Alison/Tink; Well
hello there our beautiful Blogger Arme (N.B. new readers, we call our followers oue Blogger Arme as you are an army of M.E. related people)
We hope
that you are all as comfortable as possible.
As many
reading this will know all too well, M.E. can quite literally be excruciating.
It takes over all of your life and encompasses everything.
But what
then when you have other 'issues' to deal with on top of life with M.E.?
How do
you cope?
This is
what we will attempt to discuss in this blog discussion, and would love to hear
from you al about your experiences too.
We will
try to cover a few of the possible issues you may be faced with by discussing
some we personally have experienced ourselves.
Personally,
I have had a hectic, surreal life.
I often
wonder about the people in this world who feel their lives are so boring and
wish for just something to happen in their life.
I
currently live in my little bedroom, alone and quiet. Yet the life around me
still continues to whirl in often terribly hard circumstances.
And my
previous life as I may call it, when I was out in the world, was often equally
crazy.
What are
your circumstances like Jodi??
Jodi/Hbird;
At the moment I feel like if I could just get to the point where my M.E. was in
the moderate category (or better) and I could live independently, I would have
just about nothing to complain about in my own personal life. I feel so lucky
about every aspect of my life except for having M.E. I feel lucky to live in
Australia, and to have the wonderful family and amazing friends I have, some of
the abilities I have, and all the rest of it.
If I
were suddenly to recover from M.E. and if there were magically no more need for
M.E. activism though, I could think of so many issues that I would like to get
involved in campaigning about. Gender equality, discrimination based on
sexuality or disability, making all sorts of services more disabled-person
friendly, the right to choose non-GMO foods and for society to be more educated
about the toll eating processed food takes and the many myths we are told about
food that are just based on vested interest groups benefitting, the vital role
of nutrition in healing disease, the difference between blindly drugging symptoms
and actual healing/prevention of diseases, and so on. So many things!
In so
many areas money and political interests have been allowed to speak louder than
real science and the concept of equality. We need lots more real people power
and people willing to look into issues more deeply and accurately than our
sold-out-long-ago media supports. Knowledge really is power. Knowledge is everything.
Knowledge and compassion for others.
So much
of what passes for unbiased information now is just marketing. The bigger issue
is that so many people aren’t aware of this!
Alison/Tink;
Right, which is what a lot of politicians do too these days I feel. There's a
film I love. 'Bobby’, by Emilio Estevez. He tells the fictional stories of
people in the hotel on the day American politician Robert Kennedy was
assassinated. Their stories show the hope people had through the person he was.
He believed in equality for all. Now why., in this day and age., aren't there
politicians like him. Who believe in every person, and ‘the-every-person’., who
fight for every person. Not just the fights that bring popularity or money.
Jodi: We
really do seem to not be making the improvements in these areas that we could
be. Following politics these days is utterly depressing isn’t it? Popularity
and money and power seem to be all it is about – a bit like ‘ME/CFS’ activism!
Nothing much if anything is ever achieved but so much work is put into making
it LOOK LIKE things are happening. Appearance is everything!
‘CFS’ or
‘ME/CFS’ advocacy that just slaps the name ‘M.E.’ on itself is treated as if it
were in fact real M.E. advocacy. The mind boggles.
If it
looks good it gets support. Getting the facts right and actually doing good
don’t matter it seems. It is so superficial.
The idea
that a society should be judged by how it treats those who are vulnerable and
powerless is something that I strongly agree with. A ‘survival of the fittest’
type mentality where all we care about are our own interests is not good for
society or any of us.
Some
media outlets seem to be pushing this agenda so hard though. Trying to make
people suspicious or hateful of anyone needing welfare, or of those seeking asylum
from unbearable situations in their home countries, or promoting the idea that
overweight people are morally deficient in some way. The hatred and ridicule
for anyone in the public eye that is the slightest bit imperfect looking is also
really unhealthy.
When
better-than-average people that are celebrities are compared to horses or said
to be ugly because they have put on about the weight of an orange, how are
normal people meant to feel about themselves?
Alison/Tink;
True that! People should not be measured by how they look, they are their
hearts. And a big part of that is how much they care about others, regardless
of looks, gender, sexual orientation, class, religion, regardless of illness or
lack thereof. We should all realise that we are all in this life together, and
stand with one another.
Jodi/Hbird;
That is exactly it.
I think
it is really important not just to fight for the minority groups you are in or
know someone in, but to be at least open to not making things worse for any of
these other groups as well.
If you
are overweight and experience judgment and discrimination because of it, don’t
make racist jokes (or be racist) or be homophobic, for example. Treat others as
you would like to be treated I guess. Try to be less judgmental about
superficial differences and continually try and imagine yourself in the other person’s
shoes.
If all
we ever care about and advocate for is the minority group we are in, I think we
sort of miss the point and the bigger picture. The goal of just caring about
fair treatment and equality for all of us, which would encompass all these
minority groups and all of us.
Alison/Tink;
I was forwarded something by Ellen Degeneres once that pretty much says it all
on this front, she told how it took white people fighting along with black
people for the civil rights movement to happen. Now it's going to take the same
thing for the rights of LGBT people. We need everyone fighting together for the
right thing. Personally, I couldn't agree more on that concept. And not just for LGBT equality, but for all groups in society.
Jodi/Hbird;
Yes I agree!
This is
really hard to write without sounding lecturey...and I hate the idea of that.
I’ve probably not at all succeeded. It is a hard topic to discuss, but an
important one.
Alison/Tink;
Ha! We say this in our private emails after writing every blog. You say you
feel you 'lecture', which you do not, you write clearly and compassionately,
and I say I feel I fail at saying what I mean to say and fail at expressing the
extent I care.
Thanks
for sharing your views sweetie. It can be a scary thing to do!
Jodi/Hbird;
Thanks Tink...it was a bit scary, I feel so out of my depth discussing wider
politics but I am also so glad you brought this topic up. I know you have more
to say on this topic too.
Alison/Tink;
You may not have had such issues to then show empathy Jodi, but you for sure show
compassion!
This is probably
the only blog so far that I actually do have more experience on than you, and I
may just hold on to that as I fear it won’t happen for a while again!!
So, to one
particular ‘Issue’.
I live
in the UK. One of the foremost countries in the world. Yet I am not essentially
proud of being a Brit. Here, amongst wealth and supposed freedom, is poverty,
homophobia, racism, sexual inequality, bullying, and much more besides. Sure,
we have made strides forward, and these are important ones and should not be
ignored. But in my view these are nowhere at all lengthy enough, as people are
still hurt, judged, even killed because of their so called 'differences'.
I am
Bi-Sexual. Yet even living here I have been confronted with judgement
I feel
as if I am ugly inside and out, however untrue this may be, for these insecurities
and multiple other reasons, I was bullied at school.
I have
experienced brutal grief.
I am
seriously ill and predominantly bed ridden. I am thus judged and treated
differently.
If all
reading this, created a joint list, the list would be immense.
Why????
,We are all equal. ,We are all people, We are all human, We all feel. Alone,
scared, hurt, judged.
Jodi: I
am so sorry you have been judged because of your sexuality Tink, I can’t even
imagine how confronting and difficult to deal with that must be. It is so
unfair to be judged on something that is such an unchangeable part of you and
that you were born with.
It seems
like in our countries to some extent things are improving and homophobia is
lessening, which is great and long overdue, although of course there is still a
long way to go. It is shocking too to read about people still being stoned to
death or disowned by their families in some countries because of their
sexuality. The rights of women in many countries are still non-existent too.
We are
all equal, or should be, as you say. There is a great quote by someone I forget
the name of about how all our differences are superficial but our ‘sames’ are
bone deep. We all want to be accepted and to be listened to, we all want to
feel useful and needed, and to love and be loved and for our closest friends
and family members to be safe and happy.
People
just want to be listened to and treated as if they matter and what they say and
think matters..
Alison/Tink: Exactlu, and Isn’t it a shame, because
everyone >does< matter!!
That quote is true too. And there is a
difference between being uniform than being unified. We are not carbon copies
of one another, not a uniform set of similarities. But we should be unified in
making this world as Beautiful as we know it can be.
Ah,
bless you sweetie. I remember when we first stumbled onto and then discussed
the subject of 'issues' in our private emails, it was not only so heartening to
find another person who believes in unjudgementalism as much as myself, but
that if we do have different beliefs, ways of life etc, they wouldn't affect
our relationship.
I have
some people I love dearly, but they judge me so much on things that I have no choice
over etc. I try all I can not to let that hurt affect things, but it can put
such a strain on relationships!
I know
you are a little tentative about asking about such personal things, so let me
try to guess the things you, and our beautiful readers may wonder about on the
subject of sexual orientation as it is oddly called.
As with
most things in my life, my M.E. has affected my s/o entirely. I realised I was
Bi by the time I was 17 (although I slept with a woman when I was 13, clearly I
am slow on the uptake!)
I was
ready to 'come out' but my mother became seriously ill, and the time just
wasn't right. Then, my heart broke when my beloved moma died. (I won't go into
the matter of grief now, as I'm sure we will cover that ‘Issue’ further on
here).
For a
long time after she died, life was just a battle, and ‘coming out’ was not even
an option.
When I
then may have felt ready, there was the issue of how I only see people in my
bedroom. This may not seem important, unless you realise how intimate bedrooms
are. I see one non relative male, whom I adore. He is smart, funny, and lets me
flirt (I'm a big natural flirt). And if you know anything about me, you'll know
I am very open with compliments. But on giving him the 10th compliment I stop
and think 'was that a bit much', and rather selfishly, I just didn't want that
caution with the women that I see too. So I stayed with my secret, alone, but
very very happy about it.
Then
when I was 23, a relative of mine came out as being Gay. He has other hard
issues too. I heard so many things that people I know said, and didn't want
them to say them to him. So I came out to a few select people with the precise
aim of redirecting their views or questions onto me. However it became clear
these people may not keep my secret quiet. I also felt, that however untrue it
was, that those close to me would feel I had 'chosen' who to tell and who not
to tell when they would find out. So I felt I 'had' to come out to everyone,
and so I did.
And in
all honestly, it has since been one of the hardest battles I have faced. I
absolutely believe for the largest part, people eventually are happier out. But
for me in my very very specific situation, it just wasn't the case.
If God
came and said, ok Alison. If you have a life lived for you, what s/o would you
like? I'd without question say I'd love to be Bi. But if he said you will be
judged by people you love, and by some people around the world, I think for the
people I love, I'd say straight. I really do find that incredibly sad. I'm one
of those really annoying people who are so calm all the time. I'm the most
placid person, people shout at me and I take it and stay externally peaceful and
do not retaliate in any way, shape or form. Yet when I see judgement, be it at
people I know, at people I do not know, even in silly soaps, I rip inside. It
makes me like The Hulk!
The only
differences between a straight, gay or bi person, are the same differences
between two straight people, two gay people, two bi people, an Australian lady
and an English lady, a black person or a White person, a left handed person or
a right handed person, someone who likes sports and someone who likes art. In
as much as there are no differences so different that they stop us from simply
being human beings. We all have differences about us that make us unique, we
are all individuals, but we are all human!
It's
also hard having to hide parts of myself still. I have been told by certain
relatives that I am not allowed to mention my being bi to my young relatives.
Obviously, as I am not the person bringing them up, I will respect their
request. However this goes against everything I stand for. Had I been able to
be a mother, right from when my child realised there was such a thing as
'couples', by seeing their parents, aunts/uncles, etc, I would tell them that
just as a man can love a woman, and vice versa, so a woman can love a woman,
and a man love a man. That is it. But they clearly feel very different, and so
I have to hide the very thing that makes me, well me, my love. In their words,
'they have only just learnt about "normal" sex, they shouldn't learn
about any other kind for a few good years yet.'. Now let me make this clear, I
am neither judging them, nor questioning their parenting techniques. But it's
not like their asking me to simply not swear around their children, or not to
talk about my favourite tv show. They are making me lie about who I am. And
that's a very hard thing to do when your relationships are based on words, such
as almost all mine are by them being held through texts, emails etc.
Luckily for me, I am not seen as
'Progressive' any longer. Not any more. Am now regarded as having a regular
view thank goodness. I have a friend whose 6yr old son knows love is love, and
sees his uncle with another man. Another friend whose 6yr old son also knows. A
beloved member of my extended family who is in her 60's is raising an 8yr old
boy who she has raised always knowing people are different and the same. A
close friend has a 2yr old son who has already broached the subject and knows,
as much as someone at that age can grasp, that love has no gender. I feel
blessed to know these people. To know children are no longer taught bigotry and
judgment.
Usually, I see and feel a single act of
beauty over a myriad of sadness. However, in this case, many people praising my
heart, is counter balanced by a single act of judgment, which I never really
get over.
I know these are those out there who are of
the opinion that a persons s/o is not who they are, and does not define them.
But for me, my love is who I am. For some people it is their job that they feel
defines them. You often hear this of Doctors or soldiers for example. But for
me, my love is my very essence, and my ability to love anyone, for who they
are, is a large part of that. So to have to literally lie about the two people
I am in love with when very specifically asked, is unacceptable to me. I
personally do not feel there is ever a reason or excuse to lie to children. I
feel, as an adult, you should always be able to find ways of telling the truth
without being inappropriate, overt or explicit. So for me to be told to lie to
two of the people I love most in the world, breaks my heart.
Also, there is a section of my family, one
person in particular that use the horrible phrase 'That's so gay' when talking
about something they hate, dislike etc. If a persons colour was used in such a
way, there would be an outcry. I, for once, spoke of my uncomfortableness at
them using it. I had to say this more than one time, but she refuses to take my
feelings on board. The last time I asked her not to use it around me she
started humming. I asked if her humming meant she hadn't heard me, or had but
was ignoring me. She said she had heard but I was being ridiculous and that she
was choosing to ignore me and would continue to use it. Can you imagine how
this makes me feel? If someone, anyone, told me that something I said makes
them shudder and feel judged and that I was being hostile to, even if I didn't
understand, I would never use the language or phrase etc from then on. This person
has seen elsewhere that I believe this phrase is tantamount to bullying, yet still
they use it. Their continuing to do so, shows little care for me. Which, coming
from a dear family member, once again, breaks my heart.
A relative once said to me 'Who on earth
would choose to be Gay Lesbian or Bi?' To which I replied honestly 'Me'. To
which she said 'Well "you" would' as if I am so confident, so sassy,
so enjoy taking on the worlds judgements. I just like being able to love
someone because of who they are, rather than because of anatomy.
I also remember being young and a beloved
relative saying that Gay people had different genes. As if it proved they are
'different'. I knew even at a young age how truly I disagreed, but couldn't
find words to say so. Now, I would yes, that may be true in Some cases, but
people with green eyes have blue eyes. People with black skin have different
genetic makeup than those with white skin. People from Australia have different
genes to those from England. So I strongly disagree with her view point, even
if I was too young to say so at the time.
I feel
the hard part about my situation, is that I can not surround myself at times by
like minded people. I know we discussed in our 'Self Worth' blog the issue of
confinement. And it's similar here. Usually, using my example here, if you are
bi, but certain circles around you are not entirely comfortable with your s/o,
you can go to places or social clubs, or an LGBT club, or charities, or even TV
fan meetings, where you will find other people who 1, will not judge your s/o,
and 2, have sometimes fought the same battles as yourself. For me, i can't do
that, so I was glad before my relapse, to do so via social media. I became
involved with social media charities, and met online people who even praised me being able to love anyone,
not frown upon it or simply go silent every time the subject comes up. Which is
funny actually because I've never been one who would benefit from help groups
etc. With my illnesses, or grief, or issues, I've never once thought about
finding groups where I could find people going through what I was going
through. It just never appealed to me. But with my s/o, when I joined twitter
and Facebook, without intending to, or even realising it, I gravitated to the
aforementioned profiles/people. And it helped some actually. I was glad for it.
It's funny, I was listening to a book and
one of the characters played the word game where they say one word and you say
it's partner. They said 'husband' and I answered 'love', not their intended
'wife' match. Marriage to me, is about just that- love. Not gender.
Because
to me, Sexual Orientation is not about sex. For most Bi-sexual people, at least
from what I have read or seen, their s/o is simply about who you are able to
love. Whereas most straight or gay people feel their orientation is about who
they are able to be physically attracted to. Which doesn’t make it any less
important. Because, who you were born as, is exactly who you were meant to be.
That isn’t to say don’t work at being the best version of yourself that you can
be, but the ‘you’ that makes up who you are, is inborn. And deserves respect,
love, and kindness, and not to be judged, bullied, or suffocated in any way.
Also on
the subject of religion specifically, I find it so terribly sad, when people
use religion as their 'reason' for hurting or judging another person. I
personally am extremely religious myself, and over the years have looked into
various religions. And I can certainly say that I have never found a religion
where love wasn't at the centre in one way or another.
CNNhealth’s
Dr. Charles Raison said, “‘The stressers that are most likely to make people
depressed are things that threaten their image of who they are. Things that are
likely to make you lose status, lose power, lose the respect of other people,
lose everything you've built, destroy what you think your life is about. Even
when the stresser gets fixed, the depression often persists.’ This is often the
case when people are judged on any aspect of who they are, for example their
s/o, race, colour, class, intelligence, anything. Being judged in any form can
completely disassemble your centre, your peace of knowing who you are. As
another example, Bullying, however slight, can have life long effects on the
sufferer. I saw this graphic recently, says a lot doesn't it! So sad.
There
should be no need to fight for one another. But the sad reality is, that we
desperately need more people to indeed stand up and make the difference.
Jodi ,
you are so evidently one of these rare people. You not only fight your battles,
and the same battles for others- but you fight other peoples different battles
too.
This is
something I too have done my whole life and whole heartedly believe in doing
so. I believe in championing every person.
Everyone
deserves to know they are worthwhile, valued, loved. They do not deserve to be
negatively judged.
We
should all do this.
Stand
hand in hand.
One
army.
One
heart.
There is
a quote "Stand up for what you believe in, even if that means standing up
alone" Let us stand with you. You are not alone with us.
We., all
of us., have compassion within us.
Use it
wisely and freely.
Why we
are doing a blog about issues 1. Because we believe in you all, and 2, as this
quote reads : "We write because we believe the human spirit cannot be
tamed and should not be trained." - Nikki Giovanni
I heard a line in a book, 'Illness can make
family of strangers'. This is so true. As it is of experience. Having been
though, or currently going through a similar experience as someone else, forges
a bond no-one else can understand.
I also separately heard "Community is
born through that struggle to push forward." this is true of you, our
beautiful Blogger Arme. That for which we truly thank you all for. We adore our
community!!
In an interview that I've mentioned in a previous
blog that I did about True Beauty, I spoke of what I call 'Turning your Pain
into Passion'.
I truly believe every single experience
that happens to us is worthwhile. But to use these experiences to help others,
makes them somehow seem or feel more so.
Since then, I have been sent this picture,
both cute and true.
And the
other topic of Issues that I am well acquainted with, is Grief.
As I
have mentioned in previous blog posts, my beloved mother died when I was 19.
To me,
she was the closest person I had ever known. She was my sole carer, and we had
experienced some of the most intimate things two people can share.
When the
person who you are closest to, your 'go to person' is no longer here, you can
feel so lost, there are no words.
So how
do these and my other 'issues' affect my severe M.E.? For me, mainly in two
ways. Firstly, the more things I have in my head, the more brain power is
sapped, and therefore my abilities, be they physical or mental, are affected.
Also, for me, I personally need a lot of sleep. And when I have things in my
head, it keeps me from sleeping.
There
was a neat little discussion Jodi kindly showed me that both she and I have
watched called 'Bully For You' on the show 'Big Ideas' that you may want to
watch that fits in nicely with this blog discussion. You can watch, or download
either the video or audio of it here.
http://www.abc.net.au/tv/bigideas/ stories/2012/07/30/3555187.htm
It can
be hard talking about such issues at the best of times, let alone when you are
so ill and already wary of sounding like you are moaning or struggling to what
family or friends have remained close to you.
If any
of you reading this have extra issues to deal with, please email me (Alison/Tink)
if you want/need to talk.
So for
now our beautiful Blogger Arme., know that you are not alone with us. And we
will never judge you.
Take
care of your hearts and health, and of one another if you so are able.
Best
Wishes, Much Love and Blessings
The
Tinkerbelle and Hummingbird M.E. Blog x x
'Every mans life concerns every other man'.
Bulletproof monk
"Be kinder than necessary, for
everyone you meet is fighting some kind of battle."
~Attributed to Plato, T.H. Thompson and John
Watson
'Death
leaves a heartache no one can heal, love leaves a memory no one can steal.' Generation
gap
©TheTinkerbelle+HummingbirdM.E.Blog
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