Thursday, August 10, 2017

Grief, Anger and Horror

One year ago today, I was laying in the ICU fighting for my life.  I have said those words for the last 7 days, and I have 5 more to go before it is not true.  Twelve days of my life of which I have no or very little memory.  On Thursday, August 3, 2017, I was in an airplane on my way to St. Louis for Gun Sense University. Around 1:15 I got a sharp, take your breath away, pain in my abdomen.  I had to take pain killers and stand at the back of the plane for 10 minutes or so before it eased.  This was the exact moment 1 year ago my body went into septic shock. My body remembered the pain and let me know it remembered, even if I did not.

The weekend away took my mind off all things a year ago and I could only focus on what I was learning.  But now I am home and there is another part of my body letting me know it remembers - my heart.  I have been incredibly sad all week culminating is a cry-fest this morning.  I vacillate between anger and grief and horror.  Knowing that a year ago, I was laying in a bed with tubes and IVs and procedures being done to my body and being completely unaware...horrifies me. Knowing my kids and best friend and husband were keeping watch without knowing if I would live or die or come out right in my mind....grieves me. I feel a cloud over me this week.  It is dark and menacing.  I just want to climb in bed and cover my head.

This is me, a year ago:


Have no memory of this, but am kind of glad they took the photo. It is the only "proof" I have that I was actually there.

There is lots to celebrate.  There is lots to be proud of.  But for now, I need to feel all these feelings I am having and let them run their course.  So I will allow myself to continue vacillating between grief, anger and horror.  Because honestly, I don't know what else to do.







Last Post of 2016

Written on December 17, 2016...still real today.

This morning for some odd reason, I looked back over my facebook page.  On it I found so many people sending me their thoughts and love.  Some people I knew for a short time long ago, and yet, they took time out of their day to write to me.  I have found this profoundly moving.

Sometimes when birthdays pop up on my screen, I think will they really care if I say happy birthday? Do they really even remember me?  So I must confess over the last year, I have not written more than I have.  I am now sorry that I didn't write.  Now I realize that we just don't know what people are going through.  We don't know how much our taking the time to think about them, even for that minute,  will mean to them.  Usually that moment conjures up memories of that friend or loved one and we actually spend more time thinking about them that day.  Those moments matter.  You notice I did not say "the words" matter.  I said the "time".   The knowledge of you thinking of a person is really what they need.

I have spent this last half of 2016 on the sidelines, pretty much.  I have observed from my chair how busy everyone has been.  How tired everyone is.  How much hurt everyone is holding.  How much anger courses through everyone's bodies.  How much grief everyone is feeling.  How many of you are fighting for just causes. How much love you are all capable of having.  How much joy you bring others.

I want to acknowledge it all.  I want to express deep gratitude to each of you.  For those who have lost a loved one this year, I cry with you, I hold you in my heart, and I give you space to grieve.  For those who are also fighting daily to stay healthy and as well as possible, I am beside you, I vent with you, I cry with you, and I am a warrior with you.  For those fighting cancer or other life threatening diseases, I am angry with you, I cry with you, I laugh with you, I hold you in my heart.  For those experiencing big life changes this year, I sit beside you, I cheer you on, and I hold your hand.  For those of you who are just trying to parent children and teens and get them to adulthood, I scream with you, I curse with you, I shed tears of happiness with you, and I hold you tight.  For those who are lonely and longing for love, I cry with you, I ache with you, and I am here for you.  For those who just feel lost right now with adulthood looming ahead, I hurt with you, I pace with you, I scream with you, and I trust with you that something will come along.

2017 is my "Kick Ass" year.  I will fuel my body with what it needs to heal.  I will exercise my body to keep it strong.  I will be present in my life.   I will feed my soul by being in nature, reading books, journaling, and sewing/knitting.  I will fight for the causes that are dear to me. I will be available to listen to any of my friends who needs an ear.

Just as 2016 has been a mish-mash of life, so is the last blog post.  Happy New Year everyone!


Dear Death

Originally written on August 25, 2016.  But reliving today...

Dear Death,

You visited me at my birth and several times in my childhood.  Those stories don't really feel like my own.  They seem to be more a part of my mom's story since she is the one who experienced the trauma and struggles to keep me alive.  I guess that wasn't enough for you,  I guess all the struggles of my 51 years of life and 28 years of chronic illness was not enough.  Maybe you needed to be shown or told one more time,  I CHOOSE LIFE.

The day you visited, I have to admit, I was tempted.  Tempted to give in and float away without pain.  But then my husband's hand clasped mine and my eyes fluttered to see my babies sitting across from me. I didn't want to stop holding his hand.  I wanted to hold his hand for years and years to come.  I wanted to see the wrinkle and age spots on both our hands.  I wanted to hold his hand as we watched our children possibly wed and have babies.  I wanted to hold that hand sitting in the surf and watching the sun set over the Atlantic ocean.

My babies, I want to see them grow older into middle age.  I want to be witness to the joys and concerns that come with growing up.  I want to be at the end of the phone when the tears of joy and sorrow need to be shared with their mother. I do not want them to be mother-less.

I said NO to you that day.  I held onto the hand and the visions of my babies.  I held on.

So move on.  I wasn't ready at birth or in the coming 2-3 years and I am not ready now.  You see, I am meant to be here.  I have purpose.  I have been a true friend to many, many people, I have taught and loved hundreds of children and I have helped raised 2 amazing human beings who will also change this world each in their own way.  I have partnered with an amazing man and supported him in many different endeavors.  I am Nana to Malaney and friends with Max and Eleanor.  They need me.  I don't stop here.  I am fighting a fight that is NOT over.  I am fighting for a safer world for my children and their children and all the children whose lives I have come in contact with.  I must help to stop letting guns kill our people.  I have so much to give.

You see, I am not ready to go.  I know pain.  I can handle pain.  I have never known this weakness, but you see, Death, I still am gripping my husband's hand and we are walking through this together.  I am NOT alone.  So, move one.  It is not my time.

Sincerely,
KaKi McKinney

Monday, December 12, 2016

Anxiety - 1, KaKi - 0

This Saturday, I will once again walk into Rex Hospital, and register for surgery.  This will be the third surgery and hopefully final surgery. I have come so far since August 22nd when I came home from the hospital after a 22 day stay.  I have learned to walk again without help.  I have learned to write again.  I can cook and feed myself.  I can take showers without anyone helping me and without the aide of a shower chair.  I am able to follow conversations with multiple people.  I no longer feel overwhelmed outside my home.  I have been able to get back involved with Moms Demand Action and even lead 2 meetings!  And, I can drive!!  On August 22nd, some of these things felt impossible. My confidence in myself was shot.  I was so dependent on all around me, I just wasn't sure I would ever get back to my former level of health.  But, I did.  My body, the body I have felt so betrayed by all these years, actually showed me how valuable it is.  How strong and resilient it is.  It lived and healed even when I wasn't sure I wanted to continue.  It has surpassed all my expectations.  When the surgeon mentioned having my reversal surgery in December, I laughed!  OUT LOUD, laughed!  But here I am.

Here is the thing though.  My body wasn't the only part of me attacked on August 3rd.  My mind and soul were also damaged.   I had been violated.  Trust in my doctors and nurses was crushed.  This extreme vulnerability started raising memories of other violations, many that had been buried for a long time.  The expectation of a third surgery hung over me like a huge black cloud.  How could I let my doctor cut on me again?  How could I submit myself to that powerless position again?

Now I am sitting here 5 days away from doing just that.  Luckily, having an ileostomy is a pain in the butt!  It is no fun!  I have experienced leaks, and the bottom of bags just coming open and spilling all the contents.  It is not easy to wear any kind of pants or jeans with the placement of this bag.  So I have lived in leggings pretty much continually since August.  The fear of leaking in public and the overall uncomfortableness of the bag is definitely driving me to have this surgery and get rid of this.  I hope to have all vestiges of this surgery gone and begin 2017 anew!!

So, I will gather all the courage I can, and maybe borrow some from my kids and hubby, and will walk into that hospital on Saturday, lay on the gurney, get that IV, and go to sleep and put my total trust in my doctor to do a good job.  This time I know he understands what a big deal this is, and he will rise to the occasion.  He is a good man and a great surgeon.  It is time for both of us to have a successful do-over!

So you may not be seeing me for a few days, I will be regaining what strength I lost again.  But this time I know my body is capable.  And then you are going to watch me treat my body to the exercise it needs and the nourishment it needs.  My body will be pampered in 2017.  It is time for me to show my appreciation for all it has done for me!

This post has been written during an extreme panic for me.  I needed to get it out.  I wasn't going to publish it, but, you know,  this is me.  This is what is going on.  My meds have finally settled my head and I am feeling calmer.  But anxiety will be my constant companion I fear until saturday!!

Monday, August 29, 2016

The Short Story of Where I Have Been

August 1st, 2016, I walked into Rex Hospital to have a sigmoidectomy.  This would relieve me of the constant diverticulitis I had been battling the past year.  I was scared, of course, but felt sure that I was doing the right thing.  The surgeon came out saying it was a textbook surgery and that he was very confident the new seal was secure.

August 3rd I went back into an emergency surgery because I had become septic.  There were some tense hours for my family. The doctors found a tear they had made when stretching the colon to seal with the other part.  I woke up 12 days later having only little snips of memory.  I spent a few days in ICU after the 2nd surgery and then went back down because they couldn't get my heart rate down and a while, 10 days in ICU and 12 days in regular room.

I expected to come home August 4th with laporoscopy scars and sore.  Instead I came home August 22nd with a 4 inch incision starting at my belly button.  Another incision along the "C-section" line.  And an illeostomy.  The thing I had most dreaded.

I lost almost all my muscle mass, lots of weight, my taste buds and confidence.  I gained a new appreciation for life, a fighting spirit and hope for a better life.

Because of my extreme weakness I am not allowed to ever be at home alone.  I am also having to limit my activities.  And well, everything is an activity. Showering, exercises, talking on the phone, sitting up in a chair, and even eating.  

So, I know you all want to show me your love, and I so appreciate it, but right now, I need it to be in card form, facebook notes, I am loving funny children pictures and videos!! I can usually handle texting as well now.  I just might not be as fast as I used to be.

This is the quick synopsis, because I know some of you are worried.  More of the story will probably come as I begin to process more and more.

Thank  you for your patience and concern.  I love you all!

Saturday, May 28, 2016

"I am tired"

"I am so tired."  "I am exhausted."  "Not sure I can do much more."  These are all common phrases you hear on a daily basis.  The way we define these words -  tired, exhaustion, I can't do any more - is based on our own personal experience.  If you are chronically ill, these definitions change.  So far, I have not found a word that truly explains what it is to be tired to me.  I don't presume to speak for all chronically ill people, but I have had enough conversations to know that I am not alone in this experience.  So, if you are truly interested in knowing and understanding your chronically ill friends and family, this is a concept you need to try to understand.

We wake up tired.  I mean, we have slept 8, 9 or 10 hours and we wake up and feel tired.  The tired like you feel mid-day after a really busy  day, and it is just 8 a.m. for us.  So when we say we don't want to plan anything before 10 a.m., it is not that we are lazy, we simply need that time to get going.  All the things you do absentmindedly take real concentrating and negotiating.  For instance, "I need to take a shower.  ugh, but I have 3 errands I need to run, and I have dinner out tonight.  I am not sure I can dry my hair.  Well, you know it doesn't look that bad....I will wash my body and wait till tomorrow when I have less to do"

By our mid-day after probably doing only half of what you do, we feel like you do around dinner time if you have been busy the rest of the day.  Around dinner time, we feel like you feel if you have pulled an all-nighter.  Seriously.  Maybe even more tired than that.  I have never been well, so I don't know, I am going by discussions with my well friends.

Then you add aging, weight gain, pain, emotional stress and well, you can pretty well multiply our tiredness 10 fold.

Why am I talking about this?  Because we don't like to talk about it with our friends and people who don't know us well.  We want to appear normal.  Plus we don't want people to not ask us to do things or involve us in things.  Because most of us, the ones who have truly accepted our bodies, have learned exactly how much energy we have and we mete that out precisely.  I mean PRECISELY.  Sometimes we miss the mark and we pay.  You may too, because you have to carry us home. LOL  So when a chronically ill person tells you they will do something, know that they plan their entire day around how much energy that will take so they won't let you down.  Sounds exhausting, doesn't it?

I have shared the spoon theory with you before, and if you are new to my blog, please go read it:  The Spoon Theory.   Hopefully my words along with hers will help you to understand a bit better.  But please know, we want to be treated normal.  We just need you to know that when we say we are done, don't make us feel guilty or bad, because we are already doing that to ourselves, we don't like to miss out on things.

I have a great family who helps me.  My husband has helped to teach me about patience with my body and the importance of spending my energies wisely.  My children have taught me you don't have to do big things to have fun and bond.  A night in with a movie and snack foods is just as good.  My friends have taught me how to truly love a friend.  They give of themselves in amazing ways.  My great friend, Allison Dahle, gives of herself constantly.  She drives me to MY events and pitches right in where she sees I can't.  She can gauge my exhaustion almost as well as me and Jack!  And she just loves me no matter what.  We planned to go out and shop and have a big day, but I can't, well she comes and gets me and gets me comfortable on her couch and we watch tv or giggle and talk or I sleep and she does whatever.

I am a lucky woman.  Because of my family and friends, I get to continue giving to this world.  And please know, family and friends, I know it is because of you that I can do the work I do.  I love you all dearly.

So choose love and joy every day!  Oh, and let's end gun violence!!!!!  :-)

Thursday, May 12, 2016

Parting with a good friend

Good bye old friend.  I am so sad to see you go.  You have been with me since I was three years old.  My grandmother Eads (Allie) introduced us.  I loved those mornings with her.  In college you brought James Hamilton into my life through our mutual appreciation of you.  We had some great discussions in those early hours pretty much by ourselves.  You got me through having to be on duty at 7:00 a.m. sharp when I taught in middle school. You have been part of so many lovely mornings of lounging and starting my day slowly.  I don't know what I will do without you.  I know, I can go to your cousin, but it isn't the same somehow.  I will miss you!  Maybe we can try again in a year or so.  But I can't stay in a relationship that's abuses me so much!  The pain is too great and as I am getting older and weaker, I can't recover as fast.  I have important work to do right now, I don't have time for recovery from your rampages.  Plus you seem to be angrier and more destructive each time.   So goodbye Mr. Coffee, hopefully we will meet again.