Friday, June 27, 2014

Defining My "Self": Life Outside Labels

Most of what I've been pondering for the past few months is this:

What if I were born healthy? 

How would I ever know what to expect of myself without a doctor's advise?

The sad and scary truth is that I have not a single clue...and -- heartbreakingly as this sounds -- I am not alone in this. Almost all of my friends have had some kind of label afixed to their names either from birth or bordering the coastline of what should have been an exciting milestone: their first word, first car, first opportunity to live independently.

In one fell swoop you have become something you never hoped to be. From the very start of diagnosing and treating a chronic illness, you fall from the graces of prior achievements such as "student" or "athlete". Even if these descriptions still fit, they won't for very long. You will succumb to their suggestion: you will become a "patient".

One day you will blink, and ten years have passed you by.

You will not have even noticed.


(I now spend more time outside)

I have been 27 years old for less than a week, but for some very odd reason I feel as though I have aged much more than a year. I have been very, very aware of so much time given to activities I never wished to acknowledge and how much attention given to concepts that in my heart of hearts admit that I don't even value.

All of us walk on paths intended just for us.  Others in our lives will come onto parallel roads and walk beside you for certain lengths of time...which may be your pleasure or not. But we come upon obstacles that are unique to our individual strengths and weaknesses. We master them or we don't. There are no shortcuts; no ripping the answers off of your neighbor.

We learn from our mistakes or we won't

So often I have run into cookie-cutter type patterns of symptoms -- and thus reactions and other behaviors -- that are labeled "expected" or "normal" for *someone* with [enter diag-"nonsense" here]. All of this was perfectly fine for me for many years. It has even been fine for me since detailing my experiences here, and for this I must apologize. This has given a false sense of introspection that I have never examined myself for. Now that I have, I have graded myself fairly and found that I have failed.

Here is yet another chance to learn something new.

I do not want to live my life as what is "typical" for someone with any set of certain challenges. That isn't only unfair to those who are working so hard to help me, it is also an example where I am not being fair to myself.

The good news is that I can still change this about my life.
The bad news is that I have to be willing to become very, very uncomfortable.

For instance, when I am not in hospital I like my home -- so much that I scarcely leave it. Things are predictable living alone. But I am dreadfully unhappy. I can have a very busy day accomplishing absolutely nothing at all, which is the equivelent to having joined the "rat race" in some awful office cubicle or doing anything else that I promised myself long ago that I would never commit to in the name of security or other types of hypnotic comforts.

I had actually forgotten that I like to participate in life...I actually like getting my hands dirty.

Somehow I have even forgotten that part of this tireless aching in my chest is just out of this deep loss of my sense of "self" after losing so much of it over the years.

This is part of why I have decided to bite the bullet and enroll in university in the fall via vocational rehabilitation, for which I do qualify via aptitude testing. A repeat of A.C.T. scores will ensure my slot, which after taking it already twice in the last seven years with very good marks, I am not at all really concerned with alone.

However, it has indeed crossed my mind that maybe this time around my marks won't be so fantastic. What would happen then? Would I have to take another year alone to study and relearn what I had forgotten (which isn't likely to happen due to documented photographic memory)? What if I get in, but i stick out like a sore thumb? What if no one likes me? What if I cannot stand the administrative staff?

...what if...

But then it hit me that I have not needed to worry about any of this for a very, very long time. It's a level of fear oddly mixed with excitement, and I must admit it is actually not an awful feeling.

These are worries that people who are really living their lives get. It makes me feel my actual chronological age, which is not a thrill I have gotten to enjoy since late childhood.

This is just a simple example of some of the changes I am committed to making in my own life to redefine who I am outside of my diagnosis. For instance, unless it becomes relevant, I rather like to think about not even telling anyone that I have a chronic illness, or go into any detail about how large of a part of my life it has taken. Has taken.

Oddly enough, this only came about because one day I realized that I absolutely hated what I was currently wearing. I wasn't even aware that the CLOTHING that I had CHOSEN FOR MYSELF was not really even something I liked. So I went and put something else on instead.

It sounds sort of pathetic -- like the fact that I did not know my favorite color was green until I was almost twenty.

Except now I am getting re-acquainted with the person I actually am of the age of nearly thirty.

Today when I walked out of clinic with my caseworker in a pair of pink glittery ballet flats and a black and silver tulle skirt, she asked me what I would do tomorrow if I no longer needed any of my treatment professionals. If one day I know longer needed any of them.

And while I probably will never really know, I quite like this question. It gives me a sense that if I cannot replace or substitute those who make such impact in my life, I can add more to the mix, creating something else more lovely all together.

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