When confronted/presented with a crisis, what is the first thing you do?

Sounds kind of 'off topic' for me, but serious though.

I think and get busy attempting to 'solve' it. But lets say for the sake of arguements, have ANY of you been faced with something so profound that you honestly dont know 'what' to do?

Now what?

Thanks for comments, sumer

-- consumer (shh@aol.com), July 21, 2000

Answers

#1.seek=wisdom!-2.control own-soul!3.-pray & wait!somewhere in bible ,is the answer!WORK,S EVERY -TIME FOR ME!!!

-- al-d. (dogs@zianet.com), July 21, 2000.

Thanks there al. I do believe you are at times sincere. :-)

May I give to you a hypothetical? Lets say you were told your child was terminally ill? Then what?

I am being very serious I do believe we can and do find comfort when we seek it out, but I am not talking about 'minor' lil trials and everyday situations I am talking DEATH.

Now you may wonder why? So let me explain, NO PITY ok? Cuz consumer HATES pity.

My son has just been tested and is terminally ill. He found out 2 days after his birthday.

Now what?

thanks, but no pity, sumer

-- consumer (shh@aol.com), July 21, 2000.

Consumer,

First, I would attempt to quiet my mind enough to do what needs to be done in an efficient, thorough manner.

Then, I'd get a second and third opinion. Then I'd exhaust every avenue of traditional and non-traditional solutions, gathering information.

I think faced with such sudden, stunning news as you have received, I would attempt to remain as calm as possible for my son's sake. I would also make myself consider outcomes that don't include the worst possible senario. Just a personal choice.

Good luck to you and your son, Consumer.

-- Casey DeFranco (caseydefranco@mindspring.com), July 21, 2000.

Firstly, I would do everything "Casey" above recommended.

I would also remind myself that *everything* happens for a reason. It's just hard (sometimes) to find that reason.

I would also remember that no one is given a cross that is too heavy for themselves to carry.

God Speed Mar.

-- Not now, not like this (AgentSmith0110@aol.com), July 21, 2000.

Sumer:

I wrote the following before reading your last post. It was a general response to your original question. It is how I respond in crisis. Email me. Please. -- West Side Oxy.

Stop. Act. Stop. Scan. Seek inner guidance. Listen for inner voice. Seek confirmation. Seek outer guidance. Get support from friends, get knowledge from experts. Create and recreate solutions. Go outside the boundaries. Brainstorm. Act, act, act. Follow inner rightness. Review. Debrief. Pray. Forgive and accept. Have hope. Know something is coming your way to carry you through.

-- Oxy (Oxsys@aol.com), July 21, 2000.

Take a deep breath.

Now take another.

First things first, I would get a second opinion, maybe even a third.

Then, I would find a good support group for my son and for myself as well. Checkout WebMD, they can be a good source for that.

I realize that you do not want pity, but you will need to surround yourself with an excellent support network, both for your son's health and yours. Your support network can also be a source of invaluable information, such as new treatments, experimental therapies, and coping skills.

Work hard to remain positive, don't descent into despair and "the blame game". Try especially hard to avoid the "if only's".

Keep a journal of this time, whether written, recorded, or videotaped. This is a very special, though difficult time, and you will eventually want to remember it.

As you try to live every moment to its fullest, remember that balance and normalcy are important, too. Try not to make every single moment a production number; you and your son will both end up feeling exhausted and strained. As he gets more ill, he will gain a great appreciation for the simple pleasures, such as playing outside or helping you cook dinner.

Good luck. I'm hoping for the best for your family.

-- Tarzan the Ape Man (tarzan@swingingthroughthejunglewithouta.net), July 21, 2000.

Sumer:

Do you know we have formed a prayer group? With your permission we would be more than happy to include your son and your family in our 11:00 PM prayers.

Love being sent your way...

-- FutureShock (gray@matter.think), July 21, 2000.

Come to terms with the situation, make every day count while you can, and let yourself grieve.

The hardest thing for me to do was watch as a very close friend lost his sixteen year old son. There are support groups which hepled him but my biggest comfort was knowing that it doesn't end here. There is an afterlife.

-- Maria (anon@ymous.com), July 21, 2000.

Consumer:

First off, check some of the E-mail I sent you...one early this morning, some this afternoon. Your son has a disease that may/may not result in death. He needs more testing. Above all, however, he needs a mom that doesn't overreact.

Since we're all going to die [from something or another], your son is in no different place than anyone else. Some might even say he's in a better place than some others. Isn't it high-blood pressure that's labeled the "silent" killer?

Your job right now is to stay relaxed and supportive. I had a neighbor once who went apeshit over even the mildest problems in her children. She was hysterical when her daughter needed glasses. This neighbor died from cancer within perhaps 5 months of her diagnosis, at the ripe old age of 32. She could have died from being hit by a truck, as well. We ALL could.

Relax...calm down. Your son will recognize this in you and it will calm HIM.

-- Anita (Anita_S3@hotmail.com), July 21, 2000.

I am sure our 11 pm prayer group from this forum will focus to support you in this, Sumer. Some great people from these threads participate every night.

-- Oxy (Oxsys@aol.com), July 21, 2000.

consumer, you've received some excellent advice on this thread. Clearly you and your son are in many people's prayers and thoughts. Know that I am among them.

You seem to be a rather strong woman to me, based solely on what I've "seen" of you online. I know that's going to help you, and more importantly, your son through this time.

-- Patricia (PatriciaS@lasvegas.com), July 21, 2000.

Sumer,

Try to stay as cool as you possibly can, especially in front of your son. Never give up hope. Go for those second and third opinions. But don't even stop there. Do your own research; MEDLINE (I don't have the website handy right now) is an enormous medical database; and there are others. If need be, get family and friends to assist you; learn his ailment backwards and forwards, to the best of your ability; and learn the terms -- or as many as you possibly can. Just doing these things should lead you to start feeling better -- that you're doing something that just might make a difference -- maybe a crucial one.

The Wall St. Journal of July 14 (page B1) has an awe-inspiring column on how you can do your own health-related research, and talks about how a patient can find and interpret medical data. There are success stories where patients discovered new techniques that their doctor wasn't even aware of. A quote:

"Steve Dunn was diagnosed with advanced kidney cancer in 1989 at the age of 32. The prognosis was dismal, but he heard about a promising new therapy. He used a family connection to gain access to a medical library and soon began perusing the bound volumes at random. By sheer chance, he says, he found a new study about the therapy, in which patients were being treated with a combination of the drugs interleukin-2 and interferon. After calling a hotline at the National Cancer Institute, he enrolled in a clinical trial.

"That was pre-Internet. Now, Mr. Dunn, cancer-free for several years, is sharing the technical knowledge he gained on CancerGuide.org, a web site he started that provides a primer for patients on how to find and interpret medical data. A raft of e- health sites offer general health information, but a growing number of patients are seeking more sophisticated technical information - and finding it. 'There's so much available on the Web these days,' Mr. Dunn notes, that patients can find 'breaking research' months before it appears in the medical journals. The concern, however, is whether they can understand what they read.

"Thanks to the internet, a virtual avalanche of medical reports, studies and peer-reviewed journals once accessible only to physicians are now just a mouse click away..."

You should talk to your doctors before you attempt anything counter to the asvice you're now being given. But many docs out there just aren't on top of the latest developments.

Sumer, my heart goes out to you and your son. Please feel free to e-mail me.

-- eve (eve_rebekah@yahoo.com), July 21, 2000.

Anita, thanks, havent been 'home' to check email. I am in process of getting 2nd opinion, have 'researched' until my damn eyes HURT thru internet and other support services in the area.

I ROFL at the one who suggested he run outside and play, cuz he is 22!!!! but i'll tell him anyhow, he'll love it :-)

We are awaiting 2nd set of tests, then wait again for the certain other tests. I am calm, have researched and will continue to do so as my son is counting on me for this as well.

Anita, from what I have gathered there is alot of 'misinformation' as well. I do realize we all must 'go' sometime, but when you consider I should go before my sons, its a whole new ball park.

I am NOT going to be optimistic on this one, I will not build false hope. I will survive and take care of mine. I am a strong woman with full blown attitude and will love my son thru it ALL.

Yes, I would like to be put on the prayer group list here :-) I do believe, always have and have no problem w/that.

I'm at work today, sllllllllllllooooooooooowwwwwwwwwwwwww

thanks all, believe it or not, I am greatful for all your responses

----sumer

-- consumer (shh@aol.com), July 21, 2000.

Consider yourself and son on the list, sumer. Thank you for coming to us with this. There's great strength to be found in these marvelous, loving individuals.

-- Bingo1 (howe9@shentel.net), July 21, 2000.

Perhaps we could meet in Bok's this evening, or at your convenience, sumer. I think an initial dose of loving energy should be applied as soon as possible. Let us surround you in love. No pity parties thrown by us. Just communion of souls seeking to assist each other.

Let us know your wishes, sumer, either by posting on this thread or via private e-mail. Feel free to contact myself or Oxy privately if you wish.

-- Bingo1 (howe9@shentel.net), July 21, 2000.

Sumer--

You do not want pity. I offer you none. I do offer prayers for your son. I pray for a number of sick people that I know personally and a few that I know indirectly like your son. I am a member of FS's group and altho I think he and I pray differently, it must reach the same ear. I believe in prayer altho I have certainly known it not to work, at least not in the way we petition.

I have seen you refer to your faith and, I think, also to some crises of faith. In my 60 odd (very odd) years I have had many crises of faith but I always return to faith. For me, faith is essential to sanity. Faith is ultimately all that remains when the the unanswerable questions arise in the middle of the night: why him? why now? why period?

That doesn't mean I advocate accepting your son's terminal diagnosis as long as he continues to draw breath. But I do counsel acceptance should he die. The recent advances in medicine have been enormous, especially for some childhood diseases. You don't describe the details of your son's illness or injury but I hope you will keep seeking the best care you can afford. I also hope you will not rely solely on faith healers, shamans etc. There is so much fraud in that type of healing. There is plenty of cynicism and fraud in mainsteam medicine too. Finding the best source of care is a exhausting, complicated and expensive. I hope you have good advice.

Friends (including this motley crew), family, your son's friends, church and support-groups of people in similiar circumstances are so important. Please don't be a stoic hero and face this alone. I think Tarzan's ideas are right-on and Tarzan and I don't always see eye to eye.

I hope you maintain your sense of humor, no matter what. You have a well developed sense of humor and it is your gift to others as it is God's gift to you. It may become foxhole humor as you live thru this but even foxhole humor is better than anger. As Brian once said to me in another context--your humor is "your sword and your shield". You will need both.

All these views I offer humbly. I have never come close to being where you must be. Vaya con Dios.

-- Lars (lars@indy.net), July 21, 2000.

Hey Sumer,

Don't get too low or too high with the emotions,keeping a level head and a pessimistic outlook on what the doc's say will help,they have been wrong more times than right as they are only human and their tests are fallable.

In every instance possible allow your son to live life as normal as normal is regularly,even extravagantly if he so wishes.Don't give up on one,two,three....opinions,as there are a world of possibilities.

I don't have the answers I would love to be able to give you or the ability to take away the hurt,but I am with ya hon.

Take care Sumer and your son.

-- capnfun (capnfun1@excite.com), July 21, 2000.

Sumer..When I was 17 I had cancer, and I will tell you what my mother did for me, Okay? First off she was shaken to the bone, and she cried more than I did. (At 17, you still believe you are immortal) I was just afraid of knowing I had to go through surgeries. The idea of chemo only bothered me because I didn't want to lose my hair. It never crossed my mind that I might die, even though it was a real possiblity. My mother brought me for a second opinion, and it was confirmed. So, she held me and watched over me and stayed by my side constantly, throughout the entire process. She was there for me when I felt like I WAS dying (chemo is the worst) and she was there for me when I finally got angry about the whole thing. She just kept saying to me "I'm here for you, I give you my strenght" She kept my life as average as possible in between. She changed my diet based on the beliefs of that time,..all cancer fighting foods etc. I always felt relatively safe and calm. My grandmother died the day after I entered the hospital for my first surgery, where they confirmed the cancer had spread. My mother had ALOT to deal with that day, huh? She says "I went into Auto-Pilot, and just did what I had to do". That's all you can do. So, I'm still alive, and even though I had to go through it again a few years later...20 years has passed since then. I also know NOW that I was very lucky. Not everyone is. So...

It doesn't hurt to do A LOT of envisioning,...whereby you play over all possible outcomes in your mind. It helps you to deal with any outcome. It is realistic to think over how you will deal with his death, and even discuss with him what he would like done if he dies...where to be buried, what music to play at his services..that kind of thing. Since he's 22, he's much more aware of his situation than I was at 17. You can also hope for a more positive outcome regardless, because Hope helps every situation. Just be there for him, and encourage him, and if it's cancer, know that chemo makes you feel like you're dying for awhile and don't get discouraged when he looks and feels like shit. It passes. Best of Luck to you Honey!

-- You will survive it. (AFriend@Boks.chat), July 21, 2000.

Consurer, I'm sorry to here about your son. If it heps any, our doctors told me my daughter was "terminally"ill ten years ago and she is still alive and kicking! Oftentimes doctors diagnosiss are wrong fortunatly. Hang in there and love him. What was he diagnosis with?

-- (Patricia@doesn't.charge), July 21, 2000.

This is Very hard for me, but hey, life is a 'risk'. My son is HIV Positive.

He has been sick for awhile, he donated blood through the Red Cross, and they called him to come speak with them. He went, I have the paper work.

He has no medical insurance and is now Uninsurable. As most know, us insurance folks dont want a 'bad risk'. Last year (i dont believe this was a coincidence, I took out a life policy for him) so at least when time comes....

At any rate, I have taken him to a free clinic, the results were supposed to be back, they are not in yet, which is indicative of yet another affirmation of a positive result.

He has been entered into the data bank National, cant pursue his EMT postion any further, he is heartsick, scared and alone.

HIV is a disease which I have researched now till my eyes hurt. Much misinformation is out. Regarding the 'new' drugs, they cant take those right away as it will then later make the body immune when it becomes necessary to have them.

I must await 2nd test, then go back with him Through a Task Force Agency which will send him to HIV doctor. Then he will be further tested, for Viral Load and T-cell count. This should window when disease was contacted.

I repeat, he is VERY sick right now. I am doing all I know to do.

Now, many I know are not supportive, my family has backed away, the churches I am aware of shun him as well. So i shall continue my search for support for himself as well as me.

If any of you can, PLEASE tell EVERYONE you know to get tested. It is FREE and Confidential. It is NECCESARY it may save lives. If you are 'at risk' protect yourself.

HIV is now at Epidemic levels in our society. In 1990 South Africa predicted by 2000 there would be 9 million there HIV Pos, the true numbers are now out, they are 24.5 million, they do not have enough graves to bury their dead.

It is stated that AIDS is the 4th leading death amongst our young people. My son is 22. I will never see His child, as there will be none. At best, w/new drugs life span is 20 yrs, w/taking care of self. I KNOW my son. He knows his body. He is sick.

In the county where I live it is stated now that there are 1 in 15 infected, I say the figures are much HIGHER. I say this due to So Africa's guess, and how incorrect it is.

Research and learn peeps, its here and It aint going away without taking MANY with it.

Anita, thanks for the email......I appreciate you.

Please dont ask 'how' my son got it, see HIV doesnt discriminate and how is really unimportant.

He was at work, saw some Christians whom he asked to pray for him, they backed up and walked away. I am NOT slamming Christians, HIV has a stigma attached. Study, Educate, Learn.

Soon ALL of US will know 'somebody' with this disease, perhaps even a family member. I dont wish this on anyone, but at the proportional epidemic levels now, we WILL EACH one know someone.

Truth time, anyone here know anyone with HIV? Anyone here ever watch anyone die from it? It is truly a horrible way to die.

All I am about in sharing HONESTLY with each one is this.....Educate yourself, get tested, we are all pretty much at risk. The jury's still out on how long it may lay dormant in our bodies. I've taken a serious risk here by 'outting' a very personal situation, to do so is very hard, however, if I can help ONE person, I've done well, I will feel much better.

Many with this disease have no support at all, they die alone, many take advantage of Caregivers, who volunteer their time and money to see those with full blown Aids die w/love surrounding them.

As I entered the Task Force I was told by my sons Caseworker it is the first time in ALL his years that a mother had brought her son. for that I am proud.

EDUCATE, Study, read, test, and Protect yourselves. For my son, for your children and loved ones.

My son said to me "mom I dont want to be just another patch on a quilt, I want to go out in a BLAZE of GLORY I want to be remembered for DOING something, not just another one of "them".

Thanks for letting me vent.

If any of you have any questions, feel free to ask, I feel like a walking HIV research book. :-) for that I am proud. Who'd of thunk?

Smile and love.

xxxx00000----sumer

-- consumer (shh@aol.com), July 21, 2000.

consumer,

You are a brave person.

There is a slim (very slim, in fact) possibility that I may be able to direct you to some lesser known resources. I do not wish to raise your hopes falsely - at present there is about 1% chance I can help. I will email you with more, should I learn more (I may not).

Regards,
Andy Ray

-- Andy Ray (andyman633@hotmail.com), July 21, 2000.

Thanks AR,

I miss your being mean :-)

xoxox, sumerous

-- consumer (shh@aol.com), July 21, 2000.

consumer

much love and many prayers

-- (bygrace@thru.faith), July 21, 2000.

Hello Consumer--

I send good thoughts, hugs and prayers for your son and you.

Music does wonderful things for the mind and body. Bingo 1 recently had a thread containing music selections. If your son is feeling ill now, he may enjoy some of Ashton & Leska's suggestions.

-- Pam (jpjgood@penn.com), July 21, 2000.

Consumer - We care and are here to support you in whatever way we can but it's impossible for us to fully know what it must be like to be in your shoes at the moment. However, the Liszt mailing list directory may be of some help. Type in "HIV" and you'll see that there is a "Caregiver Support" mailing list of others who can offer insights from experience. You're not alone...

-- LunaC (WhatCanWeDo@Helping.com), July 21, 2000.

Consumer, I try to keep up with medical research thru health newletters (I've scaled back what was almost an addiction and now am just taking the Harvard one) anyway my point is that incredible progress has been made in the past 5 years, and progress seems to be accelerating. You have my heartfelt prayer that something will be developed to help your son.

-- Peter Errington (petere@ricochet.net), July 21, 2000.

Consumer, If your son is very sick, he must have full blown AIDS, not just HIV+,,, wait for the second opinion, and don't stop there. As far as I know ( admittedly, not much ) it takes 10 years from infection to symptom to show with AIDS, and if he's only 22, that means he contracted it at age 12,,, not likely. I'm not trying to down play your problem, and my thoughts are with you and yours,

-- Mr. Slippery (slip@slide.cum), July 22, 2000.

There is no such thing as false hope. Please don't ever give up hope.

Sumer, you and your baby are in my thoughts and prayers. Love Cin

-- cin (cin@cin.cin), July 22, 2000.

Sumer-

No pity here-jes the facts as I see them, listen to my thoughts-from my heart to yours dear one:

As you awake each day, know that there are those of us here who pray and care for you, and your son as if you both were our own. Because he is, and you are, as you well know. He is the person we "know" and love who is part of our circle of humanity-but closer because we know and love you both. We protect our own with more power than you can ever know. We will be here for you in what ever way we can. Be strengthened by the knowledge that a team is in force daily, sending healing thoughts and prayers in both your directions.

While things may appear bleak at present, there are many of here who are working on solutions. Know that you are not alone in your search and that we will help and support you in any way that we can. Ask and one of us will heed your call. A number of us are working even as I type.

Oxys advise was sound. Heed it. Write it in your journal, and reflect on it while you spend time in the waiting rooms. It will give you room to exercise your options when you get to talk to the docs, and write down everything they say. Seek clarification from them if they are ambiguious (or even if they are not) and do not let them off without being precise. Listening will be a gifted tool. As will writing, both in the moment and on reflection.

I do believe that your cyber-support network is place as of now. Use it to vent, soothe and seek help. Know that we are here for you if you need anything. We, as a group, are a wealth of knowledge, and what we do not know, we will investigate and report back to you that which we find. Feel free to email any of us who have volunteered. We will be there for you. Take some comfort in knowing that you are not alone in your battle of the disease. While we cannot meet face to face at present, know that you are not a singular being facing an evil entity that you do not know. You have an army behind you. Know our strength, and be sheltered by it. Feel not alone, ever.

It's ok to get high and then get low-they allow you freedom of experience and acceptance of the differences in the process. Do not judge yourself. It is not a situation you can control, but you can guide it, with good information. The ups and downs come with every medical situation one encounters, no matter the diagnosis, but armed with good information, you can make good decisions, and object to the bad ones. You do have choices.

As to the insurance issue, I will pursue those interests and avenues that we previously discusssed. You may be interested to know, that should his medical situation warrant it, that he will be automatically eligible for SSI (Supplemental Security Income) and thus Medicaid eligible and enrolled in your state (in thoery, totally covered). I do know that in my state, SSI recipients get the finest care available.

As to the free clinic frustration, know that they serve many, on limited tax dollars and personnel, and they try as best they can to get back to applicants. It is not necessarly an indicator of your son's health, but an indication of their overload.

Please tell your son for us, that he is not alone. That there are others here, that care for him and are at the ready to assist, at least spiritually and on line. Do let him know that should he have a need that one of us can fill it-he need only ask.

While those that have shunned him are hurtful at the moment, he can take the higher road. From what you have told us of him, he has that ability and will do so. Humans can be draining sometimes, but there are many more who are uplifting. May he be uplifted by the support of those in his loving circle. Know that his circle includes many of us here. He need only come in to feel the joy and warmth. Please let him know that.

Continued to the next in the thread

-- Aunt Bee (Aunt__Bee@hotmail.com), July 22, 2000.

You ask if anyone has experience with folks who have HIV. I wish I could say no, but that is not the case. I have lost many friends to this disease in the last 20 years. But, on the up side, I have lost none in the last two. I hope this offers you some hope as to the current treatment. In years past, I have been to the mountains and the Carribean, the Pacific and desert to scatter the ashes, say the prayers and mourn the loss of those who have succumbed. Those beloved, talented souls are with me still. I know in my intellectual mind that had they been diagnosed in this day and age, they would be with us now.

I now have two very dear friends who I consider "family" (like brothers) who are HIV positive, some twelve and eleven years now, who are some of my greatest joys in life. They are a testatment to the current medical treatments, as well as are their positive attitudes towards life. They really are quite healthy, and working full time.

-- Aunt Bee (Aunt__Bee@hotmail.com), July 22, 2000.

Continued from the previous thread.

Sorry to be so long, but this is very close to my heart sumer.

Know that the support is here for you and your son. Do tell us what we can do, and feel free to meet at Bok's anytime. My addy is real and I am here for you. Two underlines between Aunt and Bee. I hope you feel the love and support coming in your direction. Many hugs to you, and know that we will face this road together. There are many of here to support and care for you both. You need only ask for that which you need.

-- Aunt Bee (Aunt__Bee@hotmail.com), July 22, 2000.

Best wishes from downstate, Consumer. If you need anything from OSU medical or whatever, let me know.

-- (kb8um8@yahoo.com), July 22, 2000.

Consumer, If your son is very sick, he must have full blown AIDS, not just HIV+,,, wait for the second opinion, and don't stop there. As far as I know ( admittedly, not much ) it takes 10 years from infection to symptom to show with AIDS, and if he's only 22, that means he contracted it at age 12,,, not likely. I'm not trying to down play your problem, and my thoughts are with you and yours,

-- Mr. Slippery (slip@slide.cum), July 22, 2000.

Hi slippery,

And to all, MANY heartfelt thanks....Such a GREAT group....Caring, loving and I need that.

I wish to let you know slippery that although most 'think' it goes back 10 years, this is not so.

After researching I have found that Through new tests which although were never before available, Hiv can now be pinpointed/ie..windowed, with a Western Block Test (full blood workup) along with Viral Load and T-cell count.

Viral load = how much of virus is present in body

Hard for me to explain ie put into words, although I now know what they mean. From what I've read, the jury is still out on 'how long' the disease may lay dormant and not be positive. New research I am sure will reveal that, in time.

Much information is incorrect. If anyone here is more knowledgeable, and If I am incorrect, feel free to elaborate. I would appreciate it.

Although my son is quite ill right now, I must WAIT. I must wait to wait, it is frustrating. I have no control, I know that. I have accepted that.

Aunt Bee, who'd of 'thunk'? :-) You go dear!!!!! Have you read (i'm sure you have) the book CAREGIVERS? I am assuming you are such.?

Finished my email to Dear Danny From A&U magazine. Hope it gets published, if it does, I'll let you guys know..... Writer at heart, I feel I have something to contribute to their Magazine.

Keep info coming, and thanks again.

xoxoxo, sumerous :-)

-- consumer (shh@aol.com), July 22, 2000.

Sumer (Consumer),

Sometimes, life throws you a ball of yarn. When those times come, you just have to make a sweater. First, please remain calm. Your son needs you now more than he has never needed you in his entire life. Be strong for him, as he will gain some strength from you.

I know what you are faced with is tough, but God wouldn't give this to you unless he thought you could handle it. Keep the faith, and keep your strength. There are numerous people here pulling for both your son and you. We send you love, support, and the strength to deal.

Donna

-- (Sheeple@Greener.Pastures), July 22, 2000.

Consumer

When you visit doctors and clinics you may encounter some unfriendly staff, which may be intimidating to you and your son. I'm not sure how to write this, but I have had over 41 years of experience with regular doctor and clinic visits: first, for severe heart problems; secondly, for artificial heart valves. I've dealt with health care professionals in many different types of facilities in small towns and large cities. The most important thing I've learned is that you must be extra kind and understanding to the "gatekeeper": the person who answers the phone, the one who does the boring routine work. If they want to display their knowledge on a particular area that you may or may not already be familiar with, allow them your time and patience. They will remember you and will be more inclined to help you the next time. It will be very hard, but try to smile, and don't let the rush and demands of medical treatment get you down. I've been in the hospital many times. I've seen the nursing, nutritional, and custodial staff suffer very unkind treatment by people who were understandably upset and worried. Try to look out for others, it will help you and your son, and you may hear some information you may have missed otherwise. Thank you for sharing your struggle. Whenever I think of you I will pray for you.

-- Mary (like@tb2k.spinoff), July 23, 2000.

consumer,

I tried to get this to via email (shh@aol.com). It bounced. I guess I must post it here if it is to reach you.

I was saddened to hear about your son's diagnosis. In such situations you may be flooded with advice, so I usually would refrain from giving any. Since you directly asked for advice, I will give you the best I can and hope that it helps in some small way. I'll try to stick to what I think is practical and not go woo-woo on you.

First, you seem to wonder about your ability to cope with this crisis. But, in my experience, a crisis is not outside of "ordinary" life, only the terrain is much steeper and more demanding. You may need to learn some new skills, but mostly you'll need to take all the skills life has already taught you and employ them to their utmost.

One of the first and most obvious needs in your position is to establish an understanding of your son's illness and its treatment. This may take an enormous amount of physical, mental and emotional effort.

If you are like most of us, you will draw on your reserves and make a superhuman effort at the beginning. You'll neglect everything that can take care of itself in the short run and place every ounce of energy you can free up into dealing with the crisis, going to doctors and clinics, contacting support groups, making the 1000 phone calls, making lists, talking with anyone who you think can make a difference. Go ahead. Do whatever you can to get a handle on things. DO ASK FOR HELP. You need help.

Just remember that superhumanity isn't a sustainable effort. As soon as you feel you have enough information to establish a stable treatment, try to make your life "normal" again. Of course, normal may not look much like normal used to look, but that is how life goes. Normal *always* changes. A crisis just accelerates the rate of change.

Don't let doctors or anyone else dictate how you and your son spend your time and effort. Don't put the disease in the driver's seat. I think it is important to recognize that the virus is only a passenger in you and your son's life. You and he are still the drivers.

If you let the disease become the most important fact in your lives, it will become next to impossible to have any room left for positive actions and accomplishments. Everything will become a reaction against the disease rather than a positive act.

If I were in your position, as soon as I was satisfied that a good course of treatment had been decided on, I would turn toward finding out what your son (and you, too) want to do with yourselves and with each other that you find worthwhile and motivating for their own sakes.

I have never been in that position before. Perhaps it might seem like a kind of self-deception for your son to decide that he wants to get married, have a career and children. It might seem self-defeating, since it appears impossible. It might look like a recipe for getting depressed, like making a list of everything you can never have.

But I really, strongly believe that this is the right handle to grab, the right lever to pull, because it shows us who we are and what we value. You can take each desire and pull it apart and find out what value is hiding inside it. You can probe deeper and find out what part of each complex goal he is most drawn to. The deeper you go into what he values and wants to live for, the more avenues will open up to both of you. (I think a sense that all avenues are closing and none are opening is deadening, stifling and awful.)

To show how it might work, let's say he wants to marry and have kids. OK. Maybe he wants to be married for the love, or for the sex, or the companionship, or something else. Each leads in a different direction. Maybe he wants kids because he wants to play with them, or teach them, or just to send his genes into the future. Again, each leads somewhere he may be able to go by a different route.

The important thing is to extract the value from the goal, so both of you can see how to get to the value today, in smaller actions. In life you never get a guarantee that your large goals will ever happen. As you both know very well right now, you have a lot more control over what you accomplish today than over what that ever amounts to.

It may help to understand statistics. You'll be hearing some. Say a doctor tells you there is an 80% chance that your son will die in 2 years. That may look like a pretty strong death sentence. What you have to understand is that this means 20% live longer than 2 years. And "longer than 2 years" is completely open ended. It means that some individuals live *much* longer. Until a statistic reaches 100%, it has nothing certain to say about any one individual.

Also, statistics can only summarize the past. In medicine, the future rarely is the same as the past. A new treatment is always possible. So, don't interpret statistics as Fate. They are just indicators and abstracts. Your son is real and unique. His fate will be his own, his struggle will be his own, and his success will be his own.

As a reminder (I feel sure you know this very well) you can't ram anything into your son that he does not want to accept. You can't make him happy, give him hope, give him purpose, or cure him. All you can do is help him and love him. Just like always. In that respect, not one thing has really changed at all. Not one thing.

I wish you and your son strength and a measure of joy in one another. I'm sorry all I can offer is advice and good wishes.

It never ends, does it (in both the good and bad sense)?

-- Brian McLaughlin (brianm@ims.com), July 24, 2000.

"It never ends, does it (in both the good and bad sense)?"

Ain't it the truth! Several years back, my nephew was in a dune- buggy accident. He was in an induced coma for 9 months. The inducement of the coma was to allow his brain to heal. [I don't understand it better than that.] I think he was 20 or 21 at the time. He's a huge guy [size 15 shoes], played football, etc. After they pulled him out of the coma, they stated that he'd never recover the executive portion of his brain. For a long time he was a child in a man's body. His girlfriend stayed with him for as long as she could, but she realized he'd never be the same. He endured therapy after therapy, but he's still not able to hold down a job.

About a year ago, my brother called to tell me that his OTHER son had been in a helicopter accident. He was okay, but my brother said, "When does the point come when we stop worrying about them?" This is my calm, relaxed, brother. My other brother couldn't have possibly handled these situations without a heart attack.

THIS year, my brother was diagnosed with prostate cancer. As usual, he's his calm, relaxed self. He's trying to save money so that if he dies from this cancer his wife will have a little nest-egg to help her support the son. Wasn't it Gilda Radner who said, "It's always something."

-- Anita (Anita_S3@hotmail.com), July 24, 2000.

Brian-

I am totally impressed with your logic and kind compassion. Beautifully expressed thoughts!

'Sumer

I hope you are listening-and reading. Much logical food for thought.

-- Aunt Bee (Aunt__Bee@hotmail.com), July 24, 2000.

My Dear Consumer,

I wish I had some original thoughts or advice to give you, but I find myself also trying to accept and deal with a serious illness that has stricken my mother just recently, so I am somewhat "blank" right now (my way of dealing with things I suppose).

I would like to offer you a few of the quotes that I have been trying to find some comfort from, and it is my hope that you too can find some wisdom in these words:

One aspect of deep grief is the loss of the imagination. One cannot imagine a time when one is not in pain. How many times have I sabotaged myself by leaping ahead of my own healing process, trying desperately to "feel better" that I make myself feel even worse because I have added to my primary pain the new complication of failure! In cheating myself of the necessary time to feel bad I have cheated myself of the only process that could really heal me. Ultimately, the only way to get through something is to get through it-not over, under, or around it, but all the way through it. And it takes as long as it takes. --- Alla Bozarth-Campbell, PH.D.

I stop in this moment of stillness, and I know deep inside that the battle is not mine to win. It's beyond me. It's very complicated. I realize most of all that you did not send this trouble. It is a part of the evil in our imperfect world.. Oh dear Lord, direct my energies as a parent, and don't let me crumble. ---Charlotte Adelspergen

I've developed a new philosophy - I only dread one day at a time. --Charles M. Schulz, Peanuts

Finding solutions to problems is actually less important than affirming your love and concern. The greatest gift that you can give to a troubled individual is your presence. For it is the kind word that diminishes the pain, rekindles the hope and finally generates a feeling of strength. ---Robert Veninga

-- Grace (SincerelyGrace@aol.com), July 25, 2000.

Much 'greatful' thanks to ALL of you. You know what? Today I am at work, I asked God to please not let 'us' be busy today. He heard me.

I am thankful for that.

Update re: My son: Yesterday (Monday) he came back to town for 2nd set of test results, another AFFIRMATION of original Red Cross Hiv Positive.

He was angry, wouldnt talk and Refused to go back to Task Force to get a good doctor. Time and God must heal him emotionally. I will be patient, loving, and supportive. He came in Sunday nite, very sick, flu symptoms and vomiting. Latter most likely from nerves.

On a positive note: I had a wonderful woman from Va. Beach who's hubby is Pastoring a church call. She and I are good friends. She spoke w/my son, and she is a RN (are you ready?) her hubby is a doctor. She is doing rotation at present with HIV children and adults. She has invited my son to come to Va. and to attend church there and IF he would like, there he can stay. He will have great new and latest meds made available to him.

I am very happy/sad. I wish to see him well. I know he must go this at times alone, making those type of decisions. That is between him and God. I believe he desires to go. I will let go.

I held my grandson the other day, had a BIG picnic, many friends and family over, had wonderful time. Life goes on, OTOH, I also know he must visit doc and get COMPLETE blood workup, this is VITAL. This will allow us to know how long he has had this and where he is physically.

Anita, I apologize for being 'testy' the other day. I was having a 'moment'. I am today at times also, but oh what a joy to come back from lunch, click on and see the love. Thanks peeeps!!!!!

Aunt B- your special.

I'll be emailing you perhaps tonite okay?

xoxoxoxxo, sumer

-- consumer (shh@aol.com), July 25, 2000.

Thanks sumer. Glad to hear you are making progress! I would love to hear from you and will await your "e".

-- Aunt Bee (Aunt__Bee@hotmail.com), July 25, 2000.

'Sumer,

Thanks for letting us know what's happening with your son. I just want you to know that I continue to think about you both, and that you can e-mail me whenever you feel you need to let off some steam. And know that my love is there for you as well.

-- eve (eve_rebekah@yahoo.com), July 25, 2000.

Consumer,

When I have a large burden to bear, it can seem overwhelming. I tend to look at ALL the problems associated with it, and realize there's NO WAY to solve them all. The solution for me is to quit looking at the big picture for a minute, take one small piece of the problem, and take care of that. When it's solved, do another, and so on.

Unfortunately, with a chronic illness new problems will always arise, but they CAN be solved, just take them one by one. And keep a list of what you've done. Sometimes it's easier to remember the bad things and forget our accomplishments. Make sure that down the line you can show yourself how much farther along you are at that point than where you were months ago.

Frank

-- Someone (ChimingIn@twocents.cam), July 25, 2000.

Consumer,

In situations like this you tend to live in a buble, where the rest of the world and life passes by without notice.

Every once in a while take a day off and go for a walk in a physically beautiful area. Look around you, notice the seasons. Not noticing the changing of the seasons is a sign of how far you have withdrawn from the world continueing on around you.

You and the rest of your family must continue to live as if you will live forever, even though your son's future appear to be limited.

Knowing he could die tomorrow or ten years from now puts you in a state of "pregrieving".

It is hell to live through, but it allows you options that do not come with a sudden, unexpected death. You can grasp experiences and put them away to be accessed and felt after his death.

Keep a notebook or diary with apointments and scedules and information etc that you will use to get things done. Keep them, they will bring back specific memories later. Also keep one with details of different things that go on even if they seem inconsequencal at the time. They will trigger memories that may normally get lost in the stress and sadness that you will be going through.

When he comes to terms with his mortality you might approach him with a request to write to those he will be leaving behind, and suggest he write a diary for himself.

It is hell to look into his eyes and KNOW he may be gone soon, knowing that there isn't anything you can do to change it. Our children are not supposed to die before us, it is frustrating to live daily with the knowledge that it is our job as parents to "fix" it for our children, and know we cannot.

Not only is this a heartbreaking time for you, it is extremely frustrating.

Remember to take care of your self during this time too.

-- Cherri (sams@brigadoon.com), July 25, 2000.