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
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