Scuba diving may be good for spinal cord injury patients, both physically and psychologically.

JOHNS HOPKINS (US) — Military veterans with spinal cord injuries who took a short scuba-diving course experienced significant physical and psychological improvement, researchers say.

Scuba aids mind, body of paralyzed vets.

Quilts, by Jim

While recovering at Shepherd Center, it was no surprise that I received few visits from friends and family.  No, it was not because I had lost my legendary charisma and benevolent personality.  Quite simply, Sweetie and I were separated by over 600 miles of geography from our nearest and dearest.  This became a mixed blessing in that, although we missed home like an amputated limb, we were able to focus our combined efforts into therapy, recovery and training on how to be a fine upstanding quadriplegic and caregiver couple in America.  This also made the smattering of visits all the more precious.

While still a patient in the hospital annex of the center, our dear friend, Sweet Melissa, visited us and presented me with a gift like no other.  It was a quilt she had crafted by hand and tailored especially for me. This Steelers themed masterpiece holds the distinct honor of my most cherished possession.  The very thought of the skill, labor and love that went into each stitch humbles me and stands as a constant reminder of the pure goodness of which people are capable.  I certainly rely on my phone, van, computer and kickass chair to keep me rolling through each day, but when the lights go out and the house is silent and Sweetie and the dogs have fallen asleep upstairs, it’s just me and my quilt. 

One might consider a quilt to be a rather impractical gift for a friend recovering in a hospital in Atlanta in July.  So not true.  One of the many perks to being a quadriplegic, in addition to the outstanding parking and women fawning over you, is a quirky phenomenon which alters your internal thermostat.  In my case, I feel chilled more often than not regardless of the outside temperature.  I place this in the “perk” column because, given the choice, I would much rather throw on a couple of layers of clothing than to be eternally hot with no hope of escape. I will most likely endure enough of that in the afterlife.  At any rate, the quilt is always available to provide me comfort and warmth and it has covered me each night since Sweet Mellissa proudly delivered it.

Although most nights are restful and uneventful, the quilt and I have certainly seen our share of tribulations.  Through high fevers, violent spasms, chronic pain, intense chills, garish nightmares and seemingly endless sleepless nights, the quilt has bared witness to my curses and my prayers.  It has also been my silent companion during the peaceful hours I am afforded to think and reflect while the rest of the house is still. 

All manner of thoughts occupy my mind as the clock ticks its endless cadence.   I ponder both my accomplishments and my shortcomings. I concoct optimistic plans for both the near and distant future. I create elaborate and fanciful tales to entertain my idle mind.  Often my musings focus on the reflection and dissection of the events of the past year. How is it possible that the most tragic 365 days of my life have coincided with my greatest period of enlightenment?  What bizarre cosmic paradox allows me to emerge a broken man and yet, at the same time, a better man?  I owe it all to my quilt.

Each facet of my life, from my system of beliefs to my proclivity toward Skoal Wintergreen Long-cut, comprises a patch in my quilt.  Some squares are vast and prominently featured while others are mere swatches and rarely seen. The biggies, such as my faith, family, friends, and health, are on display for the world to see while distant memories, secret thoughts, and things that have not yet been revealed even to me, lie in it’s darkened folds.  This elaborate tapestry protects me as I travel through this life.

When a portion of my quilt is torn or a section is completely ripped away, I feel the stinging cold of the world upon my naked body.   These times seem unbearable as waves of helpless desperation consume me.  But because of my past experiences, I am comforted by the knowledge that this condition won’t last.  A quilt is an amazing entity. It has the ability to fold unto itself thus covering any holes in the fabric and carrying on its purpose of keeping me safe and warm.

I have also come to the realization that my quilt is much larger than I could ever have imagined and it continues to grow. When we think of the people in our lives, we tend to focus on the main players whom we see often, but it is the supporting cast and behind the scenes people that make the show, or in this case the quilt, possible. If the credits of my life were to be rolled right now, the list would be impressively long. I continuously thank God for this vast network for I owe so much of my success to them.

The quilt must always be taken care of and never taken for granted.   For all of its durability, it is a fragile thing and must be treated gently and mended when needed. Take care of your quilt and it will take care of you, some Boy Scout once said.

2nd Annual Jim Kleyle Golf Tournament

Announcing the 2nd Annual Jim Kleyle Golf Tournament to take place on Monday, August 8, 2011 at Potomac Ridge in Waldorf, MD.

For more information, click here.

The Facebook announcement and invitation.

April 7th, 2010, by Karen

I came home from work just like any other day.

I knew that Jim would be working later than usual because his grades were due and he was helping out with the spring musical at school.

I was feeling antsy so I called up our friend and neighbor, Cindy, to go for a walk.

I couldn’t shake this feeling of foreboding and agitation.

Where was this coming from? I thought.

I finished my vigorous walk around the neighborhood with Cindy and cobbled together some kind of light dinner for myself.

Still suspecting nothing even though Jim wasn’t home yet.

The land line startled me with its ringing.

My heart skipped a beat.

Something told me to stop what I was doing and answer the phone! (and we always let the land line go, relying upon our cell phones anymore)

Is this the wife of James Kleyle?

Yes.

Your husband broke his neck.

What.

This is Dr. So-and-So, I am a surgeon at Baltimore Shock Trauma.  Your husband was in a car accident and he has broken his neck.  And then there was some medical jargon about where his neck was broken (things that I now understand but didn’t then) and that they needed to do surgery and required my consent.  Then he explained all of the legal stuff to me such as “you do understand that there is a risk that your husband could die on the operating table.  Do we have your permission to perform this surgery?”

Yes, I croak, at this point going into the shock which I would remain in, and would save me from the enormity of what I was about to do later in the evening.

When the surgeon was about to give me directions, my brother walked in the door, thank God.  I rattled off to him what was happening and handed him the phone. At this point speaking English and hearing English became far away and foreign to me.

Here!  Find out how to get there while I call Mom and Dad and Cindy, I barked.

I am in the car with Cindy and my brother who is driving us.  And my parents are also on their way in their car.

We arrive at the R. Adams Cowley Shock Trauma Center in Baltimore and go to the reception desk which is being held down by some tough looking chicks who mean business.

By now this eerie, surreal calm has come over me and will serve me well in this place of gloom and doom where the only reason visitors are there is to learn about and/or see their critically injured loved ones. In fact every single time I visited Shock Trauma the heavy hearts of close family and friends hung in the air as thick as black tar molasses. That kind of human stress energy was palpable.

Each person swimming in their own living hell.

Anyway.  At this point my brother charges forward and asks the very busy ladies at the desk, where we can see or find out about patient, James Kleyle. One of the women does not respond well to my brother and she becomes agitated with his curtness.  An argument ensues between them and at this point there is another stressed out family standing near us awaiting information about their loved one, too.

Suddenly, I wave a hand over them while calmly stating, “Some people react differently to stressful situations, so could we start over and please, if you could – and we know that you are very busy – but we would like to find out about a patient who was MedEvaced here, James Kleyle.  I am his wife.”

I don’t know where in the hell that came from but again, shock can be a wonderful thing to help one get through.

The woman’s face softened and she even smiled a bit.  The family standing near us softened, too and the man nodded toward me in quiet understanding.

Let me find out where he is and when you can see him.  She immediately picks up the phone and listens intently.

The surgeon is going to come down to speak with you momentarily.

The surgeon, in blue scrubs to include the scrunchy hair cover thing (which meant:  he was prepping to perform delicate surgery on my husband), approached me because everyone else respectfully stood a step or two behind me.

Let’s go in here.

We were quickly ushered into a shoebox sized, nondescript room which afforded a family privacy to hear any devastating and complicated medical news that a surgeon would need to deliver. (The Cry Box or Breakdown Box, I thought)

I recall the surgeon having sharp features but I can’t remember his name nor would I recognize his face if I ever laid eyes on him again.  This was the initial surgery to stabilize Jim’s fractured neck.  There would be another major surgery to further shore up his neck the next day.  This surgery would be done by the head of neurosurgery at the R Adams Cowley Shock Trauma Center in Baltimore.  That factoid did little to comfort me at the moment because I was about to hear the gravest of news.

Your husband could be paralyzed from the neck down and quite possibly require a ventilator for breathing. He may have said something encouraging after that but I don’t know what that was.  I do recall that he was very kind and not cold at all. He also encouraged questions but we’d been given enough information and I wanted him operating on my husband.

Again with the serene calm.  I know that you will do your best for my husband and I appreciate everything that you are doing and about to do.  Whatever the outcome, we will deal with it.  Jim will still be Jim no matter what.

I saw the surgeon flinch a little at that. I’d like to think that he may have thought I was in shock or delusional.  I was in shock but I meant it.

And then I did something completely unexpected.

Do you accept hugs?

And I hugged this stranger who was going to fix my husband’s neck.

And then we waited into the night for what seemed like eons. Everyone else got things to eat but all I could muster was a soda.

I do not recall if the surgeon came to get us or if we pressed the ladies who worked at the reception desk.  All I remember is riding up the elevator to Neurotrauma Critical Care 4.

There he was lying there so fragile and helpless.  He was attached to all of these tubes and monitors which took up his entire room.  The room was not designed to be attractive nor cozy but to stabilize the patient and afford the nurses, doctors, and respiratory therapists easy access to that patient who was centrally located within the room.

The sight of all of this overwhelmed my parents and our dear friend Cindy and they each broke down into tears and had to step back.

Not me.  Through the continued serene calm (of shock) I not only addressed my husband (who was lying there with his eyes closed), but I kissed him and told him that I loved him.  And then I proceeded to comfort each and every one of them.

It’s going to be OK, I soothed.

The Spinal Post

CHECK THIS OUT:

This is a great informational/newsy blog about spinal cord injuries and people living with paralysis – from articles about young quads living in nursing homes to why cheerleading has become such a dangerous sport, rendering participants quadriplegic, etc.

It was started and maintained by a quadriplegic.  And without further ado, I give you:

THE SPINAL POST

Relections on a Looming Anniversary, by Karen

As we’ve come full circle at almost one year since Jim’s accident, I find myself becoming very reflective.  I’ve been sifting and reading through an old journal which represents to me, another life ago.  I feel as if we’ve transcended one life to another one – successfully – right here in this earthly life.  Funny, I thought that phenomenon only occurred when going from living to dying. I suppose we all go through various transcendences throughout our lives that run the gamut from the seasons changing and how it affects us to experiencing a catastrophic life changing event like we did. We also simultaneously experienced the decline of someone so close, dear, and full of vitality that all of it – and I do mean all of it – doesn’t seem real. Sometimes it seems like it all happened so long ago.  There are various reasons for each experience on why I feel that way.

Did all of that really happen?

There has been a lot of forward movement, folks but just not at warp speed or when we want it to occur but together we’ve helped the momentum by our gumption; what we’ve learned, and continue to learn.  I’ve often laughed that I feel like Dr. House, M.D. and his medical team diagnosing the new interworkings of a human body with a spinal cord injury because I’ve gotten to know my husband’s body like my own and living with it for the first year is so new; like we charted waters that oftentimes would go from glassy calm to tidal waves until at long last we reached a stretch of dry land.  So long as we remain proactive and vigilant, we should remain there unless and until, we choose to take a dip into another body of water!

Giving up Facebook for Lent was something I thought would be very difficult because it became a way for me to update the larger audience of friends and family on our progress with our new life and Jim’s improvement.  I’m also nosy by nature and I liked catching up with people and their day-to-day stuff and stuff that makes them tick to include photos, too!  What I am finding though is that this time of “giving something up” especially something I’ve not only grown fond of but addicted to, has proven to be rather easy to do.  It’s perfect timing that since we’re coming upon one year since Jim’s accident that I don’t have any of the extraneous “noise” of the news feed to jumble this extremely important time for my psyche.

All of the unpredictable changes that occur leading up to and during Spring represent this reflection.  I keep listening out for this birdsong from a yet-to-arrive species that I recall when Jim was in Shock Trauma last Spring.  It was so mournful a song. I keep listening out for it because it may be a different tune to me this year.

Life Now, Love Now: A Valentine’s Day Update, by Karen

Rated G, I promise

I usually set my alarm for approximately 4 hours – usually about 3:30 AM – from when I transfer Jim into bed, undress him, inspect his skin, give him a kiss, do his bladder program (and bowel program if it happens to be the night for that); we talk a little bit and joke around during the whole routine often poking fun of little things that occur – like his legs spasming by all the movement from the transfer (his body still reacts even if he can’t feel) “So Jim, you doing the ol’ soft shoe?” or “are you done with your Irish jig yet?” and we giggle like little kids at the “dance” his legs are performing at the moment.  Then we usually get the dogs to come up and snuggle and I kiss him some more and then eventually, I position him on his side — “ready for the big heave-ho?!”  “I’m ready.”  — by padding him down with pillows and foam pads, and finally, getting him snug as a bug underneath the blankets.  We like to ensure his shoulders are covered lest he get – and give me — a cold shoulder later .

Before I dash upstairs to my – our — lonesome and vast king-sized bed, I always kiss him once more and we tell each other we love each other.  The room we have downstairs – our former office — isn’t big enough for the both of us to sleep and maneuver around in. Our next goal is to save enough to do further renovations to our home so that we can once again share a room and a bed, amongst other tweaks to the house, to ensure Jim can more easily maneuver and gain further access – particularly the kitchen –  thus securing him more independence.

It is not unusual for me to drop off into a deep sleep upon my head hitting the pillow – and last night was no exception — but when the alarm goes off in the wee hours of the night/morning, I get up and can do the choreography of the middle-of-the night routine in my sleep (literally!).

After lifting the covers to check and drain his pee bag and toss the contents of the urinal into the toilet and then rinsing it out, I further lift the covers just enough so that I can gain access to his whole body but keep his upper body warm and toasty because he’s in a dead sleep, too, I turn and reposition him from his side to his back, and “re-pad him down”.  When it comes to the turning and pulling of the draw sheet under him to smoothly flatten and center him on the bed while saving the strain on my shoulders and back, he usually awakens a bit from this movement.  He always wants the head of the bed raised (he is in a hospital bed) because it is more comfortable on his cervical (neck) region which isn’t as ramrod straight as ours due to his Ankylosing Spondylitis.  I always check to see “is that good?” and get a sleepy nod or “a little more”. And after ensuring that he is positioned just right and either snug under the blanket or wanting an arm or two left out (the left arm has tricep function so he can more easily move that one around the way he wants but the right arm sometimes requires my assistance in repositioning for comfort).

All of the aforementioned middle-of-the-night routine was the same last night as any normal night except he blinked open his sparkling eyes and said with a smile, “You’re my Valentime!”.  To which I responded, “I am your Valentime!”.  Yes, we on purpose mispronounce it as if we are little kids. After I got him snug under the covers and asked him if he was comfortable, he said – “I am, thank you very much.” in his always-grateful tone.  Feeling warm and satisfied with this nightly caregiving ritual, I switch off the light and turn into the darkness to make my way back upstairs when I hear:

“I love you very much.”

I turn back and in a clear, warm voice respond:

“I love you very much.”

 

Karen’s 2010 Year in Review

1. What did you do in 2010 that you’d never done before?

1. Taken a private Lear jet (I know, this sounds glamorous except that it was an ICU in the sky for Jim from Baltimore Shock Trauma to Shepherd Center in Atlanta)

2. Uprooted us for 4 months to live in a different city and state for the purpose of learning and healing (for my husband and for myself)

3. Learned how to care for my husband who is quadriplegic

4.  Save my husband’s life – 3 times since we’ve been home — by using my knowledge and skills by recognizing signs and symptoms and taking action (myself) or getting him to the ER ASAP

5.  Educate medical professionals, airline staff, family, and friends on the special needs and concerns of someone who has a spinal cord injury/living with quadriplegia.

6.  Been in counseling

7.  Become more mechanical and an even better trouble shooter

8.  Been with someone I love dearly when they died.

9.  Hired a personal care attendant for my husband.  She has become an integral part of our medical team and family unit.

2. Did you keep your new year’s resolutions, and will you make more for next year?

I don’t do New Year’s resolutions except that I did achieve one goal right before, and while on Family Medical Leave, and that was I changed careers within the organization I work for.

Get my Associates Degree (once and for all!) which I was slated to get in 2010 until life took a turn…

3. Did anyone close to you give birth?

No.

4. Did anyone close to you die?

Yes, two loved ones near and dear to me.

5. What countries did you visit?

None.

6. What would you like to have in 2011 that you lacked in 2010?

Sleep.  Spend less time in hospitals, nursing facilities, and hospice.  NO MORE DEATH AND CATASTROPIC LIFE CHANGES PLEASE-AND-THANK YOU! Taking leave for an actual “break” or vacation that is not Family Medical Leave (FML – ha!) or Bereavement Leave.

7. What dates from 2010 will remain etched upon your memory, and why?

4/7/10 – The date of Jim’s accident when I received a phone call telling me that my husband was in an accident and had broken his neck.

4/30/10 – The day we flew from Baltimore to Atlanta for Jim’s extensive rehabilitation

8/11/10 – The day we came home to Maryland after being gone for 4 months

10/15/10 – My Mother-in-Law died

12/22/10 – Jim’s Uncle Gary died

8. What was your biggest achievement of the year?

Changing jobs and switching careers mid-year while on Family Medical Leave/Intermittent Working status while in Atlanta.  I went from working in a corporate legal environment into more directly supporting the organization’s social mission.  I now work with 3 different teams – Livable Communities, Housing & Mobility Options, and Driver Safety (which have all become my new personal passions!).

9. What was your biggest failure?

I’m not sure with everything I’ve been through and learned that I can claim failure.  I hold everything I do with high standards and I feel like I’m balancing and doing everything in the best way that I can which includes getting “me time” to stay happy and healthy.

10. Did you suffer illness or injury?

No.

11. What was the best thing you bought?

Hmmmm, this is interesting to answer and I’m not quite sure how to do so because a lot of what we bought in 2010 was out of necessity for our new life situation that we could not do without.  OK, I hate to admit it because it was the most unexciting vehicle purchase EVER but our accessible minivan.  Honestly, we couldn’t do without it and it makes me happy to know that we can go anywhere in it and we do not have to limit how long we drive because it is roomy enough for Jim to do his weight shifts in.  How’s that for glamorous?!

12. Where did most of your money go?

Durable Medical Equipment

Home modifications

A Lear jet ride (which I am appealing to the bitter end, United Health Care!)

Accessible Van

Uncovered medical expenses (mostly rehabilitative care)

Airline tickets (from Atlanta to Pittsburgh and back to Atlanta in the summer to be with Jim’s Mom and finally, from Atlanta back to Maryland)

Gas money to and from doctors, hospitals, and physical and occupational therapy

13. What did you get really excited about?

Going home (from Atlanta to Maryland)

Seeing my dogs after being away from them for 4 months (I cried with joy when they ran out of the house to greet us)

Going back to work – no, seriously – normalcy is great after being on FML for 5 months

14. What song will always remind you of 2010?

You Can’t Always Get What You Want – The Rolling Stones

15. Compared to this time last year, are you:

– happier or sadder?  Happier

– thinner or fatter?  Uh, well, the week after Jim’s accident I promptly lost 10 lbs. and let’s just say I’ve gained back that weight.  Emotional eating encompassed 2010.

– richer or poorer?  See #12 above

16. What do you wish you’d done more of?

Nothing.  You’re asking me to DO MORE?! I’ve done enough in 2010, thanks.  But seriously, a full body massage should have been done in 2010 but there’s always 2011.

Exercise.

17. What do you wish you’d done less of?

Been so hard on myself.  At first when I was learning how to care for Jim I took EVERY failure (which was hardly failing) to heart.

Eating/poor eating habits.

18. How did you spend Christmas?

With my dear family.

19. What was your favorite TV program?

There was TV in 2010? We were limited in what we could watch while in Atlanta but boy when we got home:  Californication and True Blood season catch-up time!  And then football season started so I could take all of my frustrations out on screaming at men trying to move a ball up and down the field – yay!

20. What were your favorite books of the year?

Um, there was no time for reading books but I did receive two books both of which I started and I WILL finish in 2011.

21. What was your favorite music from this year?

This year I’ve drawn from lyrics so no genre or type of music stands out for me this year.

A close friend has been continuing to make us soundtracks throughout our journey in our first year of living our “new normal”.

22. What were your favorite films of the year?

Again with the leisure time.  I usually fall asleep during movies – Jim?! What have we watched since we’ve been home? I know I’ve seen films that I’ve stayed awake for.  Damn you, memory.

23. What did you do on your birthday, and how old were you?

I turned 40 and considering everything I’d already been through the act of turning 40 was not traumatizing at all.  We went to the Maryland Renaissance Festival per usual and had a BLAST with dear, close friends.

24. What one thing would have made your year immeasurably more satisfying?

A vacation.

25. How would you describe your personal fashion concept in 2010?

Cargo pants and cargo shorts since it was more convenient for me to cease carrying a purse especially when living in Atlanta and booking it all over the hospital, apartment, and city streets.  All of those pockets held specific things in specific places.

26. What kept you sane?

My family.  My close friends. My therapists (both in Maryland and Atlanta). Church. One particular Occupational Therapist at Shepherd who really looked out for me, too even though she was essentially there to focus on Jim.  Well, I can say that about nearly all of the staff at Shepherd but this particular OT went above and beyond.  The staff at Shepherd is phenomenal!

27. Tell us a valuable life lesson you learned in 2010.

That all the little things that annoy you are just little things.  Really, they’re no big deal.  Don’t sweat the small stuff.  Although what I’ve found is that I can handle all this really major stuff and then I lose it on the small stuff sometimes.  And that’s OK.

That life is precious and you don’t know when someone you love could be taken from you.  Here one day, gone the next.  You never know.  Live each day, each moment like it’s yours or your loved one’s last.

That not only did my husband and I grieve for what happened to him but friends and family members did, too and they had to get used to seeing him in the chair and his limitations and learning about finding alternative ways to do things and the extra planning involved.  We both learned to be patient with everyone in that regard.

Also, not to have expectations of others – such as, when securing help, finding out what people are comfortable with doing and letting them do it because they want to help in their own way(s).

That it is important, now more than ever, for my mental and physical health to remain sound.

To enjoy my marriage and my husband even though I am his primary caregiver and spend hours upon hours each day caring for him.

To achieve and maintain balance in every aspect of my life which is in fact, a delicate balance for me as I care for my husband and make an effort to enjoy him and life.

To expect anything and be prepared for everything, even the unexpected.

That we – Jim and I – can do anything we set our hearts and minds to, it’s just done in a different way and takes more effort and planning.  Oftentimes, you cross one hurdle and it gets easier to accomplish.  Never fear the unknown.  “GO FORWARD”.

In closing, 2011, I have high hopes for you.  It’s going to be a good year.  I see  a lot more growth and opportunity ahead.

A Fragile Hope: 2010 in review

The stats helper monkeys at WordPress.com mulled over how this blog did in 2010, and here’s a high level summary of its overall blog health:

The Blog-Health-o-Meter™ reads Wow.

Crunchy numbers

A Boeing 747-400 passenger jet can hold 416 passengers. This blog was viewed about 2,900 times in 2010. That’s about 7 full 747s.

 

In 2010, there were 32 new posts, not bad for the first year! There were 33 pictures uploaded, taking up a total of 4mb. That’s about 3 pictures per month.

The busiest day of the year was July 11th with 147 views. The most popular post that day was A Bard’s Tale: “Straight from the Horse’s Mouth”, by Jim.

Where did they come from?

The top referring sites in 2010 were facebook.com, patchieverbs.blogspot.com, ntafund.org, mail.yahoo.com, and heatherbartlettart.com.

Some visitors came searching, mostly for jim kleyle, jim kleyle accident, a fragile hope, dave quadriplegic, and quadriplegic hand.

Attractions in 2010

These are the posts and pages that got the most views in 2010.

1

A Bard’s Tale: “Straight from the Horse’s Mouth”, by Jim July 2010
6 comments

2

About May 2010
2 comments

3

Guest Quad September 2010
4 comments

4

Caregiver vs. Wife, by Karen October 2010
4 comments

5

Pilgrimage August 2010
3 comments

2010 Gift Guide for People Living with Paralysis – Spinal Cord Injury – Paralysis Research Center

Just in time for the holidays…here’s your handy-dandy gift guide for the paras and quads you love, courtesy of the Reeve Foundation.

2010 Gift Guide for People Living with Paralysis – Spinal Cord Injury – Paralysis Research Center.