Wednesday, March 6, 2013

Chronic Illness: Trading Cards

This entry is going to very brute. Some in the chronic illness community won't like it. But I don't make these entries for the warm fuzzies. I don't make these entries to parade my illness around like a show dog (I do share some for awareness and context).

I spent a good couple hours trying to understand (per texting, which is confusing enough) where a friend was coming from. They'd been ill with an eating disorder for a few years, and was claiming to be going through GI shut down. They being my friend I spent long periods of time feeling sick and worried about their situation. The last couple months had been especially difficult, but for a different reason.

I had told them about my confirmed diagnosis of mitochondrial disease. After a few texts (literally, the second one that should have been more of a reply to a fear I was having with a mito diagnosis) and instead of any further support, turned the whole subject back to themselves, asking if I thought they could get an ambulance transfer from one hospital to another.

They didn't realize what they'd done, but in that instant, I saw what it was:

They'd only traded one sickness to another. Essentially, a mental game of trading cards.

It's completely understandable, given that in the years of trying to establish an identity, some of us had been sick for one reason or another. Like I'd said in a previous entry, it is not uncommon for young adults to not know or understand where they belong in their own lives, much less society. And sadly, games of illness trading cards are not uncommon either.

I hadn't gotten a clear understanding of this until recently. Getting accepted here to Landmark, and review by the doctor (like most others...) yet another opinion about starting up TPN.

The problem with an opinion like that is that it literally means that there is no real hope for my future. None of us know how long we have, but does it not make more sense to try to preserve one's life, even if there is some suffering involved (not talking about terminal patients)?

I'll answer for you: the answer is "Yes". And I chose an unorthodox decision to eat by mouth. I have a selection of about 8 foods. My gastroparesis hadn't gotten better at all. I merely chose to shirk the pattern of a disease process and am trying to make it work. Foolish perhaps. We'll see what happens

Even if the chronic illness is medical in nature, there is still responsibility on OUR PART to make good choices.

There are illnesses that are incurable. I myself have two, one of which has a potential to be terminal, and both without proper management is fatal. Doctors aren't magicians, nor are they God. Not with us every waking hour, and even if they were, may be privy to steer us wrong.

May be privy to telling us that we will be sick forever.
And we may believe it

We may quit trying. That is a choice we have.

And we may rally against it. We may do radical things that may not be standard treatment but may extend our lives. That is also our choice.

There is a difference between a body shutting down and trading cards.

If you could be well right now, would you choose it?

You'd be surprised at the number of people who said they would, with a full deck of cards in their hand, hidden behind their backs.

Gripped so tightly and fiercely, convincing themselves that those cards aren't even there.

There are those given six months to live that go on for years, enjoying their lives. Pain free? No way. Feeling 100% cured? Not at all. Yet there they are. THAT is bravery. THAT is a mindset only achievable by those who hold on to Hope and Joy and has nothing to do with illness and everything to do with those two factors that can never be taken unless you are the one to let them go.

There are those with a manageable condition who die quickly, for they've held tight to their suffering and refused to listen to anything that doesn't pertain to how "sick" they are. They proclaim false parameters on their lives. The body listens and takes heed.

They leave their lives behind, and are buried with their precious stack of cards.

1 comment:

  1. I am glad you said this. it needed to be said. it took a great deal of strength to post this. i also want to add that i have found the facebook has contributed to this so much lately. i want to give you a great big hug.