Angie's on CTN's Homekeepers Show today!

I'll be on Homekeepers on CTN (Christian Television Network) on Tuesday, May 3rd.
Eastern times are 5:30 am and 1 pm. Mountain times are 3:30 am and 11 am. Oh yes, I recorded them. I'm a night owl, but I hit the hay a few hours before that time slot airs :-)

This particular interview is very open and transparent because Arthelene Rippy was very interested in a couple of specific topics:

Brain donation

My mom's last words

And was I angry with Jesus?

You're invited to hear the answers.

We taped last week while I was in Florida for Christian Retailing's Retailing Reboot conference. What an awesome experience, both the conference and the TV interview!

You can find Homekeepers on Dish, Direct TV, or the CTN satellite channels.
http://www.ctnonline.com/Watch.html (I have to admit on my mac laptop, I had to zoom to view this graph of the show line up.)

Direct TV CH 376
Dish CH 267 & 9399 
Sky Angel IPTV CH 136
Glory CH 117

Appreciatively,
Angie

Gems of Wisdom Book Covers and New Release Date!

Wow! My new book covers are here. They're really here! I'm excited to share them with you and see what you think. There are 2 book covers because the first book, Gems of Wisdom, is the full read non-fiction, Christian Living book. Then the second is the companion workbook. They release March 1, 2011 from Journey Press: an imprint of Sheaf House. Without further delay, the unveiling... Well? What do you think?

Mrs. Elite Ambassador Pageant Results

I'm excited to share a new accomplishment with you all today. I entered an essay in the Mrs. Elite Ambassador Pageant, a national level contest.

The point of this pageant is community service, something very close to my heart. I live very intentionally with a heart of volunteerism. I believe everyone has a niche, something they are passionate about. For me that is helping others to have better relationships and teaching awareness about brain donation. I hope to continue educating people about the importance of brain research in solving mental illness and other brain diseases and disorders.

Each year, one Mrs. Elite Ambassador is added to the sisterhood. She keeps her title for her lifetime and continues her work in her own niche.

This is the second year of the competition. The rules are that she must be married for at least 6 months and write an essay about what marriage means to her as well as what she plans to do with the Mrs. Elite Ambassador title.

I won 1st Runner-Up 2009!


Thanks for sharing my fun today! Maybe I'll have the chance again sometime to win, but it was worth taking the risk for the opportunity to reach out for something I believe in.

Do you take chances?

If you had the opportunity to win a title like this, what would be important enough to you to share with others?

Angie

Researching My Little Heart Out

For the last 2 days, I've been working in between things to learn more about pirates and about the Black Prince's Ruby. 

Both are for sections of my book, Insanity Rules: Gems of Wisdom.

So fun!

Now I have some other news and some pretty plain talk. 

I've been invited to see an autopsy for research on the brain donation chapter. There's a challenge for me. 

I've been trained (although a long, long time ago) to handle city-wide emergencies, trauma and emergency management by the airlines. I've handled some huge events like a truck/van accident on a mountain pass and heart attacks at the airport.

What I learned about myself in those experiences? I can easily direct and delegate. I can even handle traumatic injuries. 

But I've never seen a huge surgery like this and it makes me a tad nervous.

So you're wondering, is she going?

Can she handle it?

Well, let me answer for you. 

Yes. (And the doc is taking some steps to help me manage my nervous expectations by draping what I don't need to see. Then little by little, I can learn as I'm ready.)

My purpose is to learn more about the extraction of the human brain in order to help other people understand when they choose to donate their brain or a loved one's brain for the study of something like schizophrenia or dementia.

Something that is going in my book: All brain, organ and tissue donations allow for open casket funerals. I didn't realize that until I spoke with my friend, the doc who did my mom's procedure.

Why is that important? 

Because many people are afraid to donate for fear that the funeral will be too hard to handle. Knowing this small detail can help a lot of people overcome a common misperception, that their loved one (or self) will be somehow mutilated, and opt for the donation.

Personally, I did donate my mom's brain for schizophrenia study.  I couldn't even tell the procedure had happened. (There's a past post in the archives about this topic.) We had a private viewing prior to the memorial service because we buried my mom in Colorado. I chose cremation to allow for travel needs and so the funeral was actually two months later. But it was still important for me to process her death in my emotions with my family. The viewing was normal and there were no tell-tale signs.

Organ donation is a way for the dead to help the living keep living. Brain donation is a way for the dead to help the living continue to learn. (Paraphrased from Doctor W. L. Kemp.)

Thinking about it that way, either choice is a gift to the next generation. Allowing study may or may not help someone immediately but it is a gift to generations upon generations from what is learned about disease, conditions and how the body works.

Would you consider brain, tissue or organ donation?

Why or why not?

Fun Piece of News!

Next week I will get to sit down with the Deputy Medical Examiner for the State of Montana. I have to tell you how much I respect and appreciate him. Dr. Walter (Willy) Kemp is a huge part of my life.

I met Willy not quite two years ago over the phone. I had to set up something that was very difficult for me but also very necessary. My mom was in the process of dying. (There are past posts about mom's schizophrenia, my legal guardianship, and the subsequent choices we had to make on the right side bar of this blog.)

Willy is an amazing scientist. He had donated his father's brain to the study of CJD. Creutzfeldt-Jakob disease (CJD) is a very rare and incurable degenerative neurological disorder (brain disease) that is ultimately fatal. So he had direct personal experience with some of the symptoms that I dealt with as the daughter of a schizophrenic.

I called the MT Crime Lab as a possible help to find a doctor to provide services for my mom's brain donation when the time came. And it did come on March 1, 2007. Willy volunteered to help me with the necessary procedure.

He agreed to be on call for weeks as we waited for that sad moment. Then he got out of bed at 1a.m. to follow through with the plan to retrieve and donate my mom's brain to the study of schizophrenia. Why? Because we both believe so strongly in finding help for the future and for others. Maybe our parents can be one more link in the chain toward a better life for someone else.

I'm also a brain donor. I'll be telling these stories in full as I finish writing Insanity Rules.

Dr. Kemp, Michelle Sutton and I have teamed up to share coping skills and paradigm shifts for other people dealing with mental illness (or diseases that cause similar symptoms) in their loved ones.

If I could offer any tip off the top of my head for someone in the hurricane of this issue right now, it would be:
Preplan. It doesn't matter if you are planning a medical procedure or how you will handle the next big emotional blow up-the one you know is coming because they always do -preplan. Set up in advance how you will act. By rehearsing things that are hard to handle, you will always be in a better frame of mind. Not only that, but if you fail, you fail forward:-) You've taken steps to raise the bar.

I know several times I meant to be patient with my mom in her delusions. I'd practice and practice what I would say or how I would maintain my calm only to lose it. But because it was in the top of my mind, I was so much better the next time.

Okay, think of it this way...You want to learn to shoot a basket. You shoot, miss. Shoot and miss. This goes on 30 times. But each time your ball is closer to the basket until on number 31-swish. Would you stand still? NO! You dance around the gym. You feel joy and exultation.

Break down the behavior you want to change in yourself to practice behavior. Now practice until you swish:-) It's about the character of patience and perseverance. Picture it mentally just like an athlete does in preparing for the Olympics.

Willy and I set a plan in motion and it succeeded. Because of that, my mom and I have something to offer the world-a chance to keep practicing until the cure or treatment becomes a swish!

Welcome aboard, Willy Kemp, to the creation of Insanity Rules.

Welcome to our journey, friends, we hope it will make yours easier.

Angie
PS Remember to visit the FAITH Girls blog for part 2 today. (I post every Wed.)

What is the big deal with brain donation?

I'm at a year. One year. What the heck happened to that year?

One year ago I was putting together a team. This team was so important to me. It would make the difference in the value of a human life.

One year.

And now that time has past. It passed so fast that I can hardly remember many of the days in between. Like the pictures of her above, the top is her 18th birthday. My daughter is now 18. It feels like a paradox. The people in the photos below are people that are still alive and knew her well. She mattered to them. She mattered to me.

The team had doctors, nurses, family, and friends. It had transfer options, hospital and hearse involvement. Why?

Because I knew my mom was dying. I couldn't let her go without somehow making her life matter. Somehow making what we'd been through have a purpose!

March 1st is coming up. That's the day it all went down. It went down and I began a climb toward purpose. But was it hers or mine?

With Mom's schizophrenia acting as a character in our own daytime drama, I couldn't let it win as if the mental illness was the victor. So I planned and plotted. I prepared and set in place something I felt would make a difference.

Mom died. I dealt with it in the best way possible. And then I didn't.

I prepared. I planned. I had it in my mind that I could do this thing. i could donate her brain because it would benefit mankind. It would make some other mother and daughter have what I didn't have, relationship.

Then at the last minute, at 11:45p.m. on March 1st, I panicked. I had to ask over and over if she'd really passed on. I had to have the nurse check several times. I stood there. Me. I had my hand on Mom's chest when she took her last breath. I knew she was gone! But I didn't want to believe it.

It would be the ultimate moment that I had to realize I could not ever connect in this world with her on a human level. I never could and I never would. The mental illness would forever be the wall between us. It meant I had to realize that someone would actually perform the procedure.

I was terrified that I couldn't make that decision. Terrified!

I didn't want to cause her anymore pain. I didn't want to make a mistake. I didn't want to be heartless.

Everything I'd been doing for almost 7 years was to provide and protect my mom. Suddenly I was allowing someone to really invade her.

Thank God for the hospice nurse.

Her gentle voice, reassurance that Mom had passed, and honestly-her eyes looking into mine told me I could do what needed to be done.

I gave the word.

What was it? Some amazing testament? Some profound utterance?

No. It was simply, "Okay."

"Okay?" She asked.

"Okay, do it. Do what we planned so we can help someone else." My sense of resolve never faltered, just my sense of insecurity over causing her pain. I wasn't fully accepting of her death in the short time since her last breath. Why did things have to move so slowly and then suddenly so swiftly?

So. One year later. How do I feel? I feel like it was an important step. A good step. A contribution to someone else's future.

I hope to see the end result, but I probably won't in my lifetime. The study for schizophrenia isn't an overnight success just like most everything else isn't. All the work and all the preparation for the big unveiling of the "success" is done behind the scenes over years uncounted.

Would I do it again?

Yes.

How do I know?

Because I'm a brain donor too. And when I pass, I hope my husband and children will have the courage to continue what I started. It's not easy dealing with the emotions of donating organs from someone you love. It's not easy because the picture is in your head no matter what anyone else says.

It's still the right thing to do. The picture gets better. In fact, as time passes, you will feel like you made the right decision to help others.

My advice is this: Set up in advance what needs to be done so that when the time comes, you can just put the wheels in motion. Too much to think through will cause failure. That is a regret I know I couldn't live with. Could you?

Angie

Mom's Gift

Hi all,
I want to thank you all so much for the amazing amount of emails, prayers, cards, and kind words as I went through this last week and a half since my mom died. You all had so much compassion! I really learned a lot about what it is to be a supportive friend.

Thank you!

The update (about the brain donation etc.) for those who are interested in it:

My mom, many of you know, was a paranoid schizophrenic. I signed us both up to be brain donor's with the Harvard Brain Bank's study for schizophrenia. They need both the brain of the mentally ill patient as well as their family members to study the differences.

Watching mom die was extremely hard. My husband and five of my six kids were there. It wasn't the beautiful movie-style peaceful thing. It was hard, painful, and disturbing. She was so scared. She tried to speak earlier in the day, but it was nearly impossible to understand her. She moaned a lot. She was extremely restless. She had stripped her clothes off as if they were painful. We lightly covered her with a sheet and used it to fan her body to comfort her from the heat that happens at the end. But my children refused to leave. They waited, sang, and sat with us. They were so gentle and kind.

The hospice company was only involved on the last day due to a snafu. sigh. But they were wonderful. They sent us a harpist. She sang and played from 9p-10:30p. The songs were a range of hymns, classical Latin pieces, and Celtic music. At one point the nurse and I both made out the words, "I love you Jesus." This was a huge victory because most of the last few weeks, we couldn't understand her at all.

Mom died at 11:35p.m. on March 1st.

The hardest thing for me to handle was the actual moment of release. What I mean is the moment I had to say, "Go and do it" to the team. I had to have them tell me 3 or 4 times that she was dead. I had a hard time believing it. We all watched her take her last breath. She'd fought so hard. I laid my hand on her chest and told her to let go. And she finally did.

This is when the brain donation team leapt into motion. The nurses at the nursing home followed my pre-set instructions to the "T." They called the funeral home for transport, the Medical Examiner (who donated his time), and the brain bank to prepare them.

There was not a feeling of relief that so many people described. I felt sadness, instead, a sense that she missed so much joy in this life. I was glad she could go to heaven and feel real joy. But I felt cheated that she'd had such a difficult life of mental illness. I felt cheated, as a daughter, that I could never have a normal conversation with her in my entire life. I felt hope that I could have some great conversations with her in heaven. I can't wait to find out who she really is. Can you imagine how long that chat will be? I know the schizophrenia masked who she wanted to be, who she was deep down, and imprisoned the loving mother she could have been.

As a Stephen Minister, I know the stages of grief. But they still took me by surprise. Not the stages so much as one stage. Anger. It shocked me. My anger whipped around me for several days. And it made me angrier that I was angry! Oh brother, talk about a catch 22. LOL, sigh. I'm much better now thanks to the wonderful friends who just listened (which ironically is exactly what a Stephen Minister is for.) I thank God he provided me with such a wonderful support network.

Well, we had a 24 hour window to provide a fresh brain donation to the brain bank. (There are other options, but this is the one that I felt would best serve our situation.) The M.E. arrived and did his procedure from 1a.m - 3a.m. Then a courier (read-taxi) picked up the container, delivered it to the airport, and her brain arrived in Boston at 5 p.m.

I had a terrible scare that bad weather had grounded it in Minneapolis. But it hadn't. Everything went like clock work because it had been surrounded in prayer. People showed up and did their part of the teamwork right on time, others stayed with me, yet others called to help me get over the waiting and the concern that something could go wrong. This was mom's last gift, I thought, and nothing could go wrong.

The Lord did not allow anything to disrupt this gift. The support, the plans, the love. Everyone on the team was really on the team. No one fell behind. To all of them, thank you.

But mom had one more gift. One I didn't expect. The hospice company called a week later. They had noticed some things that weren't the best of circumstances. They wanted my input to help correct the lack of education and conditions in the nursing home.

Because of what mom experienced, and my ability to communicate for her, the people in her nursing home and possibly others, will get some more training. Other folks will have better end-of-life care. Others will benefit because my mom lived. Many from the studies at the brain bank. And many living where she lived.

My children benefit from having the honor of helping their grandma die with dignity surrounded by her loved ones. They had a rough time, but they refused to leave her. This caused quite a stir with the nurses and hospice folks. I didn't know about the stir until later.

The nurses and staff told the hospice company that they were ministered to by the fact that Eva's family surrounded her with such overwhelming support as she died. They all knew how hard it has been the last few years. It was incredibly difficult to manage her meds, diseases, and physical needs because she didn't believe she was sick. She fought everyone who tried to help her. Mom believed that someone was doing all of this to her.

So in the end, the staff felt our family had so much peace and strength, and that we shared it with them. It wasn't something they were used to seeing. (I don't know why.) They felt we had a sense of understanding and reality. But that there was such peace.

No one had ever been involved in a brain donation before. Well, heck, neither had I! But they were all so moved to be a part of the team. And we all did feel like it was a huge team effort. And I am so grateful to them all.

If anyone would like more information about what happens with brain donation, how to put a team together, or you are just curious, please feel free to ask.

We will be taking mom's ashes to Denver. The only thing I figured out after all these years was that she wanted to be buried by my grandparents. I'm glad I will be able to do that for her.

For those of you still caring for family members with long-term illnesses or mentally ill loved ones, may God bless you and give you a sense of purpose in that work. May He give you humor, joy, and peace as He works through you. You will make a difference. Keep going.

If this story helps you writers to deepen a character, gain knowledge, spurs an idea-well then-mom's given another gift:-)

Angie

Remember you can find the Brain Bank at www.brainbank.mclean.org or by calling 800 brainbank

Missing Elements

Hi,
Sorry to have been quiet for so long. My mom died last Thursday. I needed to focus on other things. Thank you for visiting in my absence. I did have to remove one entire post because of a very obscene comment left by a spammer. There was no way to remove the lengthy rant of obscenities without deleting the post on Tricia Goyer's book.

This brings me to the realization that there are missing elements in everyone's life. The spammer couldn't contain his rant of hatred toward Christ, day after day we forget some little thing we should have done, and people die.

Missing elements. Things forgotten or left behind. But instead of thinking about being left behind down here on earth, I think we are the missing elements being waited for up in heaven. I rejoice because though she will no longer come to me, I will soon go to her.

2 Samuel 12:18-23 is a passage about David's loss of his son with Bathsheba. Verse 23 says, "But now that he is dead, why should I fast? Can I bring him back again? I will go to him, but he will not return to me."

We will soon go to be with our loved ones and with the Lord, but we are the missing pieces of the fullness of heaven not the other way around. I look and hope with joy for the day I will be reunited with the loved ones who have gone on before me.

And for those of you who have been reading this blog for awhile, you know that mom was mentally ill. I planned to help her give her last gift to those of us here on earth through a brain donation. It was successful. Her brain arrived within the 24 hour window at the Brain Bank. (It's found at www.brainbank.mclean.org or by calling 1800-brainbank.)

I had a really hard time at the end. I had to keep asking if she was really gone. I didn't want to take what was still hers. It took them several times to convince me that she was really gone. I guess the logical me just wasn't present then.

I'll talk about this more in the future, but I will be getting a report of the findings in 8-12 weeks. It's so important to me to find some answers. Mom's life was very rough due to the paranoid schizophrenia. I see her joyfully dancing with the Lord now in a perfect and whole version of herself. I can't wait to meet her. I can't wait to actually communicate with the mother who loved me so much, but couldn't figure out how to socially connect to those who wanted to love her back. I have so many questions.

For those of you who are wondering, I look forward to sharing anything I learn that will help others understand mental illness. I will try to post all that assists once I understand it myself.

Again, thank you for visiting and sticking with me through this time. I'll be back more regularly now.

Angie
PS I am moderating comments to protect you all from reading obscene things. Thanks for your understanding.

Here Am I, Lord, Send Me

Today I was given the most precious of gifts. The state Medical Examiner's office is a new part of my brain donation team. Dr. K (I didn't get permission to use his name, so I won't) is set and prepared to assist when the time comes to donate. Thank you Dr. K.! His back up is another doctor willing to do the same. I have 24/7 coverage so that this effort will not go to waste. They said they were not only willing, but they would not charge me to assist in this circumstance. I am so full of gratitude.

I find myself acting in odd ways for me. My son had to tell me that talking about brain donation (and the process) wasn't exactly dinner conversation. Duh! But I didn't even realize it. I'm usually the one putting the kabosh on inappropriate communication. I went from matter-of-fact explanations to wanting to throw up in a space of 3 seconds. Man, today has been a rough day.

I succeeded though. I have a team prepared. From the doctors to the funeral home to the Brain Bank. I'm finishing with weekend contingency plans. If I never do another good thing in my life, I feel like this will be a shining moment. Mom and I are going to find a way to make someone else's life better. Somehow, this will be one link in the chain to build healthy, quality lives for other families. Please Lord, bring this all to fruition with your blessings.

I need to create a file for each location with all the numbers, people, doctors, and signed consents. I am not taking any chances. We'll have 24 hour window to make it work. I refuse to lose that opportunity to help change the world and make sense out of the madness we've lived. I'm very verbal with my whole family. If something happens to me, they have to know what to do for both of us.

Do people know what is important to you? Have you communicated it? If not, why not?

I've wanted the possibility for some answers all my life. It may not answer everything, but maybe it will help me understand something. The Brain Bank is going to send back a very detailed neurological report. And in the process, we might help another daughter have a relationship with her mother. I really want that-to make a difference in the world through this one act.

The Brain Bank explained that there can be no massive stroke, brain cancer, or ventilator. If any of those occur, then the brain is unusable. I'll be going to the nursing home for a meeting with the staff. Everyone must understand how important protecting her is to the whole process.

You know what scares me right now? What if it takes a long time? What if I or someone in the team get complacent? What if I have to go through all these emotions again? What if my mom doesn't know how hard I tried to get my brother to see her? What if he doesn't come-ever? I want her to have that one last gift. I want her to see her son. She begs for him when she's almost coherent. It's been well over 10 years. I've lost count.

What do you need to put as a higher priority? What do you want to do to make a difference in the world? Can you make a list and just start working that list?

You can.

Please don't let time continue to pass. Make your choice and make a difference.

Angie

Brain Donation?

Did you know that you could donate your brain? Ack! Would anyone really do that? I would. And as my mother's guardian, she will.

Am I abusing my power? No, I'm finding a way to make something good come out of all the horrible things we've endured because of her paranoid schizophrenia. Together we might be able to help others with the information gleaned from our brains. Separately, I need any answer I can get. Why does one person become afflicted and another not? Is it hereditary? Is it caused by physical or emotional trauma?

The Harvard Brain Tissue Resource Center is studying schizophrenia and manic depressive illness through brain tissue donations. They need not only the patient (hard to get) but also any "normal" sibling, offspring, or parent relatives.

Truthfully, I'm excited about this. The center sent me a Psychiatric Brain Donation Information brochure. I signed up both myself and my mother using the simple card attached. They will one day send back the results. I've always wanted to know any tidbit that could help me understand better. What happened? Why is she this way?

The body remains intact. You can still have an open casket funeral, but you must act immediately to preserve the donated organ. In fact, this will take me out of donating other organs because the brain donation is not compatible with organ donation. I still think it's worth doing. There just aren't enough opportunities for scientists to have close relatives able to donate.

Maybe this can somehow make a difference. Another family might find a cure or at least a treatment. I hope to give back a sense of relationship to another family that is struggling through mental illness. I hope that my mother and I can do that together one day or at least be a part of a bigger cure.

Would you donate to the Brain Bank?

For more information visit: www.brainbank.mclean.org or call 800.272.4622