The first time I met Steve (who is a bit of a cherished hero to me
) was right here in this very ANA forum. This was my connection to the ANA… and from there I finally got a membership, a bunch or info packets in the mail (plus a “deaf left†pin
) and eventually mustered up the courage to go to a
physical ANA meeting.
I was wobbly, had an eye weight, my face was
completely paralyzed and I was still in trauma and scared with
much doubt about my recovery prognosis. I walked into this small conference room, at St. Vincent’s hospital in Oregon, and there was this man who looked me straight in the eyes with the most crystal blue warm welcoming eyes and a big kind beautiful smile. He made his own sign language to me- of holding up four fingers and lifting his eyebrows- in question. No words just body language.
He repeated by lip speaking to me silently, as to not interrupt the group discussion, if I was “4â€- (that was the name I used before I felt Daisy Head Mayzie, aka DHM, was more suiting). Again he simply raising his eyebrows (my one eyebrow was paralyzed so I could do this in return) and he showed four fingers he mouthed,
“Are you four?†I nodded my head. It was a non-verbal language exchange I will not forget.
Instant ANA buddies were made.
Sometimes we all meet, in-person, either in support groups or in symposiums… or we just continue our dialogue here on the
lively forum.
It is very important for all of us to remember that our conversations are being read by people
all over the world (aka WWW) and that the readers (and/or listeners) come from ALL walks of life, race, creed, or color. Ours is currently THE most active acoustic neuroma discussion forum
in the world.
What we must always do is support each other to get through our sometimes-difficult acoustic neuroma journey. (Although with Laurel and Hardy it can sometimes be so FUN and funny. Jan & Lori are well loved
)
The ANA put together an
exceptional instructional DVD to which has been played at the beginning of many of the Oregon support group meetings. It gives the group a reminder as to WHY they are there but also informs newcomers what it is all about and answered many questions they have- before dialogue even begins.
Videos and DVD’s can be amazing tools for communication and education.
The health bill is VERY complex and the discussion among patients, doctors, hospitals and people alike IS important to have.
We, as acoustic neuroma patients, often deal with huge obstacles. Government bill or not -one too many AN patients are NOT getting coverage for their issues and ARE discriminated against. Some patients need Botox or plastic surgery and this is not merely cosmetic. Many need to find away to improve hearing loss be it Baha implant, hearing aid, etc. ( I am repeating myself... ok ok... you have heard my
spiel before… nada nada nada…) We as a group need to also come together, putting any fundamentalist differences aside, and figure out how we can bring out awareness not just to assist those to have their tumors treated but also with the post-op complications that can happen. This could include having insurance companies understanding why Botox, Baha implants, physical therapy, etc all need to be covered. Although those of us on the forum seem to be
middle aged know that there are also teenagers and many youth -affected with this tumor. We need to somehow come together and let people know about the post-op obstacles -being it insurance hassles for eye weights or funding physical therapy etc.
I just shared this video with folks on another AN Community thread about the new Stanford group that just started… and I thought it might be fitting to share with this group to.
http://www.youtube.com/watch?v=OEdVfyt-mLw
Steve initially wanted this link in the March ANA newsletter but his text count was over the limit
for their newsletter format -so parts of his original well done article had to be cut. Steve wrote an article about the Oregon ANA group. His co-leadership is going to be a HUGE asset and I am SOOH glad he stepped up-to-the-plate to help lead our diverse group. We have a 91 year old (he is sweet and so humorous) who was teaching ballroom dancing to one couple in the hallway outside our hospital conference meeting room … and a new young kid who was raised on Russia who came here initially as a student. We are all SOOH different but what brings us together is our acoustic neuroma and we connect together, in a hospital conference room, enroute of our journeys- and share. (Sometimes we laugh, cry, hug, giggle … dance… or just chat.)
Anyway this link I wanted share from You-Tube that was filmed where our group actually meets. (Our support group knows this foyer, elevators and cafeteria well.) These are not actors- but REAL people. It was done with volunteer time of employees to promote awareness to breast cancer.
It is a very popular piece of music with teens today and other youth (and even me the middle aged fogey likes it too now- which pleases my teenager
)
I spoke about music, math, art and sign language being universal- as also is dance. You do not need to speak English to get the message here- in this video. I can see that great care was taken to represent the very diverse group of staff there and- ALL the various positions that make the place work.
It is fun! I am so glad Steve shared this video link with me, a few months ago, and I hope you-all like it too.
I know that we also have medical staff lurk and read our posts too.Do you think we could put fundamentalist differences aside and all celebrate our diversity to put together something as fun, together, as what this hospital staff did to bring awareness to breast cancer -did? It would take some creative and articulate people… and I KNOW we have those here. WE as AN patients DO face obstacles and discrimination but is there a way that we can bring on change so Baha’s, eye weights, hearing aids, Botox, vestibular therapy, etc is covered on insurance- through awareness?
Hope you-all are dancing. (I bet you can even dance from a kayak!)
Anyway many of us have been talking to each other for many months (years) and I STILL
love you all- like family.
Jayson, I hardly know yet- and I like you
already.
DHM
