Grab Life By the Horns

Hey Kittens!  Yesterday, I stared at this page for about 20 minutes and had a whole lot to say, and no clue how to say it.  Today, I started out pretty much the same, though I finally received the inspiration I was looking for.

As I deal with yet another round of medical "news" I've been getting a whole lot of friends that are trying to help.  I realize that people mean the best, and only want me to be "ok" but the fact of the matter is; there is no OK for me.  And sometimes when they insist on "helping" it only makes things worse.  You see, when we find out that someone we love or care for is sick, we do what we think is right for them.  Most of the time, that includes "you need to start resting more"  "Stop working the haunt, it's too much for your body"  "You need to keep in mind that the harder you work, the less energy you have to heal yourself."  

Well, all of that is fine, if you're willing to lay down and start dying.  I'm not quite there yet.   Yes, there are days when I wonder why I insist on fighting what's turning out to be a losing battle, but most days I realize I'm here for purpose.  I'm here to Inspire others to live a life worth living, to show love and respect to others, and above all to LIVE a life.  Not just survive it.

As I was messaging a friend this morning, I received the following in my chat box "don't spend so much time trying to stay alive that you never get to live".   It's perfect for my situation, and I couldn't thank him enough for saying it to me.  He was sure to tell me that it wasn't original to him, and that he remembers seeing it somewhere before.  However, that's not the point.  The fact of the matter is, he remembered it in JUST the right time to remind me that no matter what's going on... living life is more than just staying alive.

During this most recent round of medical drama, I've gotten a whole lot of people telling me what I should and shouldn't be doing.  "You're not still acting at Bloodview are you?"  "You should be working from home"  "You need to take time off work."  "Do NOT plan on making dinner, I'll bring something over".  And on and on the list goes.  They are well intended and amazing friends of mine, but I don't think they realize that acting at Bloodview, working (even going into the office), and trying to keep my own house clean and myself fed are not a part of surviving.  They are a part of living.  Living and surviving are not the the same thing.

In my opinion, as harsh as it can be, surviving means staying alive as long as you can to ensure the people in your life have enough time to cope with what is imminent.  Living, on the other hand, means doing the things you enjoy, pushing yourself to the limits, and getting the most out of every moment you have.  When you're like me and you spend 40 hours a week at work (ok, it's usually closer to 45), and upwards of 20 hours a week at the hospital... you want whatever time you have left in the week to be worth living.  The haunt does that for me .. as does making meals (especially for others), and - gasp - even cleaning my house.

Yes, I push myself to the very limits.  Sometimes that causes a rift between myself and my Doctors, but that's our issue to deal with.  There are times that pushing myself makes me need a day or two of bedrest, or more time at the Doctors.  You know what?  It's worth it.  Because without it, all I am is someone laying around waiting for that final sleep.  Not acceptable for me.

I live to LIVE, not to survive.  Some days may be better than others, and sometimes I break down in the dark and quiet and feel sorry for myself.  Sometimes I wish someone would lie to me and tell me that it's all going to be OK.  Somedays I just want someone to lean on that will be strong enough to understand and soft enough to cry with me.  Someone that I don't have to turn around and counsel in return.   However, most days I take life by the horns and get the very most out of it.

Oh Fates, how you amuse me.  As I'm writing this, a song pops up on my playlist.  Tim McGraw is currently singing "Live Like You Were Dying".  If you're not familiar with this song it's about a gentleman who is diagnosed with cancer in his early 40s.  His friend (the singer of the song) asks what he does when he finds out that this might be the end.  His response is simple: skydiving, climbing the Rockies  bull riding, and a list of other things he's always wanted to do.  He truly lives like he's dying.

Do you?  Do you live your life like this could be your last year, your last month, your last day?  Do you show the people in your life what they mean to you (notice I said show, not tell. ACTIONS are what matter, Kittens)?  Do you take life by the horns and ride it for the whole 8 seconds?  Do you stop for a moment, breathe, and relax knowing that you have love in your life, laughter in your heart, and light in your soul?   If not, then maybe it's time for you to stop, step back, and re-evaluate how you are living your life.

Remember, it's not about the number of moments we breath, but by how many moments take our breath away.

Much love Kittens.

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

A Dark State

Hey there, Kittens! 

As usual, it's been way too long between posts; and I'll be honest, I've been avoiding writing.  It's a selfish thing, in a way; as I hate writing when I'm not in the proper state of mind.   I validate it by saying it's not fair to my readers to listen to me lamenting about my lot in life.  However, as I woke up this morning at 2am and couldn't fall back asleep - my mind reminded me that I'm NOT the only one on the planet going through the things I go through.  I'm also not the only one in a dark and desperate state of mind - although the paths others have been on may be different; we are in the same thick of trees.  

I showered -- well, technically I just stood under the water pretending it was rain and trying to clear my head -- and when I got out and looked in the mirror I saw quite a few things.  The scars of the past 15 years at the hands of my amazing team of Doctors.  The bruises and bandages from 8 hours at the hospital yesterday.  The bags under my eyes from too many nights of not sleeping like I should.  The red, swollen eyes and nose of someone who spends too many hours crying onto her pillow - or her cat (poor Fatboy).  A body that has been inflated due to a destroyed metabolism and shrunk back down due dietary restrictions.  A sternum that houses a heart that's bruised and broken in both the literal and figurative terms.  And ONE specific tattoo.  This tattoo, although small and insignificant to most, is probably the one that gets me through most days.  It's located on my right collar bone and is one simple word, in lovely script:  Inspire.  

I realized that I go through these things to help others through them.  That, even in the darkest times, there is a reason to get dressed, leave the house and continue on.  And that reason is pretty simple: it's to remind people that if we choose, we can OVERCOME our obstacles.  It reminds me to teach others that even when things are not perfect in our lives, we can CHOOSE not to let them be the driving factor of our lives.  It helps me live in a fashion that proves that when the going gets tough, the TOUGH choose to live a day at a time, and NOT focus all our effort on how hard things are.  It's a simple reminder, to myself, that I have a responsibility to others to prove that a person is MORE than their diagnosis and that being sick is NOT a lifestyle, it's just a part of our individual reality.  

Don't get me wrong, there are days (and sometimes weeks) when doing these things is harder than others.  I'm running into that as we speak, as another round of Medical BS is tossed my way.  I have a "counselor" that I go to on a regular basis, but - honestly - she doesn't help me all that much.  She listens and says the right things, but I know she's never been through what I have, so she doesn't really understand.  In the past, I've tried talking to friends about what's going on ..  but in one aspect or the other, it usually backfires.  Either they freak out about a specific test, diagnosis, the fact that there are needles or blood involved, or some other reason - and I end up helping them calm down and tell them "it's all going to be OK."  Other times, I tell them, and they either start making jokes or don't take things seriously - and it tells me that this is not the right person to tell these things to.  And, of course, there are the friends that when I start talking about things, they start in about their own situations, and I end up being the counselor versus the one being helped.  There is ONE exception to the rule, but being the person that I am; I refuse to be a burden so I don't talk to this person about things nearly as much as I'd like (or I should.. depending on how you want to look at things).   I'm confident that said person wouldn't think twice about helping regardless of how many times I called, texted, messaged or cried on their shoulder.  However, there is more to life than crisis, and I don't want this person to see me constantly in "crisis" mode...there are other aspects to me.  No matter how many times I lean on this person, they are ALWAYS there ... and it seems saying thank you is never quite enough.  (&*#$*(Q@#$& it's just frustrating, I suppose. 

Well, that was a bit off topic, but sometimes you need to know where I am to understand the messages I send.  As I said earlier, I've found myself in this terribly dark place in my head...a place that not only makes me very sad, but scares the crap out of me.  I'm alone in my little dark place, but I know I'm not the only one in this place.  Many of us have been there at one point or another -- and I've found myself crawling out occasionally only to slide back in.   I also know, somewhere deep inside me, that I won't be here forever...that I'll find my way out and not wallow  here.  I will persevere, I will thrive, and I WILL make a difference in lives.  

Here is the long and short of this blog -- if there is one.  It seems to be a bit scattered, but I'm posting it anyways.  WE ARE NEVER ALONE.  Even in the darkest hour, in the middle of crisis, in the midst of chaos and desolation, we are not alone.  There is someone that you can reach out to, that will give you their hand, their heart, their logic, their understanding.  They will pull you through, and help you, once again, find your inner light.  YOU are not alone, you have me - and many other people that love you and will help you though anything.  All you really  have to do is reach out and ask.  I'm working on that part -- I personally suck at it.  Maybe together we can figure it all out!  

Much love kittens.  Remember to live your life with an open heart, and open mind, and open eyes.  See the things around you, make a difference, show love and compassion.  Everyone deserves happiness, even YOU.  So accept it when it's given, multiply it in your heart, and give it out to others. 

Live and peace with yourself and you will be at peace with the world.  

Key Note Speech - Part II

Hi Kittens, I realize it’s been a long time coming, but sometimes my boring, medical filled life gets in the way of my writing.   Never fret, though I am here now; delivering what I promised I would: they second part of my keynote speech.

As you recall we left off with:

They need a sense of normalcy now more than ever.  There comes a time where the Warrior will push herself to the very edge of existence, just so she can feel like a part of the living world again.   You have to allow her to do this, as difficult as it may be for you.  Remember, it’s not about YOU and what you think is best, it’s about supporting your Warrior and helping her live a life worth living.

It seems anytime I take on a new client from a “first line” support perspective they ask the same thing:  “What are the Dos and Don’ts of being the right kind of support for a Warrior?”  Of course, we are all different and there is no black and white answer to this particular question.  I have, however, noticed though my personal experiences and my talks with other Warriors that there are some general do and do nots that people can follow to make it easier on everyone involved.  Like I said, each Warrior and each support person is different, so do not take this as the “end all” of what to say and not say – or do and not do.  Talking to your Warrior about how she feels regarding a particular topic or how she feels about a specific activity is the best way to learn how to support her. 

I’m going to start with my top three things NOT to say; and what you could possibly say in their place.  These are the things that when I hear them, I immediately cringe inside.   I usually don’t correct someone when they say it, because I know the phrases are used in a positive manner with no ill-will meant.  The only exception to that are the people closest to me, or whom I spend a lot of time with.  I coach them on how things make me feel, in hopes that they will spread that knowledge to others.  However, from a Warrior’s perspective, we see these phrases differently after a while.   Especially when we start to hear the same things over and over – whether they are from the same person, or from a multitude of people. 

Please do not say “I know how you feel”.  You don’t.  I promise you don’t.  Even if you have the EXACT same diagnosis as someone, with the same symptoms and the same treatments – everybody’s body is different.  Everyone reacts to treatments and medications differently, and everybody has a different tolerance for pain.  You don’t know how she feels – so don’t tell her you do.  I guarantee you don’t and it’s probably the ONE thing I hear from almost every Warrior that gets under their skin.  We realize that you mean well, and you’re trying to explain to us that you know what it’s like not to feel well, but this phrase is poison to us.  It can feel patronizing, degrading, or like you’re trying to tell us that our illness is the same as your allergy, broken leg, or flu symptoms.  If a Warrior is explaining how she feels to you, instead of responding with “I know how you feel” ask her more details about how she feels.  She obviously wants to discuss it, so ask her how much it hurts (compared to something you know your pain level for – say a broken bone).  Ask her how bad the headaches are, how much the radiation burns hurt, or something similar.  She trusts you enough to share her very personal experience with you; ask the questions that will help you better understand what she is going through. 

Try to avoid using the phrase “I hope you feel better.”   For a TI Warrior, “getting better” isn’t a realistic goal.  This one is really personal to me, as I hear the phrase all the time, and it’s my least favorite phrase on the planet.   I know it’s meant well; because as a loved one, you don’t want to see your Warrior in pain, sick, or otherwise not herself.  However, telling a Terminally Ill patient you hope she feels better is, to me, like telling an amputee you hope their leg grows back.  It’s not going to happen; just like I’m not going to suddenly just “get better”.   I realize you don’t mean it the same way; you mean that you hope tomorrow I’m in less pain, am less nauseous, or something similar.  It’s a sticky subject for me, and many other Warriors.  Instead of saying “I hope you feel better”, which realistically is what is said when we can’t find better words; try saying “What would help you feel better?”  A cold washcloth, a glass of ginger ale, a blanket, or even a movie might help your Warrior feel better or take her mind off what’s happening.  Sometimes you will get the standard “Nothing” answer, in which case you can offer some suggestions, or just sit with her and keep her company. 

Please, whatever you do, do NOT tell your Warrior “I wish I could take it from you.”  Or “I would take it from you if I could.”  That is the LAST thing we want; we know what it feels like to go through the things we are going through.  And we understand that you’re trying to help and you just want us to feel better, but most of us wouldn’t wish this on our biggest enemy, we certainly don’t want YOU to experience it.  Imagine the guilt you feel over our being sick, it would multiply to no end if we were suddenly well and YOU were going through this.  Instead of using “I wish I could take it from you” try offering your Warrior your full support.  “If you ever need something, just ask.  No matter how big or how small, I’ll do my best to help you.”  THIS is what your Warrior needs; more than anything else. Sometimes it’s someone to take the dog for a few days, sometimes it’s someone to talk to, sometimes we just need someone to keep us company so we don’t feel so alone.  We would much rather lean on you for support than watch you suffer alongside us. 

Of course there are things you should avoid doing as well, as they can be just as detrimental.  Keep in mind that your Warrior has a whole lot going on, and the last thing they want to do is hurt your feelings; especially when they know you are just trying to help.  So they most likely won’t tell you if something you’ve said or done is bothering you; which is why I’m giving you these pointers.  After a while, she might start speaking up – of course you could always start the conversation with her as well.   However, the worst thing you can do is force her to talk about something.  Warriors don’t always want to discuss the personal details.  If she brushes off a particular question or simply says ‘I don’t want to talk about it’ don’t push her.  She’s already feeling overwhelmed with things and constantly talking to Medical professionals about what’s going on; sometimes she might not want to talk about it to anyone else.  If this is the case, change the subject.  Talk about movies, or music, or books or whatever your Warrior is interested in.  Or, in some cases, just sit in silence, sometimes we all need quiet time to reflect on things. 

Do NOT compare your illness or injuries to hers.  This is very similar to not telling her “I know how you feel.”  If she has radiation burns on her neck, she doesn’t want to hear about how last summer you had sunburn so bad it blistered and peeled.  Likely, she already knew that about you.  Moreover, take it from me – a radiation burn does NOT feel like sunburn.  Or a burn from a pizza oven.  Or even a chemical burn – all of which I’ve experienced.  Radiation burns hurt on a completely different level and there’s nothing to compare it to.   Same goes for the nausea that accompanies chemotherapy – it’s not anything like morning sickness or the stomach flu.  Remember, you’re supporting your Warrior in their battle, not trying to play “who has it worse.”  Instead of comparing, take a page from my previous chapter – ask what could make things better and offer suggestions.  Try to understand what she is going through by gathering the information she’s willing to provide.  When in doubt, just listen to her. 

Warriors get grumpy; it’s just a fact of life.   Whether we are just tired of being sick and tired, we are in pain, we can’t keep food down, or we just plain hate going to the doctor’s office; we’re going to get pissy at times.   There are times that we are going to snap at you, tell you to just “leave me alone” or something similar.  Try not to be offended, the last thing we are really looking for is a fight.  We’re tired, drugged up, in pain, sick and have a hundred thousand things on our mind.  Bear with us as we try to sort things through.  Ask if we want to talk about it.  Help when you can.  Most of all be open minded.  There are times when we want to joke about our own mortality and make awful statements about our own funeral.  Don’t be offended, it’s a natural response when you’re already holding hands with the Escorts to the otherworld.  Trust me, you’re going to get frustrated, you’re losing sleep, worrying, and are trying your best; we know that.  When you find yourself getting frustrated, that’s a clue to take a break.   We have a network of support for a reason, and as much as we appreciate you being our rock, even YOU need a break from us sometimes.  Don’t be afraid to be open minded enough to recognize it and take it when you need to. 

I realize that I’ve just dumped a whole lot of information on you right in the middle of your storm of information and research.   You are new to this role, keep in mind, so is your Warrior.  So if you work together at it, you’ll be able to help each other through more than you realize.  Remember that there really is no set right or wrong about what you’re going through or what your Warrior is going to deal with.  It’s going to be a rough road.  It’s going to suck sometimes.  You’ll cry a lot, you’ll both be angry, you’ll eventually laugh.  There will be an end to it all, probably sooner than either of you are ready for.  Take each day for what it is – a gift of time with each other.  A precious commodity that can’t be traded for anything else.  You will go through days, weeks and months of knowing nothing but illness and the pain and despair it can bring.  You will, if you’re lucky, find months and years of the Illness being just something in the background; something to keep an eye on.   You will experience a roller coaster of emotions that you will have to deal with; whether you want to or not.   

If you don’t take anything else away from this take these words and hold them close to your heart.  Be strong, but let others hold you when you need it.  Smile when you feel like you can’t chase the tears away.  Show compassion.  Understand.  Be brave.  Waste as little time as possible being angry. Show courage in everything you do.  Say I love you – they are the most powerful words we can use.  And when you say it -  don’t say it in passing.  Stop.  Look at your loved ones in the eye, find their heart and tell them.   Show love to everyone in your actions and words.  Refuse hate.  Live in a positive light.  Be kind to each other.  And above all else -  Inspire.   

So yea, that’s about it, kittens.  There was a small question and answer session though it’s really nothing to write home about.  Mostly just clarifying questions on what I’ve discussed and questions about my schedule and if it has openings for further talks or if I’m taking new clients for counseling right now. 

I hope you’ve learned something through this transcript, even if it was something small.  I love my speaking engagements, although I don’t do them as often as I used to. Yes, I am available for hire for keynote speaking, general lectures, even corporate retreats and team building exercises.   I also do individual, couple, and group counseling on a variety of things, not just medically related.  I speak on topics such as tolerance and acceptance, keeping a positive and influential lifestyle, bullying, surviving phobias, and a whole lot of other things both serious and not-so-serious.  I can be found on Facebook at https://www.facebook.com/aprilmae.davis or emailed at damemora.lot@gmail.com if you’re interested in open dates or looking for a quote. 

Alright, enough shameless self promotion. 

Until next time, kittens: please remember to be kind to one another, life is too short and our hearts are too fragile to be anything else. 

Much love <3

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.  

----

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.