cabinfeveronline
THE STORY OF ORVILLE
Achairde All:
I hope that everyone who had a Thanksgiving to celebrate had a wonderful day. I know that I did. The only downside to family gatherings is that I miss my Mama and my Daniel terribly. Mama was very big on Holidays and while it saddens me to think that my sisters and I can't carry on some of her traditions: The Annual Easter Egg Hunt & Roller Derby (I gave up on that one when I was 5'2" and my sisters were 6'0", 5'10" and 5'5" and it got so competitive it was like a Roller Derby without the skates or dainty manners); The Turkey Dance & Dive Bomber Exhibition; Christmas Hide-Out (while Mama talked to Santa/Dad) complete with Reindeer Landing On The Roof with Jingling Harness Bells (the last time we did that one I was 27) and Midnight Mass & Movie Night. That doesn't mean that I can't share my familial quirks with my EFx2blogs family so here is the story of Orville...
First you have to understand that my Mama was Irish Catholic. In fact there were days when she was SO Irish she was damn near debilitated by it! She, like many of the Irish, had her own names for certain things and damned if she couldn't get others to use them as well. Not that she MADE us say them it's just that you got used to them without noticing it. I'll never forget the time when I was working at Cigna I ordered a box of pens and when the Supply Guy came by he said, "We didn't have the brand you ordered but we do have Rolling Writer's. Can you use these instead?" That's right, I had written Roller Baller's by mistake- anyone want to guess what Mama's name for Rolling Writer's was? Yep, Roller Baller. We always had a salad or a 'wettuce ledge' with supper. One night my Dad calmly advised Mama that if he EVER ordered a 'wettuce ledge' in a restaurant mayhem would ensue when he got home.
She also wouldn't buy a stuffed toy or figurine unless the face and expression were 'right'. Our grocery store was selling teddy bears and she must have checked them out 5 or 6 shopping trips before she found the right one which she promptly named Barney for her oldest brother. The thing of it was the bear really did look like my Uncle Barney! (I guess I am carrying that tradition on because my mother-in-law and I were out shopping and I showed her a doll and she shook her head and said, "Not the right face." Then she turned beet red and mumbled, "I've been around you too long!" I, on the other hand, am leaning on the doll rack and laughing so hard I've got tears pouring down my face!!!)
One Saturday, years ago, Mama is working the Bazaar Sale at our Parish and she comes home with this ugly home made orange caterpillar that looks like someone's failure at Ceramics 101. I actually said, "Good Lord, Mama were you on acid when you bought this or what? That is one tacky knick-knack. Please tell me it's closet bound because according to the bottom its been in someone else's closet since 1973!"
That's when Mama went Audible on me...
"I was sitting by the Christmas Raffle Tree taking the money for the tickets when I noticed this little orange caterpillar on the other end of my table. I was fairly busy but my eyes kept being drawn to it. Finally, when I got a quiet moment, I got up and rescued him from being so alone and brought him to sit with me. It took me awhile to gain his trust. He had been, as you said, packed away in a dark closet and no one ever thought to bring him out even though he so dearly wanted a friend. Softly he said, "My name is Orville. Do think you could find a home for me?
You see the girl that made me went off to school and forgot to take me with her. Her mother thought I was tacky and she put me in that box in the closet. At first I had hope. I just knew that when my friend came home from school she would remember me and rescue me. Then she would take me to school with her and I would meet new friends and she would be proud to show me off and tell everyone that she loved me and she had made me with her own two hands. But I was wrong, she had outgrown things like me and I stayed in that closet. Weeks became months and months became years and all the while I was alone in the dark and worse, I had no people to love me. But no matter how long I was in that lonely box there was Someone who loved me and that Someone was Jesus. He had been so sad and lonely in the Garden of Gethsemane when his friends fell asleep and left him feeling abandoned too."
So there he sat, looking at me with his little paws clutched so tightly and hope shining in his bright eyes glimmering with unshed tears. Softer still he said, "Do you think I could come home with you? I don't take up much room but I would fill your home with love. I wouldn't even mind if you put me away when company comes because I am so ugly."
That's when I picked him up, went to another cashier and paid for him. As we were headed back to my table I could just feel the love and happiness pouring off of him. I gave him Pride of Place and I assured him, "Orville you will always be where you can see others and they can see you. I would never hide you away when company comes because friends don't do that to each other. I know my girls will love you as much as I do because they will see joy in your smile, trust in your eyes and friendship extended in your little hands."
Then my Mama turned her eyes on me and said, "I must have been wrong because you judged him on his appearance and like the others who couldn't see his value you wanted to shut him away again."
Folks, I am not ashamed to say that despite being an educated 28 year old woman I sat there clutching Orville and sobbing. NOT delicate tears but the kind of sobs where you wheeze and your eyes swell shut. It was in that state that I managed to tell her, "I was wrong Mama. I was so wrong to judge him just on how he looks. There's a good heart there only I was too busy and in too much of a hurry to notice. Please Mama, let him come home with me. I won't hide him away when company comes and I will love him and be his friend because he taught me a valuable lesson. One which you taught me when I was little and I was in danger of forgetting. Please Mama, let him come live with me!"
So that's the Story of Orville. Who, for the last 20 years has sat in my living rooms with Pride of Place atop my Bibles for everyone to see him. Only now he does double duty as he reminds me of my Mama who taught me never judge others on their appearance and that the greatest love sometimes comes in the plainest or most broken of packages.
Slan leat,
Elaine
AKA Cabin Fever
CABINFEVERONLINE
MOOD: Melancholy
MUSIC: Gypsy Soul ~ Silver Lining
1ST GOLDEN CABIN AWARD & CHALLENGE
Achairde All:
As I have said before and will probably say again, "Many are called but few are chosen!" Congratulations to Paledaemon for her honesty, bravery and truly heartbreaking Comment to, "THE FAMILY & GOVERNMENT DYSFUNCTIONAL:
I'm A GCA Award Winner
She joins the ranks of fellow bloggers Miss Pat, Bitzky, MindCandy, Sharon B, Keith and the like. A rare company indeed. Massive kudos are due, folks.
That was a difficult article for me to write and I wasn't surprised that I didn't have many Comments. What did surprise me is the over 1100 emails I received and most of them were as heart wrenching as PD's situation. Two things have really shocked me since I became Disabled at the age of 31. One, if you or one of your children is Disabled there is only one state that mandates that Domestic Violence Shelters take you. For the rest of us there's "No Room At The Inn". (I know from first hand experience since I called the shelter here in Tampa while I was 'married' to the late, unlamented and annulled PFG. They wouldn't take me because I was still in a wheelchair. When I asked WHERE I could go their answer was, "No where here in Florida!")
This is the second. There are many Disabled people who do not qualify for an Assisted Living Facility (and wouldn't want to be in one of those snake pits anyway) who receive little or no help from their families. I am not speaking of personal care or money or housing. I mean help getting to the doctors, picking up scripts or getting groceries. The saddest thing of all was the majority of the people who wrote me told me that they were made to feel ashamed, were accused of 'faking' their Disability despite overwhelming evidence to the contrary or had family members deliberately pick fights so they could justify not helping out.
When did we become so uncaring as a society? One of the things I do, besides write CFO, is to help people find Social Services or step in when they've been denied assistance they qualify for. It isn't a freakin' Personality Contest folks. I have helped people that I would not choose to socialize with even if you had put a gun to my head. However, that's not the issue, is it? It's getting them the help they need and are entitled to. And the damnedest thing about it is it's the Disabled person who is embarrassed about it. Not the uncaring and self-centered families!
I used to just cringe when someone from the FL DCF, Self-Reliance or other Agency would ask about my family assisting me. I usually broke it down to one sentence, "They have chosen not to participate in my Health Care." Which earned me quite a few, "Yeah, riigghhtt!" remarks. Before Medicare Part D, when I was getting my meds through Hillsborough County, they grilled me so throughly that I actually burst into tears right in their office. They wanted my sisters telephone numbers and I wouldn't give them up because I was so ashamed and I was trying to protect THEM!!!
Now when someone asks I give them my Health Care Surrogates phone numbers and suggest they call them to ask about any family participation. The DCF called both Sandy and Avery on the subject and while I did not ask for the particulars I got the distinct impression they weren't near as 'dainty' as I would have been under the circumstances! Since I started doing this the Agencies have put away their pliers and don't ask me anymore.
That's what makes Paledaemon so brave. She makes no bones about what her family is doing to her instead of keeping it a dirty little family secret. People who read the Comments and wrote me said it was because she gave them the courage to email me about their own situation. She not only deserves her Golden Cabin she should have the respect of every person here.
Something else to keep in mind, after Katrina rescuers found a large number of Disabled dead in their apartments because they had no way to get out. 65 people in one Extended Care Facility died when the owners ran for safety and left them there to drown. Only ONE Disabled individual made it out of the Twin Towers on 9/11. That's because two co-workers carried her down 90+ floors to safety. Everyone else who went to the floor they were told they would be evacuated from DIED.
It's hard enough to be Disabled. It shouldn't be a Death Sentence during a disaster. So I am challenging the Able Bodied among us to come up with some ideas on how you can improve things!
Slan leat,
Elaine
AKA Cabin Fever
CABINFEVERONLINE
MOOD: BLOODIED BUT UNBOWED
MUSIC: LINKIN PARK - PUSHING ME AWAY
TAGS: daily life, disability, families with disabled relatives
PRELUDE
Achairde All:
I have several articles that I have been holding onto because of the Trackback issue. Please consider this, as the title suggests, the Prelude:
Slan leat,
Elaine
AKA Cabin Fever
CABINFEVERONLINE
MOOD: PAINFULLY LIGHTHEARTED
MUSIC: NAVAJO-MORNING STAR OF THE CHEROKEE
TAGS: daily life, disability, families with disabled relatives
THE FAMILY & GOVERNMENT DYSFUNCTIONAL (CLEAN)
Achairde All:
Well, I thought I'd take a minute to tell you how my life is going. On the Disabled and Familial sides, that is. I guess I could choose a more intellectual word but, to be honest, it just sucks, right down to the ground. There are new medical issues galore and honestly if ONE more doctor tells me there is something new that requires another test I am going to be REALLY close to going up in a water tower and settling the issue- for good. From October 1st through November 31st I have to see my Internist, my Head Injury Specialist, have an MRI and an x-ray on my newly dysfunctional left leg, my Seizure Specialist, my Rheumotologist, my Pain Management Specialist, my Gynecologist and have another Bone Marrow Biopsy. (There's nothing I LOVE more than having someone ram a needle up and into my spinal column WITHOUT ANESTHESIA. I always want to say, "Let's make this quick, shall we? I know where you live!) My Blood Pressure is so out of wack that they've ordered me a wrist Monitor that I am supposed to wear 24/7.
PLUS my Sleep Center and my ability to feel Hunger, which were damaged in the accident have quit responding to medication. I went 3 nights without sleeping and they increased my Trazedone. I got ONE nights sleep and back to three more without. The last night I took 3 Trazedone (which is an anti-depressant that they use for sleep problems and usually works for me because I refuse to take Narcotic Sleeping pills)and a Lunesta at 10pm. At 2:30am I took another Lunesta and I was still up at 8:30am to call my doctor and tell him things were not working out. He took me off the Trazedone and put me on Mirtazapine (another anti-depressant) so we'll see how that works. Next stop TGH if it doesn't.
As to eating, if I don't take my Nausea medication, Phenergan not only don't I feel hungry I CAN'T MAKE myself eat. Nifty little Diet Aide there. In fact the thought or smell of food and it's boot city. I have to keep drinking Sports drinks so I'll have something to boot or it gets really ugly.
The Florida Department of Children and Families has cut my Foodstamps to $10.00 because they aren't counting my Assistive Living Devices or the only medicine I can take for my Gran Mals which is not covered by the Government formulary. A total of $150.00 per month. Why? Because THEY DON'T HAVE A COMPUTER SCREEN TO ENTER THE INFORMATION ON. That's why I write non-fiction, you can't make this stuff up!
Now, I can and have dealt with these issues before, so what's got me working off my last nerve? Two of my sisters have informed me in the last two months, and I am quoting here,"I don't believe that you're Disabled. I've never believed it. You are a liar and Prescription Addict. The only reason you that you pretend that you're Homebound is because no one likes you!"
Sister 3 (Margo) actually told one of my physicians that, "She is so smart and knows so much about Medicine that she tells you the symptoms you want to hear to get the diagnosis she wants from you!" STG!!!
MBers will remember when I quit Medicinal Morphine COLD TURKEY after being on it for 5 years. I was having some very nasty symptoms and they decided I was having a drug reaction and wanted to turf me over to Psych. (I told them no. Basically because I was 'having a drug reaction' not an 'emotional issue'. Besides they never turfed any of the guys in my group under the same circumstances. WHY? Say it with me ladies - BECAUSE I AM A WOMAN!!! ) They said I had to go or go home. I chose Home and they wigged. It couldn't be done, I could die - as if that scares me or I would be back in 3 days. I went home sweat lodged myself along with Herbs that left an after-taste that would have made a Hospital meal seem like a Gourmet Event and I drank a minimum of 2 gallons of water a day. The first day I was Home I dumped an entire bottle of MS Contin into the toilet so there would be no temptation. Now, contrary to my sisters, my Chart says, "Patient Does not Appear to have Addiction Issues".
I guess my fierce intellect must have worked the same magic on all those MRIs, Xrays, Bone Marrow Biopsies, etc. to get them to show the appropriate damage, ya think!
Honest to Gods folks, I have been on Social Security Disability (NOT SSI) for 17 years. I get reviewed by the State every year and the SSA has reviewed me 5 times. Their last attempt was in 2000 when they sent me a list of their doctors to see. AFTER THE VERY FIRST ONE THEY CALLED ME AND SAID NEVER MIND! I see some of the best physicians in Florida and some in the Southeast! I will admit that I don't make friends easily but when I do- I KEEP them. As in six that I've known 35+ years. My problem in making friends is that my definition of friend goes way beyond normal love and loyalty as does theirs. The last new friend I made was 5 years ago and I am officiating at his wedding. Make that 2 years because his fiance is a dear friend as well.
My Brain Injury Association Counselor and I were going to have reverse intervention to educate my loving family but Dr. Weller (Head Injury Specialist) squashed that one last Monday when he told me that it would have to wait until my new medical problems were stabilized. Of course, he also thinks that it has nothing to do with me being disabled and everything to do with some Sibling Issue that can wait until a later date.
The other thing is that they want to go 'dumpster diving' through my Medical records and since they have never done a thing to help me (pick up a script, take me for regular doctors appointments or call to see how I am doing when we live in the same city) I won't let them. I have told them that they can question the people who do those things Dan's Mom Sandy and my Clann Brothair Avery since they are my Health Care Surrogates but so far they haven't bothered to ask them a thing.
You know I was really embarrassed when I started this. I do not speak of my private life easily but I really do feel better for getting it off my chest. Maybe it's because you folks are the people I love and trust as well. So, as a friend please tell me the truth, am I crazy or are they? And why would anyone be so hateful to someone who loves them?
Wednesday and it's back to working for Tim and taking on Governor Rounds. Y'all up for a little beat down on a few Politicians? Lord knows I am! 0;)
Keep the Faith!
Slan leat,
Elaine
AKA Cabin Fever
CABINFEVERONLINE
MOOD: LAST STRAW
MUSIC: LINKIN PARK - CRAWLING/NUMB
TAGS: daily life, disability, dcf services, families with disabled relatives
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PRELUDE
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