The Elephant in Every Room...

The Elephant in Every Room...

The Elephant in Every Room... How are you feeling and other lovely questions...

I have had a beautifully busy last few weeks. I have attended dinner parties, birthday parties, a fabulous sparkling water and wine club with the girls, and some fantastic chats on the green sofa. And I'm struck by a common thread... I'm losing my conversational edge... No, really, I don't know how to do social chit-chat.

On my red pen list of things I'm doing wrong: I'm struggling with how to handle well wishes... How crazy is that?  And I know my friends often struggle with the same... 

These days any social encounter, a quick stop at a store, or just being out and about, I'm treated like a celebrity. People are surprised to see me, so they flock to me to say hello, and I LOVE IT!  Nothing makes someone who has a chronic illness feel better than friends and loved ones who are happy to see you... It fills your soul with an extra energy boost. I'm seldom alone on these outings; and I seem to always have a beauty or two with me, and they smile and hold a hand, happy too, to have me out-and-about!

But inevitably the question comes, "How are you feeling?", and it's a hard-one to answer, because usually it has taken all my energy to be anywhere... For instance at Easter, so many friends gave me hugs, love and told me I looked great and asked, "How are things?" and I didn't know what to say. I either make a joke about my magical make-up skills that cover the dark bags under my eyes and horrible pale skin.  I used the make-up line, five or six times... Or I say "fine", which is a lie; or my gran-daddy answer "horrible", or I say "good-enough", because that is all I have. All of these answers seem wrong or lacking...

My Sunshine Girl always asks me in the most loving way, maybe it's because she is Sunshine...  She asks: "Is it a good day?", and I love that question, it's not about my body, or my mind, or my spirit, it's about all of me... And that works for some reason. Because it gives me more ways to answer. And my answers are more than just how my body is working... Sunshine doesn't even know she asks it that way, it's just how her spirit works, open and honest. It gives me the chance to say it's a perfect day, because my beauty just sang in the choir, or  it's a great day because the sun is out and it feels great on my skin. Or I got to the cake store and we are in the possession of some amazing ingredient... You see, I'm the first one to tell people when I have great news or I feel good...

Now if you are someone who has asked me, "How are you doing/feeling?", don't beat yourself up... I catch myself asking people all the time, to friends who are ill, have parents that are sick, and then I get in the car and kick myself, I know this is not an easy question with a quick answer. Or classic/favorite: ask a pointed question with kids standing around, done that more than a few times too... I'm the one who has the illness; the expert. Nice...

We just all want to fix what is broken, our hearts and minds act so differently... Our hearts won't tolerate the pain of a loved one, and we can't settle in our hearts suffering of any kind. To solve the problem, we allow our mind to act as the "fixer". How are you? What can I do?How can we fix the problem? Men hold doctorates in this. Men are hardwired to fix, that's why women get so frustrated; we want them to listen and feel... And we are all too aware, not everything can be fixed. 

There is nothing wrong about any of it... And sometimes it's fine to ask, when I'm alone... But some days you just want to give your chronic disease a holiday, and you from always being known as the sick girl.

Go back to my celebrity analogy for a second, you wouldn't go up to Meryl Streep if you saw her in a restaurant with her kids having a family meal to say, "Hi, I'm your biggest fan, can I have your autograph and talk about your theory on acting"... Listen, I'm not trying to say I'm a zillion time Oscar winner, or I'm better than anyone else... I'm just saying, sometimes Meryl wants to be Mom, wife, girlfriend, not Academy Award wining actress...

Does this make sense at all? Or do I sound like some crazy snob? That is not my point, and if that is your takeaway, I have completely failed in this post. It's just, I'm so happy to be out and about, I want to talk about you, your family, can we gossip about shoes, spring trends, or kids?  Normal stuff and give my chronic disease a day off... 

And to be honest, sometimes I worry that I have lost my cocktail party banter, that I can't talk about anything else...

But, I do understand, it's a double edge sword, because I/we/all chronically ill folks, don't want to be forgotten, and do want you to ask how we are... So it is a fine line... At times, I'm more worried about you, I don't want you to be disappointed when I tell you that my life is hard, and my pain is really bad, and I'm going to be in bed in an hour because I gave all my energy away... 

I do love a quick email that says, "give it to me, what is the latest", and I will speak my truth if you come over for tea, and we have an hour to visit. 

There is no magical answer.  And I know that it is more about me and how I react to the question, then the question itself.

But, I can tell you what friends have said that I have cherished: the extra hug that says, "you look beautiful", "The kids are so happy, don't worry", "This event was better just because we got to see your face", "I love seeing you on my couch, (and I don't care you are in PJ's)", "Jeff is always smiling with the kids", "I'm so touched you made it, thank you", "I've got this spot on the sofa for you and a blanket", or just the knowing smile that says, you rock Kathryn and I'm all in with you.

This post feels heavy handed, and I don't want it too... We all just want life to be normal again, but that may not be possible.  So this is what normal for me looks like today... 

It all can change in an instant... 

I heard this quote on the news, I wish I had the source; but it's too good not to share:

"Good things are coming, they are already planned for you!" 

Well alrighty then... Lets get to the getting...

More than any post I have written, I want your feedback... So please share your thoughts, your challenges with love ones or your experiences with chronic disease.

And please, feel free to share this post. Sometimes just pulling the curtain back and talking about the Elephant in the Room, helps us all...

Namaste (the divine in me, bows to the divine in you)

xo,

Kathryn

The P

ilgrimage Gal

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David W. Siu

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If you would like to join me on this pilgrimage, filled with my bad spelling, self-invented grammar, and over all foolishness…  Click on the web version of this post and look for the “GET PILGRIMAGEGAL UPDATES VIA EMAIL” option at the top of the right border and enter your email address.

Solitude...

Search for Solitude...

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andywon

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What Solitude Brings…

This week has been busy, busy in that my Irish Prince was home for days with a bad virus. I've struggled for solitude; that place where you hear yourself and you make peace and find a place for the contemplative life.  

You see my mind has been clouded by life’s noises… The one that starts with worry, and stress and fatigue. The one that begins whenever my children get sick, really sick like a fever that stays 104 for 5 days sick... 

That makes it hard for me to hear my crystal clear voice. It puts me in mama bear mode; ferocious, warrior, and tireless for my children. But, this warrior state is also not sustainable… She has her limits and she may come and go quickly. 

So today, Monday, I sit showered, clean and worn down by the to-do list that has gathered dust for two weeks, time that my family needed my warrior side. But, she is now very weak from these battles and susceptible to attack.

In addition, I have also had to wage war on my own health lately, trying to “get-in” to the latest brilliant mind that can help me, the person who can hopefully unlock the mystery that my body continues to hide. The confounding medical issue these days is that finding the right doctor requires a warrior like mentality. Sometimes it really comes down to connections, who you know, who your doctor knows, who will stick their neck out for you… Will they confront colleagues for you and open the doors when someone may be slow to respond? 

And here is the dirty little secret of medicine; you have to be smart and tenacious to get great care. You have to engage, question, counter and argue for your health. And you may have never been weaker than you are when you do. 

I have an amazing allergist/immunologist; she is a brilliant doctor, a mother and wife. I wish she didn't have to be my doctor, because in another life, I think she would be one of my closest friends… She gets it… And will get in it… 

She comes from what some argue is the highest culture the world has ever seen; Persia. I think of her as a Queen, because when she enters the room she carries thousands of years of her exemplary culture in her. She is my warrior, she fights for me and that is why she is my Persian Queen.  

My Queen went to bat for me this week, calling the boys’ world of medicine out for not taking care of me. In her regal, calm but decisive way, she let my medical friends know they need to be in it…

Which leads me back to solitude; in English we see this word as dark and sometimes foreboding. But when you return to the Latin or “solus”, it means simply to be alone or single…

Which is what I’m seeking when I use the word solitude.  We all need moments of silence.  We have to carve out the time, create space in our life for a little alone time… Make room to listen. 

To hear our own heartbeat, to breath, to quiet our criticism of ourselves. 

When we turn off this world and connect with ourselves and our Creator, we truly find peace and a path for the future.

Peace be with you…

The Name We Don't Speak Of...


The name we don’t speak of…

You know how in the awesome Harry Potter books they talk about Voldemort as the name we don’t speak of… well when you have big health issues, like a stupid autoimmune disease, you don’t talk about remission… It is a dirty little word because it puts every one of your life dreams into that one word… Now listen, I’m  not saying I’m poor little old me in a corner crying about what my life could of, shoulda, would have been… I’m never going to run the Marine Corps Marathon, I’m not going to sail around the world…

But, I am the best wife and mom I can be… and that is good enough.

Life isn't perfect and life isn't easy, and frankly for too many of us, we have held onto the notion that everyone gets a trophy… everyone should be on the A team in soccer… Well news flash, not so much.

Maybe the best we can hope for is to learn to appreciate the exquisite moments of everyday activities… to love them, believe in them, revel in them and pull them up when you are in the darkest of the darkest moments…

For me my exquisite moments are very simple… a morning spent in meditation guided by the voice of a friend and sister that I would follow anywhere, a keg party for my girl Beth on her 40th birthday, the best party I have ever thrown, doing errands and getting slurpees with mini A and talking about where babies come from, first born sleeping on my chest for hours in the warm afternoon sun… You never get those moments back…and lunch with Clive anywhere…we have never had a bad lunch together… tea with Maureen, chats with Jess about the weather… I can talk to Jess for days and never get tired…  Mass when I feel great, don’t cough and the homily speaks to my soul… and Thanksgiving when we all sit down, the broken parts of my family quiets for a meal…These are my exquisite moments…

I can pull the memories out often to warm my soul, and there are many others, I can’t talk about, too close to share today….but this is what I do to get through… I don’t know how to run anymore…

Today when my Harvard said the words I have been dreading… ”we have run out of new treatments”, words I already knew, have been keeping me up for days, but didn't dare say out loud.  I’m left with the truth of the word we dare not speak...

There will be no remission for me today… or this month… or probably this year…

What amazes me is that I’m not sad, hurt or angry… I’m just diving into my box of exquisite moments… eating candy with my kids and laughing, being grateful that I’m not a new Saint this year (it is all Saints day after all), reveling in my kids joy in a holy day that we stayed in our jammies... That I won’t feel guilty for missing Mass… that I live in the Mass of Christ’s light... in the belief that this is not the world we are striving to succeed in, that these bodies are just a stepping stone to HIS plan… that I’m just working for the next life that will be free of the brokenness of this body… That we are the people of the resurrection…

So no, I’m not sad, or disappointed by this news… it is just an annoying little sometimes very big part of my life… We move on, we stay focused on the light that matters… Our exquisite moments and our faith...

Namaste my friends… the divine in me, bows to the divine in you…