Blog Family Links Travel May 17, 2009

On the Road A Little More

OK– so the long part of the trek is over.  Three weeks for the book and it was fun, exhilarating and exhausting.  I missed my family.  Headed for another few days for the book here on the east coast and then over Memorial Day I will have the time to read your comments and answer them.  I’m so pleased at all you have written and how much you like the book.  I feel a little like Sally Field at the Oscars when she blurted out something like “You like me, you really like me!

So bear with me a little longer.  Have patience.  I try to personally answer my “comments” and not have someone do it for me– so it takes a little longer.  But Im so thrilled to have a spot where you can all share your thoughts about the book.   Ill be doing a reading tomorrow in Boston at Brookline Booksmith at &:00 if you know any Bostoners who might want to come out and say hello.  In the meantime– Happy Memorial Day– and remember to sign up to twitter and donate a dollar– or more to our wounded troops.

Go to http://tweettoremind.org and sign up to tweet……..

If you aren’t a twitterer– you can just go to Remind.org (this website home page will take you there) and donate on line.

If someone risked their life for you– would you give them a dollar?  I would!

  1. Mary McManus

    May 19, 2009 at 1:14 am

    Dear Lee – what a blessing and what serendipity to meet you again at Brookline Booksmith. I feel that God is opening the door for me to share my journey from post polio to the Boston Marathon on Good Morning America to help bring hope, inspiration and healing to those dealing with polio and post polio syndrome as well as those dealing with any diagnosis of a progressive neurological disease.

    In December of 2006, life as I had come to know it came to a screeching halt. For about ten years, I was experiencing symptoms of fatigue, weakness, tremors and general malaise. I went from doctor to doctor, specialist to specialist, each with their own compartmentalized diagnosis. Tonight you mentioned hearing ‘that Voice’ and in October of 2006, that Voice told me to google post polio syndrome. I discovered the Post Polio Clinic of Spaulding Rehab in Framingham. After innumerable tests, the diagnosis was confirmed. I went into a leg brace, used a cane and at times a wheelchair for mobility. It was as though God had shut down my body once more so this time I would have the opportunity to heal my life from all the wounds of the past – the polio, the physical, sexual and emotional abuse of a father who fell into alcoholism after he had cared for me when I had polio (my mother was emotionally paralyzed and unable to care for me). God created this wonderful opportunity for me to learn how to love myself and accept myself. I discovered the gift of poetry and poetry began to pour out of my soul providing me with a powerful healing force of God’s Love and Wisdom. I took the crisis of the diagnosis of post polio syndrome and turned it upside down with the help of God, the amazing healers at Spaulding Rehab hospital, finally learning how to ask for and accept help from my family and friends and learning how to say no. I journaled, meditated, prayed, worked so hard to claim the body I had hated and rejected and was blessed to have God send me so many wonderful healing angels.

    The first poem I wrote was called “Running the Race” – I sat in the cold winter of February 2007 wearing a leg brace and shivering (cold intolerance is one of the hallmarks of post polio syndrome no matter how warm my house was) contemplating my future. The team at Spaulding told me I needed to quit my job because I was burned out and the stress of continuing to work at the VA was counterproductive to the rehab I was going through – could I say yes to myself and take a leap of faith and follow a new path? God gave me the answer and I began to visualize my body healing, being grateful that I was alive no matter what shape my body was in and planning to leave the VA. I realized I was writing a book of inspirational poetry. I had written customized poetry for friends and family and everyone told me I should work for Hallmark. My husband told me to start my own greeting card company which is a joy.

    I began to experience physical relief with finding a new path but was not quite ready to take the leap of faith to leave the VA until I was called back after a routine mammogram indicated a tumor. I harnessed all of my faith, my powers of visualization and talked with God that I could not do cancer and post polio syndrome simultaneously. When I went back, the tumor had miraculously disappeared; my daughter said, if that would have been cancer would you have stayed at the VA? My answer was a resounding no and six weeks later I bid farewell to my job of 19 years. Everyone told me I was crazy to pull out my retirement account to start my new venture — well, it would have been gone anyway and these past two years have brought me healing of mind, body and spirit.

    After completing intensive outpatient rehab, quitting my job and finding my bliss in creating poetry, my body began to really heal. I no longer needed the brace and decided to hire a personal trainer to build on the program Spaulding had created for me. In February of 2008 when my trainer asked me my next health and fitness goals, I started to cry and said I was going to run the Boston Marathon for Spaulding Rehab Hospital to raise money and to say thank you to the institution who had helped me to take the first steps in transforming my life. Mind you, I had never run in my life and was still wearing my polio shoes. I traded them in for a pair of Nike’s and spent the next 15 months training to run 26.2 miles. I had to confront all of the fears, the painful polio memories of being slow and finishing road races dead last, going out in winter and overcoming cold intolerance but I knew God and my family and friends were with me every step of the way. And on April 20, 2009, my husband Tom, daughter Ruth Anne and I crossed the finish line of the 113th Boston Marathon raising $10,535 for Spaulding Rehab Hospital.

    On 6/3/1959, I dropped to the ground like a stone having been stricken by the polio virus. This year marks the 50th anniversary of the last polio epidemic in the US and 25 years since Dr. Lauro Halstead started diagnosing post polio syndrome. There are over 700,000 people who have been diagnosed with post polio syndrome and I am sure so many, many more who have not been diagnosed because their doctors are not aware of what is causing their symptoms; and still more who, may not be sharing what they are going through. And there are still new cases of polio being diagnosed in underdeveloped countries. The Post Polio clinic in Framingham is still seeing new cases of polio and continuing to do outreach and advocacy on behalf of patients coping with post polio syndrome.The Rotary Club and the WHO have made it a top priority to eradicate polio worldwide. Bill Gates just donated grant money to the Rotary Club to eradicate this devastating disease. Polio survivors struggle with low self esteem, shame, feelings of helplessness and hopelessness which manifest in Type A personalities, not being able to take care of themselves and being unwilling to give in or accept their limitations. Once I accepted my limitations, and opened up my heart and soul to gratitude, love and God’s redirection of my life, miracles happened. I can give a face and a voice for polio and post polio survivors worldwide. There is hope, there is healing, there is love and joy and a life to be reclaimed. The polio virus and any and all life circumstances cannot snuff out the light of the indomitable human spirit.

    A documentary is being made about my journey and here is a link to the trailer:


    The poem being read is “Running the Race”

    My website is http://www.newworldgreetings.com and my blog is http://newworldgreetings.blogspot.com/

    I feel as though I have met a dear friend in you Lee – our philosophies are very similar and my poetry expresses the importance of living in the moment, transformation that comes with crisis, and getting through the bumps and bruises through life with faith and love and gratitude and a sense of humor. Learning to overcome adversity at the age of 5 was the greatest blessing of my life and paved the way for all that was to follow. {By the way, I grew up in Westchester – Chester Heights – near New Rochelle, White Plains, Eastchester.} It is no accident that I met you at the Rosenthal Lecture and then again tonight and I am so grateful. Thanks for the high five and here’s one right back at you!

    I am so excited about reading your book and so blessed to be sharing my journey with you.

    Please let me know if you need any additional information. I have a bio prepared and I’m ready to go on nationwide TV with my story. God has prepared me and called me for this moment. I look forward to seeing you again and would also love to get together with you for a cup of tea the next time you are in Boston – you are as comfortable as my old flannel nightgown and I am so grateful to you. I am also so grateful for the work you and Bob are doing to help our nat
    ion’s veterans. I still maintain a strong connection with the veteran community and will be Tweeting like crazy!

    God bless you Lee and keep you and all you hold dear in Her Loving Embrace.
    With my love, joy and gratitude,
    Mary McManus

  2. Gary

    May 20, 2009 at 2:54 am

    Lee,
    My boss, whose daughter has been slowly recovering from a serious car accident in November, asked that I get permission to use excerpts from the 10 points of your May LHJ article. These will be used in a department newsletter that I edit.

    He read the article while recently visiting his daughter, who has undergone multiple surgeries and extensive therapy, and is learning to walk again. Her mom put her own career on hold and has been living with the daughter as a caregiver.

    I couldn’t find anywhere on this website to ask for permission, so I’m leaving this comment.

    Keep up the good work!

    Looking forward to your response.

    Regards,
    Gary Arms
    Gulfstream Aerospace
    Savannah, GA

  3. Jill Hunt

    May 21, 2009 at 3:15 am

    Hi Lee,
    You spoke at the Smart Talk series last night at the Hotel duPont and I can’t tell you how many people I told about your journey. It didn’t feel like a talk, but more like we were sitting in your house having coffee (ok, maybe wine) while you told your story. I read your first book and loved your honesty and look forward to reading the next one.
    I cracked up when you complained about your husband’s underwear, but I must admit the first thing I thought about was if Bob was wearing clean underwear when the IED hit? Who was the first mother to start this?
    Please know I listened to your words and will spread your message of being in the moment. I hope I am a better wife, mother, friend, daughter because of you.
    Wishing you and your family the best!
    Jill Hunt

  4. judi cooney

    May 21, 2009 at 1:44 pm

    Lee – I have to tell you a little story of irony. I hope you’ll bear with me. My older son graduate college this weekend, we had the graduation party, then he packed and moved away on Monday to start his new summer job. On top of that, my younger son had baseball playoff games both Saturday & Sunday. Needless to say, the last week or so have been very busy. So, when my Mother asked me to go to dinner Tuesday night followed by a speaking engagement at the DuPont theatre, i said “yes”. I had no idea who was speaking and what the topic would be, I was happy to get a nice meal prepared for me and sit still for a couple hours.

    The other facet to this story is; I am a Nurse Case Manager to a patient population of Injured Workers. In the last couple days I was re-engaged with a patient who had a traumatic brain injury less than a year ago. As I am sure you can relate, in the time immediately after this gentleman’s injury, I had spent a great deal of time with him, his wife and family, facilitating access to the resources the needed. His wife and I, through a great deal of “inappropriate humor” became very close. As the patient stabilized, their needs for my intervention and support dwindled. Eventually, my services were discontinued. Although nurses are taught how to initiate the end of patinet relationship from day one, this is not always easy. Especially in cases like this, where I had spent so much time with this family. So, when I recently was requested to re-engage with this family, it was bitter sweet. On one hand, the fact that they required my services, meant the patients progress had stalled. On the other hand, I felt like I had just heard from old friends and was anxious to see them. Anyway, I was scheduled on 5/20/09 to meet with this patient, his wife and doctor to re-evaluate his present condition.

    Enter you. How ironic was it, that I presented at DuPont Theatre to listen to this speaker, who had so much information to share with me about the recovery of a patient with traumatic brain injury, and it’s impact on the patient’s family. I spent much of your presentation feeling so engaged. I could relate on so many levels to your experience. I was taking notes, like a school girl, of resource websites and the names of your books. When I went to my meeting with this family on 5/20/09, I was armed with so much information for them. Again, I will have to disengage this family, once my services are no longer needed; and that’s a good thing, because it means they no longer need me. The goal is always return a patient and his family in a state that is a close to their pre-injury life as possible. The difference is, this time, I feel I have ben able to arm this couple, who I consider friends, with resources that will help them in those moments you spoke about. The moments when, everyone goes away and it’s just this wife and her spouse, wondering if what they are experiencing is normal or not. It makes me feel as if I did my job, just a little bit better. It makes me feel like I was able to help my friends.

    Thank you.

  5. admin

    May 25, 2009 at 1:03 pm

    I hope that I responded to this– im waaaaaay behind the 8-ball on answering people and will get to that this week. Please feel free to reprint!

  6. Dr. John N. Hatfield, Ph.D.

    May 25, 2009 at 8:04 pm

    Hi,
    Since 2000 we have helped more than 341 individuals who have incurred TBI and PSTD, some of whom were military veterans. Most of the injuries were extremely severe, including open and closed head wounds. More than 95% of these individuals have returned to work, school, or are living independently. Our Cognitive Development therapy is internet enabled, allowing survivors to stay at home and “play games” that stimulate the hippocampus which in turn gives “birth” to new neurons, each capable of making 30,000 new neuronal connections throughout the brain as directed by the hippocampus. These new neuropathways are permanent and become more robust as they are used in daily living and academic relearning skills. Our oldest injury (TBI) was 22 yrs. post-injury. The “game-like tasks” which are controlled by an oversight therapist or specially trained caregiver do not “teach” reading or math…just gets the brain better prepared to learn and process information more quickly and accurately. Focus, attention, visual and auditory discrimination, sequencing, categorizing, short & long term memory, and the high executive skills of problem-solving and decision-making in, under, and between all the tasks.
    The average time for a mild TBI = 3 months…6 months for moderate TBI…12 months + for severe to very severe TBI.
    Within the last several years, a young Marine was in a car wreck outside Corpus Christi, TX. He had not slept for 3 days…not drinking…when he left the interstate and crossed over to the other side, striking an 18 wheeler semi. 2 children were killed instantly in the back seat. Jesse, the 13 yr. old, was saved by the airbag in the front passenger seat…basically uninjured with a few cuts and acid burns. Dad, however, was trapped in the car…C-2 neck fracture, multiple bleeds in the brain, collapsed lung, many broken bones, and severe 3rd degree acid burns, starting just above his left wrist and continuing all the way down the left side. Neal had served 13 years in the Marine Corps, E-6, and want desperately to stay in the service until he could retire. TriCare Ins. agreed to “try” our cognitive development program for 2 months…not 3. However, Neal worked on the assigned cognitive activities at 4-5 hours each day. After 2 months, TriCare told us stop the cognitive therapy as they were going to give Neal a “Stress Test” and if he passed he would be redeployed…or discharged with a medical if he failed. Neal passed with flying colors, but when the MD found out about the severity of the accident, she gave him shore duty, reassigning him to Naval Air Station, Meridian, MS, full-time duty. Since then, Neal has been given a clean bill of health and today in aboard a ship somewhere in the gulf around Iraq. Jesse is living with Neal sister and doing well in school, overcoming a bout with PTSD and did his dad. The Navy made a Safety Powerpoint on Sleep Deprevation from Neal’s accident. I am willing to share this with anyone who may be interested. My wife of 53 years (RN) and I are willing, ready and able to travel to anywhere in the US to share our experiences with families of survivors, especially our military vets with TBI and PTSD. Also, I can be reached at 1/877-204-1737 x-12 or on my cell phone: 405-706-6950.

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