Sunday, February 27, 2011

Spotlight On The Amazing John Horton


I was introduced to John by my friend Betsy who was spotlighted  in this October post. Betsy takes great pride in her friendships; she celebrates their accomplishments and sympathizes with their hardships as if it were her own. When she initially suggested that I contact John to be a spotlight on my blog, it was clear how much respect she had for him. As I've gotten to know him myself, I understand that respect now more than ever. He is a profoundly strong, yet humble person, and his story is one that just  makes me want to be better. When I received his answers, I was blown away by his thoughtfulness and I feel privileged that he let us all into his life to this extent. From a "touch and go" period in the ICU following an organ transplant to his newest graduate school endeavors, John's spotlight will take you on an incredible journey. He also shares with us some crucial lessons he's learned - not least of all that "love can save you." Following his answers is John's original poem inspired by his experience with chronic illness. Enjoy...

What is the year you were first diagnosed?

I was diagnosed at the age of two, with Caroli's disease and polycystic kidney disease. It was 1978, and the prognosis was grim. Caroli's causes a deformation of the bile ducts; the bile will pool and become infected. This is what would be the end of most patients severely affected by Caroli's in the 70’s and 80’s. The doctor who diagnosed me told my mother that if I lived to be three, they would attempt a bypass of the liver. At that time the doctors believed that liver transplantation would never be possible.


What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?

This depends…My chronic illness can have little to no effect on those it afflicts while others, like me, it affects very strongly and can cause organ failure. For the purpose of this question, I am going to assume that this person has been told they will need an organ transplant, as I was.

Now, let’s pretend that person is you.

I would tell you to find doctors you respect and appreciate, doctors you can work with and trust; to be knowledgeable about your illness and to be aware of your body. Your life will change, but is certainly not over, not even close. There are new medications all the time; the technology and precision of 




organ transplant is ever evolving.



I would look you in the eye and say to you, “Hope and patience are now the number one priority in life- not the one and two priorities- just the number one; patience requires hope  and hope requires patience. Anyone who cannot offer you both, is likely not a friend, relative or lover you will be close to when it is all over.”

I would tell you to build a support network of your closest friends and family. You will need 




them.



I would say to you, “You will have to change your life. I was a martial artist, a physical guy who played a ton of sports, did anything that was physical; exercise was a vital part of my life- that all changed. It had to change.” I would also tell you that I am back in the gym, more active than most people I know.

I would tell you of the quote that sustained me through so many days and nights when I was sad, or angry or frustrated, the words that soothed me when I felt powerless to affect my own destiny.

“Empty your mind, be formless, shapeless - like water. Now you put water into a cup, it becomes the cup, you put water into a bottle, it becomes the bottle, you put it in a teapot, it becomes the teapot. Now water can flow or water can crash. Be water, my friend.”
 – Bruce Lee

These words reminded me that I had to flex my life, that I could wrestle control from an invisible enemy. I was being forced to find things that weren’t physical, and that was ok. It was ok for me to change the activities I participated in, those activities weren’t me; activities  did not define me, and they do not define you. When it is over, you, like me, can change again, like a chameleon, like water, you can adapt to the new life you go out there and get. That is power, something I felt I had very little of. Find a quote, a song, a poem- anything that inspires you— and live it.

I would remind you that people love you. I would tell you that people live for your love and it would be folly to forget that. Believe that. Embrace that. A time will come when the only strand connecting you to the world is the very fact that people love you, that people out there live for your love.

And I would tell you that no matter how deep you go, no matter how dark the depths become, there is a way back, and you will make it there.

Please explain a bit about how your condition affects you.
 

It affects me in numerous ways, but before I start in on this let me say this: it is all worth it.  When people hear the impacts of transplant on the recipient’s life the first reaction is one of recoil; as a recipient of three transplants (the first liver blocked off a portal vein and died days after transplant) let me tell you: it is worth it. 

First, there is the medication that I take. Every day, twice a day, I take a  lot of medication.  The main medications function as an immunosuppressant.  They suppress the immune system so that the transplanted organs are not attacked by the immune system. This means that there is a constant risk of catching some flu or cold or whatever is going around. It means that if I do catch something it will hit me twice as hard and stay with me twice as long.   If I get an infection, or begin to run a fever, chances are I will be admitted to the hospital.  An infection in an immunosuppressed patient can become very serious, very quickly. Aside from that there is the fact that the medications themselves are toxic.  My latest struggle is with my teeth.   The anti-rejection meds cause the gums to recede, exposing parts of the  tooth that are vulnerable to decay.  Before I had the transplants I had great teeth and very few cavities.  The last time I went to the dentist I had 14 cavities.
     
I won’t do things like skiing or anything where there is a high risk of falling because my bones are weaker than they should be.  There is a vicious circle of medications: the meds cause osteoporosis: they give me more meds to help with the osteoporosis.  You ask what the hardest part to cope with is, and I can tell you what I cope with every day…but understand that none of these things are the hardest part.  Understand that, for me, there is no hardest part.  It is a trade off, and I welcome it.  I have a choice: live with the symptoms and complications of transplant, or fail to live.

What are 3 things you couldn't live without?

I could give you some usual answers here: my mother, the super-woman of my soul; my sister and savior, who gave me a kidney, a kidney that survived and helped me survive some horrible times; her wonderful husband, who is like a brother to me; my niece and nephew who, no matter what is going on in my life, never fail to brighten my eyes.  

However, I would also like to tell you a few personal things I cannot live without, things that are not about family or friends.  The first is my drive, from the youngest age I can recall not allowing my diseases to hold me back, to make me different, to force me to “live in a cage”.  I excel at the things I do because I never quite.  Few fears touch the quick of me, I have walked to hell and back; in comparison, most things pale.  To this day I hold myself to the expectations of any “normal, healthy” individual, and that has saved me.   I make no allowances for being “sick”. The second, is my ability to adapt, to change my life according to what my condition demands.  The third would be my medications; it is a love hate relationship.  They keep me alive and healthy; they are literally my life force. At the same time the meds are my enemy, they cause more problems, like the complications I described earlier.


What are you most proud of?

The man I have become. Which is odd to say, because a huge part of the man I have become is the illness; I would not be the same person without the life experiences of my illness, without growing up in the circumstances I did. I am proud that I can look at any man or woman and honestly tell myself I would prefer to be who I am.

I am also very proud to be in graduate school now, to have picked myself up off the ground and placed myself back in a place where I always knew I was headed.

Where do you get your strength?

I get my strength from so many places…or more accurately, people:  from my father, who passed away, I am given the strength to continue on, to become the man he knew I could be.  From my mother, I am given the strength of her heart, the drive to never give up, the inspiration to get up off the ground and welcome the next hurdle life has to throw at me.  There is a time I can remember, a time just after my second liver transplant, when I was very ill, in intensive care, and the situation was very touch and go.  I was on a ventilator and drugged out of my mind, but even in that hazy, drug induced, state there were moments of clarity and this is one that will always be fresh in my mind:  I opened my eyes and thought about how miserable I was, how the ventilator was tearing at my throat, how my abdomen ached and how my back throbbed.  How I had been fighting a literal war with my own body for over four years…and I was tired…so tired…I wanted to quite.  Then I turned my head and saw her: my mother, sitting at the bed side knitting.  I thought what would happen to her? She would be absolutely devastated if I gave up, if I went away for good.  What would happen to my sister, her husband and my niece and nephew?  I would never see my niece or nephew drive a car, go on their first dates or graduate from college.   What would happen to my Gramma, for whom I am the only remnants of my father?  This is what I meant earlier when I said it would be folly to forget that people love you, that people live for your love.  Love can save you.  Love saved me.  Love is where I get my strength.

If you could send one message to medical professionals around the world, what would it be? 

I could say more on this subject than I have during this whole time…I have stories about the way medical professionals, even the ones I trusted the most -held in highest regard- have treated me (and my family) that would blow your mind.  

What I will say is this:  I am not a number; I am not a file; I am not the guy you saw in your last appointment- we are different people; we lead different lives.  Although you walk into exam room after exam room, see patient after patient- you are the first doctor I have seen today- you are someone I place a sacred faith in; please, think before you violate that faith.

I would like to thank Maya; you are the dispenser of an intangible medication, a medication we all need but that no doctor or pharmacy can give.  I would also like to thank all the friends and family not mentioned above.  Each of you is a balm only you can give.

John. M. Horton



The Burial, Metamorphosis, and Resurrection
Of A Part of Myself


I have seen him in dreams, so many dreams. On so many falling eves, I have seen him, 
placing deep, deep away, in the cool dampness, so many fragments
of himself.

He buries these fragments away in darkness of oddly shaped boxes, randomly
accessed memories, and hand crafted burial ships, each with its own
copious amplitude.

What is ghostly and barely perceived
is that filling these vessels with parts of the man I have come to accept as myself
shapes a beauty, almost as exquisite as the very fact that these actions create
so many phylacteries, for those who have never seen in the selfsame way
I always have.


And although you have stumbled upon my form, on so many falling eves,
to find me restless, dreamless, asleep on my blade, a danger to no one and nothing
but myself,

 
I am aware of my purpose.

 
For you see, so often the something that creeps from the shower drain, from the shadowed 

places of my oddly shaped mind, is not the squirming, purple, centipede I have come to expect but a peek of wing tip and the soft reveal of butterflies, flittering, landing on lips and the back 
of an out held hand.



                         
Mariposa 

                                                         
 Mariposa

In starlit dreams and non-dreams, your spirit rises, soothes me, when I wake 
beneath  the light of a clear moon, to the breeze of your image smoothing the sheets, 
a lace-white gown flowing over your form…

and my face appears in your eyes, more bovine and liquid than I ever intended,
or wished you to perceive.


John M. Horton
Thank you so much John...

Love,
Maya


  

Thursday, February 24, 2011

Introducing Zoo Borns...The Ultimate "Feel Good" Find




Today, I just wanted to share some "feel good" things because...well... who doesn't like to feel good?


First and perhaps most importantly, I've recently discovered my all-time favorite websiteZooBorns.com!! This site is devoted entirely to announcing the birth and development of baby animals in zoos around the world. As the Seattle Post Intelligencer wrote, "ZooBorns pulls off the difficult task of being cute and interesting for people of all ages while also being informative." It has become a daily treat for me and, if you're also an animal lover, I suggest you bookmark it. There's an amazing update nearly every day.
The second and third thing I want to share also relates to ZooBorns ( I sort of have a one track mind when it comes to baby animals). First is a short video of two tiger cubs and their loving mama at the Pittsburgh Zoo. What really gets me here is the way the mother clearly adores her cubs and cleans them so thoroughly. The other video is of a baby elephant playing during bath time at the Houston Zoo! I dare you not to smile while watching this...enjoy!
[Note: If you can't see the full videos below within the parameters of this blog, just double click the videos themselves and they'll expand to fit your whole screen.]


Sticking with this "feel good" theme, Chronicbabe.com's latest blog carnival is LIVE and the topic is Show Me The Love - a collection of posts "about the love of friends, family, spouses and lovers." This carnival offers a variety of voices that all "show us the power of love that can come from the most unexpected places to change and heal us in powerful ways (and some of the posts show what happens when love goes away). The carnival also includes my February 17th post about my amazing brother.

Okay, and ONE last smile...(gosh, I hate hair days like this one)
Love,
Maya

Tuesday, February 22, 2011

Shades of Awareness Jewelry Giveaway!!!


I first heard about Shades of Awareness Jewelry last month when my friends (Olivia and Jenny) hosted a giveaway from this store on their blog, Lovely At Your Side. Shades of Awareness Jewelry was developed by Michelle Miller-Anderson: a wife, a mother, a talented artist, and a Lyme disease patient (among many other things). When I read about the concept behind her business - to help patients take pride in their medical struggles and to raise awareness for various illnesses - I thought it was brilliant! I immediately set my sights on the Arthritis Awareness bracelet...not only because I have Arthritis, but because I love the deep blue color of the beads (a color that stands for many others diagnoses in addition to arthritis).

After swooning over her work, I got in touch with Michelle herself and asked if she'd be interested in participating in another giveaway for my readers. She was excited about it! Thus, I present to you...


SHADES  OF  
AWARENESS GIVEAWAY!


* You could win a bracelet of your choice!*

Even if you don't live with chronic illness, a bracelet would go a long way in showing your support for a sick friend or family member. This giveaway will end on March 15th (3 weeks from today) and, on that day, all entries will be plugged into a randomizer to select the winner - the only 100% fair method I have. The news gets better: each participant has an opportunity to enter this giveaway three times!

For Entry #1:
1) Simply head on over to Shades of Awareness Jewelry on Etsy.com and take a look around the shop. Then leave a comment on this post answering one or more of these three questions: 
A) What is your favorite item on the site and why? 
B) What would you do with the prize if you were to win?
C) Why do you like the idea for Shades of Awareness?

For Entry #2:
1) Head over to Facebook and "like" Shades of Awareness on Facebook or, if you don't have Facebook, "Follow" the Shades of Awareness Blog. Don't forget to comment on this blog entry and tell me that you've done this!

For a 3rd and Final Entry:
Take a look around Loving With Chronic Illness and leave a comment on this post, answering one or both of these questions:
A) What has been your favorite post on Loving With Chronic Illness and why?
B) What would you like to see more or less of on Loving With Chronic Illness? (any advice you might have to better this blog would be fantastic)


 
And here is a little more about Michelle, the strong woman behind this fabulous store....


1) How did you develop the idea for Shades of Awareness Jewelry? 
I was diagnosed with Chronic Lyme in July 2010, at age 34. I had been sick for over 3 years, lost my job, and became depressed. When I finally knew what was wrong with me, I wanted a bracelet to wear. I thought that somehow it would make me feel better, like look at me, I know what's wrong with me...FINALLY! When I didn't find any that I really liked, I figured I would make myself one. That's when 'Shades of Awareness' was born. My goal is to let people know that they are not alone!


2) What has been the best or most fulfilled aspect of owning this business?
The most fulfilling part of 'Shades of Awareness' is knowing that I can make a difference, even if it's a small one.

3) What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general? 
 I would tell someone who was diagnosed with Chronic Lyme that you need a support group, it is very easy to become overwhelmed and depressed. You need to connect with others with Lyme, even if just to compare notes...it makes you feel better and lets you know what to expect.


4) Please explain a bit how your condition affects you. 
Chronic Lyme never goes away, I have good days and bad days. When I'm good, I feel perfectly fine and when I have a flare up I am in constant pain. It seems to affect my shoulders, arms, and hands the most. My muscles burn and feel heavy. I get physically exhausted very easily, and there are days I want to spend the day in bed. My immune system is low, so the average cold makes my symptoms come back. It's a vicious circle. I think the hardest thing to deal with is the pain, because you can't get away from it.

5) What are 3 things you couldn't live without? 
My children, coffee, and the internet!

6) Where do you get your strength?
I get my strength from my children and from my hubby - he's my rock!

7) If you could send one message to medical professionals around the world, what would it be? 
If I could send a message to the medical community it would be to pay attention and listen to your patients, understand that the patients know their symptoms better than a textbook. Lyme Disease hides.

Let's get those entries rolling, everyone, and I will post the winner on March 15th. Finally, I want to send a huge thank you to Michelle; please keep up your important work!

Love,
Maya

Thursday, February 17, 2011

Standing Tall, With My Brother Beside Me

Maya the Bee & Josh the BLT sandwich, Halloween 1990



rowing up, my brother and I had the normal sibling issues. Josh is four years older than me, so I was beyond fascinated by him and his much bigger, much cooler friends. I, on the other hand, was the  nosey "little sis. "While our age difference prevented us from being on the same page, I always knew he was there for me. I received my fair share of noogies, but there were also definite perks to having my big brother. He showed me the ways of the world; he made me laugh like no other and taught me what was and wasn't cool (I'm still not quite sure I have this down, though). I looked up to him because - when push came to shove - Josh was always there. He was my protector and I knew it.

I've posted this poem before; it's a piece based on a true story and, in my eyes, says it all:


Stepping on a Nest with my Brother
in Lovell, Maine: Summer of ‘91


It just takes one bee 
to remind me of your heel 
punched through 
that pregnant nest, 
the petite army filing out 
until the air looked 
just like rain falling 
upwards. I remember
all of it: the wing-buzz 
on my earlobe, my fat knees
made fatter with venom 
and your Velcro sandals 
breaded in the angry things. 
I’ve said it was the spice 
of the stingers I remember
most when really
it’s the piggybacked topple 
into Lake Kezar, the tallying 
our wounds, licking them
like postage. Even now, 
years later I remember you 
this way: some odd superhero, 
cape of hornets blazing behind.



It seemed that almost as soon as Josh turned 18 and left for college, he became my buddy - a phenomenon that isn't unique to us Klaubers. Joni Mitchell said it best... "Don't it always seem to go that you don't know what you got til it's gone?" We've been building a pretty incredible friendship ever since and I think it's safe to say it's come to a pinnacle lately.

When Josh and I were hanging out a few weeks ago, he reminded me that, when I was in the midst of my worst flare last fall, I mentioned my desire for a tattoo. My idea was to get the words "Stand Tall" printed on my back - "Stand Tall" being the slogan of the Spondylitis Association of America. Having survived that period in my life, I could look to those words when I needed help remembering my own strength. Deep down, however, I knew it wasn't an option for me. Since I've been on TNF Blockers since age 16, even the smallest things such as hang nails or cold sores, can snowball into raging infections over night. So I wasn't about to take my chances on an unknown tattoo parlor. Josh stored this idea away and decided to surprise me by getting the tattoo FOR me - news that left me totally speechless!

After much consideration, he's thinking of getting this font (the only one my mom, his wife Erica, and I all agreed upon):


The more I think about it, the more this gesture means to me. Over the past year, Josh has been there for me in ways that are hard to describe. More than ever, he's been that "superhero" I mentioned in my poem, always sending messages of support and offering to help in any way possible. Most notably, I remember one night last fall when my pain was completely out of control. It was around 2am and there was no way I could sleep; even the strongest painkillers weren't working and I was felt completely lost. I signed online and immediately got a message from Josh asking why I was still up - a kind of brotherly sixth sense, perhaps. I explained my pain to him and there he stayed, just listening and sending me all kinds of fun websites. We talked until I finally felt sleepy. I will never forget that night because - really - it's an anecdote that represents our entire relationship. When push comes to shove, Josh is always there.
Even if he were to change his mind about getting this tattoo, the thought alone has already meant the world to me. I'm pretty sure I've got the best brother out there. 

We're planning on heading to a Brooklyn tattoo parlor together in the next couple of weeks, so stay tuned for an update and feel free to leave comments for Josh!


Love,
Maya