Angst

I’m afraid.

All this week I have felt fear, clawing its way through my being, sharpening my words and heightening my emotions.

And that makes sense.

My life is currently rather scary.

I am walking around with unpredictable, debilitating symptoms. They have popped up in class, rendering me unable to communicate, on walks, weakening my limbs, and at night, preventing me from sleep.

Not only are the symptoms themselves scary, but they are steadily becoming more frequent visitors. Some are settling in. I am experiencing greater fatigue and pain on a daily basis, and regular difficulty in vision and comprehension.

My father excitedly spoke to me of a segment of Canadian History and I could not understand whatever it is he said.

And that’s terrifying.

But the thing is, I’ve been here before. I’ve experienced unknown, worsening symptoms. I’ve floated through the medical system with tentative labels, some dismissive, others serious. I knew it was likely to happen again.

Yet I am experiencing an edge of desperation in my fear. I feel as though there is something I should be doing, be changing, to adjust to my current situation. I feel an overwhelming urge for action.

And that doesn’t quite fit.

Of course, I want to investigate what is happening in my body. But I, personally, do not have that ability. I am waiting on appointments and tests and, even then, there is a strong possibility that there won’t be an answer.

I know that. What’s more, I have lived that. I have learned to accept that. Or at least to work through my fears.

When I talk to family and friends, communicating that I feel the need for action, their words turn baffled.

What is there to do, besides wait and see? Besides going day by day?

And they’re right, of course. There is nothing to do. I am in the earliest of stages, with no information or idea of what this new development might turn out to be.

They’re right, yet I have found myself increasingly dissatisfied with their responses, bordering on anger.

I don’t want to wait and see. I am scared now.

I feel new fear, because I have something new to lose.

I have just begun to construct a life for myself. A life with school, volunteering, and work.

I have just begun to make plans for the future.

And I have made commitments. Commitments for tomorrow and the next day and the day after.

I do not feel desperate because I fear my medical situation.

I feel desperate because I fear for my life.

I fear for my ability to live the life I have constructed.

I fear that my commitments will turn from something exciting and fulfilling, to something draining, causing resentment.

I fear that I will waste valuable time, trying to force my plans to fruition.

I fear that I am, and will continue to be, incapable of independence.

And those are all valid fears. It makes sense to want to avoid them. It makes sense to want to be proactive, to ensure that my life is the most fulfilling that it can be.

But identifying them is rather reassuring. Because, in the midst of all of this complexity and abnormality, there is something completely ordinary.

I am in my 20s, and I am overwhelmed.

I am overwhelmed by thoughts of the future.

I do not know what I want or what is best for me.

I am scared of making the wrong decisions.

I am panicking.

Thoughts of education, finances, career, and family crowd my mind.

I am in my 20s and, while my packaging may be different, my hopes and fears are not.

They are typical.

They are normal.

I am normal.

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Control

I feel cheated.

I feel angry.

I feel scared.

I have been doing everything right. I have sorted out my medications and incorporated lifestyle remedies into my days.

I see a personal trainer on a weekly basis and workout regularly on my own.

I am on a strict diet and have not cheated.

And through all of these measures and over a year’s worth of hard work, I have gradually felt a gain in control.

My medications and lifestyle changes allow me to stand upright for reasonable amounts of time.

My physical strength and stamina have improved, so much so that I am capable of hiking black diamond trails.

I have lost over 70 pounds since January, steadily and responsibly.

I still have to be careful. I still need naps or at least rest every day. I still have bad days.

But I am careful. I do plan. And I plan a backup just in case.

I have been doing everything right.

And yet, this week saw me visiting the ER, sent by my GP for occurrences of what we now believe to be some type of neurological episode, and what she labled ‘acute presentation’.

I spent the night getting my brain scanned multiple times, shivering under fluorescent lights, being poked and prodded with needles and having bright lights thrust in front of my eyes.

After 1AM I was finally released to go home, with the words of the neurology team ringing in my ears. That they were reasonably certain I was safe to go home, that they’ll run a series of tests over the next little while and try to figure out what’s causing these episodes and unnerving symptoms, but that I should prepare myself for the reality that they may not be able to help me. That it might come down to learning coping mechanisms.

And later that night, as I tried to fall asleep, I felt like screaming.

I had already learned to cope. I was just starting to feel in control, stable enough to begin classes, the first lecture of which was occurring the very next day.

I had gone through the uncertainty already. The fear. I had pushed through, trying to make my life work, despite a failing body. I finally received a diagnosis and took a year off of school, of work, of all responsibility, and simply learned to cope. To become the strongest, the healthiest, that I could possibly be.

And just as I was beginning to feel a little bit successful, this hit.

I feel like I’m starting all over again. With scary symptoms that no one can explain, let alone treat, which impede greatly on my ability to live my life.

It’s almost comical in its ridiculousness.

All I want is to feel a certain measure of control. Whatever my life will be, whatever limitations I may have, I just want to know, so that I can learn to deal with them, and move on. Move forward.

But, taking a step back, I know that that wish itself is ridiculous.

No one in fully in control. Life happens. It rained today, washing out a performance I planned to attend. Earlier this week my grandmother tripped, fell and broke her hip.

No one can be fully in control of their days. No one can be fully in control of what happens to them.

And really, why would anyone want to?

On Wednesday, I ran into a lovely person I had not seen or spoken to in 4 years. I learned today of the engagement of a friend. I just received an offer for home cooked leftovers that will release me from cooking for the next week.

Complete control is impossible in this world, but more than that, it is undesirable.

While building confidence on the stability of the world around us, on our lives, is nothing more than an illusion, we can build confidence in ourselves and our ability to respond to whatever life throws at us.

And while it can be terrifying to stumble through the dark, it can also be exhilarating.

There might even be some shooting stars.

Freedom

Freedom.

It’s a rather strange concept. We talk about freedom in such glowing terms, as if it is a goal to be reached, as if it is the ultimate answer.

At first thought, the idea is quite straightforward. But as I tried to define the term I was left confused, and had to resort to the internet.

Google has defined freedom as “the power or right to act, speak, or think as one wants without hindrance or restraint”.

That’s pretty hard to argue with. Who would want to? Of course freedom is important. More than important, freedom is beautiful. Something to cherish. Something to aim for.

But what exactly do these ‘hindrances’ or ‘restraints’ refer to? What can they refer to?

Often the term ‘freedom’ is thrown around in everyday situations. Freedom from school, freedom from work, freedom from children, freedom from parents and, of course, freedom from responsibility.

Empty days, days with nothing to do, no obligations, are lauded as ‘free’. And they are greeted with joy filled possibilities.

Of course, no one is ever truly ‘free’. There are elements to all of our lives that shape how we act, speak, and think. At the very least there are personal needs to attend to. Food, water, and shelter. Then there are laws and social norms to contend with. Usually financial and familial obligations are layered on top.

But still, freedom seems to be the ultimate objective and the closer we move towards it, the more excited we become.

When I think about it, I have been as close as one can be to ‘freedom’. I had no school or work obligations for nearly two years. I mostly lived alone, away from family. I had food delivered. My days were completely open, from morning to night, free to fill however I chose.

And, although I was physically unable to take advantage of the time I had in many ways I would have chosen to- although a majority of that time was spent in pain, worry, and fear, there were some lovely moments. I could see my friends whenever it was convenient to them. I was always available. I could watch movies and listen to music. I could go to sleep and wake up whenever I felt like it. I could wear whatever I wanted to.

I was also bored. Extremely bored. Sometimes I was bored because the music hurt my ears, the movies moved too quickly, and no friends were available. Sometimes I was bored because I was too ill to get out of bed, and had been lying there for hours. But other times I was simply restless, edging on miserable. I had too much time to fill, without the ability to fill it.

And instead of the blissful release from stress that had been promised with a lack of responsibility, I felt ever increasing stress. I grew teary at the slightest provocation, felt the tell-tale signs of anxiety at the mildest trigger.

Now, however, I have gained enough strength to attend school. I am only taking two classes, but that is a huge leap in my level of responsibility. I am also tutoring students two days a week. I live in the same city as my family, adding to activities switching between obligatory to desirable.

I am moving in the opposite direction from the defined embodiment of freedom. Hinderances and restraints are being placed over my time, forcing me to act in ways that may not be my instinct or choice.

And yet, I have never felt more free.

In all the time that I sat alone on my couch, dreaming, I didn’t feel free. I felt limited. My dreams existed only in my head.

Now, I am making concrete travel plans. The added infringements have made me more aware of the time left available to me. Of its value and potential.

I am researching internships and jobs, I have signed up for volunteer experiences, and I feel unlimited, despite my numerous limitations.

It’s not that I’ve had a surge of good health. In fact, this week may have been my worst week in months. Aches turned to severe pain, dizziness turned to a loss of vision, and level 2 headaches multiplied at alarming rates.

But still, I feel free.

Maybe it’s because I have still managed to accomplish everything I had to, despite my body’s protestations.

Or maybe it’s because, like a lone individual in the middle of a field emphasizes its vast emptiness, the addition of responsibility has opened up a whole new world of availability. Of possibility.

Freedom is important. It is essential that human beings are allowed their independence, their ability to live their lives free of oppression and persecution. It is something to strive for, and it is worthy of glorification.

But perhaps, sometimes, we misunderstand it. Perhaps sometimes we make it too simple.

Freedom is not synonymous with nothingness.

If it is, it cannot be a goal.

If it is, it is no longer positive.

It is true, that the accumulation of responsibility, however enjoyable, can create a burden. A burden that can weigh heavy.

And temporary relief from that burden can be just that – relieving. Someone else to look after children for a while. The end of the day at work. The break between exams and the start of classes.

But a temporary respite is very different from a state of being.

Nothingness does not bring relief. It brings nothing. It brings paralysis.

Perhaps to be free, we must be restricted.

Identity

It’s like a tug of war.

A battle.

And I’m not sure which side I want to win.

I’m not sure which side I’m supposed to want to win.

For the past couple of months, I have ignored the steadily growing reality. I have told myself that nothing has changed.

But somehow, my being has been split, with neither side accommodating the others’ presence.

Part of me is chronically ill. And part of me has forgotten.

It’s so minuscule, the change, when one side takes over. It’s hard to notice.

I’m not quite sure when it started. Perhaps it was when I chose to leave my tinted glasses behind, not thinking or caring of the excess trauma it put on my eyes. I came up with a multitude of reasons to support my decision, but ultimately, I wanted to look normal. I felt like it was time to look normal. Time to be normal.

Gradually, I started to notice a change.

I went to my school’s orientation for students with disabilities, and I felt removed from my peers. I told myself that it was because of age, because I have spent time away from school. And that was true, but not entirely.

I acknowledged their challenges, but felt that they weren’t mine. I had a handle on myself. I didn’t need the offered resources, the excess support. I may have in the past, but I’m fine now. I’m under control.

And as I started to think of my future, of dreams that I’ve held closely to me for years, focused on accessibility, I noticed that there was a gulf my thoughts. An gulf that prevented me from understanding the needs of others, an gulf that had me thinking I wasn’t aware of the needs of a wheelchair user, despite the fact that I used one for months.

I was steadily disassociating myself from my condition.

I am steadily disassociating myself from my body.

And the minute I realized that I grew defensive. After all, isn’t overcoming my ‘salt’ the best thing I can do for myself and all people who deal with challenges? Isn’t proving my humanity, my normality, the best way to remove the power and stigma of illness?

And maybe it is. It certainly sounds impressive- overcoming obstacles. Maybe going and living my life despite my fluctuating health is the strong thing to do. The right thing.

But somehow, it doesn’t feel right.

In my efforts to live a normal life, I am trying to hide my condition, from myself and those around me. I will acknowledge its presence, but I will go no further than that. I am refusing to let it impact my decisions.

And that’s wrong. Because it is a part of me. It is a part of my past, my present, and my future.

I have to take it into consideration, I have to live my life with it and not in spite of it.

Because otherwise, I am living my life in spite of myself.

I have a chronic illness. It’s not just a title. My body is constantly throwing new symptoms at me, constantly fluctuating in strength and stamina, constantly scaring me. The obstacle is insurmountable.

That doesn’t mean that I can’t decorate it. It doesn’t mean that it can’t become a beautiful centrepiece along my path, that I can’t shoulder it, sit on it, carry it with me, or transform it into a backdrop. It doesn’t mean that I can’t live a life full of choices. Or be as ‘normal’ as anyone ever is.

But it does mean I can’t run away.

If I don’t want to focus on accessibility in my career, that’s okay. I don’t have to.

But if I ignore a passion for accessibility because I want to feel strong, to feel invincible, to feel ‘normal’ then that’s not okay.

I can’t ignore the existence of illness.

I can’t ignore the existence of challenges and barriers.

I can’t ignore myself.

Happy

I feel happy.

I feel anxious, I feel stressed, I feel hopeful, I feel nostalgic, I feel miserable, but I also feel happy.

And that’s really quite remarkable. For months, if not years, I have thought of myself as making do. Trying to find the good in a bad situation. Getting through the day. I did not think of myself as sad, but I had gotten into a habit of ignoring my own emotional climate.

Maybe I was scared at what I’d find. Maybe I didn’t want to tip the balance by digging too deep.

Regardless of the reason, I blew through my days, diligently ignoring myself. I didn’t know if I felt happy. And as a result, I did not truly experience happiness. At least, not in the way I am now.

I know that I am happy. And that changes everything.

It makes me want to settle into each experience, to see if it will augment the emotion. It makes my days more clear. It gives me comfort. It settles my anxiety. It opens me to all of my other emotions, both positive and negative, and bathes them in a comforting light.

And it’s strange. Because nothing has really fallen into place. There hasn’t been any dramatic change in my life, no noticeable new elements.

In fact, just this past week my symptoms have flared up, causing me an increase in pain, exhaustion, and frustration.

I am extremely anxious about beginning school, starting in a program that was not my first or second choice, at a school that I have no special desire to be a part of.

I have confused dates, double booked myself, procrastinated, been thrust horrible decisions, and have, by objective standards, not had a very enjoyable week.

But I feel at peace with my medical situation. Most of the time, anyways. I feel confident that, while unpleasant and detrimental, I can deal with whatever my body throws at me. And I am grateful for the strength that I have managed to regain.

I see the beginning of a new program of study as an opportunity. To learn new things, to explore another side of myself. 

I have almost completely forgotten about my various errors over the past little while. They have slipped away, unimportant and unworthy.

I feel happy.

And in a very large sense, I chose to feel happy.

I chose to focus on confidence in the face of my health. I chose to be optimistic about my education. And I chose to forgive myself.

It hasn’t been easy. I have put an immeasurable amount of effort into this happiness. I make those choices every day, multiple times a day. In fact, I don’t even know whether the things I smile about would automatically make me happy, or if I have convinced myself that they do.

But ultimately, does that really matter?

I feel happy. And if I have worked for that happiness, should it not be all the more valuable? All the more true?

It is not a whim. It is not spur of the moment. It runs deep.

But that is not to say that I feel happy every day. Or that I believe I should.

I do not shake my head at my days of ignoring my true emotions. And I do not vow to avoid them in the future.

Sometimes, it is the better, the only option to just get by. To put in the motions.

Sometimes, truly feeling can be crippling. And it is better simply to trace a pattern, however light it may be. And get through the day.

But by tracing that pattern, over and over again, I have created deep grooves. I have carved out a habit, that is now integral to my being.

I have created happiness.

I feel happy.

I feel.