A voice for Jim

A day or two ago, I posted the concern on facebook that we are being distracted from the core issue, that this country's people desperately need universal healthcare. At the end of this blog post, I'll come back to that concern, but first I want to share a very personal story of just one, middle-aged man; my brother, Jim.

My parents moved a number of times in the early years of their marriage, but settled in Indiana when I was just three years old. Jim by then was 13. Because of the age difference, I can't say that during those early years we really shared many memories, but I do know he was something of a prankster and a rebel. He was brilliantly mischievous, pulling stunts on classmates and teachers alike. A bit of a rebel, I remember our mom angry as hell chasing him around with a broom. As Jim easily danced out of her range, he shouted, "Why don't you jump on that broom and fly away, you old witch!" I rather wisely for my age kept quiet, but inside in that instant I was delighted and rolling with laughter.

Jim survived that night, and made it through high school. I was still pretty young when Jim married his first wife. They started a family very quickly, having two sons, but unfortunately their marriage didn't last. From my perspective, Jim seemed to pull away from everyone...we'd see him occasionally, and if my mom needed help with something, he would come around. I remember he had become an exterminator for a well-known company in that field. So when we had a hive of bees (rather aggressive, nasty ones at that) set up house in our little tool shed, Jim showed up to clear them out. That particular day, I found myself home alone when Jim arrived for this task. I remember my heart pounding with a dose of fear; I did not want my brother to get hurt! So I asked him, what can I do to help? Jim appeared to seriously consider this and responded, "When you see me come running past this window, open the door and let me in!" Today I can fully appreciate the humor, am laughing a bit even just writing about it, but back then I took it to heart, with my hand on the door, terrified for him.

As Jim did quietly pull away from us emotionally, he eventually did so quite literally as well...leaving Indiana far behind and settling in Texas. He and I did not maintain a close relationship; I'd hear the occasional update from another family member about him as most likely he did likewise about me. Very rarely, one of us would call the other. We never had a falling-out, but we just went on our separate paths.

I do know that Jim believed in hard work and responsibility. He took a job with a candy factory soon after moving to Texas, and unlike so many of us nowadays hopping from job to job; Jim stayed at that factory, working as a second-shift manager. He rarely missed a day, in fact often worked over-time. He tried marriage two more times, and I like to think he had some joyful days within those relationships, but eventually Jim settled into life as a bachelor. I visited him a couple times with my kids, and his door was always open, but he had in fact accepted for himself the definition of a 'well-adjusted hermit'. When his sons, now grown, visited or needed help, he always extended himself. A step-daughter from his 3rd marriage took Jim in heart as her dad, and he loved her in the same spirit, helping her as able. When our brother, Jay, needed a change in his life about five years ago, Jim welcomed him.

All this time in Texas, 20 years in fact, Jim worked, paid his bills, bought and maintained an attractive home. More than that, Jim saved a considerable sum through a 401K with his employer. I think now that as he lived this responsible, by all acounts average American life, Jim still had that rebellious streak, and that part of his nature contributed to him buying a motorcycle. Honestly, until last year, I didn't know Jim had a bike, and I guess there's no reason I would have known, considering how uninvolved we were in each other's lives. I hope and trust that bike gave him some joy, pleasing the playful side of him. As hard as he worked, he certainly earned that much.

But on October 25, 2008, the life Jim had labored to make for himself abruptly ended. Jay was home alone when the police came to the door with the news: Jim had been in an accident. He was thrown over 130 feet headfirst into a guard rail...he was alive, barely. Jay, and subsequently all the family, got our own crash course with terms like 'traumatic brain injury' and 'dysphagia'. The surgeons removed a portion of Jim's skull to both save his life and attempt to minimize the damage from his brain swelling.

As Jim survived those early days following his accident, the extent of the damage became obvious. Jim could say some words, but with the dysphagia he was unable to say the correct word, a condition often called 'word salad'. For instance, someone with this condition might be thinking, "I'm hot; please open the window", but when he speaks, all that comes out is, "...cup...". Jim, who had always been a confident communicator, found he was met with confused, worried stares whenever he tried to speak. I think just for a moment of what this frustration must've felt like to such an independent person as Jim, and I simply cannot bear it...I can and honestly do choose to push that thought out of my mind, but for Jim there was no such option. Partially paralyzed, unable to read, write or effectively speak, with the left side of his skull missing, this was his reality.

But, the doctors offered hope. With intensive rehabilitation, Jim could learn to walk again. He could relearn basic activities of daily living, regain some degree of communication skills. Jay, as Jim's brother, friend, and biggest advocate, took on the daunting task of speaking for Jim. Jay communicated with Jim's employer, and their insurance provider; a company well known to many but of which I'd never known about...Great West.

Great West began denying virtually all claims submitted for Jim's healthcare. Yes, he was covered. Yes, we still have unanswered questions about the denials...but the fact remains that Great West would not pay. Jay did everything he or anyone could, and he did his best to keep the financial concerns away from Jim. An excellent residential rehabilitation facility was chosen; and initially Great West approved this placement. But early on, the insurance company changed their tune, insisting that Jim was not a candidate for rehabilitation but rather should be institutionalized in a skilled nursing facility for maintenance-only care. His doctors protested, presenting the facts and statistics about how much progress can be made in the first six to twelve months post injury. Jay challenged and protested, as did many other advocates for Jim...but it all fell on deaf ears.

The apparent reason Great West advised Jim go to a nursing home is simple: Jim's policy excluded nursing homes, so once he was out of rehabilitation, Great West would be done with him. The rehab facility needed payment, and agreed to a reduced fee of an astounding $3,200 per week, payable every Friday, in order to continue treating Jim. We all kept thinking, the insurance company will have to honor the policy and will eventually relent, but of course they never did. Worse, Jim one day overheard staff speaking of this outrage (there was little wrong with his hearing or comprehension). He was devastated. Jim stopped cooperating with the therapists. He struggled to get out the words, "Old brain...gone. New brain...no good. Money--no pay". Jim lost hope, what little he'd managed to hold onto until then evaporated. In his despondency, he would weep, saying, "work...work...gone". Without a doubt, I know he saw clearly his life: He'd done what he was supposed to do, working and saving day in and day out for so many years...quietly hoping for the day when he could do some fishing, read, and rest, proud of his accomplishments in his lifetime. Instead, he would lose his home, his savings...headed for institutional care penniless, just waiting to die. Without the rehabilitation, this would be his existence.

Jim fell seriously ill in March, following a surgery to repair the missing section of skull. With intensive antibiotic therapy which took several weeks meaning a disastrous disruption in his rehab...a terrible setback, Jim did survive the infection. And still, Great West refused to pay for these services either. Truly out of resources and running low on options, Jim was finally transferred in late April, 2008, to a nursing home. Our sister, Becky, began arrangements for Jim to be brought to Indiana and stay with her at least temporarily, while we figured out what to do next. But Jim succombed to infection again, just days after finishing aggressive antibiotics. He'd been through such intensive antibiotic treatment just earlier, that we all understood Jim was not going to survive. His doctor supported the decision that Jim would go home with hospice care, telling us that Jim had maybe as much as three days to live. Those of us who could went to Texas for Jim's final days.

Jim, a tall handsome man at 6'3", had wasted away from 230 pounds to 136 pounds in just over four months. Sitting with him, I could still sense his strength. Throughout the day before he passed on, there was a storm brewing. Ominous, energy-charged clouds would gather, appear ready to burst...then dissipate a bit without so much as a drop of rain or a good windy gust. This promise of a storm teased 3 or 4 times that day. Finally, at 1:40a.m. May 16, 2009, Jim left this world. As he did, the power went out for a few seconds. Within the following hour, the storm hit, releasing all the tension that had been building...a cleansing rain our hearts and spirits surely needed as we grieved.

Jim to my knowledge never talked about the American dream, but by his life clearly he had believed that hard work and a good sense of personal responsibility would pay off in the end. Jim was employed with a company that provided what appeared to be adequate health insurance. Yet here he was, in the end a man who died not just penniless, but in debt. His savings and material assets only covered a fraction of the expenses. I hope and trust that he knew he had his family with him, that he was loved and admired by us, and will always be remembered.

At the beginning of this post, I mentioned we're getting distracted from the issue of universal healthcare, and I said I'd come back to this. As we are surely headed toward some sort of reform, special interest groups are clamoring to be heard, to assure their goals are best met in any changes. Others (perhaps Great West) are calculating how any changes will dip into their profits. Not pleased with the figures, they are feeding our fears, filling us with doubt. I won't say here which special interests I personally hope are favored, nor will I talk about the fears. Instead, I just have a request: Look simply at your own history with healthcare, then at your family's experiences. Take it another step if you can and think of your friends, neighbors or larger community. Think of how many times you've dropped your change into the donation can at the gas station, with the picture of someone who needs medical treatment but can't afford it. I'm asking you to look at these very real, personal examples of what our current system is doing...or failing to do...every day.

I'm confident if we just focus on the real examples in our own lives, the distractions will lose their ability to confuse, anger or frighten us. We all need this reform, and must get that very simple, very real fact across to our political leaders.