Emotional Gymnastics And Other Games We Must Play

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Sometimes I wonder…”Am I just fooling myself?” I mean, I try to be a positive person despite my sarcoidosis, this chronic illness that so changed my life. I try to focus on what I have instead of what I lost. I do know how important attitude and outlook are when it comes to managing your body! The brain and the body are connected. If I ever doubted this or once didn’t give it much thought, I am wholly aware of it now. I’ve also become aware of the mental games I must play to stay ahead of a sinking, soul sucking sorrow that my body has betrayed me.

Last week, I had to go for an MRI. I’ve had them before. I knew what to expect and I’d never had a problem getting in that stupid metal tube before. This time, right after I laid down on that cold hard table and the tech put that cage around my neck…YIKES! I’ve never had a panic attack before so I wasn’t sure if this was what was happening but I could not breath, I started to sweat, I wanted to cry and run away at the same time and, I thought I might die. The tech realized quickly what was going on, took the cage off my neck, had me sit up and take deep breaths. She was very kind about it. She distracted me by asking why I was there and what was going on. During our conversation, she confessed that she too has a chronic illness. She shared some of her awful experiences with the medical community. Only someone else with a chronic illness can understand how this would put me at ease.

Something she said has stayed with me. She talked about how ever since she got sick, weird things, things she doesn’t expect or never experienced before now frighten her. She mentioned a new fear of heights. I thought about that a lot after I got comfortable enough to finally get in the tube and have my imaging done. Apparently I am now claustrophobic. Thank you sarcoidosis. Her words ring so true though, that while I know I am brave in new ways, ways other people could not be, I also now feel like a chicken much of the time, unsure and often ill at ease. It’s a feeling I have to constantly fight but has become so second nature that I don’t even know the battle is raging until, well…I have to go for an MRI! It’s a quiet state of panic until something tiggers it.

Here’s the other thing that happened during my MRI, my husband had to come in the room and hold my hand. Ugh, talk about embarrassing. Now, my husband is a wonderful man. He would never say or do anything to discourage me or further embarrass me. He came in the room, put that handsome big smile on his face that still makes my heart melt and said…”Come on, let’s do this thing.” I took a few more deep breaths, the tech said she’d keep the cage off my neck if I promised to keep still, my husband grabbed my hand and held on for dear life. I survived the MRI!

On the way home from the imaging, I found myself silently shaken and a feeling of complete inadequacy came over me. I hate how depend I feel sometimes now. I used to be so strong, could face every fear and jump into life with both feet. Not anymore. My brother once told me that he was shocked that I’m not afraid of anything. Well Bro…I am now. Some people say I’m brave because I make living in constant pain and uncertainly look easy. Sometimes I feel like a phony, like that smile I plaster on my face just thinly veils an underlying misery.

It occurs to me that the amount of emotional gymnastics that I have to play just to try to be happy, let alone have any peace, is astounding. It’s a choice to try to be happy and all the twisting and contorting I put my mind through to be grateful certainly feels like exercise. It’s hard work but it is worth it. No amount of mental gaming playing is ever going to change the fact that I hate feeling weak and dependent though. Yet, in order to shake this feeling of inadequacy, I know that I must now bend my mind around something other than my sorrow. I must push away the feeling that just because I needed my husband, I am not enough. I must focus on the fact that I have such wonderful support in my life, that he was there when I needed him and that mentally, I did overcome my new found claustrophobia. I am not deficient because I needed help. Everyone needs help sometimes. Or, maybe I am deficient but, you know what…who isn’t? However I look at it, I know that I need to accept that getting help the you need is more a sign of strength than it is of weakness.

So, “Am I fooling myself?” Maybe. Sometimes. Does this mean that I’m a phony? I don’t think so. It makes me just like anyone else who is looking for peace of mind no matter their circumstances. I don’t pretend living with sarcoidosis is easy, I never have. Learning to tumble through all the feelings that come with life with an unpredictable, possibly life limiting, illness is probably the only way for me find any happiness at all. I will allow myself those breath stopping, gut wrenching moments of reality from time to time. Life IS harder when you’re constantly sick. I will also continue to zig zag, dodge, jump and twist my way toward acceptance. I will play whatever emotional games I need to play in order to let go of hopeless fears and unproductive self loathing. I didn’t ask to be sick but, it is up to me to figure how to cope with it now! And, there’s nothing fake or phony about smiling sometimes when you’d rather cry or laughing when you’re scared. I’m not an imposter. I’m human.

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The Answer

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Acceptance only comes after awareness.

Acceptance is acknowledging what can’t be changed. 

Acceptance doesn’t mean liking something. 

Acceptance changes perspective.  

Acceptance is not resignation. 

Acceptance brings peace. 

Acceptance and attitude go hand in hand. 

Acceptance creates opportunities for growth. 

Acceptance requires tolerance. 

Acceptance is humbling. 

Acceptance is a process. 

Acceptance only happens with patience. 

Acceptance is an act of self-restraint. 

Acceptance is relinquishing control. 

The Tranquility Credo

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Resist what is wrong even when what is wrong is the easier thing.

Rise up for what is right even when it is the harder thing. 

Seek truth in the face of absurdity.

Seek to be kind even to those who are not. 

Be curious.

Be brave. 

Find peace because another’s chaos does not belong to you. 

Find courteous goodwill in the face of disagreement. 

Resist the need to be right rather than happy. 

Rise up in principled purpose for those most in need. 

Strive to be honorable in your actions and accurate with your words. 

 

Tennis Lessons

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Every once and a while I think I have a brilliant idea about something to write about but I’ve been writing my blog long enough now, that I know that I often need to go and see if I’ve written about that particular thing before. It’s not that I mind writing about the same subject more than once, it’s that I hate it when I write a post and then realize that I wrote almost the same post six months or a year earlier.

Today was almost one of those days. My plan was to write a post about all the metaphors for life I have learned from playing tennis. Anyone who regularly reads my blog knows how important this game is to me and how after getting physically sick, it has become even more important because it is a game I almost had to stop playing. After doing a search, I have apparently written about this idea before…several times in fact…and I’m going to again now but hopefully with some originality. While I was on the tennis court today several thoughts about this game and what it has taught me popped in my head so instead of telling you a story, as I so often have before, I’m just going share the thoughts I had today as they occurred to me. All of them apply to both the game tennis and the game of life:

Tennis has taught me that when you take your eye off the ball you lose the point…every time.

Tennis has taught me that in order to win, you’ve got to play.

Tennis has taught me that being strong and fast matter but being smart matters more.

Tennis has taught me to have fun.

Tennis has taught me that sometimes the risky shot is the winning shot.

Tennis has taught me the importance of stepping forward.

Tennis has taught me to never to give up.

Tennis has taught me to stay focused on what I want.

Tennis has taught me that I can always play better.

Tennis has taught me the importance of being a gracious loser.

Tennis has taught me that when I miss a shot, it’s best to let it go and move on.

Tennis has taught me that anger does nothing to improve my game.

Tennis has taught me patience.

Tennis has taught me to value practice time.

Tennis has taught me that if you want it, you’ve got to work for it.

Tennis has taught me the power of positive energy.

Tennis has taught me that when I am lazy I will miss opportunities.

Tennis has taught me to keep moving.

When…

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When you are confused…Learn 

When you grieve…Weep

When you are divided…Unite 

When you are lost…Seek

When you are stuck…Change

When you are alone…Join 

When you cry…Laugh 

When you are ill…Heal

When you are scared…Hope

When you are uncertain…Pray

When you argue…Listen

When you are peaceful…Trust 

When you are grateful…Share 

When you despair…Hope

50 “SarcoidosisSoldier” Life Lessons

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  1. No matter what happens to us, we control how we respond to it.
  2. Don’t take any drugs a doctor prescribes before knowing the full extend of their side effects.
  3. Life is too short not to laugh every day.
  4. Go to bed with gratitude in your heart for what was good about your day.
  5. Wake up each morning thinking about who and what you love most.
  6. Eat a lot of fruits and veggies.
  7. Put down the donut.
  8. Get some exercise.
  9. Don’t make excuses about anything.
  10. Rest when you need to but don’t be lazy because life is too short for laziness.
  11. Admit mistakes and apologize when you are wrong.
  12. Another person’s bad attitude doesn’t have to be our problem.
  13. Avoid drama.
  14. Watch sunsets.
  15. Sit by the sea whenever you can.
  16. All politicians lie.
  17. We don’t have to agree to get along.
  18. Diversity of thought is a good thing.
  19. We cannot win if we don’t ever play the game.
  20. Mistakes are as important as success if we are willing to learn from them.
  21. Not all battles are worth the fight.
  22. Take care of your body as it is the only place you have to live.
  23. Get a dog so you can truly experience unconditional love.
  24. Be a good advocate for your needs because others cannot read your mind.
  25. Don’t look behind you…you’re not going that way.
  26. It’s okay to change direction.
  27. We can’t always get what we want.
  28. Sometimes the thing we want most isn’t good for us.
  29. Live your life your way and let others do the same.
  30. Judging others will come back to bite you.
  31. Ignorance is not always bliss but sometimes it is.
  32. There is life left to live after grief and loss.
  33. No one person can meet all of your needs.
  34. Do what you say and say what you mean.
  35. If you can’t do what you say, explain yourself without excuses.
  36. Actions matter…so does inaction.
  37. You cannot unsay something.
  38. There is nothing like losing something to make you appreciate it.
  39. Don’t take your loved ones for granted.
  40. Our health matters…without it everything is harder.
  41. Don’t believe everything you hear or read…if it sounds wrong, it probably is.
  42. Live an examined life.
  43. Be kind to strangers…you don’t know what they are going through.
  44. If you hear music…dance!
  45. An academic education is important but so is the school of life.
  46. If you have all of your senses…use them!
  47. Eat to live…not the other way around.
  48. Taking the high road sometimes means walking away.
  49. Showing weakness can actually be a sign of strength.
  50. Be honest with yourself…always.

What We Have Left

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I’m finding that Facebook is full of a lot of pithy little advice, condensed counseling and succinct direction about how to live your life. I came across this little tidbit during my morning scroll through the endless noise of social media and it immediately made me think about my life with sarcoidosis and my daily decision to live and fight or give in and give up.

You see, sarcoidosis had taken much from me. It has taken my career, my energy and my strength. It has invaded my body with constant pain. It has dulled my once sharp mind and melted my quick wit. Sarcoidosis has turned my life into a daily battle of wills…my will versus its desire to destroy me. There are things this disease has taken from me that I will never get back. I know this and accept it but there are things this disease has also given me that I would not otherwise know or understand and, while I would not call this a “win win” proposition, as I’d much rather be a little ignorant and have a healthy body, I will say that I have learned to make the most of not only what I have left but what I have learned.

I haven’t lost the core of who I am. I may not be able to run as fast or remember every word I want to say but I am still me. I am still the person I’ve always been, at the heart of who I am…perhaps even a little better because of sarcoidosis. I know that I make some decisions differently now, not just about how to use my energy because it is limited but, also about how I want to be treated and how I treat others. I find that as I have to be a lot more patient with myself, I am with other as well. I am less judgmental than I used to be…less of a know it all and this actually makes me a happier person.

My mother used to say, “Would you rather be right or would you rather be happy because most of the time you cannot be both.” Before sarcoidosis, I thought I understood what this meant. Now I know that I actually had no idea. What I know now is that other people’s negativity, need to control and ignorance aren’t my problems. I don’t have to be the fixer or prove that I am the smartest person in the room because I have finally learned, thanks in part to being chronically ill, that the smartest person in the room is usually the quietest.

I find that I am also wiser with my time. We only have so much of it. I don’t want to waste it wallowing about what used to be or what isn’t anymore. Instead, I choose to cherish my husband, my home, my dogs, my world…albeit on a much smaller scale. I’m no longer driven, no longer striving, no longer reaching. Today, I know that truly living requires me to be present in this moment, right now. It’s hard to do that when you are always seeking the next “big” thing because life is not really about the “big” things. Most of the time, life is most enjoyed in the small quiet moments, often missed when “big” things are being coveted and mindless chased after.

Sarcoidosis is going to do what it is going to do to me physically. I can spend my energy and time in worry over that and over what it has already taken or, I can spend what is left of my time and energy making decisions and taking actions that seek to bring my life peaceful relief and joy, that seek to mend past regret, that are healing and hopeful and that bring me comfort. It really isn’t what happens to us that matters but how we decide to respond that makes all the difference. Things may have been taken from me because of my disease, but I still have a lot of life left to live and I intend to live it well no matter what might come my way. This is one thing no disaster or disease can take from me.