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.