Jamison provides an introduction to and an excerpt from his 200 page plus book, “Not Like the Whiskey” chronicling his 6 year struggle with ME/CFSIntroduction
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.
Curious? You can find an excerpt below.
Excerpt From “Not Like the Whiskey”
I finish a sip of water, pinching the straw with my index finger and thumb. I look at my mom and chuckle.
“Are you sure you don’t want a joint?” she asks jokingly. We both laugh at the ridiculousness of the situation as she returns the water glass to my bedside table.
The situation is truly ridiculous. This glass, for instance, is the closest I’ve come to running water since I last got out of bed. It’s been weeks since I’ve had a shower. Yesterday, desperate, I tried and failed miserably at getting to the bathroom for a shower.
The plan was to have my mom push me across the floor on a snowboard until I reached the bathtub. But when the time came my body gave out. I laboriously sat up and slid off the bed onto the snowboard, but as my mom pushed me curled up in the fetal position, I only got sicker. I eventually retreated back to bed, still unbathed, where I have remained mostly motionless for the last thirty hours.
The recovery has been brutal, even cataclysmic. The first twelve hours after my snowboard excursion were the worst. It appeared that death was still near and waiting. My body filled with an intense sickness, weakness and inflammation so profound it seemed the only logical thing to come was death. I can’t imagine feeling any worse, but I know if my mom had kept pushing the board, I would have. Still, I can’t help but laugh at the thought of a tiny five foot-nothing woman pushing a hundred and sixty pound bag of meat and bones on a snowboard.
Want to read more? Check out the original blog post and more of the book here at Health Rising: http://www.healthrising.org/forums/threads/jamison-hill-from-bodybuilder-to-bedbound-the-book.4573/
As you know, I love to provide patient perspectives at DD, and not just my own. Jamison Hill was an athelete before being struck down with ME/CFS and has written a book about his struggles. You can read more about it below. in his own words.
If you’re a person suffering from a neuro-immune disease and would like to share your story, some aspect of your life, treatment or any experience in relation to your illness, consider writing a blog post for DD. You can contact menon twitter as @caplestrange. I’d love to hear from you!