Jamison Hill: Medical/Homecare Fund
My name is Mary de Rosas and I am Jamison Hill’s godmother. My husband Paul Peterhans and I are asking for your help to raise money for Jamison, who is gravely ill with Myalgic Encephalomyelitis. This is his story.
Imagine being 21 years old, prepared to graduate from college, pursuing your passion, being pumped about life and all the possibilities ahead of you. Suddenly, in an instant, you are literally felled by an illness that doctors don’t understand or in some cases don’t even believe exists. An illness for which there is no real effective treatment. This illness makes it impossible to get out of bed or even have a conversation. You don’t look sick. You struggle to support yourself and find yourself more and more lonely and isolated as your friends move on with their lives because they can. But you can’t. You are in bed for a week because you went to your cousin’s wedding. Or it hurts so much to talk that you are reduced to barely whispering a single word a day or using improvised sign language and letter boards to communicate your basic needs. Your family struggles to care for you while quickly depleting all their financial and emotional resources. This is Myalgic Encephalomyelitis (ME), more commonly referred to as Chronic Fatigue Syndrome. This is Jamison’s life.
Jamison, who is 27 years old, full of wry humor, tenderness, and a passion for fitness and bodybuilding, fell ill with ME in November 2010. What began as a really bad case of mononucleosis in his senior year of college at Sonoma State developed into ME. After countless visits to doctors he found a specialist who diagnosed ME in June 2011. Since that time Jamison has valiantly attempted to maintain his health, independence, and good humor. He graduated and was able for a time to live independently in Santa Cruz, doing freelance writing to support himself. But his daily activities were severely curtailed by his illness-no movies with friends, no more weightlifting, no more beach walks, and limited time with people. Any single one of these activities depleted his energy enough to send him to bed for days. In November 2014 Jamison moved from Santa Cruz, California to live with his mom, Kathleen O’Halloran, in Tuolumne, California, in the Sierra Nevada foothills, because he was no longer able to care for himself without help. Christmas Day 2014 he attempted and failed to make it down the stairs in their home to celebrate with the family, but did find some humor in it at the top of the stairs with his mom. (See photo).
Since January 2015 Jamison’s condition has worsened dramatically-he has been completely bedridden and unable to care for himself in any way. All day he lies in a darkened bedroom, unable to tolerate light or sound, able to make only the smallest movements of his body, unable to speak, eating only pureed foods through a straw, and fighting despair and loneliness. He receives the most superb and loving care from his mom, Kathleen; his dad, Matt Hill; his sister, Claire Hill; loving part-time caregivers; and amazing family members and friends. But he needs more help.
We are raising money to pay for medical treatment that is not covered by insurance and to pay for caregiving costs. Conventional medicine offers no treatment, so Jamison is scheduled to receive care at the Open Medicine Institute (OMI) in Mountain View, California in October 2015. OMI is a specialty medical clinic dedicated to clinical care and research of ME, immune dysfunction, autism, and other unusual, poorly defined diseases. Open Medicine Institute does not accept insurance. We must raise the money for his treatment and to pay for caregivers. Jamison and his family have exhausted their financial resources caring for him. A link to more information about the Open Medicine Clinic is below.
ME is a devastating illness, with features that seem particularly cruel to the many young people it strikes. ME often surfaces at a time in a person’s life normally spent with friends, being social and open to life and all its adventures. ME is an illness of extreme isolation. Its sufferers experience acute sensory overload-a normal conversation can require the energy of a 5 mile run. They cannot tolerate even low levels of ordinary light and sound. Even laughing is exhausting. Looking at a computer or a smart phone with its bright, backlit screen is unthinkable. Speaking hurts the throat, and muscles all over the body ache. The home around the ill person must remain quiet so a group of friends coming to visit have to whisper. And most doctors offer no hope-leaving people like Jamison wondering if the world has completely forgotten them.
We know there are many deserving causes seeking to raise money through this wonderful site. If Jamison’s story touches your heart please give whatever you can to help pay his medical and caregiving bills and send the message to Jamison that he isn’t forgotten. Thank you! Thank you! Thank you!
Links to more information:
Trailer for a new documentary about ME, which features Jamison: http://www.forgottenplague.com/
Link to an article about another young man suffering from ME similarly to Jamison: http://www.whitneydafoe.com/news/index.html
Another helpful, informative link: http://scopeblog.stanford.edu/category/chronic-disease/.
A YouTube video on Whitney and others demonstrating graphically the impact of this disease (just under 12 minutes in length): https://www.youtube.com/watch?t=348&v=9_HwOUiImvw
Open Medicine Institute: http://www.openmedicineinstitute.org/the-clinic.html.
I have really good news. Jamison is improving in significant ways that have made a huge impact in his quality of life. He is eating some solid food, sitting up at a 45 degree angle, speaking sentences and tolerating more light. And he has a lot to say about all this because he started a blog, which can be found here: https://jamisonwrites.com.
Please check it out and subscribe! The dude hasn't lost his sense of humor-if anything, the illness has sharpened the blade of his wit. It's a rare view into the world of this lonely illness-profound, funny, sad, and provocative.
While this post is not really meant to solicit funds donations are still very much needed and appreciated. Insurance does not cover a huge chunk of the costs of care so Jamison could still use our help. Thank you again-and happy reading!
It’s 1:28 in the morning. Leaving now will get me to the gym by two and done with my workout before the sun comes up. After grabbing a pre-workout supplement—a proprietary blend of unregulated amphetamine-like substances—water jug, and gym bag, I walk out to the car. My phone now says it’s 1:30.
The drive to the gym is reflective but uneasy. The last thing I want is to be in a car right now, and watching bad drivers makes the feeling worse. The car in front of me keeps swerving, almost rhythmically, as if the driver is still partially in control and coherent, but distracted. Maybe he’s trying to connect an auxiliary cord or something dumb like that. I don’t think much of it, only your typical cynicism laced with mild concern: Look at this idiot. He’s going to lose control, bounce off the median, and smash through the windshield while taking out five other cars, and killing everyone in a bloody, broken-glass-everywhere, fiery mess.
Similar flashes, stirred by an often-antagonistic voice in my head, have been popping up more frequently. Last week on the Richmond Bridge I saw my car careen over the railing and into the Bay. Right as I was taking a last gulp of air, trapped in the corner of my capsized car, a voice brought me back to a reality of taillights. This voice I often hear is my own, and not schizophrenic, but it is definitely more honest and abrasive than any side I outwardly show, and it is perhaps even irrational at times. I won’t pretend to know what it means—maybe it’s a byproduct of feeling helpless in a situation I can’t control, maybe it’s the voice of the older brother I never had, maybe it’s underlying guilt for the car accident, or maybe I just don’t want to know.
There is no doubt I am a little messed up right now—okay, I am really messed up right now—but it would be weird not to go a little mad after killing someone. There are common, not even necessarily healthy ways of coping, and then there is my way of coping. Turning in after a night surrounded by family would make sense for some people, but not the mad ones. Venting to friends at a bar would be most appropriate by the standards of my peers, but not the mad ones. I, on the other hand, am going to the gym because, well, I am one of the mad ones.
Who the hell works out in the middle of the night? Oh, the mad ones, right? Come on, you don’t even like Kerouac.
There is nobody at the front desk when I walk in, so I pull out my wallet and mockingly flash my membership card to the overtly happy cardboard employee. I then return the card to its place in my wallet, which happens to be next to the laminated hospital bracelet I saved after the car accident. I wore it for a week, then folded it in my wallet for safe keeping until I find a better place for it.
Next I routinely whisk my way to the gym floor. It is empty and illuminated, humming with electricity—the same as it will be in a few hours when the early birds arrive.
There is something, perhaps many things, to love about an empty gym. There is peace, comfort, and an almost unexplainable feeling of privilege just to be there, like standing in an empty stadium, or witnessing the calm of the ocean after a storm. For me, it conjures a rare, personal, and oddly emotive causatum, like finding nostalgia in a single light on a dark landscape, or crying while watching a comedy.
In this single moment in time, it feels as though this is where I am supposed to be, this is where my coping, my healing, and all my other inner processes are meant to happen, and for good reason. There is no body to ask about the best protein powder to buy, or how much creatine to take; there is just a few thousand pounds of iron and a couple rows of human versions of hamster wheels. I am lucky. A 24-hour gym is almost never empty. Even at this hour, there is usually some rebellious teen taking selfies on the recumbent bike, or an old guy air drumming as he walks on the treadmill. Believe it or not, these are my people. They never bother me, but are instead exceptionally comforting to share a space with.
They are your people, really? Of course, that’s because they barely exist to you, they are less than strangers; they are inanimate, like a bookshelf. You just want them to serve their purpose, and stay out of your way. It makes sense; then they can’t hurt you. They won’t, by some freak twist of fate, almost end you. Well, congratulations, that’s one way to go; you are now a walking, breathing, miserable and bitter misanthrope.
In the locker room I change into an old sleeveless T-shirt. My phone now shows 1:58. After a swig of water I pop in an untangled ear bud, then the other, as a mellow Jack Johnson song fades in and my thoughts fade out.
I charge the weight rack as if it just called me some derogatory name, or told me I can’t do something…or stopped its car in the middle of the highway and just sat there waiting to end your life, or maybe it was just in the wrong place at the wrong time.
Grabbing two sixty-pound dumbbells, I do presses, then repeat with eighties, ninety-fives, hundreds, and finally finish the last set with one-tens. Next is a circuit of dumbbell flies, cable presses, and plyometric push-ups.
Then I do this thing most people wouldn’t even call an exercise—except it is, everything is. It’s basically a handstand against the wall followed by an inverted push-up. It works the shoulder muscles, but is mainly meant to show off to all the people in the gym, which at three in the morning is no one.
The last hour of the workout is the toughest. It starts with two forty-five-pound plates. Getting them on my back without a spotter is difficult, but I shimmy both behind my back and wiggle them into position. I get ten reps before falling to the blue plastic mat. It is sticky, so sticky. Removing the plates from my back is futile at this point, so they stay put until the next set.
Sprawled out with ninety pounds pinning me to the mat, my mouth about an inch from a Petri dish of at least a dozen people’s sweat. I look up, and the clock shows it’s 4:48.
There is no place I’d rather be.
In the time I've been sick, especially the last year bed bound, I've come to realize nothing about this disease makes the faintest amount of sense. There are many people that don't think it's real, or don't understand it, and I don't blame them. Well, sometimes I do, but I would've felt the same prior to getting sick. There is, however, something about walking around one day and being too weak to lift a pen the next that makes one realize this is very real.
It is a paradoxical disease filled with many smaller paradoxes. Here I am on a rectangular mattress in a rectangular room within a square house, a year into my stay in bed--unable to speak complete sentences, chew food or sit up on my own. It's completely dark and I'm wearing pink tanning goggles (yes, pink) and thick earplugs yet I'm somehow able to write this on my own. I can also listen to podcasts and whisper words on the phone. Through a straw I can taste lobster ravioli with pesto. I can still hug and kiss, and sometimes when I'm mad, I can throw stuff across the room.
None and I mean NONE of this makes sense, especially how a small victory like reaching for something beside my bed is usually followed by a horrible crash. I am in a dark room yet through tanning goggles I can type these words on my phone. I can't explain this or why I can roll on my side but can't lift my head off the pillow. Nor does it make sense that I can audibly cough and sneeze but can't talk above a whisper. I can't explain why I'm able to swallow pills but not food or how come I can be stuck with a needle but being touched is at times too painful. Still, within these paradoxes lies gifts of reprieve from my suffering and that is what keeps me going.
I'm grateful for the little luxuries and most of all I'm grateful for the support and love I've received through the ME community. Seldom have I seen such swift dividends fall my way. Your contributions have given me a great doctor with a solid plan and so far it's working.
For the last several years I've been writing a memoir (yeah, yeah, I know, who hasn't been writing a memoir) and just finished but I need help getting it published. If anyone has a literary contact please email me at email@example.com. It's surely for my own ego but more so to bring awareness. The book starts with a bodybuilder and ends with a severely ill man in bed. It's sad but hopeful and filled all my depth. You can find an excerpt in the next update.
Dear Mary, I am a PWME helping to organize the San Francisco #millionsmissingME/CFS protest May 25 to demand more Federal research funding for this disease. We are asking ppl who are too ill to attend if they would like to be represented by sending us a picture which we will display. So far, 20 ppl from the Bay Area have sent pictures. Can you ask Jamison if he would like to be represented? It is so important for us to let the world know how horrible and debilitating this "invisible" disease is. All the best to you and your family., Jane