I have always thought that there should be some sort of band-aid available for when the pieces of yourself fall apart. The times when your skin doesn’t hold together and the inner workings of all that you hold onto to survive is exposed to the wind and the cold. A band-aid to hold the pieces together long enough that they will once again fuse into a solid piece. Long enough for your heart to fall back into its resting place, for your eyes to laugh out loud once more, long enough for the damaged soul that has changed and been broken to find a way, even a will, to survive.

I have had some of the hardest days of my life these last couple of days. And it has only been a couple of days but the change I can already feel to my self is incredible. There isn’t a part of me today that looks like it did a week ago. There are new scars, new breaks, new wind currents blowing through the pieces of me. And those wind currents are cold.

I live in a world of ups and downs. My normal days are completely inundated with wondering if I will be able to get out of bed or if today I will be able to accomplish the mundane tasks my life demands. My days are a matter of fits and starts that I try and navigate through in order to find a balance strong enough that those I love aren’t affected as negativity as I am. I hide the disease that is mine to bear as much as possible. If I have a moment that concerns me I take the steps to find a way to understand that moment long enough to put it in perspective.

There is no perspective right now. There is no putting emotions in buckets that can carry the trash out and bring the warmth into my soul; these days that isn’t an option. There is no reset button so I can find myself better prepared to deal with this much of a low, and while I fully cognizant of the fact that there will be a day or days that this changes for the better today is not it.

There is a major difference between surviving and living. If you have ever heard a story from the walking wounded you would know exactly what I know.  There are days that living life requires not only energy but a passion to fill the normalcy so that what we have is enough for us to live.  Living life is the culmination of taking all that life throws at us and standing up anyways. It is the taking the horror that life deals each of us and finding a way to understand it and in some ways sate the monsters that are roaming so freely.

Then there are the days of survival. These are the days that you don’t fight the monsters, you don’t get back up, you don’t do anything but simply have enough inside of you to keep breathing, keep your heart beating. These are the cold days that no amount of heat, warmth or love will keep you alive. These are the days when you work hard to follow through the motions and willingly get down on your knees and pray that God will give you mercy.

I am not talking about the days of darkness; those days of comfort that give you a place to hide. When you are trying to survive, and only survive there is no place of comfort. When your heart breaks, when your soul literally shrivels up to hide from the onslaught of emotions that show no compassion, no way out, you are just surviving. These aren’t the days of sadness, these are the days of grief. These aren’t the moments of chaos that can swirl in your brain like a drain of water, but the days of loss that are so permanent that you know you will never truly rise in innocence again. They are days that happen once, twice in a lifetime. And they are the days that will make sure you always know what it is you really could be. The bottom that you could be forever held to.

These days will define you because the natural need to live is absent. These are the days that you wonder if live isn’t giving you permission to finally just end it all and find that illusive peace. These are the days that teach you that all that you have fought for your whole life, was a waste of time. You aren’t strong enough, you aren’t brave enough, you don’t have the ability to live.

Maybe like me you attempt to bury the emotions so deeply that they can’t destroy the essential core of you; yet, we both know these emotions do just that. Maybe like me you don’t talk about it, you don’t put it into perspective with someone that can help; instead you silently die long enough to hopefully get to the other side. Maybe like me you find the world gray and ugly, without the color that at others times seems so blinding.

Large emotions and I don’t go well together. I rarely if ever laugh until tears roll down my cheeks. I don’t enjoy the taste of a great meal, I don’t allow myself to find accomplishments in my own work and I never allow myself to give into the anger that is so strong at times I wonder why I don’t crack in half. I am learning that a tear is not cathartic but can at least convey the emotions I need to have at that moment. I am learning that a yelled world can be forgiven by a loving hug; but none of those things require create emotion.

I have spent my life, my diseased life, as a woman finding and holding onto the will to live when I don’t even really want to survive. I have learned to accept that surviving is the goal for me, never actually enjoying all that life has to offer. With this disease I have learned that life isn’t mine to have, there are simply too many complications that I can’t handle. And I have learned that life isn’t mine because it takes too much of my strength to survive and there simply isn’t anything left.

Today, there is nothing left to help me survive. There isn’t even a will to do so. Rather I will spend today like I have the last couple and simply hope that when this new hurt is healed that I won’t be destroyed. I hope in the process I will find a way back to surviving and learning once more to just keep my heart beating. Because for me, that is the glory this world can offer.