Hopeworks
The Blount County chapter
Of
The Depression and Bipolar Support Alliance
Volume 1
Number 6
May 29, 2008
Do not store up for yourselves treasures on earth…. For where your treasure is there your heart will be also… (Matthew 6:19-21)
…Love your neighbor as yourself…. (Luke 10:27)
This is the sixth newsletter. Wow!!! Who would have ever thought so much would happen in such a short time. We have been blessed in so many ways. So many people have contributed in so many ways. Virtually every door we have approached has been an open door. Our thanks go to everyone who has crossed our path or been part of Hopeworks in any way. You have helped a good thing to happen.
We talked recently to Ingrid Deetz who is the chapter coordinator for DBSA in Chicago. She was very positive about all we are doing, but she asked me a question that I didn’t know the answer to at the time. Is Hopeworks a faith based program? My first answer to her was no. Linda and I both come from a perspective of faith. We both feel like Hopeworks is a calling given to us, but neither of us wanted Hopeworks to be preachy or “religious.” As most of you know we have been through more than a few rough times, as most of you also have. We wanted to say to people that our hard times or your hard times are not caused by your lack of faith or anything like that. For us a major part of our survival and triumph has been the role of our personal faith. Life I think is charted by what you live for. So I guess she was right. We are faith based. It doesn’t really change anything I think, but it seems important to publicly say.
This has been a difficult month for us. I became unemployed about 2 weeks ago and I want to publicly thank everybody for their support and prayers. I can not put into words how grateful both Linda and I are for you.
We have had two meetings this month and hit home runs with both .
Psychiatrist David Snow spoke at the first meeting. When we first started Hopeworks I was told by many people that Dr. Snow was the expert in this county about bipolar and he lived up to his press clippings. In particular I liked his story about how lithium was discovered and the first bipolar patient treated. He had a lot of stories to illustrate his points . He made his points in such a way that everyone could apply things to themselves. He took a lot of time to answer questions and he listened. He really listened. The comments of everyone going out the door were very positive. It was an evening well spent and those who missed it really did miss something special. Dr. Snow indicated that he would like to come back in a few months. It is worth not missing.
The second meeting was honored by the presence of State Senator Raymond Finney from Maryville. His subject was the state of health care in Tennessee. He described in detail how TennCare was given birth and the events that brought us to the present day. He talked about what was going on now and what he thought prospects for the future were. He also talked about the mental health care in the state.
The most important thing he did was what Dr. Snow did. He listened and answered lots of questions. He talked with people about their specific situations and options that they could look at. The stories about people needing health care and facing life without it were heart rending. I think everyone who left the room knew that hard times are ahead for many of us.
The first meeting next month will have attorney Benjamin Burton as guest speaker. He is an expert in social security disability. Many people in Hopeworks can testify to how unfriendly the Social Security system can be. He can help. Come with lots of questions.
One of the major events this month for us was the whole issue of TennCare. Many very sick people are about to be taken off TennCare this year. There was an amendment to the budget which provided for a safety net to be provided for people whose lives would be put in danger by the loss of their insurance. The amendments did not pass. There will be no safety net.
Many people called or emailed legislators on this matter and I want to congratulate you and thank you for all you did. Many of you I tortured with emails about taking action. I appreciate you putting up with me. You were great. Just remember this was only a battle and not the war. If you want to learn more go the website of the Tennessee Health Care Campaign.
Linda and I have started a new website called findinghopewithoutTennCare.org. The goal is to try to provide concrete information that can help people survive and triumph in the times ahead. It is just begun and we only have 3 pages on it now, but over the next few weeks a lot more material will be put on it. Please visit and give us your feedback.
Also do not forget hopeworkscommunity.com. New material will be put on in the next couple of weeks. I hope you will check it out. Two national websites- hopetohealing.com and bipolarblog.com have placed links to Hopeworks on their sites. We are the only local website so honored.
The following essay was written about what I think is the fundamental issue of our health care system. I have submitted it to a couple of national magazines. I do not know that they will publish it, but I do want to take this opportunity to share it with you.
What about when other people cost too much?
Much of what you do with other people depends on one simple question: “Do they cost too much?”
Much of our health care system is based on the central idea that people can cost too much. For all of the arguing and debate most of the plans we hear politicians talk about are attempts to solve that basic issue. How do you make people who cost too much cost less?
In Tennessee the state insurance is called TennCare. Depending on whose numbers you believe, in the next year somewhere between 140,000 and 180,000 people will lose their benefits. The kinds of medical problems these people have are for the most part our worst dreams: cancer, heart disease, chronic mental illness, kidney failure, and an array of other genetic or chronic conditions that seem to make the idea of a happy life little more than a cruel delusion.
Most of us like to see ourselves as giving people. We expect to do for others. We look down on those whose lives are defined solely by what they acquire or what they have. We look at the message of Jesus which seems to be that others don’t cost too much. After all we didn’t cost too much is what He might tell us.
The question of what happens when people cost too much is really a question that you can’t get around. As long as our health care system is based on that basic assumption, times being what they are, people will always cost too much. And we will talk ourselves into believing that the only responsible course is to refuse to pay.
What has happened in Tennessee is that the local communities have found that although the state can indeed refuse to pay they cannot escape the cost. In 2005 in our first attempt to solve the problem we also took away benefits from over 100000 citizens. The mental health system, for example, now has huge holes and gaps. Jails have become our biggest mental health treatment centers. Experience is clear about one thing. People who come to jail because of mental health issues come back over and over again.
For a new patient to get an appointment at the local mental health center in the county where I live is an 8-12 week wait. What does someone with a mental illness do who has to wait? They do what any other sick person does. They get worse and worse. In the end they give up on a system that further adds to the injury of their illness. The message is clear even to the mentally ill—“You cost too much.”
In the next round of cuts somewhere between 15,000 and 20,000 with primary mental health diagnosis will be cut off from benefits. I don’t know how many of these people are from my county but it looks like we are going to solve disaster by covering it with chaos.
I have a personal stake in all this. My wife is one of those people who is going to lose her TennCare. She is one of those people who cost too much.
She has bipolar disorder. She also has had epilepsy since birth. Our story is I think indicative of the stories of many.
7 years ago a good day for Linda was 10-15 grand mal seizures. There were not many good days. She finally got hurt real bad in a seizure. She fell down a flight of stairs, hit her head on the banister and broke her face in a seizure. She literally broke her face. She looked like I had beaten her half to death with a baseball bat.
The doctors told us what our experience already told us. No medications were going to stop the seizures. They did a lot of tests and finally recommended that Linda have brain surgery. After a lot of prayer we finally agreed. They took out her amygdala and hippocampus. The next 18 months were a nightmare. She came out of the surgery with a whole host of disabilities that she never had before. Most of these she deals with to this day. Her short term memory was shot. She has never seen a rerun. She many times can’t concentrate and it is hard for her to learn many things. She loves to read but sometimes her comprehension just disappears. Many times she can’t get the words out that she wants to say. She could get lost going from one room to the next and that is just the tip of the iceberg.
After a year the seizures came back and they came back with a vengeance. 4 years ago she was in Vanderbilt Hospital having a hundred seizures a day. In the last 7 years I have had to quit work 3 times because it was too dangerous for me to be away from home. The last time I was out of work for about 9 months and we survived purely through God’s grace.
Last year after going through a major emotional crisis Linda was finally diagnosed as bipolar in addition to everything else. We had all known for a while other things were going on but there was so much that we couldn’t even see what now looks like it was right in front of us all along. Linda thinks she has always been bipolar. Maybe it was at least partially a gift of the surgery. Whatever it was lost in a thousand other battles.
We have now started a support group we call “Hopeworks” part of the DBSA. What is so strange is that maybe for the first time hope has begun to work for us. It appears more than wishful thinking.
TennCare has been a lifeline for us. In the last 7 years Linda has been in the hospital 16 times and went through 5 surgeries. Right now though Linda is in the best health of her life. In the last 4 months she has had 1 grand mal seizure. The bipolar with the right meds, therapy and lots of support is being managed successfully. Life for her finally has some opportunity, after years of each day simply being a process of waiting for the next thing to go wrong. But……………….
Without TennCare it wouldn’t have been possible. What is most important is that the miracle of Linda’s health is not a done deal. It must be done and redone each and everyday. We were in hell and managed to find a way out. The path back is always there.
We have one sword hanging over our head. Several years ago a neurosurgeon told Linda that she had another spot on the other side of her brain that was caused by seizure damage. He told her with time if seizures continued unabated that she would be unable to do anything for herself. He recommended more brain surgery. Her neurologist said so much tissue had been taken out already that she might come out of surgery a vegetable.
She takes 5 medications a day related to either bipolar or seizures. We checked the other day. One of them—not the most expensive one—costs $869 a month. Without TennCare this sword gets closer and closer to our head.
Linda is the kindest and best person I know. She has a faith in God that takes my breath away. According to our health care system she costs too much. Soon she will not cost them anything, but the damage done to her life will be incalculable.
Many other democracies believe that health care is a human right. As long as we accept without question the idea that people can cost too much then it will never be a human right here. People who have the bad luck to be sick or disabled will find in the end they have committed a crime from which they have no appeal.
I would appreciate any feedback you have about this essay.
Larry and Linda Drain
Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit. (Romans 15:13)
God bless each and every one of you
Hopeworks
The Blount County Chapter
Of
The Depression and Bipolar Support Alliance
April 25,2008
Volume 1
Number 5
The past month has seen a lot of activity for Hopeworks. We have had two Tuesday night meetings that it seemed like everyone got a lot out of .
Dr. Brent Coyle, the medical director at the Blount Memorial Hospital Emotional Wellness Unit, spoke about suicide. He talked about warning signs and what people could do if they thought someone close to them was at risk. He also talked a lot about some of the things the hospital was trying to put into place to help people deal with suicidal issues. Finally he talked about the relationship of emotional illness to suicide. The best part of his presentation though I thought was his interaction with people in the question and answer session. A lot of people talked about how they had struggled with the issue. One new member who talked about how she was struggling with suicidal thought right now described it later as “…exactly what I needed when I needed it.”
Chaplain Cecil Cook of Ft. Sanders Hospital and Barry Clanton, pastor of Blount Christian Church talked about the subject of “finding hope in hurting times.” Again it was a superb presentation. There is no way to summarize it in a few words. Both speakers were superb.
I liked the story of Floyd that Cecil shared. Floyd was the victim of an accident at a sawmill. He lost both his arms and both his legs. He told Cecil, “I’m okay. I am more than my legs and more than my arms….”
I think that is one key to hope. Always remember you are more than your circumstances. Your disorder need not define you.
We continue to add to the website- hopeworkscommunity.com and more and more people seem to be visiting it. In the last week alone we have had more than 30 new people visit it. Keep spreading the word.
We need your help though. 3 pages of the website offer chances for your participation. “About you” gives you a chance to tell your story and share it with others. I think we gain as much from sharing stories as any single thing we do. You have a chance to reach and help a lot of people. Please share your story.
“Stigma” gives you a chance to tell others how you have had to deal with the stigma attached to your disorder and how you have managed to cope with the myths and assumptions that so many people seem to have about you. So many people struggle so much with this. Again please share.
Finally “the hope page” has just been added. I would like to share with others your list of how you have found hope in your life and made it work for you. I can’t think of a neater treasure to share. Please contribute. I look forward to hearing from you. You can contribute to all three pages, or any one you feel like you have something worth saying on.
TENNCARE
Tenncare has become a major issue. It looks very much like as many as 150000 are in risk of losing their Tenncare this year. You are especially at risk if you got on Tenncare because you had SSI and you have for any reason lost your SSI. If you hear people talking about the “Daniels class” these are the people being referred to . If you are not affected there is a good chance you know someone who is. People with mental health diagnosis make up a healthy portion of the Daniels Class. Linda is one of them.
We attended a public forum in Knoxville dealing with this issue attended by several state legislators. Both Linda and I had a chance to speak. I urge you to contact your legislator and share your feelings on this issue with him.
On Monday April 28 Linda and I are traveling to Nashville. We have been asked to testify at hearings being held by the TennCare Oversight Committee of the State Senate that hopefully is trying to find a solution to this mess before countless people are hurt needlessly. By the way Senator Raymond Finney the State Senator from Blount County who is speaking at Hopeworks in a month is the chairman of that committee. Please keep us in your prayers.
There is another conference that you need to know about and that is worth thinking about attending. It is put on by an organization called the Mental Illness Awareness Coalition. The program is called “Breaking the Silence” and it is Friday May 2. Many of us have had the experience of feeling like we were looked down on in church because of our disorder and this conference looks at ways to help the church to become an active and effective force in the recovery of anyone trying to deal with any kind of mental illness. If you would like more information please let me know.
After one false start we are finally ready to start Saturday meetings. Obviously there will be many people who Saturday meetings will not be possible for, but we have also heard many people say they are really looking forward to this. May 10 is the first meeting. It is scheduled at 11:30 at Blount Christian. Please pass the word.
A special thanks to Pastor Barry Clanton whose support has made it possible for us to use the church on Saturdays.
Plans right now are to meet on the first and third Saturdays of the month. To take advantage of the good weather occasional meetings will be held at Springbrook Park, but we will give advance notice of that. If weather interferes with a planned meeting in the park, the church will be the backup.
One member has shared with us an idea that she had to further add to Hopeworks. Her idea is that people could volunteer to be what she called “care partners.” A care partner would assume responsibility to call 3 or 4 people from the group between meetings just to check and see how things are and if we can do anything to help. I really like the idea. Every person who comes to Hopeworks should get the message that we are vitally interested in their health and welfare and will do anything we can do to help. Please think about this. I want to discuss it at the next meeting. If enough people are interested I would like to see what we could do to make it a reality. All of us have been in the position where a call from someone who cares is literally a lifesaver.
If you have any ideas I would love to hear them. This is everybody’s group.
We are making an effort to network with as many other organizations as possible, both to spread the word about Hopeworks and to find out what other resources are out there that may add to the lives of people in Hopeworks. Recently we have had contacts with NAMI and the Tennessee Mental Health Consumers Association. Both seem very supportive of Hopeworks and I hope as time goes on we will discover that they have resources that will help you in your life.
Again thank each of you. Please continue to spread the word. More people are starting to bring family members or neighbors to meetings. Everyone is welcome. Thank each of us for the effort that you have shown to be part of Hopeworks. If hope really does work it is because all of us together are making it work.
God bless each of you.
Until next time.
Larry and Linda Drain
“Hopeworks”
Blount County Chapter
Of
The Depression and Bipolar Support Alliance
Volume 1
Number 4
March 30, 2008
The next meeting of “Hopeworks” will be on April 8, 2008. Our speaker will be Dr. Brent Coyle. Dr. Coyle is the medical director of the Blount Memorial Hospital Emotional Wellness Unit. His topic will be “dealing with suicidal issues.”
April 8 represents a landmark for “Hopeworks.” It will be the 3 month anniversary of our first meeting which now seems so long ago. So much has happened that it is hard to know who to thank or what to mention.
I remember in the first meeting the disappointment from people when we told them we were only meeting once a month. We changed quickly to twice a month and then our last meeting the neatest thing happened. People in the meeting brought up the idea that they wanted to go to weekly meetings. I have watched people grow tighter and more open to sharing and it is obvious that some good things are happening.
Our hope is within the next 3 weeks to go to weekly meetings. The schedule will be a little different, but I think that is a real good thing. We will continue to meet on the 2nd and 4th Tuesdays of the month, but will also start to meet on the 1st and 3rd Saturday mornings of the month. There are still details to work out. We may not be able to get Blount Christian on Saturday mornings and may have to find another meeting place for that meeting, but I don’t see that as more than a temporary hurdle. We will announce on the 8th when Saturday meetings will start.
I want to really thank everybody who has done so much to make “Hopeworks” a neat place to be, that is helping to bring positive things to people’s lives.
The speaker schedule for coming meetings is:
· April 8- Dr. Brent Coyle: Dealing with suicidal issues
· April 22- Chaplain Cecil Cook (Ft. Sanders Hospital) and Pastor Barry Clanton (Blount Christian Church): Finding Hope in Hurting Times
· May 13- Dr. David Snow: The Treatment of Bipolar Disorder
· May 27- Senator Raymond Finney: Healthcare in Tennessee- changes, challenges, and risks
· June 10- Benjamin Burton, attorney at law: Social Security Disability
The state DBSA meeting will be held in Nashville on Saturday April 5th. The agenda will include ways to help individual chapters to grow, and how we can become more effective public advocates as well as several other topics. Linda and I will be going and anyone else would like to attend is more than welcome. We will meet in Nashville at 11am for lunch and the meeting will follow that. Let us know if you would be interested in coming or if there are particular points you would like for us to make.
The Mental Illness Awareness Coalition (MIAC) is a relatively new organization in Knoxville whose focus is to help reduce the stigma that so many people with mental health diagnosis face everyday. Many people in “Hopeworks” have to struggle everyday with the question of how much is safe to tell the people they work with or for about what is going on with them. We will be telling you more in the future about exactly what they are doing to help. On Wednesday April 5 Linda and I will be attending a meeting of the MIAC. “Hopeworks” will become one of the member organizations that right now includes such organizations as East Tennessee Mental Health Association, Helen Ross Mcnabb Mental Health Center, and Peninsula Hospital among others. Our hope is that by becoming involved in this organization and this struggle “Hopeworks” can be an effective voice in making this community a better place to live for anyone who has the misfortune to have mental health issues.
We have a website!!!!
It is hopeworkscommunity.com. We have just registered it with Google, Yahoo, and MSN so it will be at least a month before you can use one of these search engines to find it. If you go to the address bar and try to link directly to it though you will be able to get on it. We will continue to build it and add topics, but we would greatly appreciate any feedback that anybody is willing to give.
There will soon be an active DBSA chapter in Oak Ridge. The organizers are Sue Atkinson (who should be visiting our next meeting) and Bob Pfeiffer who many of you have already met. Sue tells me that she hopes that meetings will start in May. Please keep them in your prayers. They are in ours and we will support them in every way we can.
One of the most alarming stats that I have learned since becoming involved with “Hopeworks” is this: 25 to 50% of people diagnosed with bipolar disorder will attempt to commit suicide. That is absolutely startling when you think about it. For many people who have attended “Hopeworks” suicidal impulses and feelings have been one of the most terrifying issues they have dealt with. Effective treatment for bipolar disorder can really be a life or death manner.
This is one of the reasons we have asked Dr. Coyle to come and speak. However we would like to do more to deal with this very real threat. “Hopeworks” has recently become involved with the East Tennessee Suicide Prevention Network. If you are interested in taking an active role in this personally please let us know.
If you go to the TSPN website and go to this month’s newsletter you will find a story about “Hopeworks” on page 2.
In addition to TSPN we have taken another step. I am becoming the field liaison for SPANUSA (Suicide Prevention Action Network) for this congressional district. SPAN is a national organization that has partnered with the DBSA in the past in the cause of suicide prevention. My role will be to become, I hope, an effective public advocate for this important cause as well as other mental health issues. Please keep me in your prayers in this effort.
There is another very important meeting coming up that I hope you will try to attend. On Friday April 18 there will be a meeting in Knoxville at the Cherokee Health offices off Western Avenue. The meeting is being organized by an organization called the Tennessee Health Care Campaign. Please go to their website to get information about what they are about. You will be impressed by what you read. Over the next year changes in state policy will put as many as an additional 150,000 Tennesseans in danger. 1 out of 6 Tennesseans currently have no healthcare and the number looks like it is going to rise. Many people with bipolar disorder depend on TennCare to get the care and medication that gives them any chance at a good life or life at all. This meeting is a community forum to which state legislators have been invited to hear the concerns of their constituents as well as other ideas to keep a tragedy from happening.
This is worth attending and I hope you will. Contact me if you need more information. Go to the Tennessee Health Care Campaign website.
We hope in April to have another social night out where people just go out to eat and have some fun. We will let you know more about the date. Let us know if you think you might be interested.
RECOMMENDED READING: If you do not know who Julie Fast is I recommend that you find out. She has bipolar disorder and is one of the best and most prolific writers on bipolar I have found. She has a website you can visit. She has written several books. I am reading Take Charge of Bipolar Disorder right now and have found few books written in such a easy to follow way with as much practical and valuable information in it. READ IT. You will be glad you did.
Well that’s it for this month. Let me know what you think of this newsletter. Hopefully there will be something in it that will be helpful to you.
Thanks again to the many people involved in “Hopeworks.” I am thankful everyday for you.
Let us know what we can do to help.
Larry and Linda Drain
9514252