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A Very Long Amazon Review and Thank You to Donna Jackson Nakazawa

Donna Jackson Nakazawa’s book, ‘The Last Best Cure: My Quest to Awaken the Healing Parts of My Brain and Get Back My Body, My Joy, and My Life’ has given me hope that I can help heal myself, and before reading her book I was positive all hope had been lost. Please note, what follows is a rather lengthy review, as it relates to my own serious health issues, and shares how Donna Jackson Kakazawa’s personal experience with an autoimmune disease, and her year of healing has inspired me and given me hope for my future. I have never read a book and felt such a connection to the author, as many of our health problems are similar. Prior to reading this book I was struggling with depression and panic due to worsening of my disorder and disability. I do not wish to overemphasis my story, as Donna’s is amazing, touching and incredibly well researched; providing new studies in neurology and how the brain and neural pathways respond to pain and our body’s suffering, be it through a short cold or flu or an extended or permanent disease or disorder. I wanted to tell my story simply to show how this book has managed to give me hope and much more knowledge about the psychology behind chronic illnesses.

Let me explain. Three years ago I began having a constant, horrid sensation of being stabbed in my right ear. It took 1 ½ years to receive the correct diagnosis of a rare disorder called Geniculate Neuralgia. The time up until the diagnosis was filled with a wide array of medications, Botox and seeing any specialist my insurance would cover.

A year ago I had what is called a Microvascular Decompression surgery. It is a brain surgery done to pad the rogue nerve which is causing so much pain- in the case of Geniculate Neuralgia this is the 8th cranial nerve, which is responsible for the intense pain felt deep inside my ear. It would be more appropriate to say, however that I went in for a Microvascular Decompression, but when faced with a disorder my neurosurgeon was not qualified to fix (I learn after the surgery is completed) he does not follow the standard protocol of this surgery, but instead “massages” my nerve- as it turns out a completely different nerve at that. This is the rough equivalent of giving someone with a broken leg a toe massage, and when it does not mend the leg, insist the fault must lie with the patient, and all hope for ever leading a pain-free life is lost. (That is an indirect quote, courtesy of the neurosurgeon.)

As anyone who lives in chronic pain with any kind of serious health issues knows, one thing you are always lacking is energy. I am exhausted all of the time. It has taken me a full year to do my research and determine that indeed, I was suckered, and had I lived in nearly any other state and gone in for brain surgery for my neuralgia, the nerve would have been wrapped, I would heal, and with luck it the padded nerve would cease to cause pain altogether or at least partially for many, many years. Instead I went to the only neurosurgeon in my city who performs this surgery, though only for what I refer to as my disorder’s big brother- Trigeminal Neuralgia. This is just as painful as my own, but causes a different sort of pain, coming from a different damaged nerve. If I had that neuralgia I have no doubt the neurosurgeon would have done an amazing job- it is what he has made a name for himself fixing, however since he had never fixed the 8th cranial nerve, his overconfidence and statements that the surgery would be near identical and thus would not prove to be a challenge for him turned out to be a lie.

Over the last year I have been tossed around to various doctors like a human equivalent of the game young children play where you don’t let the ball or balloon hit the ground. By keeping me sedated, heavily medicated and running around to various doctors for different opinions and a second unhelpful, invasive surgery, I have been too exhausted, too hurt to stop, focus and figure out what I needed. As it turns out what I need immediately is help getting the toxins of three years of heavy-hitting medication out of my liver, and I need the opinion of an expert. I have chosen a team of neurosurgeons in Pittsburgh to review my medical history and my botched brain surgery to see if indeed the diagnosis is correct, and if it is if they will perform the surgery. This is laden with it’s own challenges –both my husband and I are disabled. Three years ago when the pain struck me seemingly from nowhere and has never stopped for a second since, my dear husband quit his job to be home to help me and care for our two young children. Instead of a short break from work, which is what we expected, my husband, a disabled Army veteran, learned shortly after my diagnosis that the blinding, daily migraines he has been getting are caused by bone spurs at the top of his spine and likely will require spinal surgery. For now, he does all he can, except getting the spinal surgery he needs, painfully waiting until I am well again. He is going through many of the same procedures as I did before receiving my diagnosis- Botox, nerve blocks, and also epidurals in his spine that make him so physically ill the pain relief is not worth the side effects.

Faced with the real possibility that drastic measures may be needed to save my liver, and that the neurosurgeons in Pittsburgh are due to let me know within the next month if they can operate, my husband and I have set up a fundraiser. This in itself has been humiliating and humbling. We have never been rich people, but at any given time at least one of us is working and earning (mostly) enough to pay the bills. Now we do freelance work when and if it becomes available, and then try to force our pained bodies to work on a tight deadline because it is the only way we can save enough to pay rent. Thus far we have been amazed and so incredibly grateful to people that have donated- to help us pay our bills while we wait for word on what procedure each one of us is scheduled for nest. The people we know that have donated are not wealthy, and generally they also have pressing health concerns of their own. Each donation, regardless of the amount, brings me to tears, and words of gratitude and thanks never feel like quite enough.

It is in this time of waiting, having daily panic attacks, accomplishing one thing on the never-ending to do list, that I sat down and read Donna Jackson Nakazawa’s book, ‘The Last Best Cure: My Quest to Awaken the Healing Parts of My Brain and Get Back My Body, My Joy, and My Life.’ Donna is a science writer, and an amazing researcher. In this book she shares what her life is like as she lives with Guillain-Barré syndrome, an autoimmune disease that leaves her feet and hands numb, paralyzing her legs and arms twice in seven years. Each time, months of rigorous physical therapy helped her walk again. She still struggles with severe problems caused by her autoimmune disorder – she has a pacemaker, legs that can’t run, a low white blood cell count and gastrointestinal problems. Emotionally she feels as though she has lost joy in her life, despite her loving marriage and happy children, and it is easy to see why. She may get to the top of the stairs in her home only to collapse, and it becomes normal for her children to ask if she is alright and help her stand again once her legs will hold her up again. My eldest worries about me constantly falling and injuring myself after a terrible fall I had shortly after brain surgery. She cries when I am home alone, worried I will fall again and no one will be home to help me. She is only 7- I do not want her to be so worried about me, to the point she is afraid to leave me alone. She is losing some of her carefree spirit and joy as she watches her father and I suffer through days of increasingly painful symptoms and many doctor appointments, seeking in vain someone who will listen to our stories of crippling disease instead of simply writing a prescription that they write for every other person that is in any kind of pain. My children have learned to be quiet little mice while I am laying in bed, too often, trying in vain to lessen my constant pain by being in the quiet, darkened room. I want them to run, play, laugh and create games involving furniture, cooking utensils and stuffed animals, not have their giggles be silenced because any noise triggers the pain in my ear. Even the sounds that make me so happy to be a mother hurt my ear, as does the wind outside, a soft pillow, the TV on at a low  volume.

Donna never knows if the numbness in her legs is only a momentary twinge or something that will lead to another extended hospital stay. As a mother suffering from a chronic pain disorder and a mild disability that affects my balance, prevents my legs from propelling my body forward at more than a brisk walk, with great effort, and who views stairs in horror, able to count the many times my legs have simply frozen under me, causing me to fall, at the greatest length, down an entire flight of stairs. I read through Donna’s symptoms and struggles, and while some are different from my own, I understood. I feel her frustration with having pain and illness take over my life, drowning out moments of joy with my family. I understand her frustration and fear. When will I feel better? Will I ever feel better?

Instead of allowing, as Donna calls it, the Pain Channel in her head to overtake the Life Channel, as it had been doing for too long, she meets with her physician and plans to spend a year learning about and practicing three natural healing practices, which she documents with clarity and depth. First she studies meditation, then acupuncture and finally yoga. During her year of research she shares many insightful and fascinating research studies – one of primary interest is the study showing that children who undergo more than three Adverse Childhood Experiences (ACE) are more likely to suffer from chronic illnesses as an adult.

The reason I loved this book so much is that while Donna practices and writes about learning various types of mediation, receiving acupuncture, and finding yoga she can practice in spite of her physical limitations, I watched and read as each day her brain, more able to change and create new neural pathways than we have ever thought before, and therefore her negative emotions, like the constant fear and anxiety that come hand in hand with living with a chronic illness or disorder, while not extinguished, are calmed. She learns how to slow down the chorus of negative thoughts clamoring in her head for attention, she heals while on the acupuncture table, and this healing continues long after her sessions are complete, and perhaps most amazingly, for me, as I also share many of her physical limitations, is reading as she begins yoga, slowly, carefully, under the guidance of a yoga teacher who teaches people with injuries, pain and other limitations to what their bodies can do, how to not only learn the poses, but to embrace them, become stronger physically and mentally until we see her proudly holding poses that a year prior would have been physically impossible.

As I read this book I cried along with Donna’s struggles and cheered her success. Most importantly, it is necessary to note, Donna wrote about ways that people who are poor and sick can access meditation and yoga as well. I am often frustrated in my attempts at natural healing to learn that certain classes, procedures, even knowledge is only shared for a high cost. When anyone is struggling through any type of disorder or disease, financial stress often comes hand in hand. I have paid my price, foolishly in the past, for a supposed cure wrapped in the guise of friendship and support, I feel all the worst for spending money I did not have for something that was less than a cure, but also lack of support, which was what I was really paying for, and desperate for, in the lonely times between doctor visits, hospital stays and sleeping alone in our “’sickroom” at home- basically my quarantine room, as with so many procedures, being born 4 months premature with mild Cerebral Palsy and a weakened immune system, along with having a child in public school, I fall ill much more often than others and need a place to rest often when the pain is too much.

I wish I could say I bought Donna’s book and that I will buy copies and give them to the people I know, too many of them, who struggle each day with similar pain. For now though, I found ‘The Last Best Cure’ at my public library, and I also have reserved another book she wrote, ‘The Autoimmune Epidemic.’ which I am looking forward to reading very much! I may not be able to show my thanks to Donna for writing this book by purchasing it, and giving me hope at the time I needed it most, but I will share this wonderful book with people I know who need it, people like me who live only on the Pain Channel, and like Donna want to follow her on her inspiring journey back to the Life Channel, despite constant pain and challenging, terrifying symptoms.

Thank you Donna Jackson Nakazawa, for writing this book and for showing me that while I still must wait for specialists to open up my brain again and fix it, I do not have to lose all of my life until then. I am taking my first stumbling steps back to joy, and I am so grateful for you for showing me the path to follow!

I highly recommend this book to anyone who is currently struggling with physical and/or emotional diseases or disorders. Being ill and having your body and mind slow down or fail is a frightening experience, especially if it is a long struggle or incurable disease. Read this book, learn from the amazing studies that are being done on the human brain- how we can change it and create a positive mind and outlook, even in the midst of debilitating sickness. We each must live with the challenges presented when we or a loved one is unwell, but we do not have to give up on life and joy. Thank you Donna, and thank you to anyone who has read through my very long review. This book reached through the darkness of my despair and showed tools I can use to invite joy back into my life and to the lives of my husband and children.   junglebuddha

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