The Hardest Part Of Love

ZOEY ISABELLA – RIP – 11/6/02 to 12/22/16

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(Preamble: Anyone who knows me or anyone who follows my blog, knows that my dogs are my world. On Thursday December 22nd, I lost my beautiful 14 year old Zoey to a sudden unexpected neurological event. Life is a funny thing…so out of our control. I am sure my blog will be filled with stories about her over the coming months…the things she taught and the joy she brought me. For now though…I grieve. Please bear with me.)

What can be said about grief that hasn’t already been said? That it is the last expression of love we have to give? Or that it is the end of one thing and the beginning of another? In time our memories keep love alive? These are not new ideas. There is nothing new that can be said about grief because grief is universal, an inescapable part of life. We all experience it throughout our lives in a myriad of ways and for countless reasons. Grief is ubiquitous. It is an ever present part of being alive. It is the ultimate consequence for loving unreservedly and is it relentless and unceasing. We learn to make it quiet, to put in the background after a time. It stays with us always though, because grief is the very last part of love. It is the hardest part of love. It is all we have left of what we have lost.

Grief is cumulative. The more we live and the more we are open to love, the more grief invades us, often in the most unexpected ways and at the most unexpected times. Grief plies up and with every new loss, old wounds re-emerge, forcing us to ache all over again, again and again. Grief has its own schedule. We are at its mercy and its mercy is not tender or kind. Grief is the hardest work there is to be done when it comes to the truest of love. If we fail to feel it, to acknowledge its power and purpose, to do what it required of us, we stay stuck in darkness and sorrow.

In the midst of grief it is hard to understand that the pain is meant to bring us to a new understanding of life, that on the other side of grieving there is gratitude. There is peace in the knowledge that grief means we accepted the full value and benefit of real intimacy into our lives. In a weird way, our lives are made richer in grief because it means we made a conscious decision to accept that with our deepest affection comes our greatest sorrows and that we were brave enough to take a chance on love despite the ever present risk of misery and heartache that grief makes known to us at the end of life.

There are no right or wrong ways to grieve. It is as individual as the love we lose to it and just as the love we lost, grief is eternal. It does not really ease with time, it simply changes with it. Every event that stirs grief up in our lives is different. Each situation that creates grief is unique but, the one true thing about grief is that it is essential to our understanding of life. Without grief we cannot know the complete and abiding joy of love and we won’t experience the pure beauty of our purpose. It really is better to have loved and lost than to never have loved at all. Life without grief is no life at all.

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Yes I Can!

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Yes I can…Oh yes, yes, yes I can!

These are words that I tell myself daily. This is my private little mantra. I say it when I wake up. I say it when I get out of bed. I say it before I shower and get ready for the day. I say it before I exercise. I say it before I do chores. I say it when it’s time to walk the dogs. I say it when I have to go to functions or parties. I say it before I travel. I say it when I go to the doctor. I say it when I have to take medication I’d rather not take but need. I say it when I go to bed and try to sleep.

Sarcoidosis makes it hard for me to breath, it makes my bones ache, my joints stiff, my nerves burn. It makes my chest hurt and it turns my skin funny colors. Sarcoidosis makes me tired all the time because my immune system sucks all my energy fighting phantom foes.

Life is an effort but it’s an effort that I am not ready to give up on and, I know that each day requires me to make a choice. I can give up or I can tell myself that I can do it. One day at a time is all I have to get though and when that’s too hard, I only have to focus on the hour ahead of me.

I have become my own best cheerleader. I smile when I don’t want to but, this changes my attitude and eventually, I find a little joy each day. Some days, I find a lot of it. Many days, actually. I will not let this disease beat me. I will not lose because there is too much to lose. Loss is not an option.

There are times I have to tell myself that I can tolerate anything for just a day that would horrify me for a lifetime and, I break down my struggles into manageable chunks of time. I don’t have to tackle every problem this disease throws me at once. I am learning to prioritize.

Once upon a time, I could take a big bite out of life and I could multi-task my problems and setbacks didn’t phase me. Since my sarcoidosis diagnosis, I am not able to do this anymore. Now, I try to face what I can when I have the energy and I have to break down tasks into parts and pieces and accept that things may not fall into place as quickly or as easily as I’d like them to.

It has really been about learning to adjust my expectations and if truth be told, I am still very much a work in progress in this regard. I don’t ask for help well. I still want to do it all myself. Asking for help feels like giving up but asking for help can actually be a sign of strength, a concept I understand in theory but am not yet fully comfortable with.

Each day is an adventure in picking my battles. Each day is an opportunity to face life with a can do attitude. Each day is a gift beyond measure. Each day that I tell myself that I can…I know that I will!

The Ultimate Sarcoidosis Superpower!

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I have figured out what superpower I would want if I could have one and it’s not to be able to fly, or to be invisible or, to read minds. My superpower would not be to see through walls or to have crazy strength. I would not need a special car named after me or a cape and boots or a truth lasso. The superpower I want is unique and anyone who suffers with an otherwise invisible chronic, yet life altering illness, would probably agree. I want the power to force people who doubt how I feel or question me with skepticism to live inside my skin. A little time inside this body would prove to the naysayers that life with a chronic condition like sarcoidosis is no joke. Those who doubt us would then be obligated to admit that we are actually the stronger ones, that what we experience is real and that we are a people full of grace.

There is not one thing that is easy about living in a body that won’t cooperate. Even when many of us attempt to make it look like a walk in the park, it is more like a trudge though thigh high muck without the benefit of protective boots. Our desire for some visual sense of normalcy is for our own benefit though. If we act and look as if we are okay, maybe we can believe it too, even if for a little while. Why should we be relegated to PJs, sweatpants, and no make up 24/7. We have every right to look our best and to try to live as normally as we can but, just because we are doing this doesn’t mean we don’t suffer. We do. We suffer in ways most people cannot imagine and we often suffer quietly and alone. Ours is a misery we do not share and we do not dwell upon.

If we could put just one of the “Doubting Thomases” in our body for 24 hours, I suspect they would be shocked at how we work just to take a simple breath of precious life giving air. Every breath is a chore unto itself. Every inhale and every exhale is exhaustion for us. The other thing that would surprise a non-believer is the amount of constant pain we are in. Somedays it is low level pain, sure, but it is always there and like our shadow, it never leaves us. Some days it stops us cold. These are the days we hide from you. These are the days we grieve privately for the person we used to be, before life became about effort and lost its ease.

Doubters would be truly horrified to learn how long it takes us to heal. A mild cold can turn into something serious or even life threatening in a moment’s time. A cut or a bruise can take weeks if not months to go away. There is no telling how our bodies will react when sickness lurks or injuries befall us. It is astounding how vulnerable we are because of our sarcoidosis. It is also frightening because while we know living in a bubble is not realistic, living like nothing is wrong with our immune system isn’t either and finding a balance can be very difficult, sometimes lonely and occasionally overwhelming to figure out. While we might never say it out loud, everything we do, or don’t do, revolves around our best guess in how we think our bodies will react in any given situation. We are held hostage to our disease even when we pretend we are free.

Forced empathy. That’s the superpower I want. I would use it sparingly. Only on those who are knowingly critical or obviously skeptical. I wouldn’t make them suffer long, just long enough to learn the valuable lesson that you shouldn’t judge what you don’t understand or what you yourself have never experienced.