On Monday it will be 10 years since I contracted meningitis and my first life ended. The April 28 anniversary always makes me reflective, but this year I've had two very powerful moments I'd like to share, so I figured I'd resurrect this long-dormant blog.
The first emotional moment came about a month ago. I was attending church at St. John the Evangelist in Lawrence — a cozy, spirited place I've really come to like. The gospel reading that day was from John, chapter 9, and if you've read my book you know those verses mean a lot to me.
Jesus encounters a man blind from birth and his disciples ask whether it was the man or his parents whose sin caused him to be born blind.
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."
As I heard the familiar Bible passage again, I started thinking of all the things the last 10 years have brought. I was in about a dozen weddings, met my two nieces, got my first full-time job, spoke at the KU journalism commencement, got a master's degree, lived on the East Coast and made new friends there, met scores of inspiring people through meningitis advocacy groups, traveled to Brazil, returned to Europe and published a book.
Beyond that, my story has touched so many people that I could never have reached without the adversity put in my path.
As I was thinking about that adversity, one of my favorite hymns began to play. The refrain goes like this: "Do not be afraid, I am with you. I have called you each by name. Come and follow me, I will bring you home. I love you and you are mine."
Tears welled up in my eyes and my heart was full. It felt like God was singing directly to me, through the choir and congregation. I do not talk about my faith every day, and I will never claim to have all the spiritual answers for everyone. But I truly believe I would never have recovered as I have in the last 10 years without my faith in a God that knows suffering, that feels it with us and will bring us "home" some day.
The second emotional moment also involved music, though of a more secular nature and in a much different setting. It happened last week on a beach called Pocitos in Montevideo, Uruguay.
My brother Dan and I were nearing the end of a spectacular two-week romp through Brazil, Argentina and Uruguay. It was only about 70 degrees, but we had rented beach chairs and I was sitting with my pants legs rolled up and what's left of my feet sitting in the sand, awaiting the occasional big wave to wash some of the Atlantic Ocean over them. I sat with the sun on my face, watching far-off sailboats, in a state of deep relaxation.
I had my earbuds on and was listening to my iPhone on shuffle when the song "Give Me Strength" by Snow Patrol came on. The song opens with the line "I choked back tears today, because I can’t begin to say how much you've shaped this boy,
these last ten years or more." That naturally made me think of my impending anniversary.
I won't repeat all the lyrics here, but I highly recommend the song. Suffice it to say, it made me think of my friends and family and all the support they've given me to get me where I am. And again, the sense of emotional gratitude was almost overwhelming.
"You give the strength to me, a strength I never had,
I was a mess you see, I'd lost the plot so bad,
you dragged me up and out, out of the darkest place,
there's not a single doubt when I can see your faces."
I am so happy to have survived these 10 years to learn more about what God has in store for me, what I can do for the world and to grow in my relationships. And I'm looking forward to seeing what comes next, starting with Thursday's book signing at Barnes and Noble in Topeka to mark World Meningitis Day.
Tuesday, April 22, 2014
Saturday, April 28, 2012
A call for bone marrow donors
Here's a confession: I can rarely make it through an episode of Extreme Makeover: Home Edition without tearing up. Occasionally I'll make it nearly to the end, but the part where the family with the renovated house thanks all the hundreds of community members who made it happen always gets me.
I didn't make it nearly that far during the Lizzie Bell episode. That one had me bawling like a baby from, oh about minute 22 throughout the rest of the hour. That one I had something of a personal stake in.
Lizzie lives in Arizona, and we've never met, but we're related. We're second cousins, or second cousins once removed or something like that. Bottom line, my mom and her dad come from the same family.
Lizzie's got a condition called Diamond Blackfan Anemia that over the years has had in and out of the hospital and needing regular blood transfusions. Having spent some time in hospitals myself, I felt a kinship with her. But where I was generally laser-focused on myself during my illness, hers has spurred her to focus on others. For years now she's been organizing blood drives and collecting toys to hand out to other hospitalized kids (Lizzie's Loot).
That's what got her and the family on Extreme Makeover, so that I could have a good cry.
Lizzie's about to turn 18, and she needs a bone marrow transplant. Thus far, she's had no luck finding a matching donor. Her mom is Latino, which complicates things because all ethnic minorities are underrepresented on the U.S. bone marrow registry.
We need more people on that registry. More people of all races. So if you haven't yet registered your DNA, please consider doing so. All you have to do is swab your inner cheek and then put that little piece of cotton in the mail. Science does the rest, I guess. Biology's never been my strong suit.
I didn't make it nearly that far during the Lizzie Bell episode. That one had me bawling like a baby from, oh about minute 22 throughout the rest of the hour. That one I had something of a personal stake in.
Lizzie lives in Arizona, and we've never met, but we're related. We're second cousins, or second cousins once removed or something like that. Bottom line, my mom and her dad come from the same family.
Lizzie's got a condition called Diamond Blackfan Anemia that over the years has had in and out of the hospital and needing regular blood transfusions. Having spent some time in hospitals myself, I felt a kinship with her. But where I was generally laser-focused on myself during my illness, hers has spurred her to focus on others. For years now she's been organizing blood drives and collecting toys to hand out to other hospitalized kids (Lizzie's Loot).
That's what got her and the family on Extreme Makeover, so that I could have a good cry.
Lizzie's about to turn 18, and she needs a bone marrow transplant. Thus far, she's had no luck finding a matching donor. Her mom is Latino, which complicates things because all ethnic minorities are underrepresented on the U.S. bone marrow registry.
We need more people on that registry. More people of all races. So if you haven't yet registered your DNA, please consider doing so. All you have to do is swab your inner cheek and then put that little piece of cotton in the mail. Science does the rest, I guess. Biology's never been my strong suit.
Monday, April 9, 2012
Digging deep for some Twins positives
One of the attractions of going home for Eater weekend this year (along with somewhat significant stuff like seeing family and friends and celebrating the resurrection of Jesus), was being able to watch the Twins' opening series against Baltimore.
Those who shared that experience with me know that the joy of it was slightly tempered by the fact that the Twins played absolutely awful baseball. I'm not a fair-weather fan. Anyone who went to high school with me can probably tell you I was loyal to the team even then when one could count on it finding the bottom of the standings as surely as a catfish finding the bottom of a river. But this is the first time in a long time that I'm just not particularly optimistic about the season. It seems like the franchise is moving in the wrong direction by subtracting Thome, Kubel and Cuddyer without adding a whole lot.
Still, I feel like I gotta try and find some positives from opening weekend — not so much for myself but for my grandma, who will watch most of these 162 games no matter how bad they are (unless my brother hijacks her TV for cable news purposes):
-- Justin Morneau is back (and swinging well): Morneau went 4-for-10 with two doubles over the weekend, taking fat pitches and quality pitches and driving them hard. Morneau's concussion was arguably the most frustrating injury an athlete can suffer. The symptoms can linger indefinitely (just ask Sidney Crosby), even though you look perfectly fine and feel pretty good doing most everyday activities. There's no timeline for recovery and no surgery, physical therapy or herbal voodoo (that I know of) that can help. I've had one concussion in my life and I don't even think it was all that severe, but it still scared the bejeebers out of me, as it temporarily wiped out my short-term memory almost completely. The takeaway? Head injuries are nothing to mess with. It's great to see Morneau back, even just DH-ing, and if he can hit anywhere near his MVP numbers, it would go a long way to off-setting the loss of Kubel and Thome's lefty power.
-- The new additions are doing their thing: Rather than making a splash in the off-season, the Twins made their usual modest ripple. But the returns are good so far. Josh Willingham went 3-for-9 with a homer, a double and three RBI at the plate, provided an unlikely defensive boost when he threw a runner out at home, and appeared in one of the more entertaining Twins commercials in recent memory (The Big Herbowksi). If he continues to hit like that, he'll go a long way to replacing Cuddy's right-handed bat (though I don't think he'll ever throw out runners like Cuddy). The other main addition, Jamey Carroll, hasn't hit a thing. But he was brought in primarily to shore up shortstop and he's done that thus far, with a slew of defensive gems and no notable mistakes. Very important, considering last year's SS experiment, Nishioka, appeared to lose his fielding and hitting ability on the flight over from Japan (kids, take note: that's why you always pack your skill set in your carry-on bag and don't risk checking it).
-- A pretty good outing from a No. 6 starter: Anthony Swarzak was supposed to begin the season in the bullpen, but got a surprise start due to a bout of food poisoning for Liam Hendriks (which gave me a bout of morbid curiosity, wondering if he got it from any place I once ate in Baltimore). Swarzak responded by going five strong innings with a solo homer his only blemish (he probably should have been given the ball for the sixth, which was when the bullpen more or less blew it). Guys like Swarzak and Brian Duensing have had some good stretches as starters in the past and having that kind of depth can only help when the usual bit of elbow soreness, shoulder issues or uncontrollable vomiting rear their ugly heads.
Unfortunately, the back-loading of the rotation that pushed out guys like Swarzak and Duensing also accentuates one of the Twins' greatest weaknesses: the lack of a legitimate (or even close enough to be passable) top-of-the-rotation ace. In short, what they have is about 7 or 8 guys who would make good No. 4 or 5 starters. Carl Pavano might be a No. 3, and he can eat innings, but he's not an ace.
In my humble opinion, this has been the organization's biggest failing of late. The Twins haven't had an ace since Francisco Liriano blew out his elbow. I held out for a Tommy John miracle for a couple years, but it doesn't look like Liriano's gonna get one. He has to rely on his head as much as his arm now, and that's never a good equation for a head case.
An ace would push all the other pitchers back in the rotation, into much more natural spots. But as far as I can tell, there's only three ways to get one: draft one, pay through the nose in free agency or trade a boatload of prospects to get one mid-season from a team that's fallen out of contention.
The Twins haven't been able to draft one, they've shown no inclination to spend that kind of free-agent money (nor should they, necessarily — it's a huge risk) and they seem to no longer have the prospect haul to even propose a trade that a team with an ace wouldn't just chuckle at and move on. That being the case, the Twins may end up being that team that falls out of contention at mid-season. For Grandma's sake, I hope I'm wrong.
Those who shared that experience with me know that the joy of it was slightly tempered by the fact that the Twins played absolutely awful baseball. I'm not a fair-weather fan. Anyone who went to high school with me can probably tell you I was loyal to the team even then when one could count on it finding the bottom of the standings as surely as a catfish finding the bottom of a river. But this is the first time in a long time that I'm just not particularly optimistic about the season. It seems like the franchise is moving in the wrong direction by subtracting Thome, Kubel and Cuddyer without adding a whole lot.
Still, I feel like I gotta try and find some positives from opening weekend — not so much for myself but for my grandma, who will watch most of these 162 games no matter how bad they are (unless my brother hijacks her TV for cable news purposes):
-- Justin Morneau is back (and swinging well): Morneau went 4-for-10 with two doubles over the weekend, taking fat pitches and quality pitches and driving them hard. Morneau's concussion was arguably the most frustrating injury an athlete can suffer. The symptoms can linger indefinitely (just ask Sidney Crosby), even though you look perfectly fine and feel pretty good doing most everyday activities. There's no timeline for recovery and no surgery, physical therapy or herbal voodoo (that I know of) that can help. I've had one concussion in my life and I don't even think it was all that severe, but it still scared the bejeebers out of me, as it temporarily wiped out my short-term memory almost completely. The takeaway? Head injuries are nothing to mess with. It's great to see Morneau back, even just DH-ing, and if he can hit anywhere near his MVP numbers, it would go a long way to off-setting the loss of Kubel and Thome's lefty power.
-- The new additions are doing their thing: Rather than making a splash in the off-season, the Twins made their usual modest ripple. But the returns are good so far. Josh Willingham went 3-for-9 with a homer, a double and three RBI at the plate, provided an unlikely defensive boost when he threw a runner out at home, and appeared in one of the more entertaining Twins commercials in recent memory (The Big Herbowksi). If he continues to hit like that, he'll go a long way to replacing Cuddy's right-handed bat (though I don't think he'll ever throw out runners like Cuddy). The other main addition, Jamey Carroll, hasn't hit a thing. But he was brought in primarily to shore up shortstop and he's done that thus far, with a slew of defensive gems and no notable mistakes. Very important, considering last year's SS experiment, Nishioka, appeared to lose his fielding and hitting ability on the flight over from Japan (kids, take note: that's why you always pack your skill set in your carry-on bag and don't risk checking it).
-- A pretty good outing from a No. 6 starter: Anthony Swarzak was supposed to begin the season in the bullpen, but got a surprise start due to a bout of food poisoning for Liam Hendriks (which gave me a bout of morbid curiosity, wondering if he got it from any place I once ate in Baltimore). Swarzak responded by going five strong innings with a solo homer his only blemish (he probably should have been given the ball for the sixth, which was when the bullpen more or less blew it). Guys like Swarzak and Brian Duensing have had some good stretches as starters in the past and having that kind of depth can only help when the usual bit of elbow soreness, shoulder issues or uncontrollable vomiting rear their ugly heads.
Unfortunately, the back-loading of the rotation that pushed out guys like Swarzak and Duensing also accentuates one of the Twins' greatest weaknesses: the lack of a legitimate (or even close enough to be passable) top-of-the-rotation ace. In short, what they have is about 7 or 8 guys who would make good No. 4 or 5 starters. Carl Pavano might be a No. 3, and he can eat innings, but he's not an ace.
In my humble opinion, this has been the organization's biggest failing of late. The Twins haven't had an ace since Francisco Liriano blew out his elbow. I held out for a Tommy John miracle for a couple years, but it doesn't look like Liriano's gonna get one. He has to rely on his head as much as his arm now, and that's never a good equation for a head case.
An ace would push all the other pitchers back in the rotation, into much more natural spots. But as far as I can tell, there's only three ways to get one: draft one, pay through the nose in free agency or trade a boatload of prospects to get one mid-season from a team that's fallen out of contention.
The Twins haven't been able to draft one, they've shown no inclination to spend that kind of free-agent money (nor should they, necessarily — it's a huge risk) and they seem to no longer have the prospect haul to even propose a trade that a team with an ace wouldn't just chuckle at and move on. That being the case, the Twins may end up being that team that falls out of contention at mid-season. For Grandma's sake, I hope I'm wrong.
Sunday, January 15, 2012
The Ballad of Baxter
Baxter has cancer, but he doesn’t want anyone to feel sorry for him.
The word from home on my dog come from two fronts: A disappointing pathology report and heartening dispatches from Mom.
The pathology report, performed on the tennis-ball sized tumor vets removed from Bax’s liver last weekend confirmed that it was malignant. It’s apparently a relatively slow-moving form of cancer, so it’s hard to tell how long it will hold off.
By the looks of things, it should be a little while, at least. Mom reports that Bax is doing surprisingly well, able to get out and walk and, most importantly, keep food down (his repeated vomiting, likely because the tumor was pushing on his stomach, was what landed him at the vet in the first place).
Word is, he’s now back to fighting with Mom’s dog, George, over possession of rawhide treats and the fam is even having trouble keeping Bax from trying to jump up on the furniture (it’s for his own good – no jumping allowed because he still has about 12 staples cinching together his surgical wound).
During his followup visit yesterday, the vets were reportedly also surprised at how quickly he’s recovering – once they were able to get him to come out from under their table and stop shaking (he clearly hasn’t forgotten what the put him through last time).
So it seems the surgery has at least prolonged his life.
It’s hard to know how much time he would have left even without the cancer. When we got him from the Humane Society in 2005, he was listed as three years old. But the first time we took him to the vet, we were told, “Oh no, this dog is much older than that. So we think he’s somewhere between 9 and 12 now.
Which is not young for a 20-pound dog, but we got a little spoiled because our last dog, Shaggy, made it to 17.
To understand my attachment to Baxter, you need to know a little bit of my history with Shaggy. She and I grew up together, essentially. We picked her up at the shelter on my fifth birthday, shortly after we moved to a new house with a nice big yard next to the Sauk River.
I lived in that house until I left for college and she was always there waiting for me when I came in, madly wagging her tail. After angst-filled days of junior high and high school, I’d come in, drop my backpack on the floor and just sit there on the stairs with her and let her remind me that, in the words of Stuart Smalley, “I’m good enough, I’m smart enough and dog-gone-it, people like me.”
At the end of my senior year of college, I landed in the hospital, my circulatory system torn apart by meningitis. While I was there, Shaggy, her sight and hearing almost completely stolen by age, developed pneumonia. I never got to say goodbye.
A year later I was still recovering, at home in Minnesota and confined to a wheelchair while I rehabbed what was left of my legs. Mom and I decided it was time to get another dog.
So we went back to the Humane Society and, as I wheeled past one cage after another filled with frenzied, barking dogs, I came upon a furry, white-and-brown mutt sitting calmly in a corner, unfazed by the chaos.
“That’s the one I want,” I immediately thought.
His name was “Bear,” but I renamed him “Baxter” after Ron Burgundy’s dog. I needed a little comic relief.
As soon as we got home, I used my arms to push myself out of the wheelchair and onto the living room couch. Baxter looked up at me for just a second, then jumped into my lap. From then on, we were best buds.
He was really the perfect dog for that time and situation. He wasn’t much for running, so he didn’t mind at all that I couldn’t run, or even walk. The one bit of physical activity he did occasionally enjoy was retrieving one of his cloth toys so we could play tug-of-war. And that was actually quite good physical therapy for me. It helped me strengthen the grip of the right thumb that was going to have to get me through most every manual task for the rest of my days.
Most of the time all Bax wanted was to sit next to someone and be petted. And he didn’t mind if it was me with my torn up hands. He didn’t care about the scars or the missing fingers and he taught me not to care about them as much either.
God gave me a great gift when he set that dog in my path.
So it was tough leaving Bax when I went east for grad school, and I had been hoping to bring him here to Topeka with me, after the busy legislative session.
But now I’m sure it’s best for him to stay home with Mom, Dad, Grandma and Dan. His greatest joy has always been being around people and at home there’s almost always people around.
He’s done so much for me, he deserves that love and attention for as long as he has left. As long as he has that, he'll be happy, cancer or no cancer.
Sunday, April 24, 2011
Maryland's Latin Kings rise... and fall.
So I haven't blogged in awhile... a long while. A lot of my time has been consumed by work/school, but now my time in the National Press Building is over. It went crazy fast. For over a month I've been working on a story about a branch of the Latin Kings gang that sprang up in Maryland in 2007 and was taken down by the Bureau of Alcohol, Tobacco, Firearms and Explosives last year. Went to several weeks of a murder trial, read through a pile of other court documents and scored an extended interview with the ATF agent who leads the anti-gang unit that spearheaded the investigation into the Kings. It ended up turning into a two-part magazine-style narrative:
Part 1: The Crown Topples: The Swift Rise and Brutal Fall of Maryland's Latin Kings
Part 2: The Crown Topples: The Swift Rise and Brutal Fall of Maryland's Latin Kings
Part 1: The Crown Topples: The Swift Rise and Brutal Fall of Maryland's Latin Kings
Part 2: The Crown Topples: The Swift Rise and Brutal Fall of Maryland's Latin Kings
Sunday, February 27, 2011
Public transit sells out (maybe), Govt. shuts down (maybe) and basketball
Another variety-filled week. The D.C. Metro system is in a major cash-crunch and is discussing selling the naming rights to its stations to corporate sponsors. I found that this is a bit of a national trend, so I wrote a story about it that featured Portland, a city most people think would be resistant to such measures.
Then I moved on to the growing talk of a federal government shutdown. It's been written about extensively out here, so I decided to take a new tack, focusing on a few small businesses in areas that are rife with government workers and exploring how a shutdown would hit them. It gave me the opportunity to incorporate a little color in the writing.
Then I got called in for special duty at the Post, covering Saturday's women's basketball game between Georgetown and top-ranked, legendary Connecticut. Georgetown made the defending champs look pretty darn ordinary, even if the Huskies ultimately prevailed.
Then I moved on to the growing talk of a federal government shutdown. It's been written about extensively out here, so I decided to take a new tack, focusing on a few small businesses in areas that are rife with government workers and exploring how a shutdown would hit them. It gave me the opportunity to incorporate a little color in the writing.
Then I got called in for special duty at the Post, covering Saturday's women's basketball game between Georgetown and top-ranked, legendary Connecticut. Georgetown made the defending champs look pretty darn ordinary, even if the Huskies ultimately prevailed.
Sunday, February 20, 2011
Budgets, Beards, Ponzi Schemes and a Wrestling Championship
Another busy week. It started off with me tackling a story on the federal budget (which, if you haven't been paying attention, is not in great shape).
There was also a verdict in the $70 million Ponzi scheme trial I'd been following, so I spent most of Friday at the federal court house in Greenbelt. The court reporter was kind enough to give me a rough draft of the closing arguments, which I'd missed because I was trying to comb through the federal budget. Luckily the verdict didn't come in until about 1 p.m., so I had the whole morning to barrel through those 210 pages of closing. So, advice to young journalists covering the courts: get in good with the court reporters. Their help is invaluable.
Saturday I covered the Maryland Independent State Wrestling Tournament (basically the state tournament for private school kids). Pretty familiar territory for me, as a veteran of many Kansas wrestling state tournaments. But a team from our coverage area won it for the first time in school history, which is always cool.
I also finally filed my story on beard bans and the police officers who challenge them in court. Really, it's much more of an issue than you might think. There's a skin condition, Pseudofolliculitis barbae, that's common in black men and it's irritated by shaving. I interviewed a dermatologist about it and made a video to accompany the story. Then Fox News picked the story up on Sunday and sent it nationwide via its website. Pretty cool, even if they did re-arrange my paragraphs in some, I think, confusing ways. That's part of the news wire biz, I guess. Once the copy's out of your hands (or off your hard drive) it's not yours anymore.
There was also a verdict in the $70 million Ponzi scheme trial I'd been following, so I spent most of Friday at the federal court house in Greenbelt. The court reporter was kind enough to give me a rough draft of the closing arguments, which I'd missed because I was trying to comb through the federal budget. Luckily the verdict didn't come in until about 1 p.m., so I had the whole morning to barrel through those 210 pages of closing. So, advice to young journalists covering the courts: get in good with the court reporters. Their help is invaluable.
Saturday I covered the Maryland Independent State Wrestling Tournament (basically the state tournament for private school kids). Pretty familiar territory for me, as a veteran of many Kansas wrestling state tournaments. But a team from our coverage area won it for the first time in school history, which is always cool.
I also finally filed my story on beard bans and the police officers who challenge them in court. Really, it's much more of an issue than you might think. There's a skin condition, Pseudofolliculitis barbae, that's common in black men and it's irritated by shaving. I interviewed a dermatologist about it and made a video to accompany the story. Then Fox News picked the story up on Sunday and sent it nationwide via its website. Pretty cool, even if they did re-arrange my paragraphs in some, I think, confusing ways. That's part of the news wire biz, I guess. Once the copy's out of your hands (or off your hard drive) it's not yours anymore.
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