Sweet Time

DSC_0016.JPG

My husband and I were walking our dogs this morning…yup that’s right another post about my dogs…but stick with me…I think something good will come of it. Anyway, my husband who is a ball of nervous energy himself, was walking our younger dog and I was walking our 13 1/2 year old. They were ahead of us most of the walk and every once and awhile they would slow down and wait for us to catch up but inevitably we’d slow down again or they’d speed up and we’d be separated again.

Part of the reason the dog I was walking was slower is age related sure, but as I watched her, I realized something. She just likes taking her sweet time. You know the expression that we should “stop and smell the roses?” Well, my old dog was stopping to sniff the mailboxes, which I think is fairly equivalent for a dog, right? It was as if I was getting a lesson in how to appreciate the here and now from a wise old Jedi Master.

She really was enjoying her walk. As I watched her, I noticed that she didn’t take one step for granted. She savored every single one of them. She’d even stop and look around her once and awhile and occasionally put her face toward the sun and her nose in the air sniffing out all those disgustingly wonderful dog smells. She’d pick up dead dry worms and chow down. What I noticed most of all is that she was happy. I could tell she felt a certain contentment that we so often miss in the busy haste of our social media lives.

This reminded me that there is something to the whole idea of dialing it down a bit, to tuning in and paying attention to the only thing in front of us. Something magical happens when we take our sweet time and we relish in simple pleasures, we begin to appreciate life on a deeper level because we are no longer chasing it…instead we are living it. Life is meant to be cherished. It is meant to be relished and you can’t do this when you’re on the move.

My old dog reminded me today that taking your sweet time isn’t best way to live. It’s the only way to live because, it is the only way that you can truly take notice in the vivid detail of the world around you.

Advertisements

Seek To Understand…Avoid Pity

images

A commonality among humanity is that we all want to be understood. People who say they don’t care are probably not being honest with themselves. Being understood validates who we are and what we experience. Being understood makes us feel acknowledged. Being understood frees us from loneliness. There is an intimacy to understanding another human being.

I’ve been thinking a lot about what it means to want to be understood especially as it relates to my sarcoidosis. I do want people to understand, yet I know very few can unless they have walked a mile in my shoes. So, I’ll settle for acceptance that what I say about having this chronic condition is true. I’m okay with acceptance because this is a form of understanding, even if not directly.

What I do not abide and what I fully admit that I hate, is pity. I hate it when people pity me for my disease but I hate it even more when other people with the same disease seek pity. Unfortunately, there are those who relish dwelling in their own misery. There are those who seek to make others as miserable as they are. There are those who no amount of consoling quiets a desire to find the negative. I have no tolerance for these people and that’s because they make it much harder for those without our disease to even want to try to understand us.

I understand the dark lure of wanting to garner pity because I have a difficult illness that can be very isolating at times, but seeking pity is a useless activity. Nothing good comes of it. Pity grabbers are like misbehaved children who seek attention even if it’s bad attention. Pity seekers don’t really want to be understood. They want sympathy not empathy. They wallow in their disease like a pig in stinky mud. They relish being sick which is actually sick in and of itself.

When I write about my disease, it is to seek understanding. I am not looking for pity. When I write about my disease, it is to connect with those who can relate and to explain to those who cannot. There is nothing wrong with searching for understanding, validation and clarity but seeking pity is pathetic. The pity seekers among those of us suffering with chronic conditions set the rest of us back. Their negativity is a drain on our collective experience. They are the ones who make our experience a lonelier one because they push people away.

Now, I’m not saying that those who suffer with a chronic condition cannot have their moments. Everyone has moments of discontent, fear and uncertainty. It’s human nature to sometimes question why something bad is happening to you and to be a little angry about it. I’ve certainly had my own moments! But, those who live in these places, get stuck in them and then relish being there, they are an entirely different breed and they don’t seek understanding. They seek something else entirely, and it is not healthy. They want to be defined by their illness.

Most of us don’t want that. Most of us just want validation that our experience is real. Most of us know that we are not the sum of our sarcoidosis. Most of us just want acknowledgement and compassion that this is a tough journey. I certainly know that I am more than my disease. It doesn’t define me but it is part of me. It does live inside me and I have to accept this and all that it means. I don’t however, have to feel sorry for myself. Nor do I want that from you.

Mental Manipulations

images.jpeg

It would be too easy to swim in a soupy tear stained pity pot of discontent. If I let myself, I could fall prey to the constant drone of discomfort radiating from my core. Living with a chronic illness is not for the faint of heart nor is it for sissies. I cannot and will not allow myself to be a victim of the nagging rage of my sarcoidosis.

I live in an unyielding state of disruption. The simplest tasks most people take for granted, like taking out the garbage or folding laundry, take energy I sometimes do not have or have to work very hard to muster. It’s a constant game of cat and mouse that I play with my body and my mind. I cannot allow myself to dwell in the heaviness inside me and I don’t just mean the physical hardship, I mean the heavy heart I could bear if I allowed myself to think too hard about just how difficult it is to function.

Every day is new adventure in wondering what battles my body and brain will have. I wake each morning with my mental checklist. Did I get good sleep? What hurts today? What do I think I can get done? How much energy do I have? Of course, the answer to most of these questions can turn on a dime. I often wake feeling pretty good only to slip into the foggy funk of fatigue before I even realize what hit me and then all my best intentions come to a screeching halt. This is when the mental manipulation must begin but it doesn’t stop there.

I am also in a slow simmering state of sustained achy irritation all the time. It’s kind of like the quiet hum of a fluorescent light. You get so used to it that eventually you stop hearing it but every once and awhile it becomes incredibly annoying and you have to turn the light off. Other times the pain is actually as loud and bright as a heavy thunderstorm during an earthquake. One way or another, it is constant and between this and the unrelenting body blocking fatigue, I need to keep a strong mental game at play.

The rules are simple. It’s all mind over matter. I decide that I can overcome any physical challenge and most of the time I do. Somebody once said, and I have no idea who it was, that “the body achieves what the mind believes.” I probably saw that on Facebook or something, but you get the idea. This is pretty much how I mentally manipulate my body into doing what I need it to do. I will myself beyond the pain and misery. I trudge and I push and I fight. I am at war with my body and while my body sometimes wins the occasional battle, I need my mind to win the war.

You Don’t See Me

13239237_10154557455315715_2951512816532228018_n

You can’t see it but I can feel it.

You don’t notice it but the subtleties are there.

You are grateful for my smile. The mask that I wear.

You don’t really want to hear about my pain or the agony I softly bear.

You can’t spot the quiet wince or the silence scream.

You can’t detect the delicate shift in my spirit. I know my energy has waned.

You won’t observe me gasping for air. I inaudibly stifle this panic.

You choose not to look too closely. I wouldn’t either if I were you.

You don’t want to see me for who I really am.

You want me to be well.

I want that too.

 

What Is Courage?

images

Knowing when to walk away…

Meekness in the face of a bully…

Taking the right stance at a difficult time…

Fighting when the time is right…

Sometimes saying no…

Understanding fear is part of life…

Being quiet at the right time…

Accepting a different point of view…

Waking up to face another day…

Defending the truth…

Setting personal boundaries…

Standing alone in the crowd…

Learning restraint…

Allowing for unknowns…

Finding peace in chaos…

White Bean Kale Salad With Sweet Tahini Dressing

IMG_3974

Once and awhile I like to post a healthy recipe…I like to do this because eating a healthy diet is a HUGE help to me in my fight against living with sarcoidosis. Here’s a wonderful kale salad recipe that I made the other night for the first time. It’s a keeper.

What You Need:

BEANS
  • 1 15-ounce can white or butter beans, rinsed and drained – I like cannellini beans
  • 1/2 lemon, juiced (1 Tbsp)
  • 1 Tbsp olive oil
  • 1/4 tsp sea salt
  • 1 Tbs fresh parsley, chopped, plus more for topping
SALAD
  • 10 ounces kale, chopped, large stems removed – the smaller you chop it the easier it is to chew
  • 1 lemon, juiced (2 Tbsp)
  • 1 Tbsp (15 ml) olive oil
  • 1 Tbsp (15 ml) maple syrup
  • Pinch each sea salt + black pepper
  • 1 clove garlic, minced
  • 1/2 cup or so of walnuts
  • 1/2 or so of golden raisins (regular are fine too)
  • 5 oz of grape tomatoes halved – optional
DRESSING
  • 1/3 cup tahini
  • 1 clove garlic, minced
  • 1 1/2 lemons, juiced (3-4 Tbsp)
  • 1-2 Tbsp maple syrup
  • Pinch each sea salt + black pepper
  • Hot water to thin – amt depends on how thick you want the dressing to be

How To Prepare: 

  1. Add drained beans to a small mixing bowl and add lemon juice, olive oil, sea salt, and fresh parsley. Toss to combine. Set aside.
  2. Add kale to a large mixing bowl with lemon juice, olive oil, maple syrup, salt, pepper and minced garlic. Use your hands to massage the kale and break down its texture a bit, and to season the salad.
  3. To prepare dressing, add tahini, garlic, lemon juice, maple syrup, sea salt and pepper to a small mixing bowl. Whisk to combine, then add hot water to thin until pourable. Taste and adjust seasonings as needed. Set aside.
  4. Lastly, add beans, walnuts, raisin and tomato and 3/4 of the dressing to the kale and toss to combine.

NOTE: Adding a diced red onion to this recipe would probably also be quite tasty!

The Illusion

download (1)

The deceiving impression that something unbelievable is real. 

A mad delusion in the virtuous belief that life is fair.

The false comfort in the righteous power of control. 

A shaky belief that there is more to triumph than luck. 

An erroneous assumption that acting with valor brings reward. 

The misguided notion that doing the right thing always leads to success. 

A flawed assumption that domination over difficulty will bring ease. 

The mistaken understanding that positive results only come from hard work.