The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life
Author: Allen Rucker
Published by Harper Collins
http://www.allenrucker.com/

The Jewish conception of an afterlife has much in common with rooting for the Cleveland Indians to win the World Series.  We have the greatest hopes that it is possible, we know that if it happens, it will be just awesome, but we aren’t going to devote a whole lot of time or energy focusing on it.  We find other things to live for, like our families, golf, good movies and books and Chinese food.  I’m Jewish and have been a big Cleveland Indian’s fan from my earliest memories growing up in Cleveland Heights, Ohio.  These are important things to know about me when reading my comments about Allen Rucker’s wonderful book.  When I was teaching cultural anthropology, I would start the semester by explaining to my students that every anthropologist describes and explains a culture through the filters of their own life experience.  As much as we might try to be objective, it is impossible to strip our “selves” from how we perceive of and ascribe meaning to anything we observe.  This is certainly even more the case when giving one’s impressions of a book or movie.  This is a good thing to keep in mind when reading any review or watching the news for that matter.

This afterlife thing is a big deal.  If your belief system doesn’t offer a clear definition of “some better place after the earthly thing,” you’re under some considerable pressure to make the best of the here and now.  So, that’s where I am; life has to be good, because this is all I know we’re going to get with certainty.  When really bad things happen to people (including myself), I place tremendous value on being able to make something positive out of the experience and then hang on for dear life to a positive attitude and world view.  Thus, I so admire people who are able to accomplish this important and amazing feat.  Jim Lubin, by the way, has set the gold standard for a positive attitude and outlook on life in the face of adversity.  If you can retain your sense of humor while managing difficult challenges, you have my deepest respect.  Allen got TM and accomplished both; he can laugh (mostly at himself) and he has maintained a very positive outlook on life.   

I loved Allen’s book.  Allen chronicles his experience getting TM.  For those of you who have TM, NMO or ADEM, you will find Allen’s recounting of his acute attack, diagnosis and early rehab to be a really intense experience.  It was for me, and the acute attack didn’t happen to me.  But I lived through this happening to Pauline, and it was impossible not to reflect on each of her experiences as Allen described his own.  Reading about Allen’s experience was so intense that I had some concern about how Pauline was going to handle reading and thinking about it.  Allen truly captures the essence of just how horrible and devastating this experience is for the people this happens to and to their families.  I cried while reading this part of the book; but I also laughed, because Allen writes with a very wry sense of humor about himself and his experiences. 

Most of the people who read Allen’s book will know absolutely nothing about these neuroimmunologic disorders beforehand.  Allen’s account of his TM onset will leave an indelible impression on the reader.  His description of his confusion about the diagnosis and the tremendous uncertainties surrounding his recovery will ring frighteningly true for all of us in this community who have shared in similar situations.  Unfortunately, Allen had no recovery from the damage caused by the acute inflammatory attack. 

Allen takes us through his journey of rehabilitation and the mental and emotional process of adapting to a totally new life.  Of course, TM doesn’t happen to a biological life form; TM, ADEM and NMO happen to a human being.  People have families, always very complicated families, and they have careers or they are students or they are very young children or senior citizens, they have hobbies, they have passions of one sort or another.  Everything about life is going to change after TM.  The challenge is always about defining what from the former life can be reconstructed, what is going to be lost and what new passions and opportunities can be defined.  Allen covers all of this difficult emotional, psychological and physical work in his book.  It tires me out just thinking about it; but you won’t tire reading about it.  Allen’s style is easy and he helps us through the really painful stuff by giving us an opportunity to laugh on occasion – with Allen and at ourselves.

Allen writes about his family’s role in his rehabilitation experience.  As happens in so many of these situations, the family takes the central place as advocates, caregivers, emotional supporters and cheerleaders.  It was no different for Allen and his wife, Ann-Marie, and their two sons.  Allen also addresses the financial burdens that invariably surround this experience.  He provides us with a very sobering reflection on some very difficult times.   

I greatly admire and respect Allen for his courageous work in writing this book.  He is so honest and candid in exposing his vulnerabilities, his confusion, his anxiety, his self-doubts, as well as the very difficult work that goes into finding meaning in one’s life after losing so much.  Allen demonstrates a remarkable ability to adapt, to laugh at himself, to continue to love life and to live his life to the fullest.   

I met Allen in the same way that I meet most everyone with TM; they call me or write to me seeking information and support.  I am so rooting for Allen’s book to do well.  He has created a great opportunity for raising awareness about TM.  Allen’s book is receiving wonderful reviews, including from the New York Times.  Allen has been on NPR to discuss his experience and his book.  Allen is promoting his book at signings around the country.  If his promotional tour comes to your area, please try to attend.  It would be wonderful if you had the chance to meet Allen, and it is likely that you are going to meet other people with TM, ADEM and NMO who also come to these bookstore signings. 

I hope you take the opportunity to read The Best Seat in the House.  Allen’s very genuine, emotional and humorous insights about an experience that we all know so intimately will hopefully provide you with some perspective and solace.  It is a must read for those of us in the TMA community!  It is sometimes difficult to find the right words to express our feelings and thoughts to our family and friends.  The greeting card companies know this, and work very hard to offer us a great variety of sentiments in order for us to find just the right expression we are attempting to convey.  I know that there are many of you who have tried to communicate how TM or ADEM or NMO has so profoundly and dramatically changed your life to family, friends and co-workers, but have had a tough time capturing the enormity of the situation.  Please consider Allen’s book as the message you have been trying to share with these people in your life.  By reading Allen’s book, they will learn something incredibly important about you and they will also learn something of great value about themselves.