Did you know that if I had been born a couple decades earlier, I could be arrested for appearing in public?
I didn't know either, until I saw the movie Music Within. It's about Richard Pimental, a man who becomes mostly deaf due to a Vietnam War injury and then spends the next several years devoting himself to helping people with disabilities get employment. I recommend it.
The one scene that really stuck with me was when Richard and his friend, who is wheelchair-bound and twitches due to severe cerebral palsy, are kicked out of a restaurant. The waitress rudely informs Richard that his friend is unsightly and is making the other patrons uncomfortable. More shockingly, when they refused to leave, they were arrested. Arrested under what was called an "Ugly" law.
Until the 1960s and 70s, apparently a number of large American cities had laws that made it illegal for someone with an "unsightly or disgusting" disability to appear in public. I was not aware of this despite some well-regarded literature on the matter.
I started thinking about how such laws could have affected me, with my scarred arms and stumpy hands. Could someone at a restaurant have called the police and had me hauled out? It seems almost unthinkable, but "unsightly or disgusting" is not very well-defined in these laws. They're subjective. What one person finds unsightly, another would not. This gives enormous power to law enforcement and allows for an enormous amount of bias.
Surely such laws were rarely enforced. But they were insidious nonetheless, in that they prey on fears that people with disabilities already have (or at least that I had when I first became disabled). Fears that we won't be accepted or able to participate fully in society.
Times seem to have change since the "ugly laws" were repealed. People with disabilities are less institutionalized and more visible in the community. The ADA and Medicaid waiver services that followed the Supreme Court's Olmstead decision helped. But changing laws, of course, doesn't change hearts.
This CNN story about Gophers football coach Jerry Kill proves we still have a ways to go. Kill has epilepsy, and after he had a seizure on television he received emails calling him a "freak" and a columnist at a major newspaper said he should be replaced because he was making the football team an object of pity. Kill has proven himself to be good at his job and epilepsy is a well-known part of the human condition. Why the hate? Why the derision?
I'm not sure what the answer is, but I think it has something to with a misguided sense of what is "normal," and a discomfort with anything that does not fit that template. This is, of course, warped. Humanity quite normally includes all sorts of variety in the way people look, move, speak, etc. But people are uncomfortable with that which they're unaccustomed to.
It is only in the last few years that I have gotten comfortable going out in public with short sleeves and have stopped trying to hide my hands in pockets. It took time to get to the point where my honest emotion was "If anyone has an issue with it, it's their problem."
But it's also a societal problem. And we all have a role to play in solving it. Reevaluate what you think is "normal" in the context of what you know is human.
Sunday, October 19, 2014
Sunday, May 11, 2014
What does April 28 have against the Marso family?
I probably should have known better than to schedule my dog's euthanasia for April 28. Might have been tempting fate. This year April 28 was the 10th anniversary of me being flown to KU Med almost dead because of a meningococcal infection. The date insisted on giving us yet another scare, as if the hardship of losing a pet wasn't enough.
Baxter has featured prominently in this blog before, so if you've followed it, you know the story: beloved pooch I adopted during my return to Minnesota after meningitis who helped me through my recovery; constant companion for years in Olathe and back in Minnesota for a year after I was laid off; then separated from me by graduate school and his bout with cancer in Jan. 2012.
After surgery that month to remove his tumor (and a chunk of his liver with it) Bax continued to live at home with Mom, Dad and Grandma, where he received tremendous care as further medical issues piled up. He already suffered from arthritis that caused him to limp on his back right leg. This got progressively worse until he was practically dragging the leg at times. Then he got diabetes, which severely restricted his diet and necessitated insulin shots twice daily. He usually tolerated them well, but there were a couple biting incidents. Luckily he was also having teeth removed due to gum decay during that period so there wasn't much bite to him.
About a year ago he started to go blind quite quickly, possibly due to the diabetes. That's when we started talking seriously about euthanasia, Mom and I. Well, maybe I more than Mom. Even though she was bearing the lion's share of the Baxter care, she had a hard time imagining letting the little guy go.
Baxter had always been pretty clingy, but losing his eyesight made him downright distressed any time there wasn't someone familiar within ear shot, or better yet, pressed up against him. Then he started to have bladder control issues and getting Mom up several times a night to go outside. Or not getting her up, which was worse.
That's a very long, probably unnecessary explanation to justify why I made the decision to euthanize my 15-year-old, arthritic, diabetic, blind dog. It was difficult.
April 28 just happened. It was the weekend after Dan and I got back from South America and the first feasible time I could be home to do what had to be done.
So I flew into Minnesota Friday night and spent the next couple days saying goodbye to my dog. Fortunately the weather was beautiful after months of Arctic winter that exasperated even the hardy Minnesotans. Bax and I enjoyed my parents' backyard and the river that runs through it, just as we had about 9 years earlier when I was in a wheelchair and he was my new dog.
Then Monday came, and I was scheduled to take Bax to the vet at 1:00 p.m. Mom and I were thinking about him that morning, I suspect, which is why neither of us thought much of the fact that my Dad, who is normally up by 7:30 or 8, was sleeping in quite late. Mom mentioned it, but it wasn't until just before 11 a.m. that she went to check on him.
In the interests of respecting my dad's privacy (sometimes I forget that not everyone wants to broadcast their medical issues), I'm not going to get into a lot of details about how he was. Suffice it to say, we were concerned enough that we drove him to the emergency room. I stayed there for a couple hours, phoning the vet to tell them we would be late on Baxter's appointment and might not show up at all.
Tests that day confirmed that Dad had had a stroke. But he seemed stable and while not quite himself, coherent. He was apologizing to me for screwing up my plans, which is classic Dad. Selfless.
With a plane to catch that night, I left the hospital, went home and retrieved Baxter from Grandma's room downstairs. I asked him if he wanted to "go for a ride in the car," which didn't perk him up as much as it used to when he was younger and it practically sent him into a lather. He struggled to stand up in his dog bed, straightening his legs slowly and then stretching. In previous trips home I had seen him try to get up and collapse back down, needing two tries to stand up. Another heartbreaking sign that it was time for him to enjoy his final repose.
He struggled into the backseat of the car, taking a moment to locate the doorway by poking around with his snout and then another moment to climb in, kicking his back legs futilely at first. In my mind I had imagined opening the windows for him and letting him stick his head out one last time, but it was raining that day and he didn't seem very interested. On the advice of the vet we had given him an oral sedative hours earlier and he was pretty zonked.
When we got to the vet I had to pick him up and carry him in, thankful for the automatic doors. A young female cashier at the front of the store looked at the fluffy, sleepy dog in my arms and immediately let out an "Awwwww." She clearly didn't know what we were there for.
The Banfield Pet Hospital staff did though. They had cared for Baxter for years, helping him live longer and better than he probably should have given all his maladies. They were sensitive that day, offering me as much time with him as I wanted before they proceeded. I didn't have much time and honestly I didn't want to drag it out. As it became more real the tears were starting to poke at the edges of my eyes.
I held Baxter in my arms as the staff placed a catheter just above his right front paw. He whined a little as it went in, but was otherwise still. I stroked his head and tears began to drop onto the soft fur of his back. I think somehow he knew, maybe, what was going on. Maybe that's crazy. But he seemed peaceful. As the first of the drugs went in his arm, he fell asleep and went limp. I was sobbing as they injected the second one, to stop his heart. The vet placed a stethoscope under his chest to check for the heartbeat that would never again come from there. She nodded to the vet tech and the two of them left me alone, in a small exam room, with my dog.
I sat and cried for a minute or two, maybe longer. Then I realized I was holding a dead dog. I lifted him up onto the metal table, his body even limper than before — the lifelessness was tangible. He was no longer Baxter. I laid him on his side on the table and tried to close the eyelids completely, like I'd seen on TV. But they didn't want to stay closed. So I left him like that and walked quickly out of the building, out to where the rain could hide my tears.
I wanted to go back and see my Dad, but I didn't have time. I had to pack up my stuff and head to the airport. My brother was going to drive me halfway there and then drop me with my uncle, who was nice enough to come down from the Twin Cities and retrieve me after it became clear that I didn't have a ride anymore.
Uncle Dennis tried to engage me in conversation, but I'm afraid I wasn't very receptive. I was praying for my dad, and posting a note on Facebook soliciting other prayers. The sporadic updates from my mom and brother were too mixed to know the results of those prayers. By the time we got to the airport, I was pretty distressed and really didn't feel good about getting on a plane and going 500 miles away from my family.
It was here that a small act of kindness by a total stranger made a huge difference. I told my uncle I wanted to try and change my flight and he accompanied me to the Southwest desk. I told the attendant there what was going on, that my dad was in the hospital and I wanted to postpone my flight. He asked me when I wanted to fly. I dithered.
"You don't really know, do you?" he asked, not impatiently, but in a way that suggested he had just understood my uncertainty.
I nodded and he read off a list of options. We settled on the next night.
"How much is the change fee?" I asked.
"Oh, I won't charge you a fee," he said, as he handed me my new reservation.
It was a small thing for him maybe, I don't know. But for me it made a big difference. And any money Southwest lost in not charging me a fee it will make up for many times over in my new loyalty to their airline.
That wasn't the end of the kindnesses. I told my employer I wouldn't be back for another day and my superiors understood and were completely gracious about it. Uncle Dennis promised to come up to St. Cloud and pick me up again the next day to take me back to the airport. Then he dropped me off at the Northstar stop, so I could take the last train out of the Cities to Big Lake, where I would then have to catch a bus to St. Cloud.
Or so I thought.
Almost immediately after Uncle Dennis dropped me at the train station I got a text from my friend Katie: "Just saw your FB post — prayers are being sent your way. I'm here for you if you need anything."
Katie lives in the Cities. I knew she could get me back to the hospital faster than the train/bus. So I called her.
"Can you drive me to St. Cloud?"
She didn't hesitate. It was an immediate "Yes." And again, I was so grateful. I have been blessed with so many advantages in my life, advantages that I had little or no control over — supportive family, 22 years of good health, stable community and nation in which to grow up. If there's one thing I can take credit for in helping create my success, though, it's picking the right friends. I marvel all the time at their loyalty and generosity.
So I was back in St. Cloud when Dad woke up that night in the hospital and said, "Hey, I thought you were gone." And I got to say "Don't worry about it Dad, Southwest was nice enough to let me change my flight."
"What about work?" he said.
"Don't worry about it, Dad, everything's taken care of. It's fine."
And I got to grip his hand with what's left of mine, holding on tight with a lonely right thumb made strong through 10 years of exclusive use. The roles we played a decade earlier were reversed, but the love was the same. He is the man I want to be.
By the next day he would be much better, almost miraculously better, and I would feel much better about going to back to Kansas.
But that night we sat by his bed and we tried to make sense of April 28.
"What is it about this date, anyway?" Dad asked.
"I don't know Dad," I said. "I guess it's the day when our family gets all the bad shit out of the way."
Baxter has featured prominently in this blog before, so if you've followed it, you know the story: beloved pooch I adopted during my return to Minnesota after meningitis who helped me through my recovery; constant companion for years in Olathe and back in Minnesota for a year after I was laid off; then separated from me by graduate school and his bout with cancer in Jan. 2012.
After surgery that month to remove his tumor (and a chunk of his liver with it) Bax continued to live at home with Mom, Dad and Grandma, where he received tremendous care as further medical issues piled up. He already suffered from arthritis that caused him to limp on his back right leg. This got progressively worse until he was practically dragging the leg at times. Then he got diabetes, which severely restricted his diet and necessitated insulin shots twice daily. He usually tolerated them well, but there were a couple biting incidents. Luckily he was also having teeth removed due to gum decay during that period so there wasn't much bite to him.
About a year ago he started to go blind quite quickly, possibly due to the diabetes. That's when we started talking seriously about euthanasia, Mom and I. Well, maybe I more than Mom. Even though she was bearing the lion's share of the Baxter care, she had a hard time imagining letting the little guy go.
Baxter had always been pretty clingy, but losing his eyesight made him downright distressed any time there wasn't someone familiar within ear shot, or better yet, pressed up against him. Then he started to have bladder control issues and getting Mom up several times a night to go outside. Or not getting her up, which was worse.
That's a very long, probably unnecessary explanation to justify why I made the decision to euthanize my 15-year-old, arthritic, diabetic, blind dog. It was difficult.
April 28 just happened. It was the weekend after Dan and I got back from South America and the first feasible time I could be home to do what had to be done.
So I flew into Minnesota Friday night and spent the next couple days saying goodbye to my dog. Fortunately the weather was beautiful after months of Arctic winter that exasperated even the hardy Minnesotans. Bax and I enjoyed my parents' backyard and the river that runs through it, just as we had about 9 years earlier when I was in a wheelchair and he was my new dog.
Then Monday came, and I was scheduled to take Bax to the vet at 1:00 p.m. Mom and I were thinking about him that morning, I suspect, which is why neither of us thought much of the fact that my Dad, who is normally up by 7:30 or 8, was sleeping in quite late. Mom mentioned it, but it wasn't until just before 11 a.m. that she went to check on him.
In the interests of respecting my dad's privacy (sometimes I forget that not everyone wants to broadcast their medical issues), I'm not going to get into a lot of details about how he was. Suffice it to say, we were concerned enough that we drove him to the emergency room. I stayed there for a couple hours, phoning the vet to tell them we would be late on Baxter's appointment and might not show up at all.
Tests that day confirmed that Dad had had a stroke. But he seemed stable and while not quite himself, coherent. He was apologizing to me for screwing up my plans, which is classic Dad. Selfless.
With a plane to catch that night, I left the hospital, went home and retrieved Baxter from Grandma's room downstairs. I asked him if he wanted to "go for a ride in the car," which didn't perk him up as much as it used to when he was younger and it practically sent him into a lather. He struggled to stand up in his dog bed, straightening his legs slowly and then stretching. In previous trips home I had seen him try to get up and collapse back down, needing two tries to stand up. Another heartbreaking sign that it was time for him to enjoy his final repose.
He struggled into the backseat of the car, taking a moment to locate the doorway by poking around with his snout and then another moment to climb in, kicking his back legs futilely at first. In my mind I had imagined opening the windows for him and letting him stick his head out one last time, but it was raining that day and he didn't seem very interested. On the advice of the vet we had given him an oral sedative hours earlier and he was pretty zonked.
When we got to the vet I had to pick him up and carry him in, thankful for the automatic doors. A young female cashier at the front of the store looked at the fluffy, sleepy dog in my arms and immediately let out an "Awwwww." She clearly didn't know what we were there for.
The Banfield Pet Hospital staff did though. They had cared for Baxter for years, helping him live longer and better than he probably should have given all his maladies. They were sensitive that day, offering me as much time with him as I wanted before they proceeded. I didn't have much time and honestly I didn't want to drag it out. As it became more real the tears were starting to poke at the edges of my eyes.
I held Baxter in my arms as the staff placed a catheter just above his right front paw. He whined a little as it went in, but was otherwise still. I stroked his head and tears began to drop onto the soft fur of his back. I think somehow he knew, maybe, what was going on. Maybe that's crazy. But he seemed peaceful. As the first of the drugs went in his arm, he fell asleep and went limp. I was sobbing as they injected the second one, to stop his heart. The vet placed a stethoscope under his chest to check for the heartbeat that would never again come from there. She nodded to the vet tech and the two of them left me alone, in a small exam room, with my dog.
I sat and cried for a minute or two, maybe longer. Then I realized I was holding a dead dog. I lifted him up onto the metal table, his body even limper than before — the lifelessness was tangible. He was no longer Baxter. I laid him on his side on the table and tried to close the eyelids completely, like I'd seen on TV. But they didn't want to stay closed. So I left him like that and walked quickly out of the building, out to where the rain could hide my tears.
I wanted to go back and see my Dad, but I didn't have time. I had to pack up my stuff and head to the airport. My brother was going to drive me halfway there and then drop me with my uncle, who was nice enough to come down from the Twin Cities and retrieve me after it became clear that I didn't have a ride anymore.
Uncle Dennis tried to engage me in conversation, but I'm afraid I wasn't very receptive. I was praying for my dad, and posting a note on Facebook soliciting other prayers. The sporadic updates from my mom and brother were too mixed to know the results of those prayers. By the time we got to the airport, I was pretty distressed and really didn't feel good about getting on a plane and going 500 miles away from my family.
It was here that a small act of kindness by a total stranger made a huge difference. I told my uncle I wanted to try and change my flight and he accompanied me to the Southwest desk. I told the attendant there what was going on, that my dad was in the hospital and I wanted to postpone my flight. He asked me when I wanted to fly. I dithered.
"You don't really know, do you?" he asked, not impatiently, but in a way that suggested he had just understood my uncertainty.
I nodded and he read off a list of options. We settled on the next night.
"How much is the change fee?" I asked.
"Oh, I won't charge you a fee," he said, as he handed me my new reservation.
It was a small thing for him maybe, I don't know. But for me it made a big difference. And any money Southwest lost in not charging me a fee it will make up for many times over in my new loyalty to their airline.
That wasn't the end of the kindnesses. I told my employer I wouldn't be back for another day and my superiors understood and were completely gracious about it. Uncle Dennis promised to come up to St. Cloud and pick me up again the next day to take me back to the airport. Then he dropped me off at the Northstar stop, so I could take the last train out of the Cities to Big Lake, where I would then have to catch a bus to St. Cloud.
Or so I thought.
Almost immediately after Uncle Dennis dropped me at the train station I got a text from my friend Katie: "Just saw your FB post — prayers are being sent your way. I'm here for you if you need anything."
Katie lives in the Cities. I knew she could get me back to the hospital faster than the train/bus. So I called her.
"Can you drive me to St. Cloud?"
She didn't hesitate. It was an immediate "Yes." And again, I was so grateful. I have been blessed with so many advantages in my life, advantages that I had little or no control over — supportive family, 22 years of good health, stable community and nation in which to grow up. If there's one thing I can take credit for in helping create my success, though, it's picking the right friends. I marvel all the time at their loyalty and generosity.
So I was back in St. Cloud when Dad woke up that night in the hospital and said, "Hey, I thought you were gone." And I got to say "Don't worry about it Dad, Southwest was nice enough to let me change my flight."
"What about work?" he said.
"Don't worry about it, Dad, everything's taken care of. It's fine."
And I got to grip his hand with what's left of mine, holding on tight with a lonely right thumb made strong through 10 years of exclusive use. The roles we played a decade earlier were reversed, but the love was the same. He is the man I want to be.
By the next day he would be much better, almost miraculously better, and I would feel much better about going to back to Kansas.
But that night we sat by his bed and we tried to make sense of April 28.
"What is it about this date, anyway?" Dad asked.
"I don't know Dad," I said. "I guess it's the day when our family gets all the bad shit out of the way."
Tuesday, April 22, 2014
10 years since meningitis
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.
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.
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