Part 1 of my Keynote Speech

Hi Kittens!  Some of you may already know this; however, last weekend I was asked to give a key note speech at a light fundraiser.  I was so grateful to receive the call, and even happier that I was able to be there at the last minute for them.  Their original speaker had a family emergency and was no longer able to make the event; so the event coordinator called me. 

The coordinator of the event, a lovely lady by the name of Bethany, provided me with a transcript of my speech; so I thought I’d share it with you today.  The talk was about an hour long, so don’t be surprised if this takes you some time to read. 

To provide you with a little bit of background, the keynote was part of a fundraiser for “first line” support of Terminally Ill patients; lovingly referred to as Warriors.  First line of support usually means significant others and immediate family.  Although, at times, close family friends are included in this definition.  There were about 200 people at the event, from all walks of life.  As I stepped into the room to prepare for my talk (until I arrived, I wasn’t sure exactly what “topic” they wanted me to cover – so I was prepared for just about anything); I was reminded that Terminal Illness (whether it’s cancer, renal failure, heart disease, or any other TI) doesn’t discriminate between race, sex, religion, age, or sexual orientation.  It effects people from EVERY part of the world, in every group imaginable.

Bethany requested I discuss what it’s like to be a first line of support, as most of the people in attendance had a loved one recently diagnosed (within the last three months).  So that’s what I did.. from the perspective of the Warrior, and some best practices around being “THAT” kind of support .. the best kind for the Warrior.   So here it is, Kittens:  The transcript from my speech (FYI – I added some punctuation and parenthesis to make things a bit easier to read.  Otherwise it sounds like I’m babbling more than usual).    

Bethany:  Ladies and Gentlemen, it is my pleasure and honor to introduce to you our key note speaker.  She is a Warrior if I had ever met one, battling one thing after another with a smile on her face and the ability and willingness to put everything aside to help others.  She works full time, raises a daughter on her own, does a variety of different types of counseling and volunteers at a charity haunted house.  She’s the person we all strive to become and why we are here – to learn more about how to be supportive of those we love who are sick.  May I present to you:  April-Mae Davis

April-Mae: 4 Terminal Illnesses.  That’s my most recent count.  I send up my personal requests every day not to add to that, but I won’t hold my breath, apparently someone thinks I need a challenge.   Just to give you the quick run down, my four are: Leukemia, Breast Cancer, Congestive Heart Failure, and Renal Failure.  I have a couple of other smaller things wrong with me that complicate matters, but for the most part, those four are why I’m here today. 

You’ll notice I didn’t start right away with the typical introduction of “Hi my name is”.  There was a reason for that.  When you are diagnosed with a terminal illness you lose part of your own identity.  As Robin Williams states in his movie Patch Adams, we become “that interesting cancer patient.”  Or, in my case patient #99-RD283-D.  That’s my case number and what I’m referred to in medical journals and teaching manuals.   Part of that is Federally regulated and part is because it’s easier not to get emotionally invested in people when you don’t use their name on a regular basis.  So, before I get into the meat of things, please allow me to tell you a bit about myself. 

My name is April-Mae Davis; although I’m more commonly known as Trinity.  Consider it a nickname of sorts.  All my friends refer to me as Trinity and as we already have so very much in common; you’re already considered friends, so please feel free to call me Trinity.  My first diagnosis came somewhere around 13 years ago.  I was feeling a bit fatigued and run down, usually with a low-grade fever and a whole lot of bizarre bruises.  However, I was a new mother of a then 3 year old and it was the middle of Summer.  Of course I was going to be tired, I was running after a bundle of toddler with more energy than the Energizer Bunny.  I’m a redhead; so the sun and I are mortal enemies and I had a fever due to sunburn.  I was born a klutz – constantly bumping into things and falling… therefore the bruising. 

Like most of us, I had an excuse and reason for every symptom.  After all, I wasn’t really feeling all that bad.  At the insistence of my Mom – ok mostly it was just to make her stop worrying so much – I scheduled an appointment for a physical.  My regular doctor was on vacation, but her colleague was filling in for her.  I didn’t see the big deal, as it was just a physical.  As I went into the office, this new Doctor (who, by way was more supermodel than doctor) took my medical history and reviewed my symptoms and reason I was there.  She did a couple of quick once-overs of my body – checked the bruises and grabbed my hand.  She inspected the left lobe of my hands – the pad below your thumb and above your wrist – and said the words that will forever change my life.  “You have Leukemia but I don’t know what kind or how bad it is.”

OK ..hold on a minute.  I was at this office for a physical – and suddenly you tell me I have CANCER?  How dare you?!?  Turns out this colleague of my normal practitioner is a Hematology Oncologist – a specialist in Leukemia.  Don’t try to tell me things don’t happen for a reason.  This woman was supposed to see me and she’s been my primary Doctor ever since.    

And so started my journey – I’m not here to tell you all the gory details – that’s covered in a completely different type of talk; but I’m happy to discuss it with you later if you’d like.  However, I will give you the high level of what I’ve been dealing with for the better part of my adult life.   Turns out, the Leukemia was the type that is very rare in Adults, and a type the Doctor’s weren’t sure how to treat.  As Doc said to me in the beginning “treating you like we would treat the other patients would be like giving you a baby aspirin for a migraine, just not going to work.”  After my initial diagnosis – I was given 6 months to live without a viable treatment procedure.  Thank Isis for practical medical research – it has saved my life more than once. 

So, here I am 13 years later – having survived multiple rounds of chemo therapy, radiation, cobalt, countless surgeries, 2 total stem cell transplants, cardiac failure, flat-lines, total renal failure, the loss of eyesight on one eye, kidney dialysis and countless other medical treatment and medications.   I am a Warrior.. and I’m here to help you help your Warriors.   

One of my mantras about the support system is simple.   A terminal illness is harder on the support system than it is on the Warrior.  That’s because there isn’t any ‘right or wrong’ way to help a Warrior, and everybody’s situation is different.  There is an inherent guilt that comes with not being able to “make it all better” and help as much as you want to.  There is no fixing it for them, and most of the time, the Warrior  will want to do more for herself than she will want done for her.  This is our way of trying to stay in control.  The number one rule and the top advice I can give you is to BE PATIENT.  Try  not to get too frustrated with us and our stubbornness and hard-headedness.  We are trying our best; just like you are. 

When someone is first diagnosed with a Terminal Illness, it’s a devastating and horrible time.  A million things go through your mind all at once.  Things ranging from “Why me?” to “I don’t have the money to cover a funeral”.   We worry about who is going to take care of our plants, our pets, or house and our kids.  We feel guilty for making our family and friends worry about us.   We stress out over medical bills, insurance form, doctor’s visits, and how we are going to pay the mortgage if we can’t even get out of bed for work after treatment.   We freak out about when pillow will be covered in hair and when we will start seeing a ghost staring back at us from the mirror.  We start the research, the worrying, and the treatment all at the same time.   We need to talk to someone about what’s going on .. and that’s when the Warrior will go to you for the first time.  This is your chance to show them what kind of support system you can be for them.   It’s important to keep in mind that no matter how scared you are about everything that’s going on ... your Warrior is probably more scared.  It’s their mortality they are facing and it’s a frightening place to be.  So, when your Warrior wants to talk about their diagnosis, what’s happening at the appointments, the positives and negatives of a particular treatment – listen to them.  Don't show them that you are mortified about a needle being drilled into their thigh bone, don't shrink away when they tell you that they have to have a catheter stitched into place for weeks on end.  Provide your advice when you can, and let them cry.  Don’t act uncomfortable, or try to make light of the situation –this early in the game, very few Warriors are ready to joke about what’s going on in their lives.  Joking about it before they are ready will instill a concept of “you don’t want to take this seriously” in their head, and they will think twice about going to you the next time they need to talk.   

Getting through the “diagnosis” phase of an illness can take anywhere from a week to several months.  It depends on the illness, the extent of tests that are needed to accurately diagnose the illness, the tests needed to determine viable treatments … and the list goes on and on.   Most often during this diagnosis phase of an illness, the Warrior will go through what  we call “The Big 5”.  It’s the five stages most people relate to death or grieving; though in practicality getting a diagnosis such as this is a form of death.  Life as the Warrior knows it is over, and you’re suddenly dealing with a whole different life.   We go through denial “This is NOT happening to me.  Maybe the tests are wrong..they have false positives all the time.  This is just a dream, I’ll wake up and be able to brush this all off in the morning”.   Then the anger “Insert your favorite Sailor Terminology here.  Why ME?  Why NOW?  I have so much to live for.  Stupid environment, stupid carcinogens in my food.”  There is a LOT of anger to process with an illness…. Mostly because things are suddenly veering out of control and there’s no stopping what’s going to happen.    Then, of course, we bargan.  We pray to our favorite Deity  and baragain with our Doctors.  “if you take this away I promise to be a better person.”  Or .. because we are trying to gain some semblance of control “if I went to the Doctor’s sooner, they would have caught it before it got this bad.”      We go through a stage of depression; where every thing is terrible and all we want to do is lie down and die already.  Why bother going through anything when the treatments are usually worse than the illness?  Why put myself and my family through all this?  I'm going to lose my quality of life, I won't be able to do anything like I used to.  I wouldn't force my dog to go through this, why am I expected to?   There is also the stage of depression where we try to figure out how to say goodbye. After all, it’s called a terminal illness for a reason, right?    Finally, we find Acceptance. Acceptance of our illness, or our new "life".  Acceptance that the world and our lives are forever changed.  Acceptance that our life span isn't measured in decades, but in years.  For some Warriors it takes a while to get there, and some never get there at all.  I was lucky; I found my acceptance very early in the process.  Part of that is just who I am ..I accept the things that I can’t change and find a way to use them to my advantage. For me, it’s using my experiences and knowledge to help others through these processes.

The best thing you can do for your Warrior is NOT to try to push them or counsel them through the Stages.  They will get through them of on their own time, with help from you -- being there when they need to talk, or cry, or just sit in silence.  Remember, you are not a trained counselor - my apologies for those who are - , you are a support system.  Leave the counseling to the experts.   Of course, YOU will be going through these same stages, so if you find yourself overly frustrated with life, try to recognize what phase you might be dealing with; that can help out a lot.  And, of course, counseling can help you as well.

I tell everyone I can that there is a difference between therapy and counseling.  Therapy is where you go to someone, spill everything and all they do is listen.  It’s helpful for a lot of things, but to me counseling is a much different ballgame.   Counseling is where you go to someone, discuss what’s wrong in your life, what you’re having a hard time dealing with and talk it through together with your counselor.  They can offer advice and guidance based on their personal experiences and help you get through the hardest of times.  Trust them, and they can take you a long way. 

Soon enough you’re going to start ‘noticing’ the illness part of your Warrior’s TI.  Whether it’s the illness taking its toll, or – most often – the treatment’s effect on the Warrior’s body.  You will notice that they have less energy, are easier to anger, or are in pain.  There’s nothing you can do about any of these, things, so the best thing you can do is stop saying “what can I do?’   The answer will be the same every time “Nothing.”  Because, in all honesty, there is nothing you can do to relive the pain, or the radiation burns, or the uncomfortable-ness of a catheter.    Instead, sit with the Warrior and play a game, read a book, watch a movie and just co-exist with them.   If they will let you, clean up the house for them, take out the trash, go grocery shopping for them. I say if they will let you, because there’s a pride thing that happens with the Warriors.  WE want to be able to clean our own houses, do our own grocery shopping, take out our own trash.  We don’t want to have to depend on others to do the things that everyone else takes for granted.  So we get stubborn about it.   Sometimes we let up, but if we say “no, just leave it” that’s your cue to leave it.  Change the subject, and allow the Warrior their pride.   

Another piece of advice I offer is to not argue with the Warrior if they want to do something.   Imagine your Warrior being up all night throwing up after a round of Chemo and in pain from treatments.  In the morning, they shower and get dressed and start out the door.  You ask “Where are you going?  Do you have an appointment today?”  Their response is “No, I’m going to the mall.”  What do you do?  You know the best thing for the Warrior is to stay home (where there are less germs to interfere with her compromised immune system) and rest.   The worst thing you can do is tell them not to go.  “You should stay here and rest” is the last thing we want to hear.  We are tired of being sick and sick of being tired.  We want a day of “normal” even if we are completely bald, and look like something out of The Walking Dead.  So, unless there are specific instructions from the Doctor NOT to do something, grab your shoes and hit the mall with them.  They need a sense of normalcy now more than ever.  There comes a time where the Warrior will push themselves to the very edge of existence, just so they can feel like a part of the living world again. You have to allow them to do this, as difficult as it might be for you.  Remember, it's not about YOU and what you think is best, it's about supporting your Warrior and helping them live a life worth living.  

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OK Kittens this is about ½ of the speech that I did… I figured I’d give you some time to digest this part and I’ll post the other ½ in a couple of days.  As per my usual speaking engagements, I give some time for questions and answers…and this is not any exception.  If you have any questions, please just ask me; I am more than happy to answer them.  You can ask in my Facebook page,  here on my blog, or in person.  I’m an open book when it comes to my illnesses and my treatments.  I do that for the very fact that I want to help others understand the TI Warriors and how to help them live life to the fullest.  Even when it’s close to the end and you can smell the gravesite. 

I love you all, please be kind to each other; you never know when your last negative word to someone will be your last. 

What a Warrior Needs

Today’s dictionary: 

Warrior:  A person diagnosed with a Terminal Illness fighting to live and helping others to realize how precious life is. 

TI:  Terminal Illness

Support System:  family, friends, Doctors, Counselors, pets, therapy animals – anything and everything that helps the Warrior celebrate the good days and survive the bad ones.   

The Walk:  A general term used to discuss death.  Depending on the religious orientation of the Warrior it can mean “the walk to Heaven”,  “the walk to the Summerland”, “The walk Home”, “the walk across the Rainbow Bridge” (for my crazy pet people J), etc. 

Hello Dearest Reader

Have I told you lately how much I appreciate you?  Probably not, so let me start with that.  YOU are the reason I write, and keep writing.  It is YOU that help me look for things in everyday life that inspire me to become a better person, to help others, and to – in turn – help you.  What you do with the lessons I provide and the personal challenges I offer are completely up to you.  Whether or not you choose to share your experiences with me, or with others, is your choice.  I just hope in the end; you obtain what you are looking for. 

With that being said; I need to apologize to you in advance for this particular blog entry.  I’m breaking one of my own rules – never write (ok.. technically never publish) when I’m too tired, in too much pain,  or not in the right frame of mind for whatever reason.  However, sometimes it’s the only way to convey a message... so it’s with that broken rule I bring you today’s entry.  I might not even publish this, and if I do… it may not stay published for long.  Then again, you never know, maybe I’ll be brave enough to keep it up – only time will tell, I suppose.

It’s currently 11:30 am on Saturday morning, and in the past 4 or 5 days I’ve spent more time IN the hospital and doctors offices than I have out of them.  In fact, as we speak, I’m sitting in a hospital room, borrowing a laptop, to write this.  It just plain sucks, but that doesn’t change the reality of things.   Bitching doesn't change anything either, which is why I go to great lengths not to do it.  Although I am here as a patient (sometimes a “good” one… most of the times a pain in my Doctor’s ass), I try to take on another role as much as possible – counselor.  I do medical counseling for terminally ill patients (both the newly diagnosed and the long term Warriors) as well as their families and support system.  It’s just as important to counsel the support system as it is the patient, because without your support, we would be aimlessly floating around waiting for the end.  Though sometimes that’s what we do regardless of who we have around us. 

We Warriors fully appreciate the support systems we have (family, friends, animals, doctors, counselors, etc.) and we wouldn't be half as successful as we are without you.  However, I feel compelled to help the support system people be as supportive and helpful as they can be; especially when things start getting bad… or when the end of our lives near. 

It’s interesting, how we as human beings process things.   Almost all of us know (and if you read my blog on a regular basis – even if you haven’t met me in person – you KNOW) someone with a terminal illness.  I think most of the people that read my entries have someone close to them with a TI (that’s slang for Terminal Illness, kittens).  You've found your way to my page through knowing me, someone who knows me, a Doctor, a Warrior, or some other version of the support system.  Maybe you stumbled upon me during your rounds on the blog-sphere and you liked what you read … and keep coming back for more.  Either way, if you read my pages, then you know me… so you’re now in the company of the masses who are a TI support system. 

When a loved one is diagnosed with a TI; or when we meet someone with one; they very rarely “look and act” sick.  The wonder of modern medicine; the treatments and medications we take help us keep as active and “healthy” as possible.   There are, of course, exceptions to this rule as certain treatments take us closer to the edge of existence than others.  However, most of the time; it’s easy to “forget” that our loved ones are sick; especially terminally sick. 

So, we help our TI loved ones live as fully as we can and most of the time we ignore their illness.  Sometimes it’s at the Warrior’s request (“I just want to pretend that everything is normal today”).  Sometimes it’s a coping mechanism for ourselves (“If I act like she’s not sick, then it will be easier for me to help her”).  Sometimes we do it without even realizing… it doesn’t really matter what the reason is.  The fact of the matter is, most of the time we over-look the illness and help the Warrior feel as “normal” as possible.  While this works most of the time, sometimes the Warrior needs to accept, and in turn needs our support system to accept, the fact that we are NOT normal, and that we are sick. 

Warriors know, and in most cases, we have accepted the fact that our lives are shorter than everyone else’s.  And, again, in most cases, we have accepted our own mortality and impending end of life in this time and place.  I know I have; as have most of the people I’ve counseled.  Our support systems…not so much. 

This is where we get to the meat of things, kittens.  It’s those days that the Warrior doesn’t want to “pretend” that life is wonderful and that they are normal when we need you the most.  We need that person that can identify that we are not “OK” and is willing to sit down, let us break, and NOT break in return.  We are not looking for someone to badger it out of us, we need that certain someone that just knows, and sits patiently and waits for us to break.  Sometimes, no matter how strong we seem, we need a rock that’s a little bit stronger than us. 

The Warrior should not be counseling their support system; but I’ve seen it so many times that it’s become the normal.  If we break, and you break .. then we end up playing the role of the counselor “It’s OK .. don’t worry we’ll get through this.  I’ve gotten through worse” etc.  Here’s the cold hard truth for me: If I have had to counsel you through my issues once, you will NOT be my rock.  I don’t have the courage to break in front of someone that I’m afraid won’t be there to help me find my way back to myself.  It’s just the truth; and I’m sorry that it has to be that way – but it does. 

We also have limitations and boundaries that we don’t always explain well.  Maybe they are emotional limitations; sometimes we don’t want to tell you EVERY little detail of our illness and our treatments. Whether that’s because we don’t want to re-live it or the fact that we don’t want to share something so very personal (when cameras are going in places that are not meant for eyes to be… we don’t always want to discuss it).  If we say something like ‘same old thing’...that might be a hint that we don’t want to talk about it further.  If we don’t necessarily tell you all the details right away; it’s not because we don’t want YOU to know; it’s probably because we don’t necessarily want to discuss it.   

We also have physical limitations that we don’t want to discuss.  Some are obvious – radiation burns, hair loss, loss of limbs, etc.  Some are not so obvious.  One of mine is hugging/physical contact.  I’ll be the FIRST to admit I’m not a very touchy-feely person; I like physical contact from certain people all the time, but from most people very rarely.  However, it’s more than that – lately almost EVERY day I’m in a massive amount of physical pain (that’s what happens when you’re at war with your own body).  I’m not talking about being uncomfortable; I’m talking about downright pain.  The kind of pain that would send most people to the hospital or to a corner to curl up in the fetal position.  I’m on painkillers that don’t really help; and when it’s unbearable for me; I take Morphine – unfortunately it only takes the edge off.  Therefore, hugging can be a very painful thing for me.   You know what.. all of this is fluff on a rabbit’s ass.  The fact of the matter is simple… we have boundaries and they exist for a reason….and if you truly loved us we shouldn’t have to explain the reasons to you.   

Yea, this is getting a bit heavy, isn’t it?  Sorry about that – I warned you in the beginning :-p.   Interested in how this came about? Why this blog?  Why today?   Well it’s a culmination of my last couple of weeks, but moreover it’s because of the movie that is just now finishing on the TV I’m watching.  The Haunting in Connecticut.  It’s an interesting story about a teenage Warrior who accepts his own imminent death and risks his existence (both in his current life as well as his potential after-life) to save his family.  I won’t get into the intricacies of the movie... but one particular scene is what prompted me to write this.    Matt (the Warrior) is talking to his mother who is having a very difficult time with his new treatments and how they are making him feel and act.  He says ‘Mom, I just want you to know that if I …” and she cuts him off by saying “YOU WON’T” and walks away.  He finishes is statement, mostly to himself.  “if I die, it’s not your fault”.  THIS is pretty much what I’m talking about.  WE WARRIORS ARE GOING TO DIE.  Just like every other human being, pet, animal, plant, and bug on the planet.  Yes, our death seems closer than everyone else’s; but it doesn’t’ make it less true.    I’ve tried to have these conversations with people in my life…  “when I die”  “why can’t this be on MY terms”, etc... but most people just don’t want to have this conversation.  In fact I get cut off in the same manner as Matt did “You’re NOT going to die.  Don’t you dare, we need you here.  Your work here isn’t done yet.”  

Warriors need to have these conversation with our loved ones; but most of our loved ones just don’t want to discuss it.   When we are responded to with the above statements or similar ones, we are forced into shutting up out of guilt.  We don’t want to hurt the people we love, and we know our death will hurt them.  So, in trying to talk about it, we are hurting them.  Therefore, we don’t talk about it.  This, by the way, is a very difficult thing for a Warrior to deal with.   We already feel terrible for putting our support system through hell watching us be sick, act sick, look sick, not have enough energy to do things, etc.  But to know that our death is difficult for them is VERY hard on us.  When we don’t have anyone to talk to about the inevitable, we tend to pull away from everyone in our lives and just deal with things ourselves. 

As I said before, if I’ve gotten that “NO” response from you, I won’t bring it up again. That doesn’t mean that it’s not still on my mind, or that I still don’t need to talk about it; it just means that I’ve recognized that you’re not the person I can discuss it with.  Not that I don’t love you and not that I don’t appreciate what you do for me, it’s just a personal truth and those are very important to each of us. 

Hmm.. have I babbled on long enough?  I think so.  Have I gotten across my point?  I’m really not sure; but I hope so. 

For those of you that I've leaned on – thank you for being there for me; even when I know it was difficult for you.  For those of you that recognize that you might have done the “NO” thing to me, or that have recognized that I’ve counseled you through my illness … thank you for being you …and for sticking around even though I’m impossible to love at times and difficult to deal with. 

I love you .. each of you dearest Readers.  More than I tell you, more than you know.  

The Weekend of Learning

Hey there kittens!  It’s been too long, and for that I apologize.  I’ve been a bit busy with life in general and a wee-bit vacation that I just returned from.

“OOH vacation!  Where did you go?  What did you see?”  I can hear ya’all already.  Well, if you must know, I went to Point Marion, Pennsylvania and I saw exactly what I needed to see – myself.   I went with a wonderful friend and was able to share with her my passion for the town, the house I practically grew up in (my Grandmother’s house), and a totally different side of me.  The side of me that is calm, relaxed, and just flat out happy.  Not a side many get to see often; and it’s a side I haven’t seen myself in quite a while.

We had a lovely time, doing things that most people would not find very ‘vacation-like’.  We played games at the kitchen table, talked about everything from growing up to growing old (I feel so much older than I am most of the time), went to the mall, saw a movie.  We walked around the river and went to Friendship Hill (a National Historic Site).  Above everything else, we explored the small house where I spent so many of my childhood hours.  We were confronted with the past, the present and what I hope is the future for me.  Bootsie, my grandmother’s cat who crossed the Rainbow Bridge MANY years ago, made quite a few appearances; and I came out of the experience with 9 spider bites.  Apparently I am VERY tasty. 

I love this little town.  With a population of somewhere around 1,000 (though I think that might be generous) and a total footprint of just over 9 square miles, it’s nestled in the convergence of the Cheat and Monongahela rivers.   The town is quiet, and at just about any given day at any time you can absorb the quiet, laid-back attitude the town gives off. 

In the midst of the adventure I learned things about my Grandmother that I would have never imagined.  Things that make me smile and realize she was SO much more than just “grandma”.  I’ll keep the details to myself but man ...what enlightenment.   Moreover, I learned a many great things about myself …things I never imagined I’d learn. 

Radios and Televisions

I think we turned on the television once during our 4 day stay at the house; to watch a movie.  Other times, it was just the radio playing in the background.  However, often it was neither and I could just listen to the quiet that comes with being in Point Marion.   Birds, insects, occasionally a dog barking … and that’s just about it.  Once in a while you’d hear a car or truck jetting up the 119 hill; or a teenager’s radio – but nothing like you do when you’re in a big city.  I realized this weekend the reason I constantly have my television on at home – or my radio – is to drown out the other noises of where I live.  People arguing outside, slamming doors, thumping car radios, traffic, marching bands, fire trucks, and the list can go on and on.   I don’t want to hear other people living, so I turn on something to make noises that I prefer.  Strange, maybe – but so very true. 

Spiders and Their Homes

Spiders.  I. Do.  Not.  Like.  Them.   This is not a major revelation, but it was something that was quite obvious this past weekend.  Spiders just plain freak me out – I’m not necessarily afraid of them – and I don’t care if there are fake ones around or anything like that.  But I don’t like their creepy legs, and their quick movements.   Spider webs … yea, I don’t like them any more than the things that inhabit them.   I did come to a realization though… the thicker the leg of the spider, the more I dislike it.  There were several different types of Spiders trying to kill me this weekend—and the thinner the legs (regardless of the size of the spider) the less I minded them.  However, you get those beefy legs on a spider and it’s “bye” for me.  Just flat out creepy. 

Eat-In-Kitchen

I adore eat-in-kitchens.  90 percent of my down time this weekend was spent in the kitchen. Either cooking  (yes, I cook :-p), or sitting at the table playing solitaire, or Farkle.   There was something so relaxing and just perfect for me about being at the table in the kitchen.  I don’t have that opportunity right now, as my kitchen isn't big enough to ‘live’ in… I have a dining room table, but for some reason it is not the same. 

I remember way back in 1993; I had an apartment with my now ex-husband that had a slightly larger kitchen.  We had a small desk in there where I would pay bills and write grocery lists… and I remember sitting at that desk for hours, just being comfortable.   I suppose the fascination with it isn’t all that new, but the realization is. 

PS kittens...this is not an opportunity to remind me that I “belong” in the kitchen  J

Learning About the Past

I realized that I might not like history all that much, but I love learning about the past when it comes to my family.  I found myself helplessly fascinated going through things that belonged to my grandparents.  It’s amazing the things you can learn about someone even when t hey aren’t there to talk to.   From greeting cards (oh the cards) to letters, newspaper clippings to autographs of celebrities, even surprising books.  I learned so much about the people my grandparents were .. beyond the grandparent role.  I loved every second of it. 

Learning About the Present

I learned that even though so much has evolved and the world is a much more ‘connected’ place, small towns are still small towns.  People still smile and wave at you, the girl at the quick mart will still call you “honey” and when the one police officer in town would probably rather give you a hug than a ticket.  (Please don’t hug me).   I learned that I like this way of living, I like the way I’m utterly relaxed when I’m in that town, and I love the way I feel about life in general.   I move at a slower pace, because to drive faster seems almost morally wrong.  I walk slower because the scenery is amazing and the hills are a bit tough to handle at times.  Things are just so much more laid back… it’s not quite Island life – and almost better for some reason. 

Learning About the Future

If things work out the way I want them to, Point Marion could be my future.  I would love living there, in my grandmother’s house.  Being responsible for maintaining her and my PapPap’s legacy and their home.  I can take some of the burden off of my father who regularly goes there to ensure everything is alright with the house.  I can help out my family by paying the taxes and utilities, and in the process start saving more money for both myself and my daughter’s future.    I could finally have a place to call my own, and be proud of where it came from.

There are some obstacles to overcome before I can make this dream a reality.  I know that if it’s not meant to be it won’t happen, but that doesn’t mean I won’t do everything in my power to help it along.  I want this more than I’ve wanted something in a while, and fight for it I shall! 

So, that’s about it for now, lovely and devoted readers.  My weekend away was a weekend spent learning about myself and what I really want.    My personal challenge to you is this:  do some self-reflection and learn something about yourself that you never knew.  Don’t make it easy on  yourself, dig deep and find a revelation.  It’s in there somewhere, I’m sure of it.

I'm So Lucky

Even with all my illnesses, stresses in life, lack of relationships, etc., I consider myself incredibly lucky.  I have people in my life who care about me; family and friends that would do just about anything for me.  I have a team of Doctors that are on the bleeding edge of technology and I get to go along for the ride.

As I settle back into my favorite chair, with an excess of energy I haven't had in a while, I think back to the last couple of days and I'm gently reminded that I get the chance to have a significant impact on things from time to time.  I've just returned from a trip to the Mayo Clinic where I was asked to test out some new technology for kidney dialysis patients.  Overall, it was a wonderful trip full of compassionate nurses, Doctors, therapy cats (I love you so much Wacco), and the best chocolate milk I've had in years.  The surprise "airport hanger" lunch was an excellent wrap up I really must say.

As I arrived at the facility yesterday, I was reminded of how far I've come, and how far I've strayed from where I once was.  I'm blessed to have become more mature, more learned of medical procedures, and more patient as a patient.  However, as nurses and technicians continued to comment on the last formal talk I gave out West, I was reminded that I don't do nearly as much public speaking and inspiration as I used to.  There was a time when I was knee deep in treatments and illness, that I would stand in front of a group of people (sometimes a small group of 15, sometimes a huge group of over 2,000) and share my story on a regular basis.  I would give them a glimpse into my world and explain to them how I stay positive and how I try to help others. So much has happened to me since those speaking engagements, and I have grown so very much as a person, that I think the talks I give could be even more now than they were.

I am currently negotiating two speaking engagements at the Mayo clinic and am seriously considering starting to advertise myself as a keynote and inspirational speaker.  As I mentioned, I miss public speaking, and it's something I truly enjoy.  The concept of getting paid to share my story has never really crossed my mind, I would do my talks simply because I wanted to help others understand what patients go through, how to help them, and (sometimes more importantly) what NOT to do to "help".   However, as it was pointed out to me, I can be compensated for my knowledge, experiences, and time.  Why not?

Who knows, maybe if this picks up a little, I can get inspired to write the book that everyone keeps telling me I should write.  :)  

So, that's it for now kittens.  Nothing spectacular or overly inspiring at this time.  Just my thoughts.  I'm going to start cleaning now -- with some of this energy I have found!

I love you .. each and every one of you.  YOU keep me going, you help me realize that my thoughts and experiences can make a difference in lives, and YOU are the reason I write.

Much love
Trinity

Be at peace with yourself and you can be at peace with the world.  

The Realist

I’ve been thinking a lot lately about the way people view the world.  To me, there are three types of people:  optimists (that always see the UP side to any situation), pessimists (who, regardless of the situation, sees something VERY wrong with it), and realists (people who always see both sides of the coin and don’t complain about it – just accepts it as it is).  I’m a realist.. no two ways about it.  I have quite a few “bad” things going on in my life at any given time (health things, relationship – or lack of relationship – issues, financial stress, etc. etc).  People are continuously telling me how “upbeat” I am, now “strong” I am, or how “optimistic” I seem in face of such adversity. 

The truth of the matter is simple, I’m not an optimist; I’m a realist.  I accept the truths that are handed to me and make the best out of them.  For example, I’ve made a major decision recently regarding my health – the truth of the matter is; neither option was all that appealing.  However, the decision was mine to make and I had to make it – there was no getting out of it.  This decision has pretty much put me in the category of “kidney dialysis patient for life”.   I’ll admit, I’m not happy about the news, but I feel like it was the right decision.   This is a new reality for me, a fact of my existence.   It is NOT a reason for me to complain about the hand I’ve been dealt, bitch about how painful dialysis is, how it constantly makes.. blah blah blah.   No sense in doing that.  I’ll find the perks (cute technicians at the dialysis center!) where I can and make the most out of the situation.  I get to meet people that motivate and inspire me, I get the opportunity to inspire others, and at times I get the opportunity to counsel people who don’t have anyone else to talk to. 

This is what makes me a realist.  I realize the truths in my life, and while some of them can be changed (and those that I don’t like that can be changed get worked on regularly so I can improve my existence) and some cannot be changed.  I accept them and take each one as an opportunity to learn more about myself, inspire others, and hopefully (in some cases) help make the same journey for other people less painful. 

It’s not to say that the “realist” doesn’t have their moments of weakness.  Hell, we all do, right?  I have had more than my fair share recently; but the good thing about being a realist is easy to recognize.  Once you have enough “practice” at being a realist; life’s truths don’t hurt as much.  The main reason is doesn’t hurt as much is because when you find a truth in life, it doesn’t take the realist by surprise.  We are basically “expecting it”.   It’s not a negative way of looking at things, or living, it’s just these easy to identify truths are based on personal experience and patterns in your life.   We are most hurt by the truths that take us by surprise .. so the less the surprise, the less it hurts.   I have no idea if this concept makes any sense to you, lovely reader, but I hope it does; even a little bit. 

So, I think that’s about it for today – I could go on but I’m not sure elaborating will help either one of us. 

Much love to you … you’re the ones that make me smile  <3

Stop Jumping, You'll Wear Yourself Out

It’s strange, my beloved reader, how my blog life works.  I have this list of things I need and want to write about.  Topics that range from The Sacrifice of Happiness, to Optimistic Branches on a Pessimistic Tree, even The Positive Influence in a Negative World (look for all of these …eventually).   However, it seems that almost every day something new is added to the mix, and it’s my duty as a writer to prioritize what to write about.  Then come my lunch hour I get the honor of writing for you. 

As a dear friend pointed out to me today, it seems there’s an uptrend of behavior that is, at the least, disturbing.  Lately (or mayhap I have only been noticing it lately) people have been jumping to conclusions or their own “personal truths” much faster than usual.  With all this jumping, you’d think we, as a society, would be in better shape!  You see, when someone hears something (a rumor, half a story of something that has happened, or even an outright lie) they immediately draw their own conclusions, and get PISSED OFF at whatever it is.  They are ready for a fight, they want to punch someone, kick someone’s ass, protest the government, whatever the case may be. 

While a part of me admires the fact that people are quick to defend their friends and what they may perceive as a ‘wronging’, it’s disheartening to know that people don’t care about the truth when doing so.  Moreover, it saddens me to witness the fact that they will immediately jump to violence to solve the situation.  This, kittens, is how people end up dying; when we start rationalizing the concept that violence is an acceptable answer to a problem.   

Let me give you an example of what I’m talking about.  Someone posts a new status on Facebook (let’s be honest, everything is on Ye Ol’ BookFace these days):

Poster: “OMG.. I just got chewed out by my boss at work, I’m crying and I’m so pissed off.” 

This, friends, is a valid Facebook post, and one we’ve all seen from time to time.  Everyone has had a boss that we don’t necessarily get along with.  And we love to post on Facebook in the heat of the moment; it’s therapeutic.  However, it’s the comments that follow that make my point. 

Friend A:  “What an asshole, I hope he finds himself in a dark alley tonight and gets the shit kicked out of him”

Friend B:  “Yea, tell me what alley – I’ll bring a crowbar with me and show him what it’s like to be hurt”

Friend C:  “ Seriously. What a jerk; hope he crosses the street in front of me, my “breaks may fail.”” 

Seriously people… why the violence?  Why not a supporting and understanding response?  Let’s continue, shall we?  

Friend D:  Holy Shit, I’m so sorry! What happened?  PS… are you free for ice cream therapy tonight after work?

Poster:  @Friend D:  Ice Cream therapy would be great; honestly, it was my fault and I deserved to be yelled at, I really screwed up a financial report that the Manager received and he was furious.  I’m so pissed off at myself for letting it happen, I can’t stop crying.”

AHHHH…there it is…the truth and most of the full story.   Notice that the only person the Poster responded to was the one that offered support and NOT violence (three and a half brownie points for the Poster for not giving into the violence).   Friends A, B, and C immediately jumped to the conclusion that the Boss was being unreasonable and assumed he should be hurt because of it.  Nowhere in the post did it say the Boss yelled, was verbally abusive, or unjustified in his discipline of his employee.  People just assumed it.   It wasn’t the case.  As you see, the Poster later detailed the situation a little better (probably after they calmed down a bit) and it turns out even the Poster themselves think the discipline was in order. 

This whole concept takes me back to something I learned in a workshop called The Energy Project.  It’s an excellent program, I highly suggest it if you ever get the chance to experience it.  The particular activity I’m referring to is “Fact versus Story”.  We LOVE to assume we know the whole story behind something when only a fact is provided to us. 

“Wow… some a&&h*le just cut me off in traffic, good to know he thinks he’s the only one who matters.  I should have forced him into the wall”   What’s the fact in this statement?  The person who wrote the statement was cut off in traffic.   The rest is a story made up to go behind the fact.  The other driver may not be an asshole, and I doubt he thinks he’s the only one that matters.  There are a variety of reasons he may have cut the person off:  maybe the person was in his blindspot, maybe he’s rushing to the hospital because his wife was in an accident and he’s not thinking straight, maybe he’s having a health issue.  Maybe the guy is a downright jerk and just cut someone off.  The point is, NOBODY but that driver knows the story behind the fact, so jumping to a conclusion doesn’t do anyone any good.  And resorting to violence (forcing what could be a multiple car accident) is NEVER the right response. 

So, kittens, here’s the bottom line:   rumors, half truths, down-right lies, and the like are NOT something to act negatively upon.  We are forever hearing something that we know may not be the entire story – so instead of immediately jumping to our own conclusion – why not try to find out more about the situation?  If that’s not possible, then offer support and help to in a positive and enlightened manner; it will be much more beneficial to everyone involved.   

Today’s personal challenge:  work on recognizing the difference between FACT and STORY.  Take a step back before you react to something, and react with compassion and understanding instead of anger and violence; you may be surprised the responses you get. 

Much Love

Trinity

Be at peace with yourself and you’ll be at peace with the world

The Single Choice

The Single Choice

I met the most spectacular woman today, named Lula.   She was born in 1910 and is currently a dialysis patient with a heart of gold, the soul of a Warrior, and an outlook on life and love that I admire greatly.  We had an excellent chat about life in general while we were both being prepped for treatment today.  She’s lived a long life, full of family, friends and a husband of 83 years.  6 kids, 13 grandkids, 8 great-grand children, and 2 great-great grandbabies.   She laughs every day, cries sometimes, and always remembers to say THANK YOU for the life she has had. 

We didn’t chat very long, shortly after treatment started, her beloved husband walked in.  He carried with him a single plastic rose (because they last forever – just like their love) and eyes only for her.  The moment he walked into the treatment room she light up like a beacon in the dark.  Her smile was genuine as was the love and devotion in her eyes.  He walked gingerly towards her, handed her the flower and kissed her gently.  He then proceeded to sit down next to her, and while she held that little plastic rose, he read the daily newspaper to her.  She quickly nodded off to sleep, and he continued to read; realizing that it was his voice that helped her feel safe enough to nap during a time when you feel so vulnerable. 

As I was quietly observing and listening to my music he looked up at me and smiled, I instantly smiled back and he said to me “I read to her because her eyes have gone bad.  And because she tells me she likes the sound of my voice.”   I just nodded and went back to my music and book; giving them as much privacy as you can get in a room full of patients and doctors. 

After a while, I realized Mr. George (Lula’s husband) was sitting next to me.  I smiled at him and he simply said “I hate seeing anyone here alone.”  I smiled and thanked him for his company.  His compassion was nearly overwhelming and all he was doing was sitting there as his lovely wife snoozed nearby.   He softly asked me “do you have a Hand?” I was very confused suddenly.  I must have looked it because he immediately continued.  “You know a hand to hold when it’s your time to pass on?”  I just shook my head and tried to look less stunned than I felt.  

“Everyone should have that Hand; and it should be a hand that is not family and much more than friend.  Because as alone of a journey as death is, having someone there that loves you like only a mate can really makes a difference. Think about it, and give yourself that chance.” 

So, I’ve been thinking about it.   A lot.   The choices that I have made in my life to this point have put my relationship status as “single”.   I have made some choices to better myself, to better the life of my daughter, and to help us be happier than we’ve ever been.  I’ve made choices that are in my best interest from an emotional perspective, from a legal perspective, and from the perspective that being with the wrong person is worse than being alone.  The choices I have made have left me as a single woman, and although I don’t hate being single, there are times when I wonder if I prefer it to being with someone.  I enjoy spending time with someone I care deeply form  I enjoy the nurturing, caring for, supporting, and loving someone that means more to me than “just a friend”. 

However, I find myself in a place that many “sickies” find themselves in.  Most anyone that has been through a traumatic injury, a serious (or in my case terminal) illness, intense medical treatments, etc. can tell you one truth: it is difficult to keep a mate when something like this comes up.  It is even more difficult to FIND one when you’re in the throes of such medical drama.    I won’t get into all of the over emotional things that run through my mind when I think about the mate situation.  However, I will share this with you, my beloved reader:   I’d love to have that Hand .. and someone to “Walk me Home”. 

So, where does this leave us?  Inspired to open my heart to more possibilities than I’m comfortable with.  Wondering if I should try to allow myself to be loved again (that hasn’t go so well in my past).  And hoping that YOU have that Hand... because it’s a comfort to know someone cares that much. 

Today’s personal challenge:  Inspire someone else by sharing your story.  You never know which heart strings you will tug, and the difference it can make on someone.