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75d24f637f0e87c01ab05d956c9749c4Have you ever tried to communicate with someone who has no ability to recognize who and what you are? Have you ever tried to talk to someone that simply can’t follow your reasoning or understand your feelings? Have you ever noticed that thousands of people can carry on a perfectly normal conversation and known in your heart that the only thing you can do is sit there and pretend?

As I mentioned in previous posts I have a rather large range of conditions and disorders that consume me. But while these manifestations have moved into my body other things have had to either change or quit the scene completely. I have realized in these last months that there is only so much room in your body and your mind; and if those parts are filled to the brim with the day to day struggle of living, then other things, other assets and other liabilities have had to move on.

There are two things that have found themselves without a home in my mind and body: my ability to trust and my ability to find ways to speak openly and in defense of my own self. It seems that with a mental illness, a physical illness, and everything in between (my toes still work) I have had to give up some of those traits that as a child I took for granted. I know, and you know, that taking things for granted is as normal for a child as learning how to walk. It is just part of the journey and is supposed to be a part of the journey. Learning not to take things for granted but to appreciate them comes much later in life.

Is it true that when your body doesn’t work like it is supposed to, other things are put onto the sidelines? I really don’t know. But when I look at what I was as a child, my abilities and my foibles, I can readily see that I do not have those traits anymore. I no longer have the ability to trust strangers; I have a hard time remembering to trust my family. And with that lack of trust it seems I have lost the ability to speak up for myself.

Now I will admit to you that my relationship with my husband has evolved through the years that my ability to trust him and to speak to him is much different than anyone else in my sphere of companionship. When you have gone through as many things as the two of us have, trust and communication can be a lot easier. Not easy, just a little easier.

But for everyone else in my life the ability to find a trust in them, the ability to communicate to them, has literally fallen off my skin like the millions of cells that already do.  Communicating with someone who is not sick, who does not suffer in the same ways that I do, is not easy.

It isn’t easy to explain to another human the great comfort of darkness and the beautiful song found only in silence. It isn’t easy to explain to a healthy person the myriad of pains, twitches, uncomfortable sensations, or even what the good days feel like. It isn’t easy to explain that a headache is easy to handle, or that having a cavity filled is nothing compared to the normal pains of everyday life that one lives when they are sick. It is hard to get hurt and explain to someone why you didn’t notice it. It is hard to explain why normal pain, the cause and effect of pain, is so much more desirable than the reality of a body that requires a handful of drugs each day simply to survive. It is hard to even talk about the incredible importance of things like songs, poems, art, books that allow the soul to get lost in something other than the reality one has to live. It is hard to share how important getting lost truly is.

I find myself at an interesting place. I have, for the last six months, begun the journey to try and find a balance between the medications that I take and the side effects that plague me.  I am tired of the suffering that comes from diseases and conditions in this modern world. And while I understand that the pills I take are a requirement and I can’t change that, I can try and take steps to mitigate some of the side effects that come with all these medications. I am trying to do this not for my own sake, although the alleviation of some of these symptoms is a positive, but because I am truly tired of complaining. I am tired of sitting in my big chair, curled within myself and not living the life as the best I can.

But I run into one major problem on this journey of mine. I don’t trust and I don’t seem able to communicate to strangers. And despite the multiple time I have to see my doctors the truth is I can’t truly communicate with them because I don’t altogether trust them. They are there for the money and the easy answer and there is nothing to blame in that. They are as human as I am.

So how to I find ways to mitigate all the side effects while communicating to doctors that there are in fact too many problems and not enough solutions? How do I tell them that while I will take their prescribed drugs, there has to be some relief not just from the disease but from the cure itself? How do you explain that the cure isn’t always what works best to someone who has never felt the complete degradation of sickness? How do you be honest about what and who you are on all these drugs and still maintain the health you are trying so hard to achieve? Its like explaining physics to a poet; they may understand the concepts but it will be difficult for them to understand the relationship that exists between the physicist and the beauty of this world. It’s a different beauty. It’s a different relationship. And that makes all the difference in the world.

So how do I talk to a doctor that I can’t find within myself to trust? How do I explain the aches and pains of daily life, the nausea that comes without warning, the cramps, the headaches, the dizziness, without upending the definition of my personal health? How do I explain that while the disease is being treated the cure is not? How do I fully explain to anyone that the goal isn’t the curing of a disease, but the ability to live within that disease?

These are questions I don’t have answers to. I find this world fascinating, I freely admit, but I don’t truly understand it or my purpose in it. I can’t find the ability to explain that the true end is not another pill but a world that feels as if I was meant to be in it.