bonniethesurvivor

LOST LOVE? NO!

bonniethesurvivor — Tue, 29 Jul 2008 14:52:00 GMT

Why, oh why, after over 2 decades of disabled life, do I still not get it that most people don’t “get it?” I thought I was going to have to give up my beloved new puppy, Chloe, because the people from whom I purchased her had no clue as to my needs, despite my telling them over and over again!

I explained to the person (actually several people), that I have herniated discs—not related to my primary disability, but a big issue all the same. I can’t risk my back. I need a dog I can control.

I thought I had come up with the “perfect dog.” She is a lhaso apso/maltese mix, 4 months old, dear as can be. I have had her for nearly 3 weeks. She is already part of my family (that is, my husband and I now have a ‘child’ at home).

I wanted a dog to play with and also to be a “lap dog.” I did my research. I searched and talked to ‘dog people’ and vets. I had only one question. Since I wanted a LAP DOG, I wanted to know, how much bigger will she get? Only a pound, I was told, reliably, by the seller (not a pet shop!). The “maltese” seemed to come out most strongly in the whole litter, with a breed standard of a maximum of 9 lbs. That would have been fine.

I not only wanted to be able to lift her, I need to train her, to finish her “housebreaking,” to train her in those essential doggy things, like “heal,” “sit,” “down,” “stay,” “come,” etc. I needed to be able to physically control this dog.

So far, she has gained 3 lbs., and just since yesterday, she gained ½ lb. I can no longer lift her

I have wanted a dog since my black lab of 12 years, Galena, passed away a year ago from a stroke. I had her since she was only 6 weeks, and it is a true fact that she was my best friend. We animal lovers all know how that goes . . .there when you need them. . . unquestioning love . . .a burden but a blessing.

It took me this long to be ready for a new dog. When we took her we were investigated like we were adopting a human: 3 personal references, a vet reference, a home visit, and on and on. I did not have a problem with this, as so many animals are abused.

Chloe was not an abused dog. She was purchased as part of a 2 week old litter by a “high end” rescue organization that did not want the breeder to continue breeding this mother, so the whole group and mom were purchased and neutered. They were then fostered with love, and never harmed. (She was not inexpensive, at a time when pennies count; not that this is really a significant part of the story, but not insignificant either).

This was supposed to be MY dog. My husband made it clear that she was for ME. He would help in a small way, but the responsibility would be mine. And now, I have to face the fact that I may not be able to care for her in the ways that I expected.

I have been waking up several times a night in pain, my back hurting, from trying to train little Chloe.

We almost decided to return her. My heart was breaking. WHY DIDN’T THOSE PEOPLE LISTEN TO ME???? I told them I needed a SMALL dog, and they didn’t pay attention to my words. Arrgh, Arrgh.

Three or four pounds to them, maybe five—the world to me. We are already bonded, Chloe and I. She follows me with her eyes, or follows me around the room. How could I return her?

Would she be my new lost love?

NO! ! ! I am determined that I will adjust my expectations of what she would be to me, and am working on ways to train her that will not hurt me. I have found a trainer, who is going to help, at a very reduced rate, given the situation and my disability. Sometimes I feel the hand of God, reaching into my life when I am most in need .

. .

Lessons come when I really don’t want them. Expectations can not always be met. Flexibility is a key to living with grace and joy. This is something I know, but there are times when I would much rather not face the music.

I will not give up this little love. I will find ways to work with her, and the trainer will help. My husband, who was determined that this would be MY dog, and that he would not be involved, has also agreed to help. Bless him, as he has so much on his plate already. Kirpalson, you are such a gift to me .

. .

So, NO, Chloe will not become my LOST LOVE. I will adjust and work in different ways. I will not let those people, who failed to listen to me, ruin what is now a beautiful part of my life. All I know is that sometimes it is very hard to change what I thought would be to what is really true, and still find the happiness that is in that new place. But I will do it. Chloe and I deserve this new love.

The Politics of Disability

bonniethesurvivor — Wed, 09 Jul 2008 01:50:00 GMT

I see Politics of Disability directly linked to Liberation Theology, a movement that involves the underservered/ underclass world wide. At this time , however, those of us in the US need to focus directly on the issues facing us in the political arena, with cuts in services and the need for PWD to begin to refocus their attention on issues directly facing their lives. I would like to offer a quotation from the political/spiritual activist Mary Bell:

"The battle between the light and the dark of duality is upon us. This “battle” is between higher consciousness and lower consciousness. This is a pivotal time. The task is not to engage or struggle with lower consciousness . . . or to be apathetic or feel helpless, or become immobilized with fear, but to stand in the power of our Love and say no in an active way.

No, I won’t be unconscious and deny what is going on. No, I won’t allow you to trash the constitution, take away my rights and the rights of my family and friends and our future generations. No I won’t let you commit atrocities with no repercussions. I won’t be apathetic and do nothing when I see my freedoms being denied or trashed. I won’t be your victim.

Yes, I will take action and I will stand in my power. I will take action in the world . . .. I will hold spaces of energy for everyone to see what they need to see and to do their part. I will send energy to the Congress and the Senate and to our leaders with the intention that they will be courageous and act with integrity. I will hold the world and the mass consciousness in a bubble of light every day so that we can all feel and access the help that is available to us. I will pray and ask for help. I will meet lower consciousness with love rather than reaction.

I will be part of the solution."

I believe every PWD needs to become active, on some level, to be aware that our needs are in dire peril, and to see ourselves, not as objects of pity, but as people with power. We can stand for ourselves and demand, as political individuals with equal power, the rights that we need and deserve.

The issues of suffering and pain are our own, to deal with as we must, in our own sphere. I do not believe that they should become a large part of the political dialogue that should ensue, as they displace the concerns that currently need to be paramount for us: home care, the end of benefit refusal/delay, the right to have access on a physical and psychological level, and so on.

We have a right and need to demand our place in the body politic, where we have been invisible for so long. NOW IS OUR TIME, OR WE WILL LOSE MORE THAN WE CAN AFFORD.

BASEBALL

bonniethesurvivor — Tue, 08 Jul 2008 11:12:00 GMT

Our little town is its own baseball capital. We have the Marlins here for spring training, and then, we have two minor league teams that entertain us through the summer. Not bad for access either.

I never could play, even when able bodied. That bat, hitting the flying ball, somehow was not the right combo for my hand/eye coordination. And then, running/sliding into the base. Oooh, too dirty. Sorry, not my game.

I am a much better fan. It started when I was a kid and went with a group to see what were then the Milwaukee Braves. I loved it! The crowd, the music, the hot dogs, all of it. I admit, I would have been happier with a 7 inning game; sometimes they seemed to go on and on. But still, the game was the game, and I was a true fan..

I offer the following quotations, of interest perhaps to some, in the fine spirit of the game:

“Luck is the residue of design.” Branch Rickey

“It’s what you learn after you know it all that counts” Sparky Anderson

“It’s supposed to be fun, the man says ‘Play Ball,’ not ‘Work Ball’ you know.” Willie Stargell

“It ain’t like football. You can’t make up no trick plays” Yogi Berra”

“Baseball is a harbor, a seclusion from failure that really matters, a playful utopia in which virtuosity can be savored to the third decimal place of a batting average.” Mark Kramer

“Some people are born on third base and go through life thinking they hit a triple.” Barry Switzer

***“Progress always involves risks. You can’t steal second base and keep your foot on first.” Frederick B. Wilcox

***”Don’t forget to swing hard, in case you hit the ball.” Woodie Held

I'm thinking of trying to swing hard today . . .

Quad Sailor Daredevil

bonniethesurvivor — Tue, 17 Jun 2008 00:45:00 GMT

"A quadriplegic sailor set off on a solo journey around the British Isles Monday in a boat she controls with her breath.

"Hilary Lister, 36, set sail from Dover on the southeast coast of England, steering her specially adapted yacht by puffing on a system of straws.

"She had planned to leave a week ago, but malfunctioning electronics and a broken mast delayed her launch

"As she set sail on Monday afternoon, Lister said she was feeling confident.

"'We've broken everything that can be broken and everything that could have gone wrong has gone wrong, so we've got to be OK now," she told journalists.

"Lister will sail for around 18 hours a day and will come into shore every night. An inflatable boat will sail alongside her and a crew will provide support on land. She expects the journey to take around three months.

"Lister, who is paralyzed from the neck down, has already broken sailing records. In August 2005 she became the first quadriplegic to sail solo across the English Channel.

"Her latest project will raise money for her sailing charity. (London, AP, 6.16.08)

GO FOR IT HILARY ! ! !

Co-Caregiver: The Circus!

bonniethesurvivor — Fri, 30 May 2008 10:43:00 GMT

I had not anticipated what would happen as I began my new role as co-caregiver in my marriage. My dear husband has been my primary caregiver for 22 of the 25 years we have been married. Now he is ill.

But, to my amazement, it has turned into something of a circus of clowns between us. We laugh hysterically as I try to maneuver the chair to support him in his weakened condition to transfer locations, he using a cane. We are overcome with giggles as I struggle in the kitchen, looking like a loon, trying to juggle pans with two hands that are far too heavy and end up in the wrong place at the wrong time, with the food a mess.

We have taken to playing music, pretty loudly, I must confess. This is a throwback to our early days of marriage when we were younger, when we ‘blew out our speakers’ with rock and punk tunes that made us dance, reggae that brought joy into our home, country that would make us tearful until we were laughing at the lyrics, opera that awed us and was played at a sound level that our neighbors would complain, and many other music forms that we just loved.

We are back there again, letting the music carry us on a wave of energy and creating an atmosphere where we can handle this new crisis. I am so grateful. It has helped bring some new fun into a situation where I didn’t think such a condition could exist.

At first I was filled with terror and anxiety for him. He has Hepatitis C from a blood transfusion following a car accident, and despite treatment, that illness has been worsening. Then, after I 'dragged' him to a routine, free skin cancer screening, my 'blondie' was told he seemed to not only be covered with basel cell carcinoma (relatively mild, common, and fairly easy to treat), but also appeared to have numerous squamous cell tumors which were not as mild a condition (rarely fatal, but a problem due to the extent of his tumors, and the fact that this type of carcinoma can spread).

The biopsies finally came back; the diagnosis was confirmed and the surgery followed to remove the tumors. At this time, there is no further treatment (such as chemo or radiation, etc., which he has already had for the hepatitis), but he now has numerous, deep, post-surgical sores. He is now also being treated for the basel cell carcinoma with a topical skin cream that has turned him fiery red, is painful, and almost his whole body is having a layer of skin removed because of the extent of the basel cells. Oh, so difficult, with the surgical sites not yet healed, and the hepatitis in full force.

All three conditions turned my usually even tempered husband into a very cranky fellow (and who could blame him?).

It is now my turn to step up to the plate. It is up to me to take my turn, to care for the one person I love most in the Universe, as he has done for me for so many years.

I need to do things that I did not think I could do, and that are, truthfully, causing me a lot of pain and fatigue. Just physically caring for him—bringing him drinks; trying to help make him more comfortable as he rests in an effort to recover; actually cooking, which is really beyond the range of my physical abilities, etc.; are causing me to stretch myself to do these “simple” tasks. In my chair, helping him move about the house, is a new form of choreography that we are developing as we go—trial and error.

Since he had the hepatitis diagnosis, things have not gone terribly well for him. It is a hard illness to fight—extreme fatigue, aches, mild memory loss, sickness following treatment, etc. Now, this new challenge of skin cancer diagnosis, treatment, and recovery period is difficult.

I could never have anticipated that taking care of Lovey would bring me more peace and love for him, and for life in general. I am grateful that I can actually sort of manage these things (I mean, at least we are ‘surviving’!). My spirit is actually rising because I can, in some small measure, return the gifts of care that he has lavished on me for decades.

What a surprise. What a gift. Who would expect that adversity could bring new happiness. Of course I am still very worried/anxious/fretful/hurting. But these issues seem to be taking a back seat to the serenity that I am gaining in being able to give him something that will help him as he has helped me.

And the very special gift is the last thing I will mention. The bond between us is growing even stronger. I thought it was strong before. 25 years of marriage, enduring the ups and many downs of the hurdles we have faced . . . that bond was there. But now, it is something even more. I NEVER would have expected that we could have joyful moments in the face of these difficulties. But we have laughter and new found fun as we navigate these problems. I can’t claim that it is coming from me alone. I do not think I am that strong. Somehow, between the two of us, we have found a further tie to help us through this crisis, so that I am able to go forward in the face of fear, living in the circus of life with love. I ask you all for prayers for his recovery.

Spiritual Sanctuary

bonniethesurvivor — Tue, 27 May 2008 17:27:00 GMT

Many of us are people of faith, who both seek and find spiritual sustenance in our relationship with God (by whatever name we identify Him/Her or the Universal Spirit). We may worship in different ways, and have different specific beliefs, but we of faith share some common bonds of intent. We desire to live a God centered life, with service, prayer, perhaps study, and communion with the Holy Spirit (again, by whatever name we use here).

Some folks at Disaboom have expressed interest in finding a way to interact with others of faith, with various goals in mind. Some are interested in how faith strengthens their ability to deal with disability, others are interested in how their disability has brought them to faith. The thought is that many are interested in a dialogue of sorts regarding their faith issues, in the context of disability, and their lives in general as people, regardless of whether they are disabled or not

It is my suggestion that the Spiritual Sanctuary Group can have this dialogue now through the use of our blog system, whereby we can post our various theologies and thoughts, and comment on each others’ blogs as we feel moved to do so. We can also use Personal Messages to form networks of like minded individuals for more in-depth discussions. In this way, we could share the common bond and need that has been expressed to form a more communicative community and discover the beauty and strength of each others’ faith.

It is my hope that if such a communication were to begin, it would be done in the Light of Trust and Compassion. We will certainly have differences of theology, and that, in my view, is just fine. What is important is that we use this format to reinforce and communicate about our faith, and not have a negative discussion about differences of opinion. The thought that this is a “Sanctuary” is uppermost in my mind: a place to find solace, comfort, and rest in God’s Spirit.

* * * * * * * * * * * * * * * * * * * * * * * * *

To start this effort, I will offer some thoughts about my own theology/practice. Perhaps others will then blog about their own belief systems, or how their faith has helped them. Perhaps some will comment on my blog, and a discussion could ensue from there. Whatever, I am offering this as a starting place for us to build a stronger faith community here at Disaboom for those who are people of faith.

MY RELIGIOUS PRACTICE:

It is my goal, and effort, to live my life in a God centered world, in communion with the Spirit, and living that message in my worldly actions and communications with others.

I was confirmed as a UCC Christian at age 13, and later ordained in the Episcopal Church in the 90’s. I have recently, following a move to a new city, joined a Methodist Church as I feel that the denomination I choose is less important than the faith community I am involved in. For me, in this time and place, this Church was the correct choice, for many reasons which I will not detail at this time.

I also have a meditation teacher, who teaches meditation in the context of an individual’s home religion. I have been a student of this practice since 1988. I attempt to spend a good deal of time daily in prayer/meditation. I also study the Bible, and attempt to follow my understanding of the teachings of Jesus, and the wisdom of the Jewish Scripture, and apply them to my daily life. From this study, I have the following understanding.

To follow a meditative practice, it is necessary to turn one’s eyes from the world, to turn the focus of one’s life toward following a path that will lead to communion with God. Now this does not mean LEAVING the world, in that service to others is a central part of the practice. It means understanding that the desires of the material culture of this earthly plane are not lasting, nor of true value. The meaning of God, for me, is love. That is what I try to find, practice, and value.

I believe the following, which is paraphrased from the teachings of my meditation group and explicated from the teachings of Jesus:

1) The game of love was created so the individual souls could journey through God’s creation and experience the creator in a myriad of forms.

2) The souls may feel separated from God, yearn for reunion and desire to travel

to the one true home.

3) We can have the following five guides to allow us to find the communion with the Holy Spirit:

a) Have Constant Remembrance of God

b) See God in all Creation

c) Love and Serve all

d) Be attached to God; don’t be distracted by worldly possessions or wealth

e) Yearn to go home

I find the issues which prevent true communion with the Spirit are the following:

- Anger and violence

- Possessiveness

- Selfishness

- Pride of wealth

- Lust for more

- Fear of loss

- Worry of not attaining

- Jealousy

- Resentment

- Separatism

- Criticism

- Sadness

- Depression

I have found the following thoughts/exercises useful in my daily prayer life and meditations:

- I try not to get trapped by my expectations—I Leave the Back Door Open--when one

door closes, another door opens. If my expectations of a person exceed their individual limitations, I am doomed to feelings of negativity to that person.

- I do my best and leave the rest to God.

- I thank God for Being so Gracious. Having the attitude of surrender to the ups and downs of life is a big help. I don’t know what is good for my spiritual progress or what I am being protected from. What ever comes my way I try to say, “Thank you God for giving me this gift.” When I am able to be deeply absorbed in God’s love, events in life aren’t good or bad, they are all within His will and I try to understand that they are just one step closer to going home.

- I yearn to be free of worldly attachments through the power of prayer.

*************************************

So, there, I have outlined my own personal belief system/practice. For those who would like a dialogue, please comment, or blog your own thoughts. They need not be so long as mine; you could feel free to be more Bible based in your statements . . .whatever is offered in the spirit of the Sanctuary would be fine. Please feel free to join this effort. My faith has held me up through my disability, something some of you may want to discuss. I simply offered my own general thinking as a way to start the discussion. It was my intention to Post this in the Spiritual Sanctuary Group, but for some reason the computer could not place it there. Peace.

Bonnie

Hackers Cause Seizures

bonniethesurvivor — Thu, 08 May 2008 10:57:00 GMT

TODAY’S AP BULLETIN INCLUDED THE ALARMING AND INFURIATING ITEM:

Hackers' posts on epilepsy forum cause migraines and near seizures --

"Computer attacks typically don't inflict physical pain on their victims.

But in a rare example of an attack apparently motivated by malice rather than money, hackers recently bombarded the Epilepsy Foundation's Web site with hundreds of pictures and links to pages with rapidly flashing images.

The breach triggered severe migraines and near-seizure reactions in some site visitors who viewed the images. People with photosensitive epilepsy can get seizures when they're exposed to flickering images, a response also caused by some video games and cartoons.

The attack happened when hackers exploited a security hole in the foundation's publishing software that allowed them to quickly make numerous posts and overwhelm the site's support forums.

Within the hackers' posts were small flashing pictures and links -- masquerading as helpful -- to pages that exploded with kaleidoscopic images pulsating with different colors.

''They were out to create seizures,'' said Ken Lowenberg, senior director of Web and print publishing for the foundation.

He said legitimate users are no longer able to post animated images to the support forum or create direct links to other sites, and it is now moderated around the clock. He said the FBI is investigating the breach.

Security experts said the attack highlights the dangers of Web sites giving visitors great freedom to post content to different parts of the site." (AP San Francisco 05.08.08).

* * * * * * * * * * * * * *

My condolences to the victims!

ALIEN BABY

bonniethesurvivor — Wed, 07 May 2008 02:03:00 GMT

Fear. The first response was fear. The pregnancy had been normal. The baby was not. My cousin and his wife had birthed a child with CP, and (before I was disabled), my first emotion was, I must be truthful here, fear.

What had they done? What had gone wrong? How could this happen? How would they manage? Would they give him up for “adoption?” [Such a stupid stupid question!]

But I had no experience with disability at that time. I had known a few kids at school in “special ed,” who were maybe not all that bright, but they were pretty average. I had not EVER encountered, in my very sheltered late 1950’s-1960’s world, any disabled children. Only on the Jerry Lewis Telethon (God forbid!).

So, when this unexpected, unprecedented event happened in MY OWN FAMILY, it was like a bolt from the blue. AN ALIEN CHILD!

I had considered having a child in the future, and now, suddenly, the thought that this child could be so, well, not normal, was terrifying to me. More terrifying than mortality.

With death, it would either be all over, or there would be some kind of afterlife. This thing, this CP, seemed like a penance from hell for my cousin. [At that point I was not even thinking about the little boy].

All I knew was, I did not want this to happen to me, and I wanted to know how it had happened to them. No compassion. No instinct to help. No desire to be a support to this cousin who had been a friend since my earliest memories. Only this cloud of extreme fear.

Years passed, and I learned many lessons from my cousin, his wife, and the child. They loved him, cared for him, he grew, and I learned to love him too. Their whole life changed. My cousin had just earned an engineering degree at a prestigious school, and now he was going to continue in a dead end job in a small town because the services were very good and the community was supportive.

It seemed to me, despite my love for this child, that he had somehow ruined my cousin’s life. I never once looked at it from the boy’s point of view until he was in elementary school. There I observed him as a ‘real person,’ trying to keep up with the other kids—most of whom accepted him well, by the way.

He is now an adult, fully trained and managing a career of his own. My cousin and his wife still live in that little town, with that little income in that little career because of the choices they made on his behalf, but he is a strong, beautiful, wonderful, loving young man.

The point of this story is that I learned from my own reactions how able bodied people can react to disability, even in their own close family. I believe that fear often plays a large role.

What I learned, for myself, is that a core reaction of an able bodied person can be fear, and that it is this fear that can cause so much of the discrimination that we are fighting.

Fear is a powerful emotion. Fear of the unknown. Fear of contagion. Fear of saying or doing the wrong thing. Fear of seeing those we love in pain. I believe that this is the part of the key. Disabilities have been, and still are, so unknown. As we fight for our rights, I believe we must also educate as fast as possible, because as fear lessens, acceptance begins.

Many of us have questioned how extreme family reactions can occur. Disability is so unfamiliar, even today.

We have made tremendous strides, and the ADA laws have helped a great deal. Children with disabilities are not hidden away, are in society, are in schools, grow into jobs. Adults who acquire disabilities also do not need to hide in the same ways that were formerly the case (we need only see the movie “Music Within” to understand to what I refer).

My dear baby cousin’s birth and childhood growth was a lesson for me as I learned to overcome my own fear. How ironic, we may think, that I became disabled myself in later years, at the point where he entered adulthood. But I prefer to think that I became disabled at the point where the world is starting to change because of the courage of people like my cousin and his wife to ‘fight the good fight’ and raise that boy to become a strong man.

I am embarrassed by my first reactions, but, then, I was young and inexperienced. Hopefully, I am a wiser, kinder, more educated person now. Yet my experience allows me to understand the seemingly incomprehensible behavior of those from whom we expect, and indeed perhaps have a right to expect. the most compassion and support.

DANCE OF LIFE

bonniethesurvivor — Tue, 06 May 2008 01:27:00 GMT

“You are the music while the music lasts,” (T.S. Eliot). A professional choreographer/dancer when my disability hit me, I did not appreciate this sentiment for many years. It took some powerful disabled artists to allow me to appreciate that the art that was in my heart/soul/mind was not restricted by the restrictions of my body.

As a dancer since age 4, I danced in NYC for 12 years. When my body gave way, slowly, surely, it felt as if my very being was eroded. I did not know myself as a person if I could not dance. And my dance career was over.

There is no way to describe the interface between myself and dance. It was not like being a lawyer—a job. It was a way of being. Just walking was a dance for me. So not being able to walk . . .well, where was I?

I felt like I was not. There wasn’t a me. This was a pretty big hurdle. It had nothing to do with the way people saw me (although the eventual wheelchair was of course an issue), but it had to do with my self image at its very core, and also my kinesthetic reality.

Finally, after many years, many other experiences and two newly developed careers (marketing executive, and, eventually ministry), before I became too disabled to do much more outside the home, I discovered a disabled painter at the local CILO who painted with the brush in her mouth.

This challenged me for quite a while. She had originally painted with her hands, but she did not give up, and still saw her art in her mind. Now my art had previously “come” from within my body, but it also came from my mind and soul, and those were still functioning.

Then, one day, I saw the performance of a “disabled/able bodied” dance company. I was confused, hurt, admiring, and amazed. My first reaction was, “get those able bodied people off that stage! They are getting in the way of what the disabled dancers are trying to do.”

Then I observed the people in the audience. One piece started with all performers on the floor, and it was not possible to tell who was disabled and who was not. It became more clear throughout the dance, and many in the audience were in tears.

It was a very powerful awareness experience for that audience. For me, it was more of an acceptance experience. I could see that the lines I had divided between able bodied and disabled people were, TO A LARGE EXTENT for me at that time, my own lines.

THIS WAS AN INCREDIBLE INSIGHT. I was able to extend it beyond dance into other areas of my life, and not divide the world so clearly between “them and us.”

Also, I was able to see that perhaps, in some way, I could still dance. Just because my body was not the same, it was still my body.

And now, a new, near miracle. Some things come in strange ways! I broke my shoulder last summer, and needed 16 weeks of physical therapy in a therapeutic pool. I discovered that I could MOVE in the pool.

Now I have graduated to “free swim” and I can actually choreograph in the pool. I have found some local dancers who are willing to give a try to using my ideas on land. I have also started working with some choreography in the wheelchair, although this is more problematic for me.

The main thing though, is that the CILO artist and the disabled dance company taught me that my ‘art’ is not about what I can’t do, but what I can and do want to do. I will never be the same again. My art is still alive. “You are the music while the music lasts!”

LAST STAND

bonniethesurvivor — Mon, 05 May 2008 19:09:00 GMT

Biggie was a 6’7” vet, double legged amputee, homeless wizard auto mechanic. He did not like to be “confined,” by places, systems, or ideas, and some thought those were 'mental health' issues; others thought he was just fine.

So Biggie lived on the street, doing auto jobs for the cognoscenti who knew how good he was, and how inexpensive his work could be. I won’t say he made out perfectly, but he managed in tropical Miami, and on the few really rough cold nights he would stay with friends.

He had quite a crowd of friends, too, from the street, from his business, from all over the city. Sometimes I thought everyone knew Biggie.

I met Biggie through a program of the Episcopal Diocese where we tried to find jobs and homes for disabled homeless people who wanted to get off of the street. Biggie made it clear he was not in that category, but was always finding some soul or other who could be helped by our program.

Biggie did not let the fact that he had no legs stop him from living the way he wanted, nor did he let the way others saw him bother him in the least. Homeless? So what, was his opinion. He had his backpack and tool kit, and cart, and that was what he needed. In his mind, freedom was the core ingredient.

Then, disaster struck Bigs in the form of a fast moving cancer. It took a bit of time to get diagnosed, too, because he did not want to see a doctor, get tests, etc. THAT took a little convincing, but friends persisted, and eventually he went.

The prognosis was bad. In fact, terminal. At that point, the agencies moved in, and tried to get Bigs into some kind of facility. NO WAY was his point of view. He did not want to leave his way of life. So he underwent some treatment while continuing to life on the street.

Then, it became too much. But by that time, it was too late to get into any kind of program that would house/care for him and get him benefits as he was an “off the books” kind of guy with no real legal records of his life. There was a waiting list. . .

We could not even get him into OUR program, because, technically, he was not looking for a job (so stupid!).

So, our program started a collection from those who knew and loved Bigs, and found a tiny little apartment, whereby he would now be technically eligible to be accommodated by home hospice. This was a huge victory as the apartment was only one block away from his former “corner” where he used to do his auto repair, and his friends could visit, and he felt at home.

He lasted there for 6 weeks. We scrambled over one weekend to furnish that apartment with used and donated curtains, a bed, a chair, a TV, towels, linens, pots and dishes, so the social workers would approve, and he could actually be “cared” for there.

He would sit outside that apartment in his own lawn chair for what were to be his last six weeks, and greet old friends like it was still the old days. He declared himself “never happier,” in that,

“if I have to go, I’m goin’ my way.”

One evening, my husband and I had arranged to go over with some dinner and have a visit, and did not find him home, and the door was locked. We left, puzzled.

We returned for two days, and then called the police. They opened the door, and there was Bigs, dead on the floor. There was a note, probably intended to be put on the door:

“I am gon to get coke. Be rite bak.”

Biggie went his way. He lived the way he wanted, and died the way he wanted—on his own, independent, and solid in his own values.

God, I miss that man.

NSAID REDUCTION --IN PAIN?

bonniethesurvivor — Sat, 12 Apr 2008 21:42:00 GMT

In a small, but significant British study, conducted by a pre-eminent RA specialist, the following was found:

"'Anything that can help to reduce NSAID use is going to be safer for patients.'"

"That quote comes from Dr. Andrew Bamji, and he knows what he's talking about – he's the president of the British Society for Rheumatology.

Dr. Bamji recently offered that quote to the BBC regarding a new UK study that shows how some rheumatoid arthritis patients might reduce their use of non-steroidal anti- inflammatory drugs by supplementing with a safe, natural agent that has been shown to supply many other healthy benefits as well.

[NSAID use puts a severe strain on the digestive system. How severe does it get? According to the American Gastroenterological Association, long-term NSAIDs use is responsible for well over 100,000 hospitalizations each year due to upper gastrointestinal adverse events, and may contribute to an astonishing 16,500 deaths per year.]
But many patients with rheumatoid arthritis would find life unbearable without NSAIDs to relieve their pain.

In rheumatoid arthritis (RA), chronic inflammation of the joints and soft tissue around the joints is prompted by an autoimmune reaction. The key word in that sentence is "inflammation" – exactly the problem that NSAID use addresses, but at a potentially high cost.

Based on research that shows omega-3 fatty acids reduce inflammation, researchers at the University of Dundee and the University of Edinburgh recruited nearly 100 RA patients for a cod liver oil intervention study.

STUDY PROFILE
The BBC reports that this is the third study conducted by the Dundee/Edinburgh team in which patients were able to cut down on NSAID use with the help of cod liver oil supplements.

--------------------------------------------
Too much…or just enough?
--------------------------------------------

Of course, many RA patients who use cod liver oil daily will enjoy other healthy benefits because this type of fish oil is an excellent source of vitamin D and omega-3 fatty acids – two of the most important nutrients in the prevention of cancer and heart disease.

But what about that dosage? 10 grams per day? Isn't that pretty high?

Putting that question to HSI Panelist Allan Spreen, M.D., he answered that it's actually about right when you're treating a major challenge like RA.

Dr. Spreen: "Like vitamin C, to really get a 'drug-like' effect, you have to get pretty heavy on the dosage. That means lots of capsules (or nasty tasting oil), which upsets some people's stomachs and leaves them 'fish-tasting'.

"Similar doses can be used on depression, bipolar disorder, high triglycerides, and other issues tied to inflammation besides arthritis. [emphasis added] But it also requires (in my opinion) 400 iu of vitamin E mixed tocopherols twice/day, to stop the free radical formation that comes from even the 'good' polyunsaturated oils."

Talk to your doctor before adding cod liver oil to your supplement regimen!

IS THIS A NEARLY PERFECT FOOD?

Researchers now say "YES." Gram for gram, this discovery packs awesome amounts of Omega 3 fatty acids, plus:
Not for EVERYONE, but something to consider.

The above was shared in a newsletter by <www.HSI Baltimore.com>.

LOVEY GETS HIS IPOD ! !

bonniethesurvivor — Tue, 08 Apr 2008 19:48:00 GMT

ANOTHER WOW! ! This has certainly been my month for good luck. This time, Lovey (aka my husband) gets his long awaited Ipod thanks to the Disaboom Sweeps. For any who have followed this saga, I have been trying to win this for him as an Ipod was “given” to him as a present 2 years ago, and then never “delivered” because there was always some expense or another we had to meet (my meds co-pays, the car insurance, on and on).

He is such a sweetheart, he never mentioned it, he never said well “why can’t we just budget the [non-existent] money?” I haven’t said, but he used to be a film professional, and among many other film gigs—editor, director, producer (he won an Emmy), he did music for movies. He lived in a world of music

We blew out our speakers some years ago when we were a bit younger and wilder, playing music just a bit too loud, and have not had a decent sound system since.

Then, recently, to my intense regret, I actually rolled over the cord to his keyboard with my wheelchair, and broke the darn thing as it fell to the floor. He looked at it, he looked at me, and it was broken but did he break my little neck? No, he said, “well, it was getting old anyway.” Now that is what I call more than sweet. He played that thing all the time (I promise I did not roll over it on purpose . . .)

So when this Sweeps contest came along, I thought, maybe here is my chance. I had already been gifted in an amazing way as I am losing my teeth and need a full mouth reconstruction ($25-30,000), and after months of fund raising effort was suddenly presented with the gift of the reconstruction, for free, from a local non-profit who had received the charitable gift from a group of oral maxial/facial surgeons (see blog of 3/29).

So I thought, perhaps that was my good luck for the month, or the year, but I kept working on these blogs. Not that I wrote about the Sweeps mind you (at least not after the first paragraph!), but I really wanted to win.

And we did. What could be greater? I haven’t been getting emails, as I am guess many of you know, but I opened up the box anyway today and there was the notice. I sure grabbed that phone fast to give him the news. We’re both happy campers Thank you Disaboom.