Wednesday, April 10, 2019

Mind over matter - two years later

   I have always heard and read about the power of the mind.  I have been told since I was a child that you could do anything “if you put your mind to it.” I have read numerous books and articles about how people have essentially healed themselves or have improved their health with positive thinking – some talk of the “power of prayer” – and such brain-centered techniques as bio-feedback.  Isn’t this what happens, after all, when people “kick the habit” or go “cold turkey?”
   The fact that I’m writing this, now two years after my last posting, is proof of this power of the mind. 
   I’m seeing it most vividly now, two years after being diagnosed with osteomyelitis, a very rare viral disease that attacks the bones, and needing emergency spinal surgery on February 28, 2017, after two weeks of debilitating pain in my neck.  The surgery, although it relieved my extreme suffering and frankly saved my life, left me far more disabled, paralyzed from the chest down, with my right arm contracted and very limited use of my left arm, and needing 24/7 attendant care – in addition to requiring pretty much complete assistance with daily living activities, I’ve had to be turned every 2 hours because of a horrific bed sore I got while at Pomona Valley Hospital after the surgery and which is now at last pretty much gone – and needing a g-tube for liquids and medications, an internal catheter permanently and assistance with bowel movements.  It also left me with considerable neuropathic pain, with my feet and legs feeling like hot rubber or sometimes steel but otherwise with no feeling, even as they frequently spasm, sometimes quite painfully, and with the palm of my hands constantly tingling and feeling like they’re being shocked when touched (I can’t have my finger nails trimmed without my hands being iced).  I have come to the conclusion after much of this time that the pain is even worse than being paralyzed and not having sensation – other than pain! - over much of my body. 
   Actually, I saw it before now, when I gave up taking various heavy-duty pain medications, including Fentanyl and Tramadol. Yes, this left me in pain or more pain, but I chose to deal with the pain and be more alert and alive. I now take only Gabapentin and, most effectively, cbd oil for pain. I have also given up on seeing new doctors, even pain doctors, in an effort to get answers to what has happened to my body and how to deal with it, as they only want to give me more drugs and really, I’ve realized, don’t know the answers.  The best explanation I’ve gotten, as blunt and hurtful as it was, is that my spine was damaged, injured, during the surgery, as necessary as it was, saving my life. 
   I have made steady progress in the last two years.  After being in a nursing home for four months after the surgery – the last thing I ever wanted but not as bad as it could have been, as I discovered when I stayed in another nursing home for a few days after another hospitalization last summer – I came home to a hospital bed equipped with an air mattress in my living room and a reclining manual wheelchair.  Outings, even to the backyard, were very much the exception and continued to be so after a physical therapist, with my urging, got me into my power wheelchair. As big of a step as this was, and even with pillows propping me up in the chair and other modifications, I still needed much assistance in going out, even if I was able to be left alone at a theater, and I needed to be home in time to lie down for a couple hours.  I did go on longer outings, such as to Los Angeles, and also on trips to the Bay Area and other destinations, but these involved much planning and preparation, not unexpectedly, and, more notably, were marathon, almost heroic, efforts. 
   Fast forward to now.  Yes, fast, for things have progressed in the last few weeks or month.  The best advice I’ve gotten was from a doctor who I had in the first nursing home and who I didn’t like.  He told me I can do whatever I want – it all depends on how I deal with the pain.  If you put your mind to it.  Last week, I suddenly began staying up in my chair all day, and I have been going out on my own, venturing further each day.  The other day, I came home from a concert at Pomona College on my own, and I went on my own to the Village, downtown, the next day.  Earlier, I had an attendant drop me off in the Village, and I tooled around for an hour, with the distinct and powerful feeling of being back from the dead.  Last year, I told my therapists at Casa Colina Hospital, who have done wonderful work with me, that I wanted to be able to go to the Village on my own.  I have reached this goal. 
   And I’ve reached it overnight, so it seems.  It is like I woke up last week and decided not to be a patient, not to be convalescing, anymore, realizing that I also have pain when I lay down and that I rather be up in my chair, able to do things and go places.  It is like everyone said that I couldn’t do so much, that my activity was now severely limited (even as they encouraged and pushed me to do more, making me feel guilty), and I believed it, bought into it.  It was, I see now, easier that way. 
   It helped that I recently got a new chair, which is far better and safer for me, with a custom-molded back, a better-located joystick and a better cushion and harness and with improvements continuing to be made.  It also helped that it is getting warmer – with the neuropathy, I’m now hyper-sensitive to cold and, to a lesser extent, heat, and I often have hot and cold “flashes.”
   But I think what really happened is that, although there are still moments when I’m stunned at what has happened to my body, when I can’t believe I can’t turn pages or turn the light on and think my life is Hell, I got sick of being sick.  I got tired of lying in bed and doing nothing.  I realized that I didn’t have to. I have no reason to. 
   I’m not sure how much I can do, how far I can go.  When I go out, going a bit farther than the time before, and I turn back to go home, I wonder why I’m not going farther.  For months, I have told friends that, when I’m able to, I wouldn’t go farther than the Village.  I probably won’t go much farther than the Village, but who knows? 
·         * *
   I have thought about and wanted to resume posting for a long time, but, again, I believed that I couldn’t, told myself that I couldn’t.  I am thrilled that I’m writing this, but I do have wariness. It is my hope to post one or two times a month – not as much as before and likely not as long as this – but I’m not making any promises.  I don’t want pressure, to feel I have to post, but I do want to post – perhaps more, perhaps less at times – and am happy to be doing so. 


  1. John,

    This post is incredibly moving. Thank you for being who you are and for sharing yourself and your wisdom with the world.

    Congratulations on making it this far, and I know you will keep going, surprising all of us, even yourself, along the way.

    Much love,

  2. John, Aurora and I are so glad to hear positive news from you. She asked me to wish you all the best from her.

  3. This is an amazing witness to life! YOu've been to hell and back and now are managing it all with great bravery and strength and smarts! Thank you for tell all of it. I wince and cringe and then I am cheering and so happy for you. John Calvi

  4. John, I think you read reality as it is. What seems impossible, Mind does.

    And yes, it is good that you post. Because you *have* to post. And because what you write is true.

    Philip from Quaker Meeting

  5. I write , therefore I am, one of my favorite t-shirts you use to wear, as a former attendant. I am so excited for your new courage and awareness. I have so much admiration for your journey as I think you are the most loving and beautiful people I know. Love, Daryl

  6. Wow. What a powerful posting. I always learn so much from you, John. You are truly an inspiration to everyone you cross paths with... I adore you and I especially adore your MIND!