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
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.”
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 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,
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
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
Posts
