Tuesday, October 29, 2013

Seeing Damn Straight!

I can see, therefore I am free. With my vision restored, I have regained my independence. I can’t express how grateful, and relieved, I am. After months of experiencing double or blurry vision, with all the attendant side effects, I got a clean bill of vision health today from my neurological ophthalmologist specialist. Overseeing my case all the while was my stroke neurologist, who’s been there for me since my stroke 16 years ago. He persisted in following every path to determine a cause. He listened to every detail, every clue, every nuance I could provide and in so doing provided a classic example of doing less pontificating and letting the patient guide the diagnosis.

There’s a maxim in medicine that goes something like this: When you hear hoofbeats, think of horses, not zebras. In other words, consider the expected rather than the exotic. We know why they call it the “practice” of medicine. Because each patient presents with a unique set of variables, it becomes a guessing game of trial and error to coax a diagnosis. In my case, it was my stroke that was the red herring for the practitioners who tried to tie it to my vision problems.

Just as my double vision shifted from eye to eye, so too did my diagnosis, from one presumed abnormality to another. First it was decompensated phoria, or possibly an ocular ischemic stroke. Then it was ocular myasthenia gravis for which I began treatment. Now it has shifted again to what appears to be related to an inner ear infection. This makes sense to me as one constant I have experienced is a lightheaded sensation similar to being on an elevator. As I alluded to earlier, it was the guidance of my stroke neurologist that helped me navigate this minefield. Given our history together, I used to joke that I got the white glove treatment because I was his “special” patient. But the reality is this is how he treats all of his patients. He encompasses all of the compassionate qualities that I evangelize for in integrating humanity into the science of medicine. Would that we could clone him.

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Tuesday, September 24, 2013

The Practice of Medicine: Diagnosis by Elimination. OMG!

As a kid, I would sometimes cross my eyes while being silly with my brothers. My Mom would say, 'If you keep making that face, it will stay like that!" I could never keep my eyes crossed for longer than a few seconds, though, because it was too uncomfortable and rendered me helpless.  Recently, July 25 to be exact--more than eight weeks ago--and yes, I am counting--I awoke with double vision; the medical term is diplopia. In my particular case, it is called binocular diplopia because if I cover either eye, I have single vision, as opposed to monocular diplopia where double vision occurs with only one eye.

Diplopia is described as a multidisciplinary monster involving a cross-section of medical providers. I am learning this firsthand. I have three specialists in the neurology department alone: stroke, ophthalmology and neuromuscular. These appointments are in addition to multiple visits to my primary care and a consult with an endocrinologist.

The initial armchair diagnosis for my diplopia was a hard hit to the back of my head. While out at a restaurant celebrating my 16th Homage to My Hemorrhage with my parents and Jim, I threw my head back in laughter and hit the corner of the molding. The thought was this could have caused some bruising to my ocular nerves. Of course, I felt you couldn't plant a bigger L for Loser on my forehead, but was hopeful it would resolve as it healed.

My initial thought was that my condition was related to the hemorrhagic stroke I suffered 16 years ago. That assumption has proved to be a red herring. Aside from contacting my neurologist, I took to the Internet, hoping to get some clues to this new symptom. The top of the search results was scary: tumor, cancer, stroke, Multiple Sclerosis.
The tally so far:
·         Three visits to ER (one by ambulance)
·         Two hospitalizations
·         Two Cscans
·         Two MRIs
·         Two EKGs
·         Two EMGs (a single fiber one scheduled next week- SFEMG)
·         A PET scan
·         An Ultrasound (with follow-on biopsy)
·         BP monitoring cuff for 24 hours
·         Multiple eye tests and blood work evaluations
·         Multiple doctor visits
As I did before with stroke, I have become proficient in the medical terminology of my condition. At first, my neuro-ophthalmologist thought I had decompensated phoria, where the eyes are misaligned and can no longer fuse the vision into one image. She measured me and prescribed prisms for my glasses. The prisms worked only for a few days because my double vision kept switching from one eye to the other and the measurements changed. Now the thinking is I have Myasthenia Gravis (MG), a neuromuscular disease that typically is systemic. There is also a less common form of MG that affects only the eyes, which is called Ocular Myasthenia Gravis (OMG). OMG is exactly  my sentiments!

One specialist in neurology suggested I do what all her patients do: use an eye patch. This, she assured, would allow me to function normally. NOT. I already suffer from hemi-paresis, neuropathy, and my most debilitating deficit--Left Neglect. I have learned to use my eyes to compensate for what my brain ignores--the left side. When I wear the eye patch, I get dizzy and become light-headed, which accentuates my imbalance. I am in effect compounding my impairment.

For the second time in my life, I have been hospitalized and discharged as etiology unknown; that is, they have not been able to determine the cause or origin of my condition. I am an enigma. I take no comfort in being some kind of arcane puzzle. I have come to appreciate what the practice of medicine truly means. I don't have a diagnosis; hence, there is no treatment plan. A diagnosis will evolve through the practice of elimination.

The good news, so far, is that many bad things have been ruled out. Still, just by living through this my life has been altered. The professionals are perplexed. All my tests for OMG have been negative, yet clinically I present with the disease. My hope is that my diplopia resolves soon without explanation. If this happens, the medical diagnosis will be a virus, as that is the catchall for unexplained recovery.  Oh my God, can this be true that I may have a diagnosis called OMG? The irony of this possibility makes me LOL!

“Every day is a gift” might be a tired cliché to some, but for me, it is the way I live my life. Each day I unwrap the present with all the wonder and excitement at the possibilities each day holds. What I took for granted was that being able to literally see the day was part of the gift. This at times has eroded my positivity, but I have done my best to find the humor. I told Jim it was almost like I was cheating because there were two of him. When out with friends I joke that I have my own entourage because I see twice as many of them. And now the cup is no longer half-full, it’s full, because there are two of them.

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Wednesday, February 27, 2013

Commentary on Brain Injury and Marriage

I read the article 'When Brain Injury Tears at the Heart' by Sarah Wheaton, published New York Times, January 9, 2012. I found it disheartening that couples are continually warned about the devastating changes introduced by a brain injury and the effects it has on marriages, with divorce as the likely outcome. I have met many survivors, but I'm particularly interested in hearing from their partners, who have their own diagnosis, it is called helplessness.

Consider the traditional wedding vow: 'I, John, take you, Jane, to be my wife from this day forward. I promise to be true to you in good times and in bad, in sickness and in health. I will love you and honor you all the days of my life.' Perhaps, there should be a head injury clause--'but if you become a completely different person, the union is null and void. The state of the marriage prior to the injury will be a good indicator or what will happen afterward. A strong marriage where happiness and forgiveness are cornerstones, can withstand the overwhelming mutual grief and guilt that typically occur post-injury. The afflicted partner takes on the burden of guilt for saddling the other with the caregiving role, while the caregiver becomes frustrated and may feel resentment at the detour the marriage has taken.

I have become friends with a couple from Canada. Mike, a stroke survivor, has left-neglect, which is how we became friends, as left-neglect is my pronounced deficit. But more important, post-stroke, Mike underwent a profound personality change. Prior to his injury, Mike was a governmental analyst, which suited his personality--quiet and guarded. Post-stroke, he became outgoing and spontaneous (medical professionals often call it impulsive, but I believe spontaneous gives it a better spin). His wife Sue said, "It's like living with a completely different person; he's not the person I married." They are making their marriage work in spite of the drastic changes. Mike has new interests that were not on his radar pre-stroke. He now sings and acts and by all appearances enjoys life to the fullest. He even got a tattoo, and a sizable one at that, in tribute to his left neglect. Sue is adjusting to the 'new Mike' and is falling in love with a new person. She says it’s almost like a second marriage.

 As Mike says, "Post stroke marriage is certainly an interesting area, both potentially good and bad.
In our case I seem to be dealing with what happened easier than Sue does although I long for the old days. I believe I had the easier part and it was more difficult on my family than it was on me. Over time we have moved on to a new " normal" and the event has slipped more into the background."

Sue's personal commentary on their marriage post-stroke is a haunting reminder that the injury equally effects both partners in the marriage. "Our lives were in a constant state of transition for four years of the last five and it has really only been the past year that I can say that I am becoming comfortable with the new relationship. I am working hard at accepting our current lives which in many ways is better than pre-illness however what I struggle with are the little reminders of the early days of the illness and the recovery - the well-meaning conversations about Mike's illness, the anniversary of the event (around Christmas), the things you used to do and struggle to do now. Not big things but reminders just the same. I want to put that period of my life in a box and place it on a shelf far in the back of the storage room. I will know it's there and what the contents are but don't have to look in unless I want to. There are two brain injury victims, the victim themselves and their partner. It is a very lonely journey."

I met Donnie at a brain injury conference where I gave the keynote address. Donnie, a roofer, sustained severe head trauma when he fell 45 feet to the ground. He is married with two children, but cannot remember them; he can't even recall their names. He has an annotated photo album attached to his wheelchair which is in effect his story and his history. Unable to converse or make small talk, he hands the album to anyone who engages him, as a way of explaining what happened to him and who he used to be. In contrast to survivors who remember, but cannot control their emotions, his injury not only changed how he interacts with his wife and family, but how he is with anyone he encounters. Although he is the same husband and father in appearance, he is no longer the person they knew. I believe regardless of the injury the true essence of a person remains unchanged. This is what loved ones cling to when working toward recovery.

In my own experience, I was severely disabled initially and required constant supervision and care. I loathed that my condition made Jim less a husband and more nurse and caregiver. I remember a good friend joking, "Poor Jim, he’s really screwed now. He couldn’t possibly leave you now even if he wanted to." Although it was said in jest, it struck a chord with me. I knew that it wasn't exactly what Jim bargained for when he said 'I do.' My injury became the focal point of our lives. It not only controlled what we did as a couple, but it also drove our conversations. I wanted Jim to remain married to me because he was happy and still in love with me. It wasn't until my condition stabilized and I became less dependent that I could wrest control back from my injury. With that milestone, I said no more will this dominate our lives. When Jim came home from work that night and started with the usual solicitations (how are you feeling? how’s your head?), I said, "We are no longer going to discuss my injury. It is out of the driver seat and stashed in the trunk. Tell me about your day."

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Wednesday, September 19, 2012

Acquired Brain Injury (ABI) vs Traumatic Brain Injury (TBI)

The Brain Injury Association has debated the definition of Brain Injury with the intent of making the distinction between Traumatic Brain Injury (TBI) and Acquired Brain Injury (ABI). Traumatic Brain Injury results from an external physical force such as might occur in a car accident, sports event, fall, or anything that involves blunt force to the head. Acquired Brain Injury results from an internal event such as a stroke, hemorrhage, brain tumor, infection, poisoning, and so forth. An ABI by definition encompasses TBIs since both injuries occur after birth.

I had a hemorrhagic stroke which would be defined as an ABI. In my experience, I don't see much difference in terms of rehabilitation and recovery regardless of the terminology. Both conditions require an enormous amount of hard work, diligence and perseverance. Brain injury is brain damage, that is, dead brain tissue, and it is always traumatic. Whether acquired, which I believe is a misnomer--it sounds like something sought after or pursued, or traumatic, the injury presents enormous obstacles to overcome.

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Saturday, September 15, 2012

Pure grit: Gabby Giffords--a national role model

It is my pleasure to introduce you to an informative blog called, Cell 2 Soul: The Humane Health Care Blog, in which I have written a commentary on Gabby Giffords' delivery of the Pledge Allegiance at the National Democratic Convention. Gabby Giffords is truly an inspiration who embodies the meaning of bi-partisanship. Note that I would like to make a clarification regarding my commentary. I am not a TBI (traumatic brain injury) survivor, I am an ABI (Acquired Brain Injury) survivor. While there is a distinction in the occurrence of the injury, the road to recovery is similar.

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Friday, July 20, 2012

I am Hot...Sizzling Hot.

Yesterday, my impairment led directly to injury. I am fiercely independent and loathe asking for help. But sometimes I have to recognize that certain situations require assistance. It sucks!

What happened, you say? A tornado warning forced the local Farmer’s Market to close, which changed my menu plans for the evening. Instead of something fresh and simple to prepare, I had to resort to whatever I could scrounge up in my cupboard. How about a pasta salad? That should be simple enough, or so I thought. This is where the trouble starts.

To make pasta requires a big pot of boiling water. When done, drain the pasta into a colander. You know the drill. Easy enough with two fully functioning hands. That’s where the stroke comes in. My left hand doesn’t work. I lost control of the pot en route to the sink and the boiling water went all over, into my shoes, splashing my legs, even hitting my belly (no comments about an easy target, please).

Letting out a scream, I headed for the bathroom, knowing I needed to get in the shower as fast as I could, trying to strip off my clothes on the way. Rory, hearing my scream, rushed up from his room. Good thing, because I couldn’t get my brace off myself.  Finally in the shower, I let the cold water wash over the burned areas for a good 20 minutes.

Once out of the shower, I needed to ice the affected areas. But there were so many. Both legs, both feet. And the belly. Ice packs everywhere. Picture trying to manage that balancing act. I felt like a snow cone.

Jim came home looking distressed, but admonishing me nonetheless, for my actions. Right, just what I needed to hear, like I didn’t know that. And I had to acknowledge my failure to heed Mom’s constant reminders 'to be careful'. Good advice, but does it really make me more careful or safe? ' Mom, I will be reckless and careless'  enters my mind in response. Now I better take her advice to heart.
I was also pained by a flashback to the image of myself reflected in the mirrored walls of my bathroom, making my way to the shower, an image that could induce another stroke. This hot, sizzling body looking soft and sagging, with blotches of red and purple, like a Jackson Pollack canvas.

So here I am today, housebound, barefoot, lathered up with a burn cream and wearing a moo moo to keep clothing away from the skin, and humming the tune, Burn, Baby Burn.  Uncomfortable, yes, but more so annoyed and frustrated by the setback. I’m told I should forgo shoes and my brace for a week to let the areas heal properly. A week? Hey no bikini, ok, but shoes! Are you kidding me?

Typical of these situations is to try to point to someone or something as the cause, but it is rarely ever a single thing. Rather, it is usually a series of events. What if there was no tornado warning to force the Farmer’s Market to close? What If I had checked my independence at the door and called on Rory to transfer the pot? Or if I had listened to the last “be careful” uttered by Mom? Maybe it was the recent Botox shots working so well to overcome the effects of stroke, it relaxed the tone in my left hand to the extent it was even more useless than usual? These all played a part, but in the end, maybe it was just an unfortunate accident. Avoidable? Sure, if you change something in the sequence of events leading up to it.

Now if only the burns could have melted away some fat cells, the lesson learned would have been worth it.

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Tuesday, July 17, 2012

15 years later...Milestones occur every day!

Fifteen years ago today, I narrowly escaped the Grim Reaper’s scythe. Every year since, I have marked this day as a 'Homage to my Hemorrhage,' celebrating the gift of more time here on earth.  Originally, I thought of this year’s anniversary as a milestone, but in reflection, I realize that every day is a milestone, an extra opportunity to make a positive difference.

Although my life’s path as I had envisioned veered way of course, I am immensely grateful for the incredible opportunities my stoke has given me.  I never felt like a victim of stroke, but rather a survivor of life's happenstance. While some may cringe that I refer to my stroke as a gift, it has shaped my life in ways that are surprisingly full of wonderful possibilities and brought many remarkable people into my life, people who leave me in awe and inspired by the power of the human spirit.

No one completely escapes adversity, be it physical, emotional, or financial. Mine happened to be a paralyzing stroke, but it has given me insight to what is important. My stroke has taught me lessons that keep me grounded, fulfilled, and ready to greet each day with renewed hope. Thanks to my stroke, I've learned:
·         Life is about choice. Each choice is predicated on my prior choice.
·         Laughter truly is the best medicine for the mind, body and spirit. I require daily doses. It starts by laughing at myself, and when my dear friends join in, it creates a cacophony of joy.
·         No one is responsible for my happiness but me. I must choose to be happy. But just because I choose it doesn't make it so; it takes hard work.
·         I must overcome obstacles to accomplish a goal. Obstacles, or roadblocks, cause detours, but I am not discouraged. Detours often lead to new discoveries about myself and what I am capable of.
·         The proverbial 'light at the end of the tunnel' is there only if I find it within myself to foresee a positive outcome.

I am not my stroke. Does it define me? In some ways, perhaps, but it is only one side of the multifaceted person I am.  I am the victor of my stroke; I conquered the beast. Yes, it raises its ugly head daily, but I am battle ready. This enemy did not defeat me, it only made me stronger, wiser, grateful, happier, yes, happier. I know up-close-and-personal that every day I get out of bed is a gift.
Limping for joy!

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Sunday, January 01, 2012


Here I am ringing in the New Year with all the hope and promise of a new beginning. I can put all the ‘should haves’ and ‘could haves’ behind me with 2011 and focus on the here, now and future with unbridled energy. I’m surprised I have energy left over from 2011, but the new year brings with it a clean slate. It is a ‘do-over’ for 2012. I’m reflecting on what I need to do to make this a pivotal year. My first thought is the obvious—lose weight and improve my health in the process, but that’s superficial compared to what really matters. I start my day thinking, ‘I’ll try, ’but as the wise Yoda says, ‘Don’t try. Do.’ So, out with ‘trying,’ in with ‘doing.’

Here’s to the f-words in 2012!

FAITH: Exercise my faith to bring me comfort and to assist me with tasks I feel I cannot accomplish on my own. Feed my soul with healthy, positive thoughts and help me tap into what my soul is saying.

FAMILY: Exercise my love and appreciation for the wonderful family I have been blessed with, and they are truly a blessing, because I didn’t get to pick them. And for my husband who, I always say, was heaven sent. And for my son who inspires me to do more than I think I can. With them behind me, I am always moving forward.

FRIENDS: Exercise my friendships. Embrace and cherish the friends who have opened their hearts to me. They are my safety net and my compass. They accept me for who I am, with all my foibles. To all my friends, old and new, I will give back more than I take.

FORGIVENESS: Exercise forgiveness. Recognize that I get more in return from the act of forgiving than the party I forgive. The adage ‘Hatred does more damage to the vessel it is contained in, than to the vessel it is directed at’ rings true.

FOCUS: Exercise focus on my true purpose here on earth. Be grateful for the opportunity to impact others lives. Spread the message of hope to inspire others to overcome their physical or emotional challenges.

FUNNY BONE: Exercise humor. Make every effort to enjoy a good belly laugh daily, even at my own expense. Being fodder for a good-natured laugh is preferable to laughing at others. Laughing releases those endorphins every bit as much as that ‘runner’s high’ from physical exertion.

FORTITUDE: Exercise fortitude to overcome hardship. Don’t be a naysayer when faced with difficulties. ‘Those that say it cannot be done, should not interrupt the one doing it.’

If I follow through on these goals, I will improve my well-being in 2012 and beyond. I might even lose some weight in the process.
With Love,
Julia Fox Garrison

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Monday, November 07, 2011

Invite me to Your Book Club--I Make Virtual Visits to Book Clubs!

I love connecting with my readers, even if I can't do so in person. If your book club makes Don't Leave Me This Way (or when I get back on my feet you'll be sorry) its selection, I'd be happy to join the discussion. And I promise, it will be a lively and irreverent one. You can ask me anything; I'm an open book. To invite me to attend your book club via Skype or phone, e-mail me at: pinheadpress@comcast.net
Check out these links for Q&A samplers. This one with my publisher, HarperCollinsPublishers And this one with the ADVANCE Book Club for Nurses

I look forward to joining your book club, if only for an evening. I always enjoy the interaction and the new friends I make!

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Friday, November 04, 2011

I was interviewed by Harriet Cabelly, a life coach, for her November interview blog. Prior to becoming a life coach four years ago, Harriet was a social worker for 20 years in the NY school system and in private practice. The focus of her blog is people overcoming difficulties and how they grow through adversity. I had the good fortune of having her reached out to me for an interview. I think she captured my outlook perfectly. Please take a moment to visit and share her website which is chock-full of tips on improving your life. Look at it as your daily dose of inspiration!

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Wednesday, April 14, 2010

Julia's HUGS Method (Humor Ultimately Gives Strength)--HUGS to you!

I am a hugger. I hug everyone. Without exception. A mauling, Jim aptly calls it. When someone extends a hand, I brush past it and go in for the embrace. Usually, people are surprised but grateful for the gesture. I believe a hug removes barriers and creates an aura of warmth.

I’ve been warned about hugging certain people who may find it inappropriate or who might not be receptive. Once, while doing a presentation at a hospital’s annual executive meeting. I was cautioned about hugging the CEO. He just isn’t the hugger type, I was told. Why, I thought, would I change who I am because of another’s insecurities?

Recently, my husband and I went out to dinner at a new trendy restaurant located in an office park. Trolling for a parking space (the place was mobbed), we noticed a car parked in a handicapped space without a placard; a woman stood at the driver side door talking to a person within.

“Excuse me, do you have a handicap placard?” Jim asked politely. Expecting to hear, “Yes, thanks for asking. I’ll post it,” we were greeted instead with a stream of obscenities.

“You f#*&ING B@#$TARD. Mind your own f*#@ing business.” The fusillade continued as the woman assisted her husband into the restaurant. The effect was jarring
“Wow, Jim, I think she may start a riot in the restaurant. Hope they’re seated by the time we get in there,” I said. But of course there they were, standing just inside the door as we entered and walked past them to the hostess desk.

As I was checking on our reservation, Jim approached the woman and said, “Hey, I didn’t mean to offend you. I am sorry you took it that way. We are on the same side of the issue.” She responded with the same venomous verbal assault we were subjected to outside, with no regard for those within earshot.

“You f#$*ing a@#$hole. How dare you question me? I’ve been dealing with people like you for 35 years. I am sick of this f*&(ing sh#t every time I go out.” I approached as she continued to spew, noticing that her husband stood away, facing the wall, obviously embarrassed by, but used to, his wife’s outburst. I felt bad for him.

“I am sorry that you are so angry with us, but surely you have had experiences where people abuse handicap parking. I find that people tend to treat it as a 10-minute-only waiting area. If you had posted your placard, we wouldn’t have had occasion to ask.” The woman couldn’t hear what I was saying because of her relentless ranting.

Without really thinking, I got very close to her and said, “You need a hug.” I enveloped her in my arms and gave her a signature mauling. Her whole body bristled and stiffened. I whispered in her ear, “I am so sorry for the pain you are feeling. I have been through some hard times too. I understand. Although you are angry and hurt by what life has dealt you, there are good things in life too. It is a choice whether you make an effort to see and experience them.”

With that, we were called for our table. As I released my bear hug, her rigid body softened, and she sheepishly said, “Have a nice dinner.” I replied, “You too, enjoy your evening.”

As we were being seated, Jim said, “I thought for sure she was going to repel your hug with a slug. I can’t believe you did that.”

“Me either. I didn’t give it any thought. It was just automatic; I certainly didn’t know how she would respond. Sure glad it turned out OK.”

Joining us shortly thereafter, our dining companions recounted their conversation as they approached the restaurant. My girlfriend said to her husband. “Do you think Jim and Julia are here yet?” Her husband replied, “If you see a commotion, you’ll know they’re here.”


Friday, November 07, 2008

Do you have a personal anthem?

Music is a good source of healing. I discovered a song post stroke that I use to aid my recovery efforts. Christine Aguilera’s song called Fighter is be fitting of my stroke hurdles. Although the song is written about a personal relationship, it suits the union I have with my stroke. Aside from becoming a mother, there is not one single event that has changed me so significantly.

It made me reassess and redefine who I am. I had to say Good bye to the corporate working mother and recreate a new path, but it is now a path more fulfilling because I am positively sure of my purpose here on earth—to help others find their way through difficult times--to show that using heavy doses of humor and keeping a positive attitude will help one prevail.

It’s a good pump up song for a better workout at the gym too!

“After all you put me through you’d think I'd despise you but in the end
I want to thank you 'cause you made that much stronger…
So I wanna say thank you, cause it...

Makes me that much stronger
Makes me work a little bit harder
Makes me that much wiser
So thanks for making me a fighter
Made me learn a little bit faster
Made my skin a little bit thicker
Makes me that much smarter
So thanks for making me a fighter…” Christine Aguilera

I have other anthems as well, such as; Al Greene’s Let’s Stay Together sums up my relationship and marriage to Jim:

“..Let's, let's stay together Lovin' you whether, whether Times are good or bad Happy or sad Good or bad, happy or sad…”

Additionally, through those thick and thin times since our marriage vows, I would add: ‘Lovin you whether, whether slim and trim or chubby and heavy, whether size six or sixteen, whether cheery or bitchy’.

And when I let out a loud belch, in the privacy of my home of course, I break into “She’s a Lady” by Tom Jones!

I suppose when I actually get my hemiplegic body on those roller blades, I’ll be adding a new anthem to my repertoire: ‘Let the Good Times Roll’!

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Thursday, November 06, 2008

Listen and participate in the ADVANCE Book Club for Nurses

ADVANCE for Nurses publication selected Don't Leave Me This Way
for the inaugural book to launch their online book club. I'm remiss in posting
as it was back in July, but for those of you who would like to hear the
podcast of my interview with the editor and follow-up discussion, the link is


Wednesday, March 28, 2007

Plateau or Summit?

When I was in rehabilitation, “plateau” became a dirty word to me. I know that others undergoing rehabilitation share this sentiment. The word is code for “you’re not going to get any better” or “don’t expect to see any more improvement.” All you do is strive to get back to normal; all they tell you is be happy with what you’ve achieved. The conspiratorial wheels start to spin when the insurance company terminates your therapies because you’ve “plateaued.”

This July marks the tenth anniversary of my stroke and thus the tenth opportunity to pay “homage to my hemorrhage,” as I like to call it. Ten years out, yet my symptoms persist: hemiparesis, left-side neglect, neuropathy, proprioception problems, spasticity. Yes, to experience the condition is to know the term to describe it, though I can think of better ways to expand my vocabulary. So, sure, I still have a lot of deficits, but do I think I’ve plateaued? No way. I’m going roller blade and I’m going to run again. In a recent radio interview, I was asked, “Are you 100 percent now?” I answered, “Are you? I’ll be 100 percent when I get to heaven.”

In my ongoing recovery, I picture myself as any professional - an athlete, an actor, a musician - who strives to achieve by practice, hard work, and determination. Like a tennis player working on her backhand, I am constantly working on my gait or on trying to control my spastic left arm. So it really raises the hair on my neck when I hear a patient described as having plateaued. I was speaking to a brain injury group the other day, where a woman told of her husband who, eight weeks after suffering an aneurysm, was described as having plateaued. Eight weeks. That hardly seems like enough time to come back from the trauma to the brain, let alone to show any signs of what degree of recovery might be expected. How can they be so quick to quit on a person?

The word “plateaued” should be expunged from the medical lexicon. I’m not advocating false hope, just to keep hope alive. Never underestimate the human spirit and the will to get better.

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Thursday, November 09, 2006

I'm often asked why did I write Don't Leave Me This Way?
I had alot to say! I didn't write it for cathartic reasons,
because I was determined to not let the stroke define me.
Although my anecdotes are unique to me (and there are
some laugh-out-loud ones), my patient care seems to be a
common thread with readers that have been through the
system. My goal is to help patients help themselves and
to improve the doctor/patient relationship. I can see I'm
already making a difference, although it is a s-l-o-w process--
just like stroke recovery.

Is Don't Leave Me This Way for the general reading masses? Yes.
It is for any one that has had to face something hard--whether it
is physical or emotional. It is about going through identity
changes: being a wife and a mother--marriage and parenting.
While it details my true comeback story from a devastating
hemorrhagic stroke, it encompasses every facet of life when
given lemons and how to make the grandest lemonade one
could imagine!


Monday, September 11, 2006

9/11 - Eyes looking forward with optimism, glancing back with sadness

My recovery has always been about looking ahead. I do, however,
look back occasionally to chart my progress since I was struck by
stroke. September 11 is a time of reflection and sadness for our
country. As when any horrific tragedy happens, we can all recall
where and what we were doing at the time. I was leaving my
neurology appointment when the first plane hit the towers,
having just learned what had caused my stroke four years earlier
that left me paralyzed. I had never had a conclusive diagnosis until
9/11/2001-- the day my country was paralyzed.

I can go right back to July 17, 1997, the day of my ‘incident’ and
remember every detail—what I was doing, who I was with, what
I felt like. It’s the same with today, 9/11: I can replay it like a
movie. But I, like my country, am a survivor, so I choose to
look forward. Like me, my country has come a long way
from those first paralyzing days.
We are a resilient people; we are all survivors.

Monday, July 17, 2006

Today is my 9th ‘Homage to my Hemorrhage’ Anniversary
Pop the champagne! I don’t need much to find cause for
celebration, but this date marked a detour in the course of my
life, and has in many ways, become more celebratory than my
actual birthday--October 17.

On July 17, 1997, my co-worker, Caryn, drove me to the hospital.
I didn’t know it at the time, but every time my blood pulsed it was
releasing blood in my brain. I knew I was dying and told Caryn so.
I was also calmly giving directions how to get to the hospital.
“Turn Left. I’m dying. Turn Right. Call everyone in my
family, I’m not going to make it.” I don’t see Caryn often now.
In fact it is sometimes years. But every July 17, 1997, for nine
years now, I receive flowers delivered on my doorstep from Caryn.
I guess the real-life drama impacted her life as well.

Many folks ask why I would celebrate a date that I should dread
when it represents so much distress, pain, and a disabled body?
It does have all those elements, but it also shows how far I have
come from a day (and for months thereafter) when I thought I was
going to die. Celebrating allows me to take the upper hand over my
stroke (albeit the right hand only—my left hand is still good only for
decorating). This is a day for reflecting or and rejoicing over the gift
of nine more years of life—to be a mother, wife, sister and
daughter. I don’t like how the stroke has left my body, but I do
cherish the gift of knowing my purpose here on earth—to show
others facing difficult times that you can survive by reaching deep and
using the tools God gave each of us—it’s not what happens to us—it’s
how we react to it.

Tuesday, July 04, 2006

Happy Independence Day! (literally)

For those of us who have survived a devastating, life-altering challenge,
it has a much more personal meaning. I’m truly thankful that I live in a
country that celebrates our freedom. And, I’m equally thankful that I
have regained my independence in being able to do those every day
activities we all take for granted—eat, bathe, dress, go to the bathroom,
or walk on my own. I celebrate the country’s freedom, but also my personal
independence to continue my life, albeit altered, but Free! Happy 4th!

With Love, Julia

Monday, July 03, 2006

I met a legend and a stroke survivor—Kirk Douglas!
While in NYC filming for my GMA appearance, I was having dinner
with ‘my people’ (editor, publicist, and agent)—I can’t say it
without giggling—when lo and behold who walks in to the restaurant,
but Kirk Douglas. I’m one to always see signs in everything, and to
me, Kirk Douglas was the most meaningful person I could have
encountered. I don’t believe in coincidence—I believe coincidence
is in the Plan. When I originally took pen to paper for Don’t Leave Me
This Way
my working title was A Stroke of Luck. Kirk Douglas beat
me to the bookstores with, My Stroke of Luck.

Of course, I couldn’t let this wonderful opportunity slip by.
I dutifully waited until he was finished with his meal to introduce
myself. I limped over to his table, introduced myself, and, while
holding his hand, then said:

“You and I joined a club that we never asked to be members of—
stroke survivors club—but I believe that we make pretty damn good
members. I am in awe that you have been such an eloquent spokesman
(yes, eloquent although his speech is impaired), because you have
proved that you are a true gladiator in life’s challenges. I hope
to pick up the torch and carry it with you.”

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Friday, June 09, 2006

Welcome readers,
This has been some journey for me. I never proclaimed,
"I'm going to write a book someday." It just wasn't part
of my DNA. But in the aftermath of my stroke, dealing with
the medical community and insurance companies, and trying
to rehabilitate myself, I sensed I had a story to tell.

It seemed that my experience was a blueprint for how not
to let the system dictate the direction, pace, and objectives
of recovery. I've learned that what your heart, mind, and
intuition tell you can be as valuable as any medical opinion.
My ordeal has also taught me to listen to and rely on my inner
voice, my soul, because it is my link to God and the angels that
watch over me.

We all have a story to tell on this journey through life.
I invite you to share your story here; perhaps it will help
you and others along the way.

This has been some wild ride, but I rather like that wind-blown
look. Many blessings to you on your journey.
with love, julia

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