional stability, or lack thereof) I was sad, very, very sad and the first thing I thought to do was to go to Target. So, I did. My work day ended and I put on my shoes, since there is not much separation between professional and personal life when I work from home, and I got in the car. I put on some Lady Gaga, quite loudly, and drove the short distance to the store. It wasn’t a completely useless trip, I had a couple specifics I needed, but I wandered for a while. I wandered aimlessly, up and down the aisles, putting quite a few things in my cart; and taking quite a few things out. I looked at fall décor, and bathroom décor, and bedding, and lots of kitchen items, and smelled many candles; I even looked at groceries and snacks. I ended up settling on a mat for cat litter since Binx is quite messy, a new front door mat and some fall décor (owning a home is fun, and expensive).

Anyway, that’s is fun for me, browsing, wandering, spending; it is all reasonably cathartic, usually. But, not today. Today my coping skill didn’t work. I got back in the car and did not feel any rush of endorphins. I did not feel happy despite liking the things I purchased. And, I wanted more. Not more in a materialistic sense, but more in a coping sense.

So, I went home, arranged my new things and planned dinner. Cooking! Yes, that will help.

Nope. Wine? Only momentarily. Ok, ok, I’ll take a bath then.

But at what point do I stop and actually feel, and deal? Currently life is a daily game of do we feel today, or do we deal today? Coping skills, are no longer ways to cope. Coping skills have become the norm, have become a baseline requirement for functioning.

How do I manage, now? How do we manage, now? I absolutely do not have an answer for that. For the time being I will keep running with lovely people (we’re up to about 2.5 miles), I will resume teaching yoga on my terms, and I will write. I will write and write, and write.

Happy pandemic life to all, I wish you all the best, and all the health and all the coping.

I haven’t posted much about, or even been vocal about how I feel regarding the world we live in. And in truth it’s because the majority of the thoughts I have are negative. They are hate filled and ridden with anger. Sadness, disappointment and fear line my consciousness every single day and I feel so out of control.

I don’t post, I don’t write about, and I don’t share unless asked because I am fearful I have not processed enough to remain eloquent and respectful. Every person I know has different ideas and different views so I am being careful to align myself with those I rationally can commiserate with, and have healthy conversations with.

Thankfully, Michael and I are in agreement in 99.9% of everything we face, as a couple and as humans.

And that is all we are, at the end of the day; fallible, faulty, broken. And those traits continue to be exposed. our pure humanness seeps through the cracks.

So in an appropriate expression of our combined anger Michael and I finally had a good talk about how we feel and about how to proceed.

We are working diligently through this fear to continue to plan our future and learn and grow towards betterment of society, of ourselves as Americans. As we discuss our family’s changing goals and needs we are mindful, and oftentimes hopeful.

We know what has shaped us to be better, to do better, to know better. We hope to help shape the future generations to be even better than us. We fear for generations to come but we expect to raise a hopeful, fighting part of that generation that is ahead of us. We hope to create individuals that will be even better than us. To create little humans one day that grow into powerful adults that work tirelessly to make the next generation stronger than this.

I only share my family plans and hopes with those in my immediate circle because I truly believe it is so incredibly personal to each person, and each couple has their own narrative to be kept so close to their hearts. But in all the life changes I experience and my observation of dear friends’ changing stories, I am beginning to really hone in on the ideals I hope to instill in the world to come.

So, while I remain quiet during this upheaval of society, I know that I am working, I am growing and I continue to shift. I know that Michael and I are talking, we’re learning and we continue to plan.

I’m having a flare up. A flare up of new symptoms. A flare up of continuous discomfort from existing symptoms. A flare up of symptoms that lasts more than a couple hours.

I often feel daily discomfort and residual symptoms. But for me, a flare up is an increase in that discomfort, lasting more than a few minutes to a few hours. Discomfort, often times pain or inability to perform certain basic bodily functions. Discomfort that does not get better with rest, in fact it interrupts restful sleep which prolongs the discomfort.
Heat can be triggering for MS.

Now, I love this home I have created with my dear Michael; however, it has no air conditioning. So I’ve been surrounded by ongoing heat and humidity which regularly is bearable. Prolonged exposure to this heat, though, is apparently crippling with this disease. Prolonged exposure to a home that is 85 plus degrees, multiple days in a row is crippling to this disease.
Last night I felt new symptoms creeping in which sent me into an unmanageable panic attack. What was going through my head? A lot.

The things I was thinking about were: will I be able to walk tomorrow, will I be able to hold items, will I be able to see, will I be able to sit upright, will I breathe with ease, will I be able to feed myself

All of these are things that have been impacted in the past by my illness.

So, after a tumultuous sleep I woke up and this is what I felt…

I can see, yay, but my dizziness is so bad that my vision is blurred. I can breathe, Yipee, but my intercostal muscles are so weak that it hurts to inhale. I can walk, ok good, but slowly and unsteadily, my legs are dragging with exhaustion. And yes, I can hold things, but I feel burning and prickling throughout my shoulders and arms.

I think that it is good I still can function and I can do my work, thank goodness I’m working from home today. I think that I am glad to be able to prepare a smoothie and heat up rice, Michael is already aware we’ll need to order dinner tonight. I think in the immediate, it could be so much worse.

Then my intrusive thoughts make their appearance. I feel guilty for whatever stress I may cause Michael. And guilt that I cannot be fully present or capable in helping with any household things at the moment. I feel sadness that at (almost) 32 years old he has had to choose this life (though I thank the universe daily for giving me the opportunity to choose him).

Then my thoughts expand. I have to back out of a planned work out, though I know it’s best, I feel sad and I feel angry that this disease does often control decisions I make. I have commitments and celebrations and plans for the weekend (at socially acceptable distances while masked) that I may have to cancel, and I worry others will feel saddened by my physical lack of support. I worry. Period.

And, as I reach out to friends and to family to share this information, I think about the fact that this will never go away for me. And I work, and I pull and I reach to find what little shreds of acceptance I can. However small, I look for promise. Because, on bad days it is hard to find.

So, I took a moment this morning and went outside, and sat in the shade. I watched the dog leap around the yard with pride throwing his head back to bark, and I stuck my feet in the very cold water in his pool. In that moment I found the day’s acceptance. In that moment I was able to admit and think that this is no fun, this is actually a flare up., not just a bad day.

But

Flare ups happen, bad days are okay. I will be intuitive and nurture myself and start over again tomorrow.

Oh, and I start therapy again on Tuesday.

In the past year, for many many reasons, I have noticed my anxiety slowly increase. It has continued to climb pretty steadily for, at a minimum, 12 months now and it has felt increasingly overwhelming and unmanageable; even attempting meds made it worse because I am prone to every single debilitating side effect.

This quarantine certainly is not helping my life on the edge of agoraphobia.

However, this quarantine has brought me back to the present moment, and I feel I truly have my new pup to thank for that. Maybe I am being overly emotional. Maybe.

When I needed it the most, that was when I met Binx. And now, without knowing it, I needed Riker.

Yesterday, a friend stopped over to meet him (within the confines of social distancing of course). We said, multiple times, “I wish I was as excited or as happy as he is about literally anything.” Seriously though, this dog is 100% entirely present in every single moment he is experiencing. Due to this, I have inadvertently been forced into more presence, more often. If he barks, forget the episode of New Girl I have been trying to watch for 17^th time. Or never mind drinking any coffee while it’s still hot. When this little buddy needs me, he needs me now and I spend those moments focusing all of my attention on him. In a way, I meditate on my dog. (well…now I sound like an obsessive creep.)

But, this pooch has also reminded me what it means to fully feel feelings. I asked Michael the other day what has been surprising to him about owning a dog and his response was something along the lines of how emotive he is; but also how many emotions he evokes in us. More so than not, I have been extra skilled in ignoring any emotions that arise within myself, but when Riker is involved I feel angry and frustrated and defeated. Also, I feel love and hope and happiness beyond measure. He really has brought with him so many lessons, and reminders of what it is to identify, to feel and to express emotions. Which has been for me, the most important part of managing this lock down/quarantine/pandemic, whatever it is called.

So, in learning from my puppy, I can still get excited when I see people walking down the street, I can still stop and smell the flowers (though not every one needs to be sniffed), and I can still own my sadness while finding any joy in small things that bring out the tail wagging energy I need to get through each day.

January 24^th will be 12 years since I woke up and lost vision in my right eye. 12 years since people began taking my complaints seriously. 12 years of proof that I have this disease. 12 years of dis-ease.

12 years that I cannot downward dog my way out of.

I have a reached a new level of acceptance; a new realization on this path in my own version of Multiple Sclerosis. I have finally worked to be able to voice these thoughts out loud (and now on paper) for what feels like the first time. For the majority of those twelve years when asked how I am, or how I feel, I minimize, or disregard completely, how I genuinely am. For the sake of others’ comfort, I will say “oh fine,” or “I am ok,” sometimes I even say “good,” just so I don’t have to see the confusion, the sadness or the uneasiness on their faces. I believe this is ok to an extent, this is a coping skill I use and oftentimes it is my saving grace. 100% of my day is spent thinking about, managing and accommodating my illness; in these moments I don’t have to talk about it. But I have made an error in doing so for so long.

I have created a world in which I live that does not allow me to experience, express, or manage how I genuinely feel. This realm that I am existing in is just that, existence. Existence so that others feel better. And this existence has led me to struggle with identifying what is actually happening inside my body and my brain.

When it comes down to it, no, I am not okay. I am not okay in the sense that you are okay; in the sense that you function throughout the day to day without having to stop and think about every…single…move you make, or every…single…decision…you are faced with. Everything I eat impacts me, every pair of pants I choose to wear has consequences. The amount of time I sleep, the amount of water I drink, the social activities I engage in, even the work I do; all of these things effect how I feel minute by minute, hour by hour. I am slowly learning how to live the best way for me; but in doing so I am facing some realities I have not given myself permission myself to accept and truly experience for the last 12 years.

This past weekend I spent time with five beyond amazing humans (seriously, every person I have met because of Michael has been so so so wonderful). We enjoyed another city, in fact, another country, we ate such good food, and we experienced great music (minus being trapped under a smelly parachute).  But, it was in these three days that I became so acutely aware of all the things I have to do to survive in a “healthy bodied” society. I noticed every quirk I have and all the irrational anxieties that flood my thoughts day in and day out. I also observed that these perceived quirks and irrationalities are due to my chronic illness; these behaviors and thoughts are due to not feeling well 97% of the time and that other people (most often than not) do not know this, or are unable to empathize with this.

I am challenging myself to discuss this more with those around me; with those I feel safe with. Yes, yes I write a blog all about it; but, as terrifying as it is to share with the internet all of my thoughts and feelings, it is even more frightening to be face to face with someone and have to be vulnerable. More recently when people ask how I am, I have been saying “okay,” instead of “good,” as a way to ease into this new communication. Because while I am not the typical definition of good, I can promise you I am not bad, I am not unwell (unless of course it’s a bad day in which case I will probably be home and not providing the chance for anybody to ask how I am doing).

This acceptance I am facing will hopefully lead me to more answers, more coping skills and more ways to manage my MS. For example; I recently saw my neurologist and I believe that because I have been “good” for so long, he is being dismissive of my new complaints and concerns. That because I don’t look like I am struggling, and most of my symptoms are sensational versus functional, he is minimizing the new challenges I do face as my life evolves as it should. I am noticing more that when I do put myself out there and attempt to explain how I am feeling, others also minimize this, trying to rationalize how I am feeling or explain it away with simpler, more temporary ailments.

None of this is helpful for myself and for those close to me who bear the brunt of my frustrations (I say it all the time, and I’ll say it again, Michael is a saint). I feel alone and isolated, simply due to the fact that it is hard to express and share my world with MS, and that most people do not understand. And when I say understand I mean fully comprehend this life; empathy is huge and 99% of the people in my life empathize and support and care for me and I would hope they don’t feel all the gratitude I have for them. But so far, MS in my late 20s, and whole month and a half into my 30s, has been very different than the MS I had 12 years ago.

MS in my 30s will involve me asking for help, communicating more clearly, and advocating for more answers. MS after the last 12 years will be my continued learning and adjusting, my managing and accommodating; but, also a lack of shame, an increase in self-respect and more hope that I can feel well day to day, while I openly share my quirks and anxieties.

As the ball dropped, Michael made a joke about being able to see clearly now. Maybe it was because I had a drink or two, or because I was basically sleeping standing up at this point in the night, but it took me a while to understand that he said that because it is now 2020 (he’s a funny guy). Anyway, happy new year; let me tell you about the things I have been thinking about for the past five days now…

I think resolutions are bullshit. I don’t like them, I don’t like the thought, the word itself stresses me out. Resolution implies that I am not good enough, that I can do better, improve things or try harder. To set a resolution is to tell myself that who I have been up until this year was not good, that I need to change; also, good luck keeping any resolution much longer than January.

To me, resolutions are unnecessary expectations and pressures that we put on ourselves because maybe there is something we’re unhappy with, but also, maybe there are things that we are told to be unhappy with. Maybe?

Going into a new year feels like a chance to learn to build upon what already exists, what is already being done well. It is a time to recognize, that while yes, you may have a desire to feel better and an overall want to perceive things as “better”, it is important to set realistic, achievable goals. For this reason, I prefer the word intention. The definition of intention is “an aim or a plan,” which is much more palatable than “a firm decision to do or not to do something.”

So, for 2020 I will set intentions to be kind, to be full of love and to focus on my own goals and loving the life I am continuing to create for myself. This last year was stressful for me in many ways and I have been finding myself comparing that stress to others, which is not fair to me. This comparison process minimizes my own experiences and invalidates my day to day. So, I did not post a collage of my top 9 photos of the year, and I did not do a personal timeline of my last decade so as not to feel any way regardless of my own perceived successes or failures. My transition into this new time has been filled with brief moments of soul searching, goal setting and taking time to identify what it is my body needs and my mind wants.

While I did my yoga teacher training I learned to love back bends, heart openers and a general feeling of openness (if you own a cat you know this can be a very vulnerable place to be for animals and humans) . Recently, I have noticed myself literally and emotionally closing off to all of those poses and what they mean in my life on and off of my mat. Whether due to physical or emotional discomfort I have been cheating myself out of Camel Pose, Bridge Pose and even a restful Savasana more often than not.  Moving through this year, I intend to open up again, to find my voice and find my heart in a way that is authentic to me; in a way that makes me feel whole.

In this next decade I hope you for you all that you need, all that you want (within reason, maybe there is a lesson in not getting everything you want) and all that is comforting. And, if you take any of my yoga classes I hope you are ready to open up and restore, with intention of course.

When I turned 18 I thought, “finally, I am a grown up!” I thought it would be a wonderful experience full of adventure, trial and error and living my best life. That was 12 years ago to the day.

When I was 18 my mom and I sat in the doctor’s office wondering what thirty would look like for me. I was newly diagnosed with MS, I was so small and so scared.

Now, today, I turn 30. December 7, 2019 I am now thirty years old and very often all I can think is, “when will I feel like a grown up?”

But in reality, I am a grown up, a full-fledged adult. Yay me. I woke up at 7, I am sitting snuggled on my couch drinking my coffee (because now I am thirty I can’t function without it) and watching re-runs of Grey’s Anatomy, mixed with a little Disney Plus when the dramatics are too much to handle. I pay my bills, I feed myself and make sure I sleep. My mom asked my intentions for my next decade of life and the first thing that came to mind was to make sure I wash my face every night and every morning (right Kels?) and brush my teeth more often.

I woke up to a text (well many texts) sharing that I have what most people strive for; and that is knowing how to love myself, care for myself and listen to myself. Let me tell you, it took close to thirty years to learn these things. It took a diagnosis at eighteen to learn a lot of lessons, and it took the amazing support system I have to validate and enhance these things that I know.

Yes, my first decade was a typical ten years, I was raised by many strong inspiring people and I learned from every person and every place I encountered without realizing the impact it all had on me. Then my next decade showed me how far my strength could go. My teens brought to me the start of perceived adulthood, and the start of a new life as I knew it. But that seems fitting, no? At 18 individuals become of legal age, graduating high school, and moving into the real world in whatever way that comes for them and learning to grow and change as a person. I did all that, but also learned all of that with a disease. So my life, at this time, would have changed either way, mine just happened to change in ways 18 year-olds don’t often need to consider.

My 20s, despite being the most recent, are the most relevant. The most influential in creating the grown up that I am. My 20s with MS taught me what is important, taught me who matters and taught me what is worth my time. There were times that I thought, I have this disease I don’t deserve to do the things I want, or that I am not capable of living my dreams. However, as often as I had those thoughts, twice as often I reminded myself that I don’t need to live a miserable, unfulfilling life. I created a new story at 23 when I lived on my own in a new state. That story said I can do whatever I want, as long as I also rest when I want. I began to live a new narrative that allowed me to have pity parties, but only for one day at a time, and only if I picked myself back up and kept doing my homework, or kept going to work and kept paying my bills.

So, entering my next ten years I plan to continue to tell myself these stories, to remind myself I deserve to feel well, to do well, and to be well. I deserve to love so hard and so much, but to also accept all that love from others close to me, and on the edge of my life. In my thirties I plan to only make my life that much better, and to feel that much more proud of all that I can and will do every day; and that includes washing my face and brushing my teeth, hopefully. I will continue to practice listening to myself, caring for myself and loving myself.

Every year I would receive a joking phone call from my grandpa saying, “good morning, I am just reminding you that it is Pearl Harbor Day.” And today, I got a message from him starting with, “happy special birthday,” and ending with, “don’t forget that it’s Pearl Harbor Day.” My love for history, and my immense respect for the second world war will never let me forget that it is a day that will live in infamy. But, I will also choose today to honor me and to begin my next decade feeling loved and supported and strong.

I am still small and sometimes scared, but I will spend today, and quite possibly the next ten years, wondering when I will grow up.