An Update - Part 2

Sorry it's taken me so long to finish this story. Thanks to Polarimbi for her message which made me remember to finish this.

 As I wrote earlier, my son's cancer had spread, and the necessary chemo left him infertile. They had been trying for children for a couple years before his cancer diagnosis, so this was bad news. But they had frozen some sperm before his surgery, and after his chemo and the initial diagnosis that he was in remission, they decided to undergo fertilization. They tried a couple times without success. They're a young couple, he was a small town newspaper editor, and fertilization is expensive. They'd try, save more money, and try again. They tried in vitro, which has a higher success rate, but that was much more expensive, and they struck out there also. Someone told them about a third method, which was almost as effective as in vitro, but much less expensive, and they tried it. Success. They went in for a check up not long after the good news, and the doc said "you better sit down." The baby didn't make it. They were crushed, but still determined. Saved some more, and did it again. Success. They were having twins. They were floating on cloud 9, and we were all elated. A couple weeks later they went for a check up, and the doc said "you better sit down." They lost one of their twins. I can't imagine the roller coaster those kids were on over those 2+ years. So 2 weeks later they went in for their next check up. Once again the words "you better sit down." The doc explained that the embryo separated. They were puzzled, until she told them they were having identical twins. Twins are common with fertilization, but identical twins happen at the same rate as regular conception. The embryo splits, and it's a rare occurence. They are now almost 3 years old, and are 2 of the smartest, sweetest, cutest boys ever.

 But there's more.

 My youngest son and his wife had also been trying to conceive, but without success. Greg told them about this fertilization method, and they tried it. Success. Things were looking good. Then a couple weeks later at a checkup they got the dreaded words "you better sit down." The doc explained that the embryo separated... You guessed it - 2 more identical twin boys, 9 months younger. They're smart, loving, and absolutely adorable. My wife and I went from zero grandkids to four in 9 months. What are the odds? It's mindblowing. And it's all Ryan. Not only did he possibly save his brother's life, he set in motion the events that led to these beautiful children. And I don't believe for a second that 2 sets of identical twin boys came about without intervention of some sort. It's just too freaky.

 But there's more.

 Greg and family lived several hours away, where he was a small town newspaper editor. As is common in a smaller town, he got the pitch about becoming a volunteer firefighter. Wanting to become an active part of the community, he agreed. He discovered a passion. It didn't take the town long to offer him a paid position, and he left his newspaper job. Soon after he took a career firefighter position in a nearby larger college town. Shortly after that he was hired by the fire department in our city, a larger city, and his hometown. They found a house 6 blocks away from his brother. So we now have all our grandkids 10 minutes away, and the brothers and all 4 boys are living only a few blocks apart. They'll go to the same school. Can you imagine? I'm not sure Ryan orchestrated this part, but he would be pleased. His family was important to him, and he was very close to his brothers. He would have loved his nephews, and been a great uncle.

A few months ago Greg had a check up, and they declared him cancer free.  No more regular checkups.  No more extended warranty.  He kicked it's butt.

 I try to wrap my head around all these events, and look at things logically. But it just doesn't work, there's nothing logical about anything that happened. I know Ryan would have given his life for any of his family or friends. But his passing was an accident, a true fluke. There was no way he could have orchestrated that for the purposes of saving another life. But yet...

An Update - Part 1

(Cross posted to Bipolar Support and Living With A Purple Dog)

I haven't updated this blog since Ryan passed, but it's time to come back and tell a story of events that only Ryan could orchestrate. This is a story where, if you aren't familiar with Ryan and his life, might sound like random events. We know better.

Ryan and his older brother, we'll call him Greg, were only 19 months apart, and were very close. They did everything together. After Ryan passed, on the anniversary of his death, Greg decided to honor Ryan by stepping outside his comfort zone and doing something he wouldn't otherwise do. Ryan was a fearless free spirit, and it was a fitting tribute. One year he went skydiving, another year he ate Chinese food. Then the third year...

On the third anniversary of Ryan's death, Greg went horseback riding. He'd been on trail horses at camp, but never wind-in-his-hair, exhilarating riding. It was the great experience he hoped for. Another fitting tribute. The next day he was sore - that's to be expected, right? Except it didn't go away. After several days he decided to get it checked out. His doctor got somber and told him to run, not walk, to the hospital. There they diagnosed him with testicular cancer. They scheduled him for surgery the next day. Not to minimize any cancer, but testicular cancer caught early is rarely life-threatening. A lot depends on when it's caught, and the particular situation.

Taking a slight detour here. Testicular cancer usually involves removal of the affected testicle, and after a period of time, fertility returns to a normal level. But we encouraged him to freeze some sperm before the surgery, and he said they'd consider it. Well, they did. Can you imagine a young couple trying to produce sperm after being diagnosed with cancer, knowing surgery was early the next day? My perverse sense of humor makes me chuckle every time I think about it.

Surgery went well, but after a CT scan they scheduled him for aggressive chemo. It was miserable, but successful. Except the chemo left him sterile.

Over the next year or so he underwent numerous examinations and scans, which eventually led to a clean bill of health - he was in remission, and they had no reason to suspect the cancer would return.

End of part one - if it wasn't for honoring his late brother, it's possible Greg's cancer wouldn't have been discovered soon enough for the positive outcome he received. I truly believe Ryan orchestrated this. And since he went that far, watch for part 2 of this post...

The Disability Hearing

About a month ago we had a call from Ryan's (Kyle's) attorney saying a date had been set for his disability claim hearing. He had made application a long time before he died, was rejected (as are most), and the attorney filed an appeal. It seems like this happened quite a while before he died. 20 months after he left us, he finally gets a disability hearing. We were ready to walk away, I have no interest in taking money from the Social Security Administration after he's gone, but the wife and I discussed it and decided that, if for no other reason, the attorney could recover some of her costs. She really is a caring and compassionate person. So we decided to proceed.

We walked into the hearing room and there was my wife and I, Ryan's attorney, the judge, a medical expert on speaker phone, and a vocational expert. They all had files as thick as a big-city phone book. They were referencing many exhibits, sub-exhibits, schedules, and so forth. They had his counseling records, his medical and hospital records, his psychiatrist's records. Things he'd NEVER want to share with anyone, and it was an open book. To hear his life reduced to a stack of papers was almost more than I could handle, and I choked up at times during the testimony. There was information read aloud he would NEVER want us, let alone others, to know. It was really sad. We wanted them to know what a caring, compassionate, loving, brilliant kid he was, but that wasn't material to the case.

The system is broken, probably irreparably. It's designed to deny benefits rather than help those in need. It sucks out the motivation, the self-worth, the soul of those attempting to collect disability. Unfortunately, it won't change, given the state of politics today.

The weeks leading up to this, both my wife and I fell into a depression. The deepest depression I've had since he died. The day after the hearing, we're both improving a bit, but it may take a while.

A Chapter Read and Closed

It's been almost 10 months since Ryan (Kyle) died. The sharpness of the pain has faded, and that hurts also. It's like we're no longer feeling his death like we used to, and that brings about feelings of guilt. Last night we were eating dinner and the phone rang. Someone asked for Ryan, and my daughter handed the phone to me. It was a recruiter. I told her Ryan passed away, she felt bad, and said she wouldn't call again. I hung up, and we all sat there and cried. But those times are less frequent.

I've been asked why I'm no longer blogging. I am, albeit infrequently. I'm also spending time on Facebook. My blog is a general blog, meant to give a personal outlet. I no longer blog about my bipolar disorder, the sharing of that part of my life is gone with Ryan. I have moved on. I'm not removing this blog, or our BipolarSupport.blogspot.com blog. I'm leaving them up as a reminder to me of how much things have changed, and as a reminder of yet another chapter in my life that is read and done.

Here's a favorite family picture from either 1995 or 1996. Ryan is sitting next to my wife, posing, as he did for every picture we took of him:

A Few Pictures

It's been a rough 10 weeks, and it's time to post a few pictures.

Our Ryan (Kyle) a couple of years ago.

Ryan (Kyle), his girlfriend, EJ, and his little sister. He was so good with his sisters, the greatest big brother they could ever want.

Ryan (Kyle) and Mom.

It's been a bitch, but everyone is making it through each day. I may do another post in the future about some of the support resources we found.

Thanks To All

Thanks to all for the thoughts, prayers, emails, flowers, and everything else. It means more to us than you'll ever know. Sorry if I haven't personally responded, it's hard enough to tie my shoes.

We're still around, battling through. I may post more later, but wanted to say thanks.

Final Thoughts

My wife used to say that our kids were a stable of thoroughbreds. We had 4 magnificent stallions and a unicorn. The unicorn was beautiful, magical, and enhanced the lives of anyone crossing his path. He was creative and brilliant. He taught us about true forgiveness. He taught us to love unconditionally and not to judge. He taught us to laugh and have fun under any circumstance. Over the years we tried, foolishly, to turn the unicorn into a stallion. The unicorn tried valiantly to become a stallion. We all came to realize that a unicorn is magic, and can’t be kept forever. Kyle was our unicorn, and we were blessed to have him 24 years.

Kyle's (Ryan to us) memorial service was yesterday. There were hundreds of people - so many people they had to set up folding chairs in the hallway outside the door. It was an awe-inspiring testament to the power of his life, and the impact he made on so many people's lives. He packed more living in his 24 years than most people would in 10 lifetimes. The service was beautiful. Kyle was a very spiritual person, and had a couple scripture verses on his wall they incorporated into the service. We sang his favorite hymn - "Life Flows On In Endless Song" at the end. There was a guitarist playing 2 songs by his favorite band, Five Iron Frenzy, "Every New Day" and "If You Could See Me Now". It was wonderful.

Now comes the inevitable soul-searching.

I'm wondering if it was a mistake to medicate Kyle. My wife says absolutely not, it was the right thing to do. His most debilitating symptom prior to treatment was his all or nothing perfectionism that manifested itself in terrible outbursts of temper. Not directed at other people, but at himself. It was so painful to watch. His treatment did take care of that, and we were all thankful.

But as things went on, as so often happens, one med begets another, and before long he has a laundry list of medication. He was medicated to the point he wasn't experiencing life at all. His last 2 weeks seemed to be good weeks for him, but he still seemed over-medicated.

His doctors and care workers were exceptional. This was NOT a case where they callously over-medicated. But Kyle would ask for more and more. He couldn't sleep, or his anxiety was particularly bad, and so forth. The doctors, truly interested in his comfort, would try to help him. This is how he ended up with such a large amount of daily meds.

His death appears to be a freak accident. He fell face first into a coffee table in his room. The TV cord was exposed, and the TV was on the ground. We are guessing he tripped on the TV cord, and fell into the table. This accident could have happened with or without medication or alcohol, so I'm not blaming his death on that.

So why am I questioning if medication was the right choice? It comes down to a quality of life issue. Early in his treatment, when the Lamictal started to balance him and took away his inward-turned angry outbursts it was a very good thing. As things continued, and they added more and more medication, he lost the ability to do many things. Towards the end he was having a hard time leaving the house or meeting anyone. The disabilities he'd acquired were as debilitating as the one's he'd fixed. Having the benefit of hindsight I'm wishing he could have lived his last few months in a different way. Or do I? The last few months were very memorable to my daughters, who would hang out and play games with him every day this summer. The old Kyle would have been gone half of the time, and we'd have been worried constantly.

I will wrestle with this the rest of my life.

If anyone else is in the same boat, take your child for who they are. My wife checked on Kyle every day. She hugged him every day, and told him she loved him every day of his life. Whether he was in treatment or not, or properly medicated or not, is meaningless. It likely didn't impact when he died. What did matter were the people and opportunities that made him feel good about himself. The opportunities his family had to make him feel loved and important. That we can look back and know we hugged and told him we loved him. When it's over, unconditional love is all that matters.

We'll Miss You Kyle

Our son Kyle has left us, he was killed today in an accident in our home. He was 24 years old.

While Kyle suffered terribly at times, he also lived life to the fullest, and loved more deeply than words could describe. My wife used to say, "he was a unicorn in a stable of thoroughbreds."

I'm going to miss you, kid.

Stick A Fork In Me...

Stick a fork in me, I'm done.

Maybe.

I've hit that place where the need and desire to blog is no longer there. My former colleague, advocate John McManamy tells me this is one of the last steps in the recovery process. I suppose he's right, I really want to put this all behind me. I'm tired of having life revolve around my bipolar disorder symptoms.

Let me be clear - this is not to say I've recovered. I'll never be "recovered". But I'll never get any closer by dwelling on my disorder all day every day. This is a necessary step for me to move closer to the mainstream.

Kyle is doing well, and thanks to all who have written and asked. He's moderately stable, and his drinking seems to be diminished. But they have him on benzos for anxiety, and that worries me. It HAS helped him, but I dread the inevitable withdrawal.

I'm having a very hard time responding to emails and comments, and for this I apologize. I've received some long emails from people who are hurting, and I'm not capable of reading the entire message. If I haven't responded to you in a week or two I'm sorry, but I probably won't. My inbox is so full any older messages won't ever make it back to the top of the stack. But I still would like to hear from friends.

I've been blogging long enough to know that most serious bloggers who say goodbye are back within a month. I won't say I'll never post again, but it will be even less frequent than it is now.

Thanks to all for the support and friendship over the years.

It's Very Clear

It's very clear, at least to me, that I have lost some cognitive ability in the last several years. I just finished my second week of training on the new job and it's not been pretty. We are working examples along with the instructor, and the class is waiting for me at every step. I am that old person that I used to hate when I was younger because they slowed me down. Back then I moved a million miles an hour, and could accomplish anything. It's not that way anymore. The problem is, I know what I used to be, and it's hard to accept less.

Now I'm not saying this to elicit sympathy. While frustrating, I'm finding this quite interesting. I think, whether right or wrong, that this is a result of my treatment. From the time I took my first psych med I've been fascinated by what each med does to me. Some meds have been helpful, some have been horrifying. My current scenario is another way I've been impacted by psych meds. I'm NOT saying it's a mistake to be taking psych meds, I firmly believe my family is much better off since I began treatment. But it's made me average, or maybe even a little below average in some ways. And that's hard to take.

Enough for this week. It's Friday and this will be a great weekend.

Officers Leave Man in Shackles in Lobby of Mental Hospital

Officers Leave Man in Shackles in Lobby of Mental Hospital

A Sarpy County judge created a potentially dangerous situation by ordering two deputies to leave a 19-year-old jail inmate with mental problems at a psychiatric hospital, even though the hospital did not have room, a state official said Friday.

The deputies left the man in shackles in the hospital lobby.

Sarpy County Attorney Lee Polikov defended Judge Robert Wester's decision, saying that the Lincoln Regional Center should have had the bed space needed to accommodate the man.

"I think what's out of line is that the system doesn't have adequate facilities for mental care," Polikov said. "I can't speak for the judge, but I'm not sure what his alternatives were."

Wester determined Thursday that the man was incompetent to stand trial and told Sarpy County Deputies John Sorensen and Ken Miller to transport him to the Lincoln Regional Center. The man was in court on an assault charge and a couple of traffic offenses.

People are routinely held at the regional center until they are considered mentally prepared for trial.

When deputies arrived at the regional center, officials there told them there was no room for the man. The deputies notified the judge, who told them to leave the man there or go to jail themselves for being in contempt of his orders, said Sarpy County Sheriff Jeff Davis.

"The judge said, 'Look, I gave you an order, and you've got to walk away,'" Davis said. "He said, 'I'm giving you an order, and if you defy that order, you'll be in contempt.'"

This is incomprehensible. But given the county, no surprise. This county contains Offutt Air Force Base, the home of Stratcom. It's a well-populated county, yet the entire criminal justice system of Sarpy County Nebraska is so harsh, ignorant, and backwards, it's mind boggling.

Angel Food

There's a program in the US called Angel Food. I first heard about it when my son wrote a newspaper article about a small town in Iowa doing this. Then our local DBSA chapter started talking about it. It's a wonderful program to buy food VERY inexpensively.

Food is sold in units, and units are $30.00. The unit contains a variety of food, relatively healthy choices, and should sustain a family for a week or so. Below is this month's menu:

2 lb. Fully Cooked Meatloaf
1 lb. Beef Fajita Strips
3 lb. Breaded Frying Chicken
2 lb. St. Louis Style Ribs
2 lb. Lasagna Dinner Entrée
1 lb. Gourmet Sausage
1 lb. Fully Cooked Meatballs
16 oz. Broccoli
15 oz. Refried Beans
12 ct. Tortillas
26 oz. Pasta Sauce
16 oz. Pasta
6 oz. Pancake Mix
16 oz. Fresh Carrots
3 lb. Golden Yukon Potatoes
4 oz. Chicken Noodle Soup (Makes 64 oz.)
4 lb. California Oranges
1 Dessert Item

All that for thirty bucks. In addition, there are a few other "add-on" units of meat you can get very cheap also.

It's easy to do, you go the the website, http://www.angelfoodministries.com/ to locate your closest distribution point. You contact them with your order, then pick up on the distribution day. Bring a large box (a large roughneck storage tub is great). You may wait in line to pick up, the program is getting popular.

Scared

As I mentioned earlier, I just started a new job. Like most of you out there, I'm not lacking in intelligence. Intelligence seems to be a bipolar trait. But for the first time in my life, I feel inadequate in that respect. I started a month of classroom training, and I'm being left in the dust. I'm no stranger to classrooms, I have a bachelors degree, went back for a technical associates, and have taken several other classes since. After my bachelors, I never received a grade lower than A. I HAVE to be one of the best in the class, it's my nature, there is no other option. But at this point I'm not fighting to be the top in the class, I'm struggling to survive.

This has been an obsessive concern of mine over the last several years, that my meds are slowing me down mentally. I suspected it, but never had a way of quantifying or validating those concerns. After today I'm as certain as I can be. Unless I'm in class with a bunch of damn Einsteins there's no way they're all going to be sharper than me.

I'm more than a little scared.

New Chapter In LIfe

A lot going on right now.

I started a new job this week as a consultant for a large, well-known insurance company. I love it. They run a tight ship, for example there's no internet access at all. But I gain a lot, such as great working conditions and people, and of course, more income.

Next, I gave up my gig at BipolarConnect. I loved the money, but it was time to move on.

There's been more, and I'll follow up.

Redesign Thoughts

It's not perfect, and it's not exactly what I was after. But it's better than it was. There's still a lot to do, little tweaks that will take weeks to finish.

I have always loved Blogger. A lot of bang for a secure, easy to use, free product. To me the benefits have always outweighed the limitations. After this redesign I'm not so sure. I'm seriously thinking about moving to Wordpress - not the free online version, the full hosted solution with your own domain. Here's how they stack up:

Ease of Use:
Blogger by a mile. Non-techies can be up and blogging in minutes. Wordpress requires some geeky research and practice. You'll figure it out, but it's not blogger.

Features:
Wordpress by a mile. You can use Wordpress as a blog, or as a full-blown content management system. The add-ons, widgets, and theme options are limitless. For Blogger it's not terrible, but it doesn't compare with Wordpress.

Security:
Blogger by a country mile. When you put your blog on blogger it will be there. In a month, a year, or more. It's not going anywhere. For Wordpress if you, for example, go to the hospital and can't pay for your webhosting, it's possible a webhost (not me) would delete your account. If you're not backed up (are we ever adequately backed up?) you've lost everything you've worked so hard on. If that happens to you, call me, I'll sit with you on the first suicide watch.

Design:
Wordpress. There is so much flexibility in design. Blogger is better than they used to be, but it's still not easy to get a custom design on Blogger.

Spam:
Blogger is incredibly good at recognizing and killing spam. Wordpress is getting better, but it's a clumsy process with a sophomoric look. For such a professional product, I expect more.

How about others? Any pros or cons?

Beginning Redesign

Unfortunately you can't take Blogger off-line while you make changes. So if you visit in the next hour or two you could find anything. With a little luck it will only take an hour or two.

Overlooked Emails

Over the last couple of months my frame of mind was so bad I was not capable of answering email. Today I was finally able to do some cleaning, and I filtered out hundreds of emails I could not possibly answer. I still have them, I filtered them into folders. But if you sent me an email I did not answer, my sincere apologies. Please send again and I'll do my best to answer.

Site Redesign

Doing a complete site redesign. I'm tired of this plain look, and want something different. So if you see my blog up and down, you'll know why.

Another Manic Discovery

Please don't try this at home, I'm a professional.

Sleep medication Ambien (Zolpidem)is some good shit. Some REAL good shit. When I'm not manic, 5 mg knocks me out. Most need 10 mg. But if you stay awake through that, it's like 6 or 7 scotches (PLEASE don't drink and do this, I want you as a reader tomorrow). Take 20 milligrams and you'll be talking to people who aren't there. Or maybe they really are, and you only see them in your dimension...

Sleep walking is common, as is sleep eating, and even sleep sex. My wife says she's gotten quite a bit lately. To that I want to know - was I any good? Did I seem to enjoy it? Was it more or less kinky than my normal self? I halfway expect to see a case of Ambien show up on my doorstep, ordered by wife from some remote pacific island where they can't even read a script.

This has been an interesting month.

First, the mania is hanging tough. The negative effects of the mania aren't nearly as strong as they were, and it's not as debilitating, but it's still there. Sleep still comes grudgingly, I still can't read, I still can't write, I couldn't begin to hold my hand steady, but the danger is gone. I'm not going to OD, or do anything incredibly stupid, although I came close on both counts.

I got a new job! Out of the blue a recruiter I'd worked with in the past called me. I told her I wasn't looking around, but I'd be willing to listen. I listened, she was looking for a consultant to be placed with one of the worlds largest insurance companies. It really was an interesting position, so my curiosity piqued, I agreed to talk to the employer. This was Monday. Tuesday afternoon I interviewed. Wednesday the recruiter called to say I "rocked their world". Thursday I had an offer in hand. So I went from being more or less contented with my job to having a new career in 4 days. How about that? In the interview I had zero problem with energy, enthuiasm, and conversation. Finally something positive about the mania?

I'm Watching American Idol's charity show right now. It's a barometer of Bono's career, isn't it? As he winds down, they have to wind up their fundraising.

I was flattered to receive an email from Andy Behrman - Electroboy. If you haven't read his book, it's a great read. Head over to his website and sign up for his newsletter.

My webhosting business is doing well, HomepageWebs (gjx.us). If you know anyone needing webhosting, drop me a line.

Kyle is doing great lately. More details later.

Thanks to all for your emails and thoughts. It's much appreciated.