MINIMIZING MY REAL DISABILITY
In just a few hours, the surgery I have been waiting for since July 9, 2018 will begin. Why it has taken so
long to schedule is anybody's guess, perhaps detailed in another post, but it definitely had nothing to do
with me. I was ready to go to the hospital the minute Dr. Bernasek told me that a femur replacement
was the best solution. Not a total replacement, but a more experimental approach, customizing part of
a femur, and adding knee and hip replacements to stabilize it. I was all in. With each cancelation,
however, eager anticipation has morphed more into a blend of hope and fear.
And finally, after more delays and postponements than I care to enumerate, today's the day.
Technically, I've almost always had a disability. Due to a rare childhood cancer, I've been totally blind
since shortly after my fifth birthday. But for as long as I can remember, that never felt like a disability.
Learning to read braille in first grade, I could read better, faster, and more than any sighted kids in my
family or neighborhood and, from roller skating to tree climbing, there was always a way.
It was just part of me, this not being able to see thing, but never a disability.
My hearing felt like more of a disability. It started leaving in adolescence, but I didn't believe it till I was
26, had my first beautiful baby, and realized I couldn't hear her cry upstairs without the electronic
monitor. When I learned in my thirties that the cause of hearing loss was that radiation they zapped me
with to save my eye in early childhood, well, it made it easier to understand and maybe accept. For
decades, I've been grateful to live in a time when hearing loss could be made less traumatic with
technology.
The real disability came calling just under three years ago. Initially, it was the fault of the cancer in my
leg in 2003. Radiation and surgery saved my life but weakened my femur. Then, 13 years later,
December 1, 2016, that femur abruptly snapped in two, mad about the insertion of a hip replacement.
That was abrupt, unanticipated, and brutal, but I spent 2017 being grateful for life and working hard to
return to being an ambulatory human.
Fast forward to January 21, 2018. Not quite fully rehabilitated, I was walking well with an orthopedic
cane, and thought it in high time I went on vacation. I went to Ski for Light, not to ski as I had done so
many years in the past, but to volunteer in the information room, help wherever possible,and bask in the company of friends old and new.
Sadly, the first night in the Nevada hotel, I mistook where I was and stepped off a staircase -- like
stepping off a cliff -- and spent the week in the hospital. My femur was again broken, in new places, and
loads more metal was inserted to stabilize.
You might say my quality of life significantly plummeted. Since then, I have only been able to walk with a
walker. I was getting stronger when given some unfortunate medical advice in July 2018, but again,
that's for another post.
Dr. Bernasek at Florida Orthopedic advised that the best solution was this surgery I will finally have
today. I have often felt a certain bewilderment at the extraordinary lengths some friends with impaired
vision have gone to in order to gain some vision. For me, blindness has not been a disability. These past
two-plus years, however, the inability to run – or even walk -- -down the street, alone and unafraid, has
felt like a gigantic disability and profound loss.
Every day I am grateful -- that it is only a broken femur, that it is not cancer, that I am alive.
Rehabilitation will undoubtedly be long and probably grueling. I hope I'll be up to the task, and look
forward to the adventure of learning new things. In 2003, I knew without doubt that it was the prayers, warm thoughts, and positive energy of friends everywhere that enabled me to sail through radiation and
surgery. I'm putting this out there in hope of yet another similar miracle. Thanks in advance for any
good energy you beam on my behalf!
Tuesday, October 22, 2019
Tuesday, August 9, 2011
Goodbye Tuscan
GOODBYE TUSCAN
In January 2010, Tuscan’s limp was diagnosed as a nerve sheath tumor. He had begun limping several weeks earlier, and before long, his right front leg was of no use to him. He had to retire from the work he loved of being a guide dog, but otherwise, his spirit was unchanged. He was a happy, healthy three-legged dog.
I postponed getting a new guide – clinging, I suppose, to the hope that the diagnosis was wrong and one day his leg would recover. It didn’t, and eventually, this past March, I went into training with Flo, a spunky, exuberant black lab half her predecessor’s size!
In mid June, Tuscan began having difficulty with stairs. There are lots of them here. My vet first misdiagnosed the difficulty with his back right leg as a soft tissue injury. I wanted her to be correct, but in my heart, I knew she was way off base.
Medicine didn’t help and keeping him off the stairs, didn’t either. Another trip to another vet planted the seed for what was to come: the “mass” on the nerve sheath was likely to affect his back leg next if it had grown.
Finally, a visit to a neurologist confirmed that diagnosis. The tumor was growing down Tuscan’s spine and, in the neurologist’s words, he was “at the edge of the cliff” poised to go over at any time.
Medication for pain and my own vigilance for deciding when the cliff edge could no longer be before him was the plan.
It is so difficult to see a high-spirited, loving creature scrabble for balance and mobility. Each day, he was able to stand less, move less, or show that ever-burning inclination to shake a toy in that wonderful mouth and howl for the joy of it. (I always thought of that howl as singing, for it was indeed done with ecstasy and joy.) Yesterday, he didn’t move for an eight hour stretch. I kept going to him, cuddling, talking, listening. It truly seemed to me that he saying, “let me go.” AnD last night we did.
My house is quiet. My heart is broken. And I ask myself, as I have in the past, “How many times can I go through this?”
My friends with guide dogs are the best support. Kim Samco, the counselor at GDB who helps graduates with such grief, was especially kind. Her article on euthanasia gave exactly the information I needed most: namely, that only I would know that the time had come.
I was sure, and the attending vet confirmed my certainty – and yet, there will always be that shred of doubt asking, “Should I have waited ONE MORE DAY?”
Probably not. And my house is so quiet. … But Flo is here – young and exuberant and full of love to give. And someday, my aching heart is screaming, she’ll go, too. But the key command in guide work is a lesson for life. Tuscan is running again somewhere, running free, shaking a bone in his mouth, singing for the joy of it, and telling Flo and me to go Forward.
In January 2010, Tuscan’s limp was diagnosed as a nerve sheath tumor. He had begun limping several weeks earlier, and before long, his right front leg was of no use to him. He had to retire from the work he loved of being a guide dog, but otherwise, his spirit was unchanged. He was a happy, healthy three-legged dog.
I postponed getting a new guide – clinging, I suppose, to the hope that the diagnosis was wrong and one day his leg would recover. It didn’t, and eventually, this past March, I went into training with Flo, a spunky, exuberant black lab half her predecessor’s size!
In mid June, Tuscan began having difficulty with stairs. There are lots of them here. My vet first misdiagnosed the difficulty with his back right leg as a soft tissue injury. I wanted her to be correct, but in my heart, I knew she was way off base.
Medicine didn’t help and keeping him off the stairs, didn’t either. Another trip to another vet planted the seed for what was to come: the “mass” on the nerve sheath was likely to affect his back leg next if it had grown.
Finally, a visit to a neurologist confirmed that diagnosis. The tumor was growing down Tuscan’s spine and, in the neurologist’s words, he was “at the edge of the cliff” poised to go over at any time.
Medication for pain and my own vigilance for deciding when the cliff edge could no longer be before him was the plan.
It is so difficult to see a high-spirited, loving creature scrabble for balance and mobility. Each day, he was able to stand less, move less, or show that ever-burning inclination to shake a toy in that wonderful mouth and howl for the joy of it. (I always thought of that howl as singing, for it was indeed done with ecstasy and joy.) Yesterday, he didn’t move for an eight hour stretch. I kept going to him, cuddling, talking, listening. It truly seemed to me that he saying, “let me go.” AnD last night we did.
My house is quiet. My heart is broken. And I ask myself, as I have in the past, “How many times can I go through this?”
My friends with guide dogs are the best support. Kim Samco, the counselor at GDB who helps graduates with such grief, was especially kind. Her article on euthanasia gave exactly the information I needed most: namely, that only I would know that the time had come.
I was sure, and the attending vet confirmed my certainty – and yet, there will always be that shred of doubt asking, “Should I have waited ONE MORE DAY?”
Probably not. And my house is so quiet. … But Flo is here – young and exuberant and full of love to give. And someday, my aching heart is screaming, she’ll go, too. But the key command in guide work is a lesson for life. Tuscan is running again somewhere, running free, shaking a bone in his mouth, singing for the joy of it, and telling Flo and me to go Forward.
Monday, May 16, 2011
Going with the Flo
Going with the Flo
When I started the blog, the intent was to write about training with a new guide dog. That training doesn’t really end, though, when you leave the GDB campus, and I’m reminded of it more this time around than ever before.
We’ve been home for seven weeks today – two, then a three-week hiatus, and now two more. We are most definitely a work still in progress!
The good news is that Flo stopped being a cone-head on my birthday, May 2. I successfully completed the 10K Flying Pig (woo-hoo!) April 30, and wanted more than ever to keep walking with my sweet new dog the next day. Her tail had healed, and the trick was to keep her from biting it. I took off the e-collar, first as a test, and her joy was so infectious that there was simply no way I could put it back on. I sprayed her tail with Bitter Apple every day which kept that little mouth from biting on it, and we began again to work as a team.
We have kept pretty much to short, simple walks – and have gotten lost a few times – but with the gentle leader on to keep her hyperactive nose from sniffing everything that isn’t nailed down, we’re making progress.
Her first road trip was May 7, when Caitlyn and I drove to Eastern Kentucky University for the graduation ceremony of my stepdaughter, Kendra. Flo was a hit -- and practically perfect.
Then, May 11, I had to fly to St. Louis for the annual conference of the IAAIS (International Assoc. of Audio Information Services), where I serve as a public director on the board.
I travel a fair amount, so this was the first test of my “real life” for Flo, and at least one of us was more than a tad nervous.
The flight to St. Louis was Flo’s second ever – the first being the return home from San Rafael. She’s small, but exceedingly wiggly, so getting her to lie still at my feet was initially a challenge. When she finally settled, though, she was perfect the whole trip. I asked the flight attendant to hold her while I walked to the back of the plane for the bathroom. When I came back, the flight attendant confessed that she forgot about Flo who had slept through my entire absence. Yay Flo!
In St. Louis, she went to meetings and restaurants and had stellar behavior everywhere. I successfully taught her where my room was using the clicker and treats which, for her, was the highlight of the entire trip.
I learned that if I forget the gentle leader, she can’t remember to do her job – grazing a particular pillar twice and falling off a steep curb once were reminder enough – but I remind myself that with every dog, it takes time to develop what I call the physical telepathy between dog and handler. We’ve only barely begun to establish that connection but, for her first trip away from Cincinnati, I’ll give her a B-plus!
When I started the blog, the intent was to write about training with a new guide dog. That training doesn’t really end, though, when you leave the GDB campus, and I’m reminded of it more this time around than ever before.
We’ve been home for seven weeks today – two, then a three-week hiatus, and now two more. We are most definitely a work still in progress!
The good news is that Flo stopped being a cone-head on my birthday, May 2. I successfully completed the 10K Flying Pig (woo-hoo!) April 30, and wanted more than ever to keep walking with my sweet new dog the next day. Her tail had healed, and the trick was to keep her from biting it. I took off the e-collar, first as a test, and her joy was so infectious that there was simply no way I could put it back on. I sprayed her tail with Bitter Apple every day which kept that little mouth from biting on it, and we began again to work as a team.
We have kept pretty much to short, simple walks – and have gotten lost a few times – but with the gentle leader on to keep her hyperactive nose from sniffing everything that isn’t nailed down, we’re making progress.
Her first road trip was May 7, when Caitlyn and I drove to Eastern Kentucky University for the graduation ceremony of my stepdaughter, Kendra. Flo was a hit -- and practically perfect.
Then, May 11, I had to fly to St. Louis for the annual conference of the IAAIS (International Assoc. of Audio Information Services), where I serve as a public director on the board.
I travel a fair amount, so this was the first test of my “real life” for Flo, and at least one of us was more than a tad nervous.
The flight to St. Louis was Flo’s second ever – the first being the return home from San Rafael. She’s small, but exceedingly wiggly, so getting her to lie still at my feet was initially a challenge. When she finally settled, though, she was perfect the whole trip. I asked the flight attendant to hold her while I walked to the back of the plane for the bathroom. When I came back, the flight attendant confessed that she forgot about Flo who had slept through my entire absence. Yay Flo!
In St. Louis, she went to meetings and restaurants and had stellar behavior everywhere. I successfully taught her where my room was using the clicker and treats which, for her, was the highlight of the entire trip.
I learned that if I forget the gentle leader, she can’t remember to do her job – grazing a particular pillar twice and falling off a steep curb once were reminder enough – but I remind myself that with every dog, it takes time to develop what I call the physical telepathy between dog and handler. We’ve only barely begun to establish that connection but, for her first trip away from Cincinnati, I’ll give her a B-plus!
Friday, April 29, 2011
Flying Pig and (almost) Flying Dog
April 29, 2011
Flying pigs and (almost) flying dogs
There have been moments when I doubted that her tail would ever heal, the e-collar ever come off her head, and the road back to becoming a guide team could begin. But healing takes time, and finally, time seems to be on our side.
Four days ago, Monday, we went to the vet with high hopes that she would say the e-collar could come off. Au contraire! Instead, my vet seemed disgusted with me that Flo had once again torn at her bandage and wound and was still not healed. She kept asking me, “How is she getting to her tail?”
I wish I knew.
“Houdini dog?” was my only answer.
She bandaged the tail anew and four hours later, Flo had torn it off.
I was so miserable that I wound up crying in Flo’s cute little lamp-shade framed face, imploring her to “please, please, please leave your tail alone so it can heal.”
Well, either my dog is a genius and understood every word of that plea and decided to cut me some slack – or my daughter is far better at bandaging tails than my vet. Caitlyn bandaged the tail anew Monday night and, today, when we went to the vet four days later, it was still intact. Woo-hoo! An all-time record for sure.
Now, we’re bandage free, but need to wear the e-collar through the weekend to be sure Flo doesn’t chew at her tail now that it’s healing.
Meanwhile, I’m getting ready for walking the 10K in the Flying Pig tomorrow morning. It’s ironic that my motivation for participating in the first place was to give Flo the experience and some exercise, and now, I’ll be going without her. It’s all OK. There will be other walks where she can sparkle! I’ve had so little preparation (a four-mile walk yesterday and another a week ago would be the total of my preparation!) so I mostly hope I can just finish the course.
And maybe by Monday, Flo will be walking with me.
Flying pigs and (almost) flying dogs
There have been moments when I doubted that her tail would ever heal, the e-collar ever come off her head, and the road back to becoming a guide team could begin. But healing takes time, and finally, time seems to be on our side.
Four days ago, Monday, we went to the vet with high hopes that she would say the e-collar could come off. Au contraire! Instead, my vet seemed disgusted with me that Flo had once again torn at her bandage and wound and was still not healed. She kept asking me, “How is she getting to her tail?”
I wish I knew.
“Houdini dog?” was my only answer.
She bandaged the tail anew and four hours later, Flo had torn it off.
I was so miserable that I wound up crying in Flo’s cute little lamp-shade framed face, imploring her to “please, please, please leave your tail alone so it can heal.”
Well, either my dog is a genius and understood every word of that plea and decided to cut me some slack – or my daughter is far better at bandaging tails than my vet. Caitlyn bandaged the tail anew Monday night and, today, when we went to the vet four days later, it was still intact. Woo-hoo! An all-time record for sure.
Now, we’re bandage free, but need to wear the e-collar through the weekend to be sure Flo doesn’t chew at her tail now that it’s healing.
Meanwhile, I’m getting ready for walking the 10K in the Flying Pig tomorrow morning. It’s ironic that my motivation for participating in the first place was to give Flo the experience and some exercise, and now, I’ll be going without her. It’s all OK. There will be other walks where she can sparkle! I’ve had so little preparation (a four-mile walk yesterday and another a week ago would be the total of my preparation!) so I mostly hope I can just finish the course.
And maybe by Monday, Flo will be walking with me.
Sunday, April 17, 2011
The Woeful Tale of the Tail
April 17, 2011
It’s been a rough week.
The first two weeks home with Flo weren’t easy, but nothing was a surprise. Flo and I took small walks in the neighborhood every day, with the only real problem being her hyperactive sniffer and exuberance. She settled into our home easily enough. Because a new dog is always on leash or tie-down, she and Tuscan haven’t really played independently together, but already love one another.
Then, Monday, April 11, everything changed. Getting out of the car in our garage, I somehow closed the door on her tail! It was so horrible. She was out of the car and behind me. Then, I turned around to close the door and, somehow, her tail was in the wrong place at the wrong time. I’ll never forget her scream.
The vet said the good news is no break. But the tail is badly lacerated – all right at the very end. She got four staples and a bandage. It turned out that was just the beginning.
By Tuesday, she had torn off the bandage. We then got an e-collar. I’d never had one of these before, but it looks sort of like an upside-down lampshade on her head. (My editor at the Dispatch called it “the cone of shame” taken from some movie.) That’s exactly what it seems to be, because Flo has been completely depressed since getting it. By Thursday, she had torn the bandage off again – an impressive feat with cone and all – so the vet put six inches of fabric around her neck, thus moving the e-collar forward, so that she can’t get her nose around it.
She has – twice now – and is then in even more pain, crying till it breaks the heart of her human.
Each time the bandage comes off, she then sprays blood with every wag, so that my stairway and kitchen repeatedly look like crime scenes.
Still, 95 percent of the time, she just lies on her rug, dejected, and very un-Flo-like.
The instructors at Guide Dogs assure me that she’ll bounce back, that the first priority is healing the tail which means keeping on the collar. Meanwhile, I worry about her forgetting everything she knows while the healing takes place.
It’s been a rough week.
The first two weeks home with Flo weren’t easy, but nothing was a surprise. Flo and I took small walks in the neighborhood every day, with the only real problem being her hyperactive sniffer and exuberance. She settled into our home easily enough. Because a new dog is always on leash or tie-down, she and Tuscan haven’t really played independently together, but already love one another.
Then, Monday, April 11, everything changed. Getting out of the car in our garage, I somehow closed the door on her tail! It was so horrible. She was out of the car and behind me. Then, I turned around to close the door and, somehow, her tail was in the wrong place at the wrong time. I’ll never forget her scream.
The vet said the good news is no break. But the tail is badly lacerated – all right at the very end. She got four staples and a bandage. It turned out that was just the beginning.
By Tuesday, she had torn off the bandage. We then got an e-collar. I’d never had one of these before, but it looks sort of like an upside-down lampshade on her head. (My editor at the Dispatch called it “the cone of shame” taken from some movie.) That’s exactly what it seems to be, because Flo has been completely depressed since getting it. By Thursday, she had torn the bandage off again – an impressive feat with cone and all – so the vet put six inches of fabric around her neck, thus moving the e-collar forward, so that she can’t get her nose around it.
She has – twice now – and is then in even more pain, crying till it breaks the heart of her human.
Each time the bandage comes off, she then sprays blood with every wag, so that my stairway and kitchen repeatedly look like crime scenes.
Still, 95 percent of the time, she just lies on her rug, dejected, and very un-Flo-like.
The instructors at Guide Dogs assure me that she’ll bounce back, that the first priority is healing the tail which means keeping on the collar. Meanwhile, I worry about her forgetting everything she knows while the healing takes place.
Monday, March 28, 2011
March 26 Graduation
March 26 marked my sixth graduation at Guide Dogs for the Blind. It was the first time that rain had driven a graduation ceremony indoors for me, but otherwise, little has changed.
Everyone was hyper in the morning. We had our usual class meeting after breakfast and a round of “Simon Says” to lend some entertainment to the obedience sequence with the dogs. “Simon Says have your dog sit” meant, of course, to command your dog to sit. Just plain “Have your dog sit” meant that you should do nothing. Flo was perfect, and I managed to pay attention until almost the end. I was booted out at last, not for failing to heed or not heed a command, but because I had made a long leash when no one had told me to do that. It was fun and enabled dogs and humans alike to get focused.
An early lunch, then get dressed for the graduation and await the meeting of puppy raisers. Flo was “co-raised” by two families. The Thompsons-mom Catherine, dad Chad, and daughters Brooke, age 13, and Madeline, age 10, and the Corsons, mom Joy and college-age daughters Kayla and Shiloh. Everyone except Chad, plus an exchange student from Austria, Hannah, came to see Flo graduate. It was wonderful seeing them all, hearing tales of Flo’s puppyhood, and seeing firsthand how much all of these people have loved my wonderful spunky new dog.
Leo, the apprentice instructor with our class who taught Flo all her guide work, has a degree in fashion design. Flo and another dog in our class, Cancun, were Leo’s first completed works of canine art. So she made them special collars! Flo’s is gorgeous – red bandana-ish fabric with a lovely and prominent flower. A professional bit of style for a wiggling princess!
At graduation, as our names our called, we come forward and are presented our dogs by the raisers. (Only Joy and Brooke came forward in the ceremony.) The graduate says a few words, followed by the puppy raiser. Despite my resolve to the contrary, the emotion of others got to me. I had written a brief speech, held on braille note cards in my hand, but neglected it, and was completely choked up at one point. Embarrassing but there it was. Morgan Watkins, my friend and current CEO, was disappointed that I hadn’t said I’d “go with the Flo.” The writer in me wanted new phrasing, I guess. At any rate, I was particularly impressed by Brooke who, at 13, was one of the most articulate and poised speakers among the lot of us!
Never have I felt so loved after one of these ceremonies! First, all seven of my puppy-raising family came back to my room with me afterward. Susi Cherry was there and, of course, Morgan, and the surprise I’d known for only two days, my friends Michael and Kate.
After the raisers enjoyed final hugs with Flo and me and promises to stay in touch were exchanged, Michael and Kate took me out for FLo’s first restaurant visit and, for the humans in the bunch, a glass of wine! Just being with them was a perfect close to an emotional occasion. They are both so brilliant and present and warm. Love radiates from each of them – for one another and everyone lucky enough to be within the magic of their environment. I love being within the boundaries of that magic. Kate had made me a necklace – a beautiful white magnolia on green glass, smooth and clear and lovely.
As planned, I later went do dinner with those of my class still at the school – another restaurant outing for Flo – and it served as a calm and pleasant close to the GDB experience.
Sunday, March 20, 2011
Today's Column and T Touch
I have been a newspaper columnist for 25 years. For many of those years, I had to crank one out evey week and it ran in several papers. For the last five years, blessed relief, it has been running every other Sunday in only the Columbus Dispatch.
So, a column was due for this Sunday and, of course, I couldn't get onto any track other than what I'm immersed in at the moment: guide dog trining! To read today's column on this favorite subject, go here:
http://www.dispatch.com/live/content/editorials/stories/2011/03/20/finding-a-guide-dog-is-full-of-surprises.html?sid=101
This morning, I attended a session on T Touch. I've heard of it but knew next to nothing. It is a truly amazing skill set of massage touches to use on animals for comfort and healing. It was so cool to see half a dozen excited dogs blissfully conked out on the floor in a matter of seconds after we learned the first touches. I can't wait to get home and try them out on Tuscan as well, not to mention my two cats, Ophelia and Thomas.
My daughter, Melinda, has a cat with significant developmental disabilities and health issues, and T Touch will probably help him enormously, too.
It continues to pour, pour, pour, along with more thunder to spice things up a bit!
So, a column was due for this Sunday and, of course, I couldn't get onto any track other than what I'm immersed in at the moment: guide dog trining! To read today's column on this favorite subject, go here:
http://www.dispatch.com/live/content/editorials/stories/2011/03/20/finding-a-guide-dog-is-full-of-surprises.html?sid=101
This morning, I attended a session on T Touch. I've heard of it but knew next to nothing. It is a truly amazing skill set of massage touches to use on animals for comfort and healing. It was so cool to see half a dozen excited dogs blissfully conked out on the floor in a matter of seconds after we learned the first touches. I can't wait to get home and try them out on Tuscan as well, not to mention my two cats, Ophelia and Thomas.
My daughter, Melinda, has a cat with significant developmental disabilities and health issues, and T Touch will probably help him enormously, too.
It continues to pour, pour, pour, along with more thunder to spice things up a bit!
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