Sanity in Social Isolation

Part 1-My own experience with isolation, and how to stay sane:

When the government in my state announced the mandate that we should practice social isolation, my life didn’t really change much. I am fortunate enough to work for a company that values us as people, and has made working from home not only do-able, but enjoyable. This is, to date, the easiest social isolation I’ve done. And yes, I’ve done it before, more than once.

One thing that makes this different, and carries its own difficulty, is the uncertainty surrounding the situation as far as what the world will be like when it’s over. In the past, I knew the world would be the same when I re-entered it. Now? There isn’t so much certainty. If you’re struggling with that uncertainty, or the loss of normal daily life, it’s okay to grieve. I did every time and it was vital to my health.

The first time I was isolated was brief, and due to swine flu when that was the virus we were all worrying about. I was at home for two weeks, and the Stephen King mini-series marathons on TV were absolutely the only reason I didn’t sleep the entire time. I didn’t learn much this time, mostly because I was unconscious and resting for most of it. The thing I wish I’d done differently was text my friends more. I could’ve used the support and the social interaction.

The second time I was socially isolated, it was due to an extreme, but acute, bout of depression caused by the situation I was in during the fall of 2012. I will most likely write more about that in my next post, but for now: I lived alone, in a big city, with zero friends there or in my hometown, and I was expected to function completely alone.

First, I was fortunate to have all the creature comforts I could want and supportive parents. I had school to distract me, though I essentially stopped attending classes and disappeared from the world for an entire semester. I left my home once or twice a week to eat, and then enjoyed, to the best of my depressed abilities, Netflix, video games, phone apps, and an unholy amount of sleep the rest of the time.

This? Not healthy. That is NOT the way to go through social isolation and I really urge everyone to remain social and productive in some way. I nearly died, and I say that to press the point that it is not good for you. I wasn’t being forced into isolation, but I was isolated, and I handled that isolation in the worst way. It also seems to be the biggest temptation if you’ve lost your job or social connections during this time. No matter how alluring sitting on the couch watching TV seems, it’s not going to do you many favors.

The one good thing I did for myself then, which I do recommend, was that I took a lot of late night walks on the beautiful campus nearby. The fresh air, scenery, and exercise are probably some of the biggest reasons I wasn’t more sick (I left there with physical illness from ignoring my physical needs). It provided a needed respite from my self-imposed prison and restored my sense of peace and calm. If you can’t go for a walk, try to find images of nature or even a virtual tour of a park or facility you enjoy. You could even imagine your favorite outdoor place.

There was a little less “outdoor” for me during my third isolation but, it was also much less lonely, and healthier. My 2015 illness, which is explained in one of my much earlier posts, put me in bed. The summer heat kept me inside even after I was able to walk around.

I spent 7 months isolated with my family because I simply didn’t have the energy to entertain guests or have even a small conversation, for that matter. Believe it or not, I stayed mentally healthy the entire time. I was being physically tortured by my own body every minute of every day, and I was isolated with my parents, and I still managed to stay happy. Not everyone is so lucky and this was absolutely not completely due to my own actions. I am grateful for the people who helped me. None of us can do this isolation without some kind of support, even if it’s long distance.

How did I help myself when others couldn’t? I breathed. I was in a constant state of focusing on my breathing; a breath in for a four count, hold, and the slowest breath out for as long as I could manage it.  It’s a meditation technique but it’s also a calming technique medical professionals recommend for anxiety and to reduce all kinds of physical illnesses like hypertension. My entire day was me focusing like this, to stop the constant pain and nausea and to keep me sane. On its most basic level it satisfies the primal need for air and tells your anxious/stressed body “I am still breathing, I am still alive”.

If you’re feeling overwhelmed, this is a good way to get back to basics. If you are healthy and able, focusing on breath can be a wonderful way to ground yourself. Don’t stress about the “how”, just breathe in whatever way helps you. Try reading 10% Happier by Dan Harris for some excellent tips on different types of mediation and a great read in general.

What if you’re sick, and breathing is difficult? Or your panic attack is too overwhelming to breathe? I had days like that too, when my heart condition was bad and it felt like all the air was being pressed out of me. In those times, I would focus on a part of my body that didn’t hurt and think about what it felt like. It’s a mindfulness technique that takes your focus away from the negative stimuli and brings it to something benign and lacking any unusual stimulus. The bottom of my foot was my part of choice.

Part 2-Replacing anxiety with activities:

Aside from practicing mindfulness meditation, I picked up a lot of hobbies. Previously I had really only played video games, read, or watched movies. Now I was hungry for absolutely any activity to distract me. It worked.

Here are the things I did to entertain myself: I learned everything I could. I focused on self-improvement instead of entertainment and actually found I was more entertained that way.

YouTube is amazing. I learned to Knit, to sew more complex things, to embroider, and to solve a rubix cube the slow way. I practiced piano. I stretched and went for walks with my parents when it was safe for me. I read non-fiction books and fiction books. I played puzzle games. I did puzzles, almost constantly; we had a puzzle on the table daily.

I practiced drawing. I colored in adult coloring books. I took long baths with bath bombs and calming music. I learned anatomy (and then forgot most of it). I went on www.memrise.com (which does have more than just language lessons) and www.khanacademy.org and learned everything I could. I practiced mental math until it wasn’t difficult or scary anymore. 

I took in anything and everything. My mindset was “If I’m going to die, then I’ll die knowing I did a lot of things. If I’m not, then I’ll live with more skills/knowledge and maybe I can help someone else.” The fact that I wasn’t bored out of my mind helped too.

There is always something to do. Enjoy the view from your room. Learn something new. Count everything you see that is a particular color. Make something to donate or share like a fleece tie blanket or a heartwarming painting. Take time to appreciate your loved ones. Practice not caring what others think and being yourself, because we all need a refresher on that sometimes. Confront your fears. Share your fears with someone else. Give your pet attention. Give yourself attention.

Part 3- Gratitude

This has been the easiest isolation for me because I still get to talk to my coworkers. I still feel like I am offering something to the world (which isn’t a requirement, but it’s something I enjoy doing). I can eat, and exercise, and get out of bed. I can use my phone and have the energy to talk to loved ones.

I am fortunate. I know this. Some are not as much so. But if you’re reading this, and you find that you’re scared, or bored, or wishing you could get more social distance between you and the people you live with, maybe this will help.

Life is not always what we expect. Sometimes we have to do it differently, or alone, but we adapt and survive anyway. Every time I was isolated was different. The time that was the healthiest was when I focused on self improvement and my breath. My gratitude, and my entertainment followed naturally.

There is value to anything and everything, even if our culture tells us otherwise. Even if what you need to do is sleep, you’re resting your mind and body and that’s important. If you need to cry and grieve for the life we were living before, that helps to refresh your body and relieves the stress and pain. Everyone worries, that’s normal. Just remember to try to let go of the things you cannot change and focus on what you can. Even if the only thing you can change is the pace of your own breath.


Spoonie Grief

Lately, I’ve been struggling a lot with the anger side of chronic illness. It’s common, especially considering life with chronic illness is similar to going through the stages of grief repetitively, depending on the day and your symptoms.

The one stage everyone expects us to be in is acceptance, and if you write/mentor about or advocate for chronic illess it goes double. That’s not the reality. Some days, I accept my situation, and see all the bright sides, and it doesn’t bother me at all. Some days I’m just sad that I can’t do all of the things I want to. Lately though, I’ve been angry.

I’m angry at my luck. I’m angry at my body. I’m angry at the fact that there are so many people who have perfect health that never have aspirations past going to work, coming home, and going to bed. Not that it isn’t a perfectly acceptable life, but it isn’t the one I want. I want to do so many things; I want to learn and be good at so many things. So, sometimes when my body stops me, I feel so angry at the fact that so many healthy people take their health for granted.

Mostly, I’m angry that when I was healthier, I took it for granted. I skipped so many things because of stupid reasons: because I was scared, or embarrassed, or just thought I’d have time for it later.

I am luckier than most, and I can still do a lot, but I also still get angry and sad. I guess I just want people to know that if you know someone with chronic illness, and they’re usually very good about it, that doesn’t mean they don’t also have bad days.

None of this means I want anyone to magically make me feel better. We are told so often to “keep your head up”, “stop crying”,”it’s not so bad”, and other similar things. Most people don’t want to see our reality, so when we’re staring at it and dealing with it in our own way, there’s nothing worse than having someone try to brush the bad off.

I am entitled to my feelings-all of them. I am allowed to feel sad, just as much as I am allowed to feel happy. Taking away my sadness or anger just strips me of another part of the full scope of the world and my life. So I have no plans to pretend that those feelings don’t exist.

I’ve never had a problem pushing forward and fighting for as much health as possible, but that doesn’t mean I always have the positive and motivational attitude everyone expects. Spoonies learn to handle a lot of things on their own because many people are uncomfortable by the bad things chronic illness entails. If you have someone in your life who suffers from chronic illness, please try to remember that shoving the bad away is like telling them a portion of their lives shouldn’t exist, and that their sadness and anger, and ultimately their illness (which is a part of them whether anyone likes it or not) has no place in your life. But you cannot have that person without also having the negative parts of their life too.

Today, I’m angry, but that’s okay, because tomorrow I’ll get to feel something else.

New Year, Same Me

I don’t like New Years.

This isn’t because I hate parties, though, if asked to choose between a solitary activity and a party I’d probably choose the former about 85% of the time. No, it’s because I’m not a fan of the idea that you have to wait a year, for a magical day, to change anything about yourself. If that’s your thing, then you do you, but it’s not for me.

1. This opens up the next year for a lot of feelings of failure. You didn’t lose weight? Failed. You didn’t stop drinking? Failed. It’s this barrage of mental “you suck”s and then you have this expectation that the reset button is January 1st. Which for some, is 11 months away.

2. This leaves the idea that growth, learning, and success don’t also require mistakes.

3. It causes people to give up during a process that takes time, second (and third, fourth, 5th and so on…) chances, and a lot of getting back up and trying again with the same faith in yourself that you started with.

So, yep, I absolutely hate New Years. To me, these things should be tossed on their head and it should be done differently. For me, NYE is just another night. NYD is just another day. In fact, we spent today hanging out just like any other. I didn’t clean, I didn’t write resolutions, I didn’t pledge my year to health, or a skill.

I did buy some new instruments because going forward I would like to do more music related things. This thought isn’t stuck in the new year, it was with the new day. A new year’s resolution is like mud on your shoe. It starts fresh and thick and as you walk it rubs off in the grass, then eventually you forget it. But a new day’s thought, one that is less tied to time and more tied to you, is like a pet that walks with you and keeps you company wherever you go.

I want my goals to stay, not fade away as the year goes on. So I take every new day as a new chance. A new chance to drink more water than I did yesterday. A new chance to exercise. A new chance to clean, work on a skill, or change a part of me that needs work. But if I fail, I don’t think “time to quit until next year”, I just think: the next second, minute, hour, or day, are perfectly new and fresh opportunities.

No one is transformed when the clock strikes midnight. No one becomes someone new. The phrase “new year, new me” ignores the person you are. It ignores the good things about you. It ignores the process of improving, and the cycle of failure that naturally comes with it. Every day is a new chance to grow. Take the mistakes and embrace them, but don’t let them stop you from trying. Don’t forget the person you are, and embrace it. You don’t throw you away, you just add on better things. Don’t wait to make positive change, just make a new choice in the next second, not the next year.

There’s a lot of superstition surrounding new years: don’t go into the new year with anything you don’t want or you’ll have it the whole year. Well, breathe easy, because it doesn’t matter. Chronic illness teaches a lot of people that. The day changes constantly for spoonies. One minute can be wonderful and the next can be agonizing. If I quit every second I couldn’t breathe, or I was in pain, or felt nauseous, I’d never do anything.

My successes grew from a lot of moments spent on the floor. A lot of mental and physical illness moments. A lot of failures. I’ve had days that were going great, workouts happened, meals were cooked, the house was cleaned, and then the very next day it was destroyed. Those 2nd days sometimes involve me gasping for air, or wanting to jump out of my body because of some constant nagging pain, or struggling to do anything at all.

Sometimes, those 2nd days came after a doctor’s visit that destroyed my hopes. A visit that felt like my symptoms were so horrible, that I was struggling so hard, but that the doctors weren’t listening. Some visits involved waiting for tests to come back, and finding out still there were no answers.

One year, there were answers. After so many months of struggling, of tears, of shattered hopes, I finally found a doctor who listened, who believed me. I always think back to that any time I try something. I remember all the timed I failed or the situation failed me, and I think about how many times I tried again before finally getting some success. Every time we fall, we shouldn’t wait for a special day to make our lives better. We should get up, and push forward. At least that’s what I think, and I try to lead by example.

Philosophy, Entropy, and Housework

Before I start, I’d like to mention that this piece is a creative experiment on my part. It’s less of a blog about life, and certainty, and more of a blog about an idea I play around with. It’s a bit technical sounding, and this is most likely because I have a science background and am used to reading about these topics in textbooks and dry research papers (bear with me if you can).

I’ve been really busy lately because I got a new job. I’ve also been trying to finally stay on top of the housework and cooking; I’m proud to say I’ve succeeded so far. Our home is clean, the laundry is done, and we’ve eaten healthy meals 5/7 days. I’ve even had time to start a project.

I’ve noticed this week, that keeping up with all of these things has been stressful. Managing my life in a way that maintains cleanliness and order, is inherently difficult. Why? Because scientifically, “chaos reigns”. Entropy is a part of thermodynamics, it’s also used to describe the idea that everything declines into disorder, as opposed to becoming more ordered. This is a really complex idea, that has other facets and nuances. For my purposes, we’re going to think of it in a more abstract and philosophical way, and not in the typical atomic level of thinking (so, no sending me death threats my chemistry friends).

My philosophy of entropy: if something can decline into chaos, it will without sufficient energy placed into it. This is my own build on “Murphy’s Law” which has typically been quoted as, “If it can go wrong, it will,” or various versions of that sentence. For an example, I recently started a job as a data associate. I sort through data as part of a team, and we all organize everything the best we can. That’s the order and energy we put into it. If we don’t put as much energy into organizing it, as energy is put into adding new data to it (hint: we couldn’t possibly), it’ll be less ordered than ordered. In life, I try to think of things this way. If I am trying to keep the house clean, and prevent problems, it requires a lot of energy.

Whether I have the energy or not depends on a lot of things. Did I have help? Was my chronic illness making me tired? Did something happen to add more chaos than I have energy? The big one is chronic illness (surprise, I’m bringing that one up again). Does it make sense to beat myself up and stress myself out over the energy I don’t have, or is it better to just do what I can and accept chaos will happen?

I do what I can, there will be days when I cannot possibly put enough energy into maintaining order, when that happens it’s my job to accept it. Chronic illness is always like this, because often our bodies give us chaos in truck-fulls. Any Spoonie can tell you that trying to keep everything perfect is an uphill battle, and sometimes you’ve just gotta let yourself slide downhill a bit before running as far as you can again. Does this mean I just let everything get worse and enjoy life and stop stressing? That depends on how much time I have to slide, and run again.

This requires a thought about certain illnesses that shorten our lives. If I was diagnosed with a form of cancer with a historically poor remission rate tomorrow, I would most likely stop worrying about fixing my home chaos, and put all my energy into disrupting my physical chaos. My heart condition on the other hand, is not terminal. I have a seemingly extensive number of days to spend fighting the chaos and making our home nice for the man and cat living there with me.

Every system has a set amount of energy. Energy cannot be created or destroyed, only transferred. Each person has to decide where they want their energy transferred to, and that requires motivation. I always try to have a reason, a good reason, for putting my energy somewhere. My energy, especially as a Spoonie, is valuable. I don’t want to throw it at useless things, so I think about why each thing is worth it to me. My boyfriend and cat take priority because I love them; I want them to have a nice home, and comfortable lives. It’s worth the energy to me to make that possible. My body is also a priority, so when I need to I put my energy into resting, sliding downhill and relaxing for a bit. It’s a balance, and that’s always the goal. That’s the whole point of my blog: balancing my life while living with chronic illness.

No matter what you choose to put your energy into, if you find the right motivation, fighting the degradation into chaos is a lot easier.

End note: This isn’t my best writing, and I know that. I didn’t put nearly as much time or thought into this as I normally would. I’m trying to make content weekly and unfortunately my energy input wasn’t as much as the chaos. Hope to post next week; thanks for reading!

Burn-out, Balance, and Change

Go on social media, and you’ll see a thousand videos that make you laugh, cry, or cringe. Some gain their followers or reacts by being controversial. Some prefer to just produce comedy. Some are designed to help the world move in the direction the creator feels is beneficial for us. There’s always a video to find. There’s always a person behind the video’s creation. There’s always an audience that forgets about that person.

When I started my blog and YouTube channel in 2018 it was a way for me to get away from things going on in my life. They were rough, and not things I could change or control; so I chose to change my focus. I used my free time to focus on hobbies and art, and making videos from those. I used my weekend mornings (which were unfortunately very lonely) to write blog posts. It was phenomenal, because even under the weight of my problems I still managed to get up and do something that made me smile. I chose last year to only put things up when it suited me, because my life changed and posting all the time wasn’t feasible without giving a huge part of myself to the wants and needs of a social media audience. For this reason, my “brand” hasn’t gotten very popular. This is okay with me; I just want to do what I love and have fun with it. After all, this was my stress relief, not work.

My actions and choices aren’t the norm, as a lot of social media personalities choose to completely involve themselves with their channel or blog — to the detriment of their mental health. I thought about this two days ago as I watched a video from a popular video personality who makes down to earth mom-comedy. She talked about how she’s been stressed and spread thin; that her husband sent her to a hotel at night to get away from everything and just relax.

In our country it’s normal to expect a person to produce a product. Whether that product is entertainment, a service, or a usable good, we are all expected to be productive members of society. Your worth is only as good as the role you play, and that’s incredibly stressful. Don’t get me wrong, I think everyone should do something. It doesn’t seem right to sit around all day and do nothing at all; but it doesn’t have to be for the purpose of proving your worth. I think doing things simply because you love them has value. I believe going to a job every day because you love it, not because it helps more people, or saves lives, or makes the most money, is what brings happiness. Maybe that shines a light on my own values, but it certainly couldn’t hurt to consider. Because the alternative is a world where everyone does things they hate because they want to be valuable, where everyone is depressed and anxious because it’s impossible to be valuable to every person.

I’ve watched friends crumble under the pressure to match other’s expectations. I’ve listened to new college students emit waves of anxiety over making it through, whether school is something they want to endure or not. I’ve experienced my own anxiety over not being productive enough; in fact I worry so much about it that I’ve melded my hobbies into productive endeavors so that I can have productivity and stress relief in one nice little package. A real anxiety reducer…if you do it right (I don’t always do it right).

My housekeeping job has been incredibly fulfilling. I help patients get what they need each day, within the tasks I’m permitted to do without an STNA license. Some days I can make them laugh, or not feel so alone, or get them water and a blanket, or just keep their room clean so it feels a little bit nicer. It’s a job that’s worth doing, that needs doing. It’s a job that isn’t for everyone. The days are long; in my case it’s 10 hours at a time of cleaning patient rooms and function rooms. It’s a job that, if you use common sense and good time management, plus some good interpersonal skills, you can get through quickly and smoothly. It takes navigating patient preferences, surprise messes, and day to day changes, all while cleaning up the things that happen in a medical setting.

It can be gross. It can be tiring. It can be thankless. A lot of the time, however, I receive tons of thanks from patients and their families and our staff. The team I work with is supportive and adaptable, and our supervisor is excellent at her job. They’ve been my home away from home for over a year, and the housekeeping staff have been my work family for about 6 months.

I had planned to stay two years.

I wanted to be there for them after two years of 10 different trainees walking out on the job. Of not getting their vacations, and working understaffed in a field that isn’t exactly easy on the body. Life didn’t exactly agree with my plan. I put in around three weeks notice, and I’m trying my best to do a great job for all of it until I leave in mid-November. Part of me feels like a failure, the other part feels like this is the right decision.

Society tells me I should stay in this job, regardless of how that affects me or my family, because I’m producing a valuable service. My ideals tell me it’s time to go before I burn out trying to balance work and home life; I’m needed at home in so many ways.

I could go into all the detailed reasons I’m needed here, to cook, clean, do laundry, and provide support wherever I can because the people I love need it. I could go into the health reasons that the physicality of the job is taking its toll and I need to find something just slightly less rigorous. The job is a sprint, whereas I’m more of a slow marathon kind of woman. Three days of 10-hours in a row, sometimes four days, and then one or two days off to get the housework done just doesn’t work when you’re trying to get meals on the table each day, and the spaces you live in clean. Waking up at 4:30 AM, and then the next days waking up later for a different shift or a day to fit my family’s schedule, means my circadian rhythms are extremely off. My body is in a constant state of jet-lag.

If I had a different home life, if I was at a different point in my life, or if my body had just slightly more endurance, would mean I could easily continue working this way. For now, I need something different. I need a regular schedule that’s also either flexible, or within time frames that let me cover my responsibilities at home. Some people see this as a weakness, but I see it as a strength. If I find a job that fits well with the rest of my life I’ll be a more productive employee. I’ll be awake and alert, well nourished, and ready to take on new challenges each day. I won’t have the same level of stress that I do now. I won’t be worried about how I’m going to get it all done, because I know I’ve planned for my responsibilities, and a few surprises too.

I don’t want to be like the social media personalities who burn-out and need to get away at midnight. I don’t want to be that person who loses the important parts of themselves and their lives for a job, when there are easily alternatives which suit me better and companies I can be even more helpful to. I also don’t want my career to be the marker of my value. My health, to me, is the most important thing because if I lose it at 30 from burn-out then everything I’ve done will be for nothing anyway.

I want to be productive, I want to fit into society’s idea of valuable, I want to be that model employee. I also want to be a good girlfriend, a good daughter, a good friend and pet-owner. Someday, I want to be a good wife and mother who helps keep her family healthy. I want to be a good example to my children, who can look at me and see a mother who knows her limits, and balances her priorities in a healthy way. The thing that makes life great is the process from start to finish: what we do with this time, not how we end it. Money means nothing if I have to spend it all on medical bills. The approval of a company means nothing if I’ve alienated the people I love, focusing on work so much I forget to actually love them. Our lives are a balance, and sacrificing that balance feels more like failure to me than failing my original plan to make adjustments. Small failures help us grow, but if we fail to find balance in the process of our lives—that’s sometimes too large of a failure to come back from. I’m not afraid to fail, but I’d prefer it be in the ways that help me grow.

Chess, Leadership, and a Polymath

I’m in medical limbo right now, waiting to get a neuro-EMG done, so I’ve been trying to take it easy in my free time. Normally, I’d be writing, creating something, or organizing another part of our home that probably doesn’t need to be organized (again). Lately though, I’ve been playing Runescape (not old school, sorry, traditionalists). For those of you who don’t know what Runescape is: it’s an online MMORPG that’s been around since 2001 and was created by Jagex. It has a massive player following and is incredibly extensive in story-line, mini-games, quests, and choices. So. Many. Choices.

The really fun thing about it is those choices. Don’t like to pick just one thing? Try 27 different skills to master. There’s so many things to explore in game it’s impossible to get bored. You can free-play, but a membership is completely worth it. I’m not here to advertise for them though; I really just want to talk about our society’s idea of choosing one thing.

My entire life, I’ve been told “you have to choose one thing to specialize in”, “you’re a beginner in everything and a master of nothing”, “you’ll never find a good job if you don’t pick something”, etc. the list goes on.

Well you know what? The list does not go on for me. I’ve never seen my way of thinking as a problem, I never considered my life was less because I enjoyed many things. If anything, it was better, because I always had something to do. Runescape was built with this “polymath” style that I love, and other people love it too. Why is it that in games, we all praise the well-rounded, do-everything players, but in life…that’s unacceptable? I love learning new things, and I hate being told that I have to pick one thing and stop learning about the others. Lately, there’s been a lot of talk on social media about how this is a product of late stage capitalism; how it’s because we’re seen as work-horses, instead of individuals with unique minds. I don’t know enough about that to say for sure, but I do know I’m not fond of it.

Finding jobs is difficult sometimes because unless the supervisor hiring me understands that my way of thinking is valuable, they won’t see my value. Even my social media sites for Lock, Stock, and Spoonies don’t stick to one thing and I don’t think anyone minds much. When it comes to job interviews? It comes off as wishy-washy. Which is a shame, because here’s why it isn’t: I know I like these things. I am not uncertain about any of it. I know what I enjoy doing, I know that I’m a hard worker, I know that I have skills that an employer would find valuable, but getting the chance to prove it isn’t always easy. I love organizing things, multitasking (I guess the new term is task-shifting), occasionally doing monotonous tasks which allow me to clear my head and gain some respite, but also doing things that give me purpose.

Research was fun, but I also had a hard time imagining myself in grad school and tied to the research other people wanted. Could I do it again? Probably. Finding the right lab would be crucial, with the right tasks. Microscopy, over animal research, sounds so nice.  I really enjoy maths, and I loved my courses in school, but I’m good at theoretical mathematics, so where do I go that wants that with just a bachelor’s and a basic knowledge? I loved the props, makeup, costuming, and hand and computer drafting courses I took in Cincinnati’s College Conservatory of Music, but I wasn’t there long enough to master any of it. I would love to have the money to get myself AutoCAD again so I could play around designing things digitally. I’ve danced and I loved the physicality and joy it brought me, but my health conditions have made it hard to do regularly. Ballet will always hold a special place in my heart, and hip-hop was just the most fun if I was feeling creative. Filing basic medical records (the kind that follow a template and don’t require specialized education) for my job originally was actually awesome; I had purpose there, and it was exactly the kind of work I could do for hours and never notice how long I’d been working. However, the position was part-time, and I have bills to pay. I could continue listing things, since my list of enjoyable work is pretty long, but I’ve never quite been able to find that job that screams “me”. I enjoy being a housekeeper, but the downside is the physical requirements of the job are exhausting. I find I have little energy for much else given my tachycardia condition.

I want to continue growing, and learning, and problem-solving. I want to wake up every day knowing I’m doing what I love, and that’s not hard to find when it comes to me. I want to go through each day following my passions, and being myself; not fitting into a box someone else has made for me. I know that sometimes, jumping into that box is necessary. We all have things we have to do to survive, to help those around us do their best, even if those things aren’t something we enjoy doing. Life is full of bland, red-tape type tasks, and we do them because we have to. Taxes? I hate them, but I sit down and try to learn more about the system while I do them, because at least then it’s a little more fun than before. Bills? If you set a schedule, and follow a budget, they aren’t so bad as long as you’re making enough money (sorry to those who aren’t, that’s a whole other story that I hope you don’t have to live long). Paperwork you’d rather not do? I try to sit there and just take it one line at a time and think about the rewards that come with it being done: peace of mind, financial security, or job security etc. Need to care for someone else? Some parts of that job are hard and no one likes them, but we get to see another person thrive and survive, and that’s worth it. There’s nothing wrong with being the person who helps hold everything together by doing the job no one else wants. I’ve done that job multiple times, and I’ve enjoyed all of them.

The point is, I can love many things, and dream of the perfect job, while still understanding reality and necessity. I’m not wishy-washy, I’m a polymath. I’m not stuck, I’m traveling to my destination. I’m not giving up, I’m determined to find balance in my life. I’m not passionless, I’m so full of passion it can’t be contained to one subject. Our world is full of unique people, unique minds. Everyone processes information differently, and instead of embracing the unique talents our world is full of, a lot of people only want to surround themselves with minds like theirs. Everyone has that moment, where they’re tired and just want to talk to and work with someone who thinks like they do. It’s less stressful, so I get it. But when you stop and look at each person’s abilities, if you look at the larger picture of how each person fits together in a team, it gets easier to see a functioning whole. Every video-game has the right idea: your team is made of people with special skills and all have their faults.

Chess, the game of kings, is played around the notion that each peace has their faults, and their talents. The knight can travel the entire board very quickly, but he can also get trapped easily. The queen is versatile and an incredible warrior piece, but she’s weak to the bishop (and visa versa) and she can’t jump out of her own lines. The rook can jump to special defense of the king, but he can’t travel diagonally. The pawns have two special sneak attacks, but their straight forward moves put them at a disadvantage. The king is a slow and steady piece who changes the entire outcome of the board based on his moves, but if he’s captured the game is lost. In order to win, all pieces have to be used together, to form the perfect war team and overcome your opponent’s strategy. The reason it was the perfect game for kings, generals, and advisers, was because it mirrors real life leadership.

Leaders learn their team’s strengths and use them to their advantage. They don’t try to ask a fish to climb a tree (as the popular quote attributed to Einstein goes), they tell the fish to swim. If as a leader, you can’t get your team to mesh, maybe you’ve got them doing the wrong tasks. Sometimes, in our country at least, it feels like finding a job is about fitting into a box. The person interviewing you is looking for a specific person with specific skills; and this is necessary to a point. But there are only so many people, and only so many interviewees. Maybe some jobs wouldn’t have such high rates of turn-over if they started looking at their interviewees, who are eager to work and help, as an individual with a skill. If corporations started creating positions for the people who come to them, instead of fitting one person into a cookie-cutter job, they’d be fluid and adaptable to change. The world is changing quickly, our environment, our governments, our mindsets. The members of each team, whether it’s research, government, education, or corporations, they can play a role in helping those entities thrive, or fail. It depends on how willing our leaders are to adapt and play to their team’s strengths. If not, they may find their team breaks under the weight of change.

I want to find a job, a career, a team, that plays to my strengths and balances out my faults. I’d rather be on the team that can take change head-on, not the one that breaks underneath it. The hard part, is finding a team, that’s looking for a piece that looks like me. I’ll keep looking.

My Parasthesia, Brevity of Life, and a Fellow Spoonie

I mentioned this in my last YouTube video, but I haven’t gone in depth about how it affects me mentally, or how some of my daily life is different. I have paresthesia, or numbness, in my hands and occasionally my toes. Most notably in my right hand.

Now, when I tell people this, I get varied responses. Most are the kind that are dismissive, or sympathetic but also not touching too heavily on the implications. But two responses I’ve gotten were empathetic, and/or supportive, and the one that was both came from a fellow spoonie.

First, I want to talk about how I feel. I’m not throwing a pity party, but it’s also normal to go through that sometimes. So, if you’re someone who’s in that place right now with your own illness, that’s okay. It’s normal to have moments that feel hopeless. Congratulations, you’ve embraced your humanity. But that isn’t me right now, and it hasn’t been much this whole time because we still don’t quite know at what level of seriousness this all is anyway.

I’m not feeling sorry for myself. Most of all, I’m not scared. Not in the way people think anyway. I’m not scared of having my hands go totally numb to the point where I don’t know they’re there unless I look. I’m not afraid of the worst case diagnosis (one possibility of which is neurodegenerative). I’m not afraid of having to alter my lifestyle; considering I have already done that with my other illnesses.

What I do fear is running out of time to do the things I love. Many of which require good hand coordination and dexterity. Piano , guitar, painting, drawing, cooking, sewing. It’s been difficult trying to do those things lately.

My handwriting, which has suffered greatly, is not the way that I would prefer. I used to pride myself in my beautiful handwriting, and now my hand cannot continue writing well for a long amount of time. My boyfriend has started checking the temperature of my kitchen sink water before I wash dishes, because I’m unable to feel how hot it is. He went to wash his hands and realized I was burning my own under the water.

Sewing the most basic things is painful. I haven’t been able to get to a piano to play and luckily guitar isn’t affected much, but will they be affected in the future? Drawing is almost impossible when my numbness is at its worst. Life is so short, but that brevity becomes more drastic when my skills are declining.

I’m eager to find out what’s wrong, so that I can move forward, get the accommodation I need, and start making a plan. I’m much more uncomfortable with the uncertainty, than I am with the diagnosis I might get. If it’s just a pinched nerve, then I’ll do the treatment and try to heal the best I can. If it’s a more chronic condition, then I’ll make a plan, and move forward.

I was more scared of losing my favorite hobbies up until recently, when I met a fellow spoonie who has peripheral neuropathy. He cannot feel his legs, and must look down at them to walk. He’s had to relearn to walk multiple times. That’s his reality. He was empathetic to the whole experience, but not patronizing or dismissive. He didn’t tell me to stop worrying, because he understood that worrying isn’t really what I’m experiencing. He knew I was only mentally preparing for all possibilities. He said it straight: there might come a day when you want to quit because you can’t seem to do anything. That I might lose more of my feeling in more limbs. That if that worst case scenario happens, I simply want to be prepared. He doesn’t quit, he knows the struggle, and he moves forward. So, his advice was this: If you look at your hands, it’s easier. Your brain will adjust to the idea that the signals it’s getting are different. Just work, go through the long process, and don’t panic if you can help it. He and I agreed that breathing and remembering that if we just remain grateful for what we can do, we can keep learning, growing, and most importantly: living.

This advice made my day, not because I didn’t already know, but because it was coming from someone who had lived it. When a doctor or PT tells you these things, it’s hard to believe that it’ll be that easy. But when someone who knows what it’s like does, it reminds you that sometimes you just have to change your perspective. So, if I have to get special art supplies, or draw more slowly, or use a different art medium, or hand sew less and machine sew more, I can. Loom knitting is already my favorite over traditional needle knitting. Making clothing can be less detailed and more basic and I can work my way up to detail.

And if, eventually, I cannot do those things at all anymore, I will find another hobby to enjoy. And if eventually I can go back to PT, or there’s another treatment and I don’t have to deal with this again, then even better. I can go forward with an even greater appreciation for how my body functions. No matter what, I’m not going to fear what happens. I will fear becoming complacent. I will never stop trying and moving forward even if every movement is painful. I will use my spoons to the fullest and keep growing and learning. And when all else fails, I will ask my loved ones for help when I need it.