I FOUND IT!

“I found it! I found my bubble! My bubble is back! I’M BACK!”   These words resounded in my head as I scootered through the Promenade on the fifth deck of  the Royal Caribbean Cruise line’s 3rd largest ship, the Oasis of the Seas.  I was invited to speak to the MS cruisers on the ship by the nonprofit organization MS Bright Spots of Hope.  Together, we would spend 7 nights in the Caribbean having ports of call in the Bahamas, St Thomas, and St Maarten before returning to Port Canaveral, Florida.

My "bubble" or "joy bubble", is how my mom and her two sisters described me as a little boy - a term they used to depict the pure effervescent  joy and happiness I showed for everything.  However, as I grew out of childhood and my teen years, my "bubble" began to shrink.  With the accumulating responsibilities and stresses of adulthood, it kept getting smaller and smaller until it felt lost forever. Thankfully, on the cruise, I discovered I was wrong. It was still there inside of me, waiting to be nurtured and given room to grow.

Upon boarding the ship the afternoon of March 5, 2017, I immediately felt the stress and worries from the outside world begin to melt away. The weight on my shoulders gifted me by life began to lighten. As I scootered further into the ship a few of the veteran MS cruisers and a couple of freshmen MS cruisers greeted me. I soon began to experience myself among comrades in arms, among old friends I had never met. I felt at home.

In addition to fantastic ports of call, we had exciting creative arts activities sponsored by MS Bright Spots of Hope: ceramic tile decorating, watercolor painting, and bracelet making.  Also, talks were given by Brandi Johns, Mary Ellen Ziliak and her husband Roger, Dennis Tooley, and myself at sessions throughout the week.  And finally, we had the most memorable closing event, “MS Evening of Hope” featuring myself as one of the speakers and sponsored by Bright Spots.  I was also awed by Dennis who gave us an excellent lesson on how to handle, with grace and acceptance, the obstacles and knuckleballs MS presents.  His unexpected temporarily loss of vision did not keep him from giving his presentation.  It was truly humbling and unbelievable.

So many moments and events of the cruise were truly memorable, like  the Tuesday night Hoedown costume party where those of us in scooters and wheelchairs learned line dancing.

One particular incident, however, stands out for me.  While sitting outside a restaurant, on the Promenade deck, sharing  MS and the military horror sagas with another military Veteran cruiser, an attractive blonde cruiser, whom I had noticed on several occasions earlier in the week, walked by the table at which we were sitting.  She turned around, walked over to our table, and sat down.  She told me how much she enjoyed my previous night's talk at the MS Evening of Hope.  She then began to share with me a few of the difficulties and pains that multiple sclerosis has brought into her life.  She shared with me the feelings of isolation, loneliness, aloneness, and abandonment she deals with thanks to multiple sclerosis.  She talked about how her friends slowly began distancing themselves from her.  She shared about the social activities she used to attend, to which she no longer gets invited.  As she shared. a tear began slowly sliding down her left cheek.  Soon it was joined by another, and another, and another, until tears were freely, silently, flowing down both cheeks.  I felt her pain. I remembered my own similar experiences early on in my journey with MS.  I shared with her.  I told her the one good thing to come from all of this is that one really gets to know who is a true friend.   Who will stick by.  She then echoed thoughts that had been on my mind about the cruise during the past week.  She felt grateful for the cruise because It let her know she was not alone.  She was not a “freak”.  Thanks to the this cruise, she felt part of a family.

Nearly a month after the cruise, one night while brushing my teeth, I had a realization that stopped me abruptly, and made me sit back and really think. What struck me for the first time was I had probably been the most physically disabled person in our group of cruisers, likely, the most physically disabled person on the entire ship. Yet, not once during the cruise did I think about, or even feel my disabilities. I felt like I could, and did, do anything and everything I wanted. For that entire week I was just "Rudy", and not the "disabled guy in a red scooter". I felt completely at ease with my surroundings and my body, not once feeling the least bit disabled. I felt at home, part of a family.

Friends, that sentiment explains why this cruise activity is so important, so critical, for the well-being and vitality of us prisoners of multiple sclerosis.  I rolled up onto the Oasis of the Seas an individual with multiple sclerosis.  Quickly, I found myself part of a community.  By the time I disembarked the ship on March 12, 2017, I felt part of a close knit family.  I discovered my bubble had not disappeared.  It still was within me, only dormant, waiting for the opportunity to flourish again.  I found it!

If I were to sum up the cruise in one word, I would have to quote Barney Stinson, character on the CBS romantic comedy sitcom How I Met Your Mother (google it),  “It was LEGEN….. wait for it….DARY.  LEGENDARY!”

My speech from the 2016 MS Evening of Hope.

Good evening

Who here is angry at multiple sclerosis for what it has taken away from you? Who here is angry at multiple sclerosis for what it has taken away from your partner? I sure am.   Multiple sclerosis has taken things from me practically my whole life. My father had multiple sclerosis as well as three of my aunts.  I’d like to share with you a few of the ways multiple sclerosis impacted and is still impacting my life.

For those of you who don't know me, or don't remember, my name is Rudy Yanuck. I am a 49-year-old retired pathologist, the 2010 Gateway Area Chapter’s Father of the Year, a U.S. Navy veteran, and a 22 year survivor of multiple sclerosis.  

I am angry at multiple sclerosis for taking away my destiny, My dream of becoming an orthopedic surgeon. I am angry at multiple sclerosis for taking away my ability to run, then gradually over time, my ability to walk, and my balance. I am angry at multiple sclerosis for forcing me into early disability retirement at age 45, sooner than I had anticipated.

 I am angry at multiple sclerosis for taking away my ability to do the common household tasks and minor household repairs I used to do, such as cutting the grass, vacuuming, shoveling snow, and even opening string cheese packets.  Pretty much the only things that multiple sclerosis has not taken from me are my kids and my hair.

   

Who here is grateful for multiple sclerosis? I know you're saying grateful for multiple sclerosis? How can anyone be grateful for such a debilitating disease? Being grateful is having hope, you know, the thing with feathers.

I am grateful for multiple sclerosis for the gifts multiple sclerosis has given me, aside from the obvious, great parking and never standing in line at amusement parks.

I am grateful for multiple sclerosis that it’s just multiple sclerosis. This chronic disease, as debilitating as it can be at times, will not take my life, though it can make it miserable as hell.  To quote Richard Cohen, CBS producer, husband of Meredith Vieira formerly of the View and the Today show,  and fellow MS survivor, ”A troubled life is better than no life at all.”

I am grateful that multiple sclerosis took away my chosen career, my destiny. MS has given me the gift of time, time to be at home with my family. If it weren’t for MS, I would have been a slave to the hospital and my job.

Thanks to multiple sclerosis, I have spent every night in my own bed since the summer of 1994. As a result, I am a proud father, living the dream that most fathers, most parents, wish they could live. I am a full time at home dad getting to spend 24 hours a day, seven days a week raising my five children.

I am grateful to multiple sclerosis for the family, friends, and the multitude of strangers that have offered help when I do one of my frequent “gravity checks”.

I am grateful to have had a father with multiple sclerosis who showed me that life does not end with the diagnosis.  One can have a fruitful, joyous, long life in spite of multiple sclerosis.

This is by no means a complete list.

My friends, Nothing is ever all good or all bad. Even with multiple sclerosis, one has the ability to find bright spots, hope, things for which to be thankful and grateful.

I challenge you. Tonight or tomorrow or sometime this week, write a list. Actually, write two lists. For the first list, write down what you are angry at multiple sclerosis for what it has taken from you. For the second list, write down what you are grateful for thanks to multiple sclerosis.  Email me your grateful list if you wish. I will use these lists (anonymously of course) in my blog to show others that even with MS one can be grateful and find hope.

People, let’s face it. Multiple sclerosis has given each of us a heaping pile of steaming… lemons. To borrow a saying from Joe Salacki, fellow Gateway Area Chapter member and MS survivor, “it is what it is. It becomes what you make of it”. Friends, let’s take those lemons and make something better than lemonade. Let’s make chocolate milkshakes. Keep hope alive.

Readers I issue the same challenge to you as I did to the Evening of Hope. Write two lists. Send me your grateful list if you wish and I will post them.

rryanuck@gmail.com 

Having Fun repost

June 29 and 30th was Summer Splash 2016. I look forward to Summer Splash all year long.  In honor of this event I am reposting Having Fun. Thank you Missouri Disabled Water Ski Association and Vito Lucido for a fabulous time.

“Hit it!” I yelled.  A split second later, the boat engine revved, yanking me and my partially submerged water ski from its resting position, tip of the ski extending from the water towards the sky, to an upright, horizontal position.  I began gliding and cutting back and forth atop the wake of water created by the speeding boat.

I’ve been attending the annual disabled water ski event at Creve Coeur Lake for well over a decade. I look forward to these outings all year. It is a rare chance for me to feel ”normal”, or at least as close to normal as I remember normal feeling, if at least only for a few hours. The endorphin rush I get as I glide, balance, steer, and even sometimes jump across the water, wind in my face, water spraying over me, is much like the feelings I used to get while playing competitive sports, snow skiing, or performing music.  Even the “wipeouts”, though sometimes mildly uncomfortable, can be exhilarating.

This year’s event on Saturday, August 2, 2014, was my best ski outing to date.  I jumped the wake several times.  One time, I caught big air, but couldn’t stick the landing, resulting in a tail over tip somersault with a huge burst of water spray.  The next time I caught big air, I stuck the landing!  Only this time, the hard “thunk” of the ski returning to the water knocked my grip on the rope’s handle loose, and I coasted to a halt, then sank.

To individuals with a disability, water is the great equalizer.  Its buoyancy, which counterbalances gravity, diminishes its effects, and allows me to move my extremities more easily. In water, I feel free from my MS riddled prison of a body.   I find myself able to walk, run, and jump. Activities I have not been able to do on land for almost 20 years.  Although other water activities provide an opportunity for this feeling of freedom, they are nowhere near as fun as riding a ski atop the water at 20-25 mph.

New skiers and volunteers attend dry land training the day before the ski event.  Here, volunteers are trained, and athletes are water tested to ensure they can keep from drowning.  Basically, making sure they can at least turn their face towards the sky, keeping their mouth out of the water.  They are also taught to ski.  While the ‘newbie’s’ are oriented and trained, a few of us veteran skiers get the opportunity for more time on the water skiing by serving as “crash test dummies” for the new in-boat volunteers.  

My friend and fellow MS survivor, Pat, and her husband, Phil, drove 2 hours from Columbia, MO, to participate in waterskiing for the first time.  While I was on the lake skiing, being a “dummy”, they were on the beach getting trained and oriented.  Later that evening, Pat told Phil, in a glum somewhat defeated voice, reminiscent of Winnie-the-pooh’s friend Eeyore, “I don't think I’m going to ski tomorrow.”

The next day, after seeing the huge smiles on the faces of the skiers coming back from the water, she decided, with some trepidation, to ski.  After taking four laps around the lake, she returned to shore, hair still dry, with the biggest smile of anyone there, and exclaimed, “This is the best run event for the disabled I've ever been to. It's like walking into a big warm fuzzy hug.”

Post redacted

This post has been removed.

MS Evening of HOPE 2015 from Saint Louis Story Stitchers

MS Evening of HOPE

from Saint Louis Story Stitchers

The video is online here: https://vimeo.com/150216330

Talk I gave at Grace Church and Toastmasters storytelling in December 2015

"One's destination is never a place, but a new way of seeing things."  - Henry Miller -     The late American writer

Where is one’s destination? Where is mine? Where is yours? The answer to these questions is simple. It is not a discussion needed to be had by great minds, great philosophers, great theologians. It does not require a great amount of pontification. The answer is simply “here and now“.

My name is Rudy Yanuck. I am a 48 year old retired pathologist, the 2010 Gateway Area  Chapter of the National Multiple Sclerosis Society’s Father of the Year, and a 21 year survivor of multiple sclerosis. Though my life with MS is full of opportunities to live in the here and now, MS presents challenges each day.   My family shares these struggles with me.  I know it is not easy for them and I am truly grateful.

So many people, myself included, focus their time and energy searching for, agonizing over, what their destiny in the future may hold. Where they feel they should be in five, 10, 15 years.  They fret over what could be, should be, might be, hope to be.  They forget about what is, the NOW. They forget to appreciate, cherish, love what is right HERE in front of them. The NOW.  Or worse yet, they only focus on the bad, and forget about the good. I wish I could say I've always lived in the here and now, but it wouldn't be true.Today I’d like to share with you some of those moments.

In the spring of my surgery internship at the Naval Hospital San Diego, in 1994, I felt as though I was on top of the world. Life could not get any better.  About to finish the professionally most challenging, physically taxing year of which over twenty years later I am still most proud, followed by three years of flight surgery, then orthopedic surgery residency and career as an orthopod.  This was my destiny!  

Then one day, “Lieutenant, tomorrow at O-800 you WILL report to staff sick call.  You WILL obtain your medical record and you WILL report to the ophthalmology clinic.  You have an O-830 appointment with the neuro-ophthalmologist.  You WILL receive an MRI.” the Chief of the Department of Urology, sternly ordered me.  Immediately, I stiffened in fear.  

I wasn’t to concerned about the ophthalmology appointment.  I had been evaluated by The neuro-ophthalmologist two months previously as part of my flight surgery application.  I had been selected and would not have had the orders in hand to report for flight surgery training that summer had I had not passed the eye exam.  It was the MRI I feared.  That test had the potential to discover, uncover, reveal, ruin… and save me.  

During my internship I was generally referred to as doctor.  So when a captain referred to me as lieutenant, I knew the only reply was “Yes Sir”.

From July 1, 1993 to July 1, 1994 I did a basic surgery internship at the Naval Hospital in San Diego. Early in July 1993 on my trauma service rotation, I began having some difficulties with touch sensation.  Feeling pulses in order to get blood for an arterial blood gas measurement was difficult for me, sometimes impossible.  It became the running joke of one of the staff surgeons.  At times I felt the tears wanting to erupt but I refused to show my true emotions, laughing along with him.

As the year progressed, I started noticing other difficulties.  I had more trouble than most with fine, and even some gross motor tasks.  As the rest of my team would glide rapidly down the staircases, their feet seemingly not even making contact, I would be left slogging behind.  On call nights when I stayed overnight in the hospital and was awakened, summoned to assess a patient, I found it difficult to begin the long trek from my call room to the patient wards, spending the first 20 yards or so bouncing off the walls for balance.  One day I asked a fellow surgery intern if he was tired.  He emphatically replied “HECK YEAH I’M TIRED!  I’VE BEEN UP FOR THE LAST 36 HOURS!”  So I tried to convince myself that it was just a hazard of the job.  But deep down I knew there was something more.

I had been a surgical intern on the urology service for the month of April 1994.  The interns rotated Fridays,  performing minor surgeries with the department chairman.  The previous Friday was my turn.  Apparently he had noticed something in my surgical technique that caused him enough concern to lead to our Monday morning meeting in his office, and warrant a mandatory ophthalmologic evaluation and MRI.

At the appointment, The neuro-ophthalmologist performed essentially the same exam he had performed two months previously.  This time he asked more directed questions focusing on my peripheral vision.  He was looking for signs of bitemporal hemianopsia, the classic symptoms of a pituitary Adenoma. A brain tumor that affects peripheral vision.  Untreated it could cause blindness, endocrine disturbances, and potentially death.  

My responses to all of his questions where “No”.  “Your exam is unchanged from the last time I examined you.  I don’t see a justification for an MRI.”  “Whew.” I thought, finally releasing the breath I was holding.  “Well”, he said, “actually I do. If the captain wants an MRI, the captain gets an MRI.

The month of May, I spent assigned to the pediatric surgery service at a private hospital in San Diego.  As an unlicensed physician, as most interns are, I had a very limited role in actual patient care at this hospital for liability reasons.   I primarily observed, not being allowed to write notes and orders in patient charts, cover inpatient call, not even allowed to “scrub in” on surgeries.  The relaxed pace was sometimes boring but a welcome reprieve from the frenetic pace of the rest of the year.   

Preoccupation over my upcoming MRI towards the end of the month blurred my memory of that rotation.   One event does, however, stand out.  I had been informed of a little boy who had received a gastric tube for feeding because of a congenital abnormality.  He was having difficulty breathing due to indigestion and bloating.  Later that evening, the father called me with the same complaints.  As instructed, I told him to “burp” the tube and go to the emergency room if his difficulties continued.  I went to bed.  

Early the next morning, around three am, the father called me back to inform me his son was dead.  I froze in panic.  “My God, what do I say?  What do I do?” I thought.  I had never been in a situation like this.  Medical school only prepared me to take care of the living, never teaching how to deal with this inevitable scenario.  

Previously, I had been a part of a team in these kind of situations.  The more experienced attending physicians handled this stuff and I stayed in the background with the rest of the surgical entourage.  This time I was alone having to talk with an acutely grieving parent. I expressed my condolences for his loss.  I hung up the phone with the unsettling feeling that I handled it all terribly wrong.  Eight months later, when my daughter died at 4 dAys old, I would learn that there was nothing I could have said to ease his pain, but to have said nothing would have been inexcusable.

The morning of Thursday, May 26 I went to the radiology clinic for my MRI.  The machine looked like all the other CT scanners and MRI scanners I had seen previously.    But this time, I was the patient lying on the table whose head the unseen magnets would rotate.

I lay supine on the table.  A cage was placed over my head.  I imagined I looked like a hockey goalie or baseball catcher.  The table slid into the scanner,  automatically positioning my head in the narrow opening.  “!-!-!” went the scanner, then silence.  Suddenly a loud “gnweuew”, followed by “dupt-dupt-dupt-dupt-dupt-dupt-dupt-dupt, blop-blop-blop-blop-blop-blop-blop-blop, doof-doof-doof-doof-doof-doof-doof-doof, rat-tat-tat-tat tat-tat-tat-tat.  The sound would have been deafening had it not been for the headphones placed over my ears.  Then silence.  A few seconds later  it started again.  This pattern continued for the next two hours.

The following afternoon I called the radiology department to get the results.  I spoke to the neuroradiology resident who was reluctant to discuss the preliminary results.  Radiologists generally don’t discuss results with patients, only doctors.  Dilemma, I was both.  He nervously stressed the results were only preliminary, not yet reviewed by his attending radiologist, not yet finalized.   he then delivered his preliminary findings, which were word for word of the eventual finalized report,with a shaky voice,not out of nervousness and insecurity in his interpretation, but out of concern for what his interpretation meant to the person on the other end of the phone line, me.  

I listened, hung up the phone, and steadily, with heart pounding, throat closing, and eyes welling, walked to the men’s room.  Once the latch clicked behind me, I collapsed to the floor against the corner, in a heap of wails and sobs.  I wept like I never wept before, and only thrice since.

My pituitary gland was fine.  The test uncovered severe bilateral demyelination of my periventricular white matter, ultimately resulting in a diagnosis of multiple sclerosis.  Just like that, my professional hopes and dreams, my destiny, vanished.  The Navy forced me into a field of medicine I had  never  enjoyed, never considered, and in fact, had felt not really a true clinical specialty, pathology.

I did my pathology residency at the University of California, Irvine, a prestigious program, with some prestigious names in the field of pathology.  I could not see that then.  I was too busy mourning the loss of what could’ve been, should’ve been. I was too busy being angry at multiple sclerosis for what it had taken from me professionally. I was too busy fighting accepting what was there in front of me, the here and now.  I did not see nor  appreciate the opportunities being given me.I wanted my destiny back!  

Anger prevented me from accepting the what is and fully engaging myself in my training. Had I done so, it would not have taken me the many attempts to pass the pathology specialty boards as it did. Life would’ve been so much easier for me and my family had I embraced the opportunities.

Following my residency, I did hematopathology fellowship training at the Armed Forces Institute of Pathology  in Washington DC, a very prestigious program, with many prestigious names in the field of pathology. It was during this training when I began to accept my destiny, embracing the here and now.  I started seeing it in a new way. Interestingly I began to enjoy my job, finding it less difficult than it had been. I began having fun.

After a 20 year career in pathology, my multiple sclerosis had progressed to the point even the low physical demands were becoming physically taxing.  After a three year battle to save my job, I took a forced federal disability retirement. Again, I failed to see the opportunities presented. I did not embrace my new destiny. Once I finally did, I began to enjoy my new life. I began having fun.

Today - my here and now - I am a full time at home dad to five kids, ages 4- 21, spending my days with my children and working on taking care of  my health. These are the moments I cherish. Life could not get any better.  THANK YOU

Almost Famous

“Guitar player wanted,” read the ad in The Harrisburg Patriot News classified section in early spring of 1985.  I had recently been kicked out of the band I was in after the one and only concert we played, an assembly at my high school in Mechanicsburg, PA, which I booked.  Suffering from mono at the time, no warning, discussion nor common courtesy was extended.  They just dropped off my guitar equipment after the show and that was it.  Determined to continue with my passion for the guitar, I searched for another outlet.  

Rick Ream answered when I called the number in the ad.  Rick, six years my senior, lived in the neighborhood adjoining mine.  He told me he and Bret Sychak had left their previous “cover” band, The Spectors, and were putting together a band that would only perform original material.  They intended to use the next six months to “get tight” then move to Los Angeles.  He asked my plans.

“College,” I replied.  I obviously was on a different trajectory.  After all, an education was in my near future and they had aspirations of becoming “starving artists”… or so I thought.

A few months later, Rick and Bret were at the high school passing out pink paper flyers containing four individuals photos, each occupying a quarter of the page, of Rikki Rockett, Bret Michaels, Bobby Dall, and Matt Smith.  The flyers announced that their band “Paris” would be the performers for that evening’s high school dance, although heavy metal is not really danceable music.

After school, the cafeteria was abuzz with students waiting for their buses to take them home, while “Paris roadies” fought the outbound current of kids, like salmon heading to their spawning grounds, bringing platforms, drums, amplifiers, and guitars into the cafeteria.  Rikki and Bobby entered confidently.  Rikki looked much the same as I had always known him to look.  Bobby strolled in looking nothing like I remembered.  

When we had met years earlier, he looked much like an MBA grad student with a preppy button down shirt, slacks, and a short cropped haircut.This day he wore a leather jacket, t-shirt, and torn jeans with long flowing locks of dark hair extending to his low back, the prototypical “bad boy of rock” look.

A few minutes later Bret sauntered in with the same look as Bobby, his usual style, with an air of what I interpreted at the time to be arrogance, but what I now see as calm self assuredness. Matt Smith, the guitar player whom I had never met before, frantically entered, almost on the brink of a nervous breakdown.  While loading his equipment for transport, he had dropped his Marshall 50 watt amplifier head, shattering its tubes that provide the patented Marshall sound.  Without them, the amp would not work.  He had neither the time nor the money to replace them on such short notice.

I had a Marshall 100 amplifier head that I  offered him for the show.  Back at my house, I strapped on my Kramer Voyager Imperial with Floyd Rose Locking Tremolo, my favorite “ax”, slang for guitar, to give him a quick tour of the amp head.  I started playing a riff that I had made up some weeks earlier.  Matt excitedly slung on the strap of my Les Paul Standard, another of my axes, and excitedly exclaimed, “Cool lick.”  “Teach it to me,” he requested.  So I did.

The fall of my sophomore year at Dickinson College in 1986 as I strolled through the bookstore, an album cover on an end cap caught my eye, stopping me in my tracks.  “No fucking way.” I murmured to myself in disbelief.  The album cover was almost exactly the same as the flyers being passed out years earlier, only the name of the band had changed and C. C. Deville’s picture sat in the quarter of the cover that used to be occupied by Matt’s in the flyer.

I purchased the album and went straight to my dorm room, placed the record on the turntable and the title track began.  “NO FUCKING WAY!” I screamed within the first four beats.  There it was.  My riff.  The title song.  I was floored and in shock.

No one believed me.  At least not until, while at home for break,  I went down to the basement where I had my “studio”, a portion of the basement my dad and I had “finished” years before.  I intended to learn the other songs on the album.  After all, I already knew the title track.  The first song began.  Within four measures, the basement door flew open.  My mom stood at the top of the stairs shouting, “Rudy, They’re playing your song!”