Personal Writings


By September 22, 2014 4 Comments

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.

Next Post

Author saltedbrownies

More posts by saltedbrownies

Join the discussion 4 Comments

  • Jackie says:

    I’m so sorry. Sometimes dealing with chronic illness feels like a game of whack-o-mole.

    I have gotten quite a few neurological symptoms with my case of POTS as time passes. I recently found out I have an autoimmune disorder attacking my body, and nervous system, likely causing both my POTS and my fun new neuro symptoms. If you haven’t already had it run, an ANA is a very common blood test to screen for autoimmune disease.

    • It really is! That’s a fantastic comparison!

      I’m sorry to hear that, and I hope that having the diagnosis helps at least in terms to treatment options. It’s interesting, because I have a lot of autoimmune conditions in my family and a lot of my symptoms seem in line with something in that area, but my ANA was clear when it was run about a year and a half ago. So it’s all a little confusing, haha.

      Sending all my best wishes, and thank you so much for reading and commenting!

  • Joseph Bebchuk says:


    I am so sorry to hear about this distressing setback. Stay strong. I love you and am sending you positive thoughts.
    Uncle Joseph

Leave a Reply