Lynne, your story is absolutely heartrending, told with such truth and honesty, that it stops us in our tracks.  We think we can feel your pain.  But we can only guess the immensity of it - the knowledge that it does not go away and will not.  To say we are there for you is not good enough … and yet, not knowing you, it is all we can give. 

I am more aware of chronic pain than some, watching a close friend try to smile when I arrive, knowing that this is not a "good" moment but perhaps, a flash of a better of the "bad" moments that have become her life.

Your book perhaps includes websites, but for those reading this, I have found that the American Chronic Pain Association (theacpa.com), paincare.org, and painfoundation.org to be helpful in — what should I say — well, understanding what you are going through more.  And for this and for other neurological disorders like Parkinson’s, Alzheimers, Autistic disorders, stroke, and more, I find that all of us might wish to take a free subscription to the wonderful magazine Neurology Now (www.neurologynow.com).  I find what I have learned from this excellent magazine, written for the layman, has proven helpful over and over.

Lynne, this interview and your book will touch all who read it … and you will find yourself with that invisible support group who are at one with you and who care.

At 4PM on 10/24/00 my life was completely changed— destroyed really as I previously knew it—when I was in traumatic brain injury accident and permanently damaged the #5 and #1 nerves…

People with the condition "are begging to be killed," said Kim Burchiel, M.D., professor and chairman of neurological surgery at the Oregon Health & Science University School of Medicine who sees several new TN cases a week. "I’m telling you, it’s total agony." 

The entire left side of my head feels as it did the moment it was struck, my left cheek and all around my left eye too, have persistent ear ringing and ‘cracked-glass’ vision in left eye, cognitive damage that persists, etc. I had memory loss and trouble just navigating in ‘normal life’ for over a year, i.e. going to the market and then not remembering what town I was in or why I was there. Being overwhelmed by too much stimuli and noise, etc. so that cannot process it.

Having always been health oriented I wasn’t about to start taking drugs…often they don’t work for this condition and I do not like drugs in the system. The best thing for me is a very healthy diet, and lots of outdoor fresh air and [no jarring] exercise. I rarely can sleep, and this was worsened after my brother’s death. I lost my career, and over $700K…I stopped counting at that amount.

But I went back to UCLA to complete the writing program/and a novel/ and was on my way to creating a new career when shattered my foot and required 6 months bed rest to heal, then my brother died and that was worse than all of it combined.

Still, I feel very fortunate.  I’m a live, I’ve still accomplished things am proud of, it’s all been very clarifying, and completely life changing. Am back to walking 7+ miles a day, and I have dreams am working on.

The most help I received was from Dr. Claudia Osborn’s own book "Over My Head" about her own head injury. She was a Grosse Point ER internist who also had a head injury that she tried to just shake off; then finally saw the complete impossibility in that. Reading her book was like reading my diary. I was saying the same things to myself. What is going on? Like her I had very complex, fast paced work I enjoyed and was extremely competent at many things. When you look ‘fine’ the biggest frustration is that everyone thinks you are ‘fine’ and no one cuts you a break. It took her 11 years to recreate her life…I feel have come a long way in a shorter time, so progress, and that I am very lucky to be alive. But if you were very competent before people in your life expect you to perform miracles. I’ve had neurologists tell me of their patients like one ‘high functioning corporate attorney. Slipped on the ice, hit his head, and has been in his pajamas for the last 7 years.’ So yes…I am very lucky.

Yesterday was walking all over the beach and the Asilomar Conference Center and out in beautiful nature, nature takes over and can forget everything. Nature’s my ‘drug of choice.’ 

Look forward to reading Lynne’s book. Thanks very much for this. 

As one who has pain every day, (and been through worse pains,) I am always amazed when I ask someone if they "carry pain" and they say "no," it is such a given with me. 

One injury I suffered was in a gym, at the peak of fitness, but I fell from a height and tore a ligament in my foot (I didn’t know it at the time.  I also smashed into steel equipment, but that seems small compared to what happened to my foot.)  After a long period of thinking it would heal, I sought a podiatrist (well known in our area,) and he took on every known treatment short of surgery.  The only surgery would be cutting the ligament, which is irreversible, and I didn’t want that.  He finally decided on an ultrasound surgery which was (then) considered still experimental; now used widely, and that did it, but for 2 1/2 years, I could only take two steps and have to stop.  I thought it would be my life, and it was heartbreaking.

Being knocked out of mainstream society taught me a lot of lessons in carrying pain and having compassion.  I have a childhood friend in a nursing home at a young age because of her problems, and what she has suffered is mind numbing, but she fights to keep her humanity and her spirit and her wits about her.  When I go to visit, we laugh and (without speaking it,) try to keep some sense of normality about the situation.  I can see the pain hit her face when she can no longer supress it. There is a certain nobility to those who do carry on with pain, because, trust me, it is all too easy to cave.

For those who know someone suffering, perhaps bedridden, but removed from their former life; I say go see them. Yes, you will see things, smell things and hear things that are unpleasant.  But what you can give back to your friend by your companionship is their humanity and unfiltered love between the two of you.

I would recommend reading "The Body in Pain: The Making and Unmaking of the World," by Elaine Scarry.  It is a meditation on the vunerability of the human body, and she draws on an array of resources in her analysis.  A serious work, but well worth the effort.

Many of us have our own stories about chronic pain and I’m not without mine. In the beginning it’s a highly personal thing - as if it no one else in the world  could POSSIBLY feel this badly. Over time most of us come to realize that we don’t have the patent on pain and begin to deal with it.

The following were things that helped me most  [after finding a doctor whom I had confidence in]:

1. Finding forums with other people with the same condition,

2. Living my life "as if" I was just fine; pushing myself to get involved with the outside world so I didn’t isolate myself,

3. Being proactive in my treatment decisions, and

4. Visiting a kids’ cancer ward

I realize that pain is relative to the person having it. But [and don’t shoot me for writing this!]  pain is a perception. It doesn’t mean that pain is not real, but rather than YOUR PRECONCEIVED NOTIONS OF HOW PAIN SHOULD FEEL WILL IMPACT THE DEGREE AND INTENSITY OF YOUR EXPERIENCE WITH PAIN.  If you think stubbing your big toe on a curb is the worst possible pain in the world, for you it WILL be.

Number 4 above taught me very quickly that my pain was nothing compared to what those kids were experiencing.

Have any of you heard of or read a book by a Nevada MD named Mel Pohl, called A Day Without Pain?

Disclaimer; I work for the company that publishes ADWP (Central Recovery Press, LV, NV); however, that doesn’t make it a less-valuable resource. I felt I had to comment on this post because I’m working on a guide to the book today, and just switched over to wowowow for a "mind-break" in late afternoon, and ADWP was on my mind, and there was the topic on the front page! What a coincidence!

ADWP as a lot of great info on alternative therapies and mind-body work, as well as strategies to make use of the principles of twelve-step recovery to help chronic pain sufferers deal with the powerlessness, unmanageability, hopelessness and isolation of the condition, replacing them with the spiritual principles of surrender, hope, commitment, honesty, etc.

Sounded like a radical approach to me, but after reading the book, it made sense. Considering that the chronic pain epidemic has fueled the opioid-painkiller addiction plaguing our country, alternatives like those in this book are more and more attractive, for those with "simple" chronic pain, those with chronic pain who have become addicted to opioid painkillers or who are experiencing opioid-induced hyperalgesia, or those who are already in twelve-step recovery who have developed a chronic pain condition, and now must make a choice between their clean time/sobriety, or their pain.

I think it’s a good book that’s easy to read and that could help many people.