An official good-bye to my Dr. Delight...a rheumy w/EDS but w/out a way to live

[Guest guest]

Group,

While I was off the group - having my last of the group of surgeries, I lost

my doctor, my friend, my rheumatologist. I know I've mentioned this before

but I'd really like to be able to honor her by sharing her life. When she

died I was about to have my last surgery and my surgeon was her partner and

knew how close we were. He didn't tell me until after the surgery that she

was gone cuz he knew I wouldn't have had the surgery. So, I missed any

opportunity to go to her wake and she was creamated so there is no grave to

visit.

Her name is Helen Delight Walters. She was a professional ballerina in NYC

and danced under the name of Helen. When her body didn't allow her to dance

anymore and (I believe in search of a reason why), she went to medical school

and became not just a rheumatologist, but the BEST DOCTOR EVER. As a doctor

she used her middle name which was so appropriate for her style of care:

Delight.

She gave me her office, pager, home and cell numbers so that when I needed

her I could have her THEN. She TRUSTED me and never questioned what I said.

And talk about bedside manner! She would come into the room and give me a

big but gentle hug and SINCERELY ask, " So how are ya? " " What's hurting? "

" How's life? " She would take the time to listen to all I had to share. If

one of my other docs was lacking in some way she would get them on the phone

right in front of me and ask if they were aware of the problem and what was

happening about it? She would motivate them nicely but without asking...she

was telling them to MOVE.

The last time I saw her she called my orthopedic surgeon and asked him (this

was her 2nd call and she'd written him twice), WHEN and WHAT he was going to

do about my shoulder that he successfully fixed but then demanded I go to a

PT that screwed it up. He wouldn't budge but she didn't give up until she

died.

One day I found out why she was so ABLE to understand and HELP me deal with

my EDS even when there wasn't an answer. She said to me quietly one day that

she too had EDS but wouldn't get diagnosed. When I asked why not she replied

with, " Why? " " There's not anything they can do to help me. " She prescribed

herself pain meds and hid her EDS from her co-workers, friends and family.

My podiatrist did the same surgery I had on both of my feet to one of my

doctors feet. Bunionectomy, fusions. After she died when my podiatrist came

to my hospital room to talk to me (he found out I'd learned of her death

earlier that day), I told him that she had EDS. His face changed colors as

he remembered the surgery on her foot and recognized that it was almost an

identically unusual structure (whatever) to mine. He said out loud, " THAT

EXPLAINS SOOOOO MUCH!! " He told me that she always seemed to be in pain but

she would never admit to it. He seemed to be more sad now that he realized

that she knew what she had but couldn't find a way to treat it enough to be

able to live.

I don't think that my Dr. Delight intentionally overdosed the night she got

back from the Mardi Gras celebration. I think she did what I know I do

sometimes and I'm sure others in history in extreme pain have done...she took

another pill and another pill until she could actually go to sleep. She died

having choked on her own vomit while sleeping on the couch.

During my second to last visit with her I was discussing my insomnia. I was

telling her about this commercial that's on late at night where a woman is

laying in bed and every hour she glances at the clock and says, " If I get to

sleep now, I can make it on 5 hours sleep. " Then 4, then 3, then at the end

of the commercial...This is where my doctor interrupted me with the last of

it, " Well I guess I can make it through one more day. " (Without any sleep.)

I cry now thinking of how hopeless she felt. She was crying out to me and

neither one of us knew what to do.

During that visit she told me to go ahead and try doubling the adult max dose

for Ambien and see if that was okay for me. On our last visit I informed her

that (at that time), the doubled dose (20 mg) of Ambien was helping me to

sleep. It was a week and a half later that she died from an overdose. Part

of me feels guilty like maybe she tried it and couldn't handle it, or not

with the alcohol. Maybe if it was too much for me she wouldn't have tried

it...I know it's stupid but the questions still come up.

The touching thing about it all is that during our last visit, she had just

finished designing a new patient room. Although most of her patients were

elderly, she didn't stifle who she was. She had a skeleton in the corner

who's hand was covering his crotch, as if " he " were grabbing himself. There

was a picture on the wall of her and two men and one other woman. I asked if

one of the men were her husband and she explained that those were her

sibblings, what they did, their names, etc.. After she died I asked for a

long time to have something of hers and what I finally got was the picture

that hung in her office, with her and her siblings, the thing we last talked

about.

During my recovery from the foot surgery I had a really hard time dealing

with the loss of my Dr. Delight. I screamed at the top of my lungs and

sobbed such a primal sob that it shook me entirely. I screamed that I

couldn't make it without her, that I needed her. My best friend Cyndi had

brought me a balloon with a smiley face and tied it to the end of my bed.

She had carried it in her van for almost a week before bringing it to me. I

had another balloon that was newer than the smiley face but was losing it's

steam more quickly than the smiley face. I screamed that I needed her and I

had to know she was still with me when the smiley face balloon (which had

it's side facing me for days) turned the smiley side to me and stayed there.

I choose to believe that that was her way of comforting me. Over a year

later I have that balloon pinned to the wall so I can see it from my hospital

bed...(at home).

I'll never have another doctor like her. The world and especially EDSers

have lost a true warrior, friend and fellow EDSer. But GOD's got one HEAVEN

of an angel now.

Thanks for listening...I felt like she was ripped away from me and I never

got to acknowledge who she was and still is in my life. I have a picture of

her on my desk, on my cork board, in my wallet and in my car...velcro-ed

down so she can always be watching over me.

It is scary to me that such a powerful, intelligent and resourceful woman

couldn't figure out a way to live with her EDS. GOD BLESS MY DR DELIGHT!

Thanks for listening....love y'all, Janet