A deeper journey inward....

When I began this blog it seemed that a journal of my long arduous journey to more connection and friendship was worth writing and maybe worth reading... though I rarely know where it's going... and today want to write about a turn in the road that I never saw coming....

In the early 80's when so many symptoms arrived in my body, occasionally I would notice a photograph of me....startled by the new tendency of my head to lean to the front and right side of my body.... through years of doctors, tests, treatments and diagnoses..... that particular one was rarely dealt with..... even by me.....

yet over time, when so much else improved my functioning and health, doctors never could tell me why my head leaned so much to the right .... it became a small irritation, fired usually by videos or photos, until I would search the internet for something???.... someone like me.... a treatment... an explanation... finding nothing until February of this year when the term "cervical dystonia" lead me to a youtube video with a woman who looked so much like me in her posture...... receiving treatment and improving dramatically.... then I found more videos.... I was so excited....yet I cried and cried....and felt terror and didn't know why I wasn't thrilled to find a reason and a possible treatment....

and then I got it.... I couldn't be thrilled for the healing of something that I could never really face having or affecting my life so profoundly.... I had come upon a denial so deep.....and was terrified to understand the extent of my deformity.... because that's what it is.... a deformity.... that felt normal to me, that I brushed off so many times after all I had been through...... yet no doubt had an enormous effect on my ability to connect with others.... disability is a big challenge.... disability and deformity is more than double....

three weeks ago I couldn't have written that paragraph above coherently.... it has taken months of learning to live with this.. to grieve.....the treatment is not readily available as it is expensive and rarely covered by insurance.... wanting to heal and facing the denial has taken months of clinic visits and phone calls that continue..... I have been diagnosed with the same disorder.... so have found a possible treatment team..... but the funds are elusive.... and to search for them is to bring this 'knowing' this new self-revealed, painful realization fully into my awareness .... I am persisting... but know that I must accept myself as I am today..... fully accept myself....

and it does matter..... not the worst deformity by any imagination.... but it is difficult for us to accept differences and mine were heavier than I knew....

I spoke to a psychiatrist on a consult last year.... she told me that I would have to work this hard, stretching her arms fully apart sideways, to get this much in connecting to others, putting two fingers a few inches apart..... that was my last meeting with her..... it was an approach I couldn't work with..... her image came to me in the last few months and finally I understood my response... I am willing to work that hard..... but for me and my life first....

Here's a thought or two...

The other night I went to a potluck supper and sing with my most wonderful chorus (we're currently on summer break)... and was able to have conversation with nearly everyone there... because everyone was sitting in a circle or sort of circle...

when I got home, happily filled with conversation and music, I remembered an architectural concept that popped up somewhere in the mid 90's I believe... that was very exciting to me and some architects as well... called All Access.... the idea being that in new buildings, parking lots, etc.... that architects ought to be creating entrances, hallways, elevations, etc.... that would accommodate everyone.... such a lofty goal!... there is a fair amount of research still around on this topic but a for instance is... stairs... now who really needs stairs?.... ramps (seen now as being 'specially' built for w/chairs) can be used by everyone... so why build stairs at all?... everyone can use ramps... mothers with carriages rejoice!... if you can climb stairs, you can climb a ramp....

wow... sometimes it's just too simple.... well in fact probably not that simple since safe ramps need more space.... but... what an idea... it has stayed below the radar, unfortunately, but sometimes in downtown Boston with some newer construction I spot a space this is 'all access'...

The more all access features an environment has, the less 'special' has to be done for individuals... making our experiences, and maybe our relating, more mutual.... wow...

Eye to Eye...

this weekend I was at the birthday party of a friend (TAB - in the disabled world means temporarily able-bodied... the temporary is a new phrasing...)... I was the only wheeler there, but have known some of the folks for quite a while.... so it's not quite so awkward.... actually we left my wheelchair in the car ( I can walk short distances with a cane and occasional assistance) because I found it tends to repel people... more w/c = less interaction.... I can't explain it, but I've learned it....

I exchanged some happy greetings with those I knew, including the birthday woman, and had some conversation while seated in your standard backyard chair (with stealth I search out the arm chairs as they help with balance).... people sat next to me, many were artists as well and we talked the usual artist talk and it was fun...

There were guests along the food table talking, some I wanted to say 'hi' to but the challenge was that with my disability it's very difficult for me to stand for a length of time (within 10 minutes my legs will give out)... so unless it's a particulary strong day, I rarely try ... the clumsiness of having to say "Excuse me but I need to sit down" while someone is deep in conversation about their latest relationship/painting/ sculpture or... derails the energy of the contact....

Sometimes I sit quietly, when people do stop to say hi... they are standing and I'm not... and their goes that wonderful energy of mutuality.... and people, in general, are programmed not even to see a child height adult...

it's challenging and well-known among those with disabilities who deal with it.... just imagine talking to the store manager over a problem when he's 2-3 feet taller than you are.... it can be tough to make a point...

A few years ago I attended a focus group on a fancy w/c that could do some amazing tricks.... but every person in the group fixated on this chair's ability to rise in the air to normal height....

you could actually roll down the street at 5-6 feet tall... we were swooning....

the product we reviewed was never marketed, but the vendor broke confidentiality so taken by our swooning and today you can buy for about $20,000 a wheelchair that makes you the size of an adult... wow... now that might make things a bit different....

so how have you been, my imaginary audience?? ...

there are no excuses, or an audience from what I can see... but apologies to myself for walking away from this blog.... it has value, read or not...

I didn't walk away from the concept..... probably my major personal goal of the last 2 plus years has been to tackle this dilemma, life problem, whatever... and I have not tackled it or at least not resolved it....

although part of the consequences of writing the blog was my own realization that I did not accept myself as I am.... in part, a disabled person.... not the (as I now know it's often called, damn the titles)....temporarily able bodied person I started life as....

so you think you have a problem and it's right there in the mirror.... waiting for you to see it...

tweaking and fretting, digging and talking, venting and tearing, I have faced this demon ... this unsummoned change in my position in the world.... and found some self-esteem .... resettling the molecules of my being to new positions on myself and others....

sure wish I had chronicled details....

today I am a whole woman, yet disabled, facing a world that rarely accepts what it perceives as different.... standing with thousands of other disabled people who also are isolated, lonely and often desperately reaching out to connect....

let's talk more about that...

so this is the dilemma

I began life as a relatively healthy person   went to a lot of school   loved my work   had lots of friends  the superficial basics  

then illness came  and I dropped out of the loop   stopped working   a gut-wrenching decision  met thousands of doctors and medical personnel   spent several years housebound and sometimes bed bound  and watched my friends leave (when I could lift my head)  some quickly, some took a while  but they were gone   and so was my family   

but I was lucky  I got better  over time, with work  now I go out, use a wheelchair can dance and love and play and work   though limited  and I am joyful  for what I have

as an artist, I am abundant with the joy of creating    my gratitude for more simple things has become larger and larger  and knowing me (with whom I spent countless hours alone)  is simpler and satisfying

I miss friends very much    there are some that linger on the periphery of my life and no doubt love me as they say and I love them as I say  

but they are able-bodied and

it just doesn't seem to work   we rarely see each other and our lives are so different we struggle to connect

though I've met many wonderful disabled people (many since birth)  our life experience is so different   we struggle to work through that   

and I feel like I'm straddling two worlds   don' t  know where to go

  

a little less mystery

hopefully, for today  

yesterday's post seems mysterious to me  and that's not where I want to go

my (this particular) inner journey is about social isolation and loneliness,  which so many humans experience, but with particular challenges for the physically disabled

as I spent more than half my life as "able-bodied"  I feel caught between two worlds  way to simplistic  but a beginning to understanding 

this may not be the right blog space 

couldn't find much from or about people living with disabilities

there are some disability sites but then no connection to the "able-bodied"

so where to post?

perhaps my dilemma is right there

off to the hospital today for an ultrasound    you might think that a hospital is for people with illnesses     but no doubt I will be facing problems with getting through doors and onto tables and into the positions everyone will like    hopefully we can negotiate well  and get the job taken care of  without much stress

more tomorrow...

the journey begins

well not exactly begins   quite past the middle, actually   but it's your opportunity to jump on to this particularly rocky part    the rocks are tough on the wheels   and company makes for a smoother ride  or at least a more interesting one  

we won't (at least I won't) be talking much about vacation travel     this journey is more of the inner kind   the more challenging journey where so few dare to go 

until up against the wall with no windows

where you either stay or work it out  

this time i want to work it out