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...