Tuesday, September 25, 2012

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.  

Thursday, September 6, 2012

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