Letters to Noah benShea, ALS Association National Laureate

Contact Noah benShea at
www.NoahbenShea.com

Thank you so much for your words of inspiration.  My husband was diagnosed with ALS in February.  I love the way put things into perspective.  I feel like I have gained something very important today by reading your message.

Sincerely,

C and B in Utah

Dear Noah,

Just wanted to drop you a note to thank you for the work you've done on behalf of so many touched by ALS.

Is there anything that you can recommend to help our only son C? He's 16 years old, and my wife, his mom, is in her 40's and cannot move or speak and is in hospice with this horrible affliction.   I've lost words on what to say to him. What you could suggest - as a child of a parent with ALS - would be greatly appreciated. This is worse than Vietnam.

Noah, for you to continue to press on - your Father had to be a wonderful Dad, and I just feel he's watching you and smiling.  

I know that L. is the most amazing person that I've ever known.  We’ve been married 22 years, and she is the love of my life.  She was diagnosed with ALS in 2001, but only her body withers as her mind and spirit are alive and well . 

Thanks for listening.  God Bless you.

J. 

----------------------------

Dear L,

I today received an email from your husband sharing a little of how tough a time you are going through.

No one on this side of the issue has any right to give you any lectures.

What I can send along are my prayers for God’s compassion.

And a reminder of how much you have meant to so many.

You matter.

Even to people who you don’t know and don’t know you.

All of our footprints will be washed by time.

Some of us leave footprints in the sand and are a path to others and a reminder that “someone” made a difference in time.

L, I send you a hug and prayers.

Hope you can feel both.

Noah

-------------------------------------

Dear Noah,

I felt your hug and your prayers.

Your kind words reminded me once again that God has a purpose.  I may not understand it, but I trust him.  It's that simple.

May God bless you and may you always keep Him close to you heart.

Thank you,

L.

It's amazing how God works. I was reading my ALS Association newsletter and the article written on your becoming the National Laureate of the ALS Association. It mentioned that you were born in Toronto. I am a Canadian living in Texas and lost my sister to ALS five years ago. I just read your interview with the folks from Starbucks and loved what I read. You are now part of "my favorites," and I look forward to reading your books and your work on more Starbucks’ cups.

Thank you so much.

B.

Hello Noah,

This morning I was sitting with my friend D who has ALS when I spotted a magazine on her coffee table titled Hope.  I read the article that you wrote for the magazine.  There were so many things in there I could relate to.  I am first and foremost a caregiver.  Not by choice really, but it seems to fit me.  I assist people with developmental disabilities.  I have found myself in care giving roles with a handful of cancer patients including both of my parents who now are both deceased.  My fiancé has a disability from a head injury when he was a teenager.  I don't always find these situations, a lot of times they find me.  My friend D came down with ALS a little over a year ago.  I find myself volunteering to be with a lot of people who need support and assistance. 

I was especially touched by what you wrote about the wounded players.  Sometimes I get into the trap of thinking that someday I'll heal, someday everything will be roses, someday, someday.  After reading your article I realize how much l like my life and like what I am doing.  And even when I don't like it, I have hope that there is meaning in it anyway.  I really don't know what the future holds...I have so much responsibility and it doesn't look like that's going to change.  I will, though, keep putting one foot in front of the other.

Again, your words were a sort of lifesaver.  I will return to that article again and again.

PS 

Dear Noah,

I just finished reading the article about you and your father in the fall edition of A Reason for Hope and wanted to tell you how touched I was by the contents.

I lost my husband of 36 years back in Nov. of 1986 at age 55 after a courageous battle of 6 years with ALS.

You mention the necessity for humor, and you hit the nail on the head.  After the initial disbelief, anger, frustration, etc. following the diagnosis, it is absolutely necessary to face the inevitable with courage, humor and faith.

The first three years of G’s illness were ones of hope, discouragement, and ultimate acceptance of the inevitable.  The final three years were spent with him on a respirator at home.  I was trained by the hospital, where he spent 2 months prior to discharge, to be responsible for the care of the vent and all other aspects of his care.  I had part time nursing assistance, since I could not be on alert 24 hours a day, but was truly the chief caregiver.  How grateful I am to God for giving me the strength and endurance to be able to care for this man who was such a wonderful husband and father. 

Your article brought back many memories of that journey, and I want to thank you for sharing your story.  Congratulations on being named National Laureate by ALSA.  May God bless you as you continue with your good works.

Sincerely,

C.

Dear Noah,

Thank you for your article, "The Best Way to Find an Angel Is to Be One," which touched my heart and made me cry -- it was oh, so true. I remember so well laughing at some of the things that happened to my husband, i.e. putting his head thru many walls,

when he fell - because this helped us both - or we would have just sat down, if he could have, and cried our hearts out. I remember someone saying to me, “E, you will do things you never thought you could, or would have to do, and you will gather all the strength that God has given to you, and you will do them and do them with a smile on your face because this is going to be a labor of love.”   I didn't realize how much strength I could muster on a daily basis and never knew what new challenge would be presented to me.  But, I, with God's help, got thru every day.  I would go outside the house, sit in the car and ride around the block, so I could cry and scream, and then go back in the house smiling and laughing so my husband would not realize how difficult it was for me to be my cheery, happy self.   

Your article made me realize how worthwhile all of this "care giving" was and made me feel a little taller -- ALS IS the MONSTER they call it.

I pray that we will soon find a cure for it.  My husband was a big healthy man, a retired police officer and a former semi-pro football player, and then ALS struck him, and he became so helpless in such a short time.   It was and still is incredible to me how devastating this "monster" is.  I do believe the worst part of it is the person who is afflicted with ALS is always cognizant of the "sentence" he has been given and mentally is so aware and can do absolutely nothing but watch himself die a little bit more every day with every fasciculation that shows up in his body movement.  It’s so terrifying and oh so sad.

God Bless you for all you do for ALS and the lives it touches, the people who are affected and we caregivers.  You have given me so much more insight - and for that I am grateful!

Sincerely,

ET

I just read your article in HOPE, and I am forwarding to my mother.  My father passed away two months ago from ALS and your writings were so true and inspiring.  I am hoping it will help my mother understand her role and understand her future.  She is having a very, very difficult time with my father's death.  He lived for over five years with the disease but does not understand his death.  Your writing helped me understand a little better, and I am hoping it will help her move on knowing her past and present self.

Thank you for your words; I look forward to more.

AL

Dear Noah,       

Hello.  My name is F.  I recently read your article in A Reason for Hope, the ALS magazine, "The Only Way to Find an Angel Is to Be One."  I am 17 years old.  I moved from my home in Idaho right after graduation to come take care of my aunt stricken with ALS.  Your article was something I needed more than anything.  I am the sole care giver of my beloved Aunt P, so I often feel like I am the only one and that everything depends on me.  Your article made me feel honored to be the one who gets to help.  I am privileged to be the angel for my Aunt P.  The day the magazine came in the mail was the day Aunt P and I took our first big spill.  I was trying to lift her from her wheelchair into bed, we got the giggles like we constantly do, things didn't go right, and unfortunately we fell.  Her brittle, paralyzed body lay on the ground; I didn't think I could take it anymore.  The emotional roller coaster was too much to bear, and the massive amount of responsibility was absolutely overwhelming.  Then, I read your article, and I felt like I could do it.  I felt like I could go on and help Aunt P.  I believe it was a gift from God.  Thank you so much for writing that article.  It helped me so much, and it hangs in my room, where I read it constantly. Thank you, once again.  You do much good in the world, and it is a better place for having you in it.  Thank you, Noah.

Sincerely, FA

Dear Noah,

I am speechless (no pun intended as I do have bulbar ALS and am literally speechless) after reading this article. It was so touching, encouraging, and real. I wept when I was reading it, and I passed it on to my medical directors at my former work who are very dear to me to pass on to anyone who they run into in their lives whom have ALS  or any devastating illness. These are such words of strength and avenues of courage. I do not know how you came up with them, except that you are on the front lines like all us PALS, and God has shown you the way to help us by your gift of words and faith. Thank you so much for this profound article that I will read everyday of my life as I go on living. You are a treasure!

Sincerely,

N

Noah,

I apologize for using your first name, but under the circumstances and the job you've undertaken, I feel as close as a friend.  I'm sure you have received a vast number of responses to your first ALSA article, and I expect mine will be late as people have a tendency to speak up quickly when something zips into their mail drop electronically.  The shelf life is short, it seems.

I, too, was tempted to snap off a quick reply under the category of "How dare you!"  But of late I've mellowed, calmed, and thought better of that when I reconsidered what my own family is going through.  Simply put, I have the dreaded diagnosis.  The family members are each occupying a different stair on the climb to understanding, and strange as it may be for them and for me, I cannot explain it for them.  We are all seeking understanding.

But to get to my reason for writing, your article touched me more than the myriad ones that fill my nightstand of late.  What is the difference, one brief sentence, sixty-nine words that caught in my throat?  The other anecdotes, the stories, the rounding off of your ideas were direct and cogent.  But you captured the very essence of our existence with, "On the day you or someone you love is diagnosed with ALS the Cosmic Van and Storage Company pulls up and your previous self is picked up, and packed up, and moved into a separate world, into a time suddenly and completely separate from a memory of a life a lifetime ago where no matter the trapeze act of one's life, there was always and still a safety net."

The day my previous self was carted off, the white coats had to pause and explain as my 'new' self was entering a world of which I knew less than nothing.  Lou Gehrig was but a dim memory, a ball player from my days in grammar school.  His untimely departure from the field merely left room for another talented athlete to enter the game.  The explanations continue today; the research articles keep us informed on how well the mice are doing.  But we need something more stimulating.  I have a feeling you may be the one.  You've stolen a look inside the sideshow tent and have been shocked but fascinated.  I look forward to your helping me, and others, to move on and deal with our new lives.

LC

Dear Noah,

After playing nip and tuck with rainy weather, at the last minute sunshine prevailed, and we were able to hold our Candlelight Vigil. For a little while, the maintenance crew at the Ohio Statehouse was reluctant to bring out the sound equipment, tables, and chairs. However, the program went on as anticipated, bringing inspiration and hope to those in attendance. Although the threatening weather kept some away, people came to Columbus from Cincinnati and Dayton. Not only did I read the passage from Jacob the Baker which you had selected for us, but also I added the last lines of your beautiful article from the ALSA web site. I think all of us who participated in the vigil will remember that ALS and ALSA can have a brighter, deeper meaning, thanks to you.

Always Love Someone Always,
Q

My sister-in-law had forwarded your article from the ALSA website to me and my brother. It is always so comforting to read words written by someone who has experienced ALS either by watching someone you love endure it or being the victim of ALS. Our family has “experienced” ALS more than once. In 1999, I lost my precious mother to ALS who had lost her sister in 1986 to ALS. And then in April of 2004, I lost my oldest brother at the age of 49. The article and other comments that you made in the

various articles I read on the website are so vivid. Just a few weeks ago, a lady called my cell phone. Her cousin had given her my name. This lady’s father had recently been diagnosed and was already in a wheelchair and being fed by a feeding tube. She and her family knew of no one who had any knowledge or knew anyone remotely connected with the disease. The questions she asked broke my heart. The fear of what you know is scary but the fear of the unknown is terrifying. Thanks so much for your effort to bring awareness to ALS and support for the families. Now that I know that you are there, I will continue to read your stories and articles. I know that in God’s time there will be some way that our family can use our experience in some way to help others who have been touched by ALS.

RB

Hello!

My name is C from Georgia. I lost my husband, T to this dreadful disease in April 2004 on our daughter's birthday. We had been married 30 years. He was only 49 years old. His mother and her sister also had ALS, so we are in the rare 10% that has familial ALS. Our children, son, 29 and daughter, 25, and his siblings, P, 44 and B, 40, have a 50 - 50 chance of getting it. We all try to stay up-to-date on the latest research.

I read your article on-line on the ALSA web site and was very impressed. My husband only lived 10 months after being diagnosed. I knew in my heart long before we were diagnosed at Emory Research Hospital in Atlanta that this was the monster we were facing. (I just noticed I said, "We were diagnosed.” This is so true, because it affects the whole family.) I had spent so many hours on the Internet looking for other answers and seeing him stumble, fall, speaking with slurred speech at times, and I always came up with the same thing.

In May of 2003, he fell at work and shattered his wrist. I remember getting the phone call from him at work, and then I quietly shut my office door and laid my head down on my desk and sobbed, knowing this was the beginning of the end. Little did I know how fast the end would come.

I don't know why I'm telling you all of this. I guess it's like you said in your article that we're all in this family - a family no one wants to be a member of.

The things you said about your father reminded me of T. He didn't want to be a hero - didn't want to be the center of attention, but his life touched so many people.

I also love your saying, "Always Love Someone Always". I will always love T. I miss him just as much today as I did a year ago.

Thank you for your article and for speaking out for ALS.

Thank God for the testimony in the ashes.

Love,

CL

Wow! I have just read your message - delivered in your new ALSA position - and it is so moving. You have touched a necessary cord, which brought tears.

Dear Mr. benShea:

After almost a year of undiagnosed medical problems, my sister told me yesterday that she was diagnosed with the disease ALS. My sister has always been my very best friend. She is beautiful, smart, and has a heart of gold. I have always been the strong one in a family crisis, and the one who takes charge and the one who the family looks up to when something needs to be done. Our family is devastated by this news about my sister, and I began looking up information on the internet about the disease and found the ALSA website. I was so surprised to find out that you are the National Laureate of ALSA. I have three of your books, Jacob the Baker, Jacob's Ladder and Jacob's Journey.   These books have been on my nightstand next to my bed for many years, and I am unable to tell you how many times I have read from these books to give me comforting words of wisdom when I need to try to make sense of the world. It is a great comfort to me to know that you will be communicating on the ALSA website. I have begun to research the disease ALS and will try to find out how I can best help my sister. She has great difficulty speaking, and she tells me that just knowing that I will be there for her is an enormous comfort. Thank you for taking the time to read my message.

Most sincerely,

SM

Dear Mr. benShea

I read your article from the ALSA. I have been dealing with ALS since 1976. When my husband and I married, his mother was diagnosed with ALS. Didn't know much about the disease, and she passed away after dealing with this disease for 3 years. In August 2001, my husband was diagnosed with this dreadful disease. He passed away Jan 2, 2004. In May of 2002, his sister was diagnosed with the disease, and she passed away in June 2004. When my husband was diagnosed we were devastated, this turned to anger. How dare a doctor tell us to go home and get our affairs in order and get ready for my husband to die? I did a lot of research online and tried to find a support group in our area. We didn't have one so we started one. Our first meeting had 17 people there, including family

and patients. It has been over two years, and most of the members have passed away. We still have one person with us from the original group. I am still very active in our support group, but it is so hard to convince people dealing with ALS they don't have to deal with it by themselves. I made a promise to my husband and to my friend that I would continue to work with this disease and help find a cure as long as God gave me breath. Thank you for continuing to work to help people deal with this disease. I look forward to reading the rest of your articles. Thank you for caring.

AH

Dear Noah,

I met you briefly and heard your wonderful talk at our Leadership meeting in St. Louis.  It was truly inspiring.  Your words continue to resonate in my soul.

I, too, lost a parent to ALS.  My loss has inspired me to volunteer with our ALSA Chapter in patient services...for the last twenty-one years. I love meeting ALS families and sharing my hope with them.  The families have given so much to me--in so many ways.

I help facilitate support groups in several cities.  Your wisdom has strengthened me in working with our families.  I am wondering if you would share a copy of your talk in St. Louis.  There were many of you thoughts that I would like to share with our families.

I appreciate your work with The ALS Association.  It is truly a group of passionate individuals on all levels, driven by love for our ALS families and the desire to serve them---- and at the same time find a cure for this dreadful disease. 

Thank you for helping us serve.

K

I’ve just read the article you wrote “The Best Way to Find an Angel Is to Be One.” I loved it!  I sent a copy to my sister, and I can’t stop crying as I type this.  We took care of my father for three years along with my mother.  Of all that I have read on this subject, your article feels like you were there with us.  It was exactly how it feels.  I know that you went through the same experience, but honestly, my sister and I agree, it was almost like you were inside our heads writing for us.  I told her many times, especially after my mother was diagnosed with cancer two months after my father passed away, and we then took care of her, that we should write a book.  I guess we were angels.  It’s weird how a terrible, terrible experience can also be the best time of your life.  Where you are more honest, more open, spend more time with your family, and it changes you forever.

Thank you.  I hung the article in my office and when people ask me about the title – I tell them that I once WAS an angel!!

CKA

It is about 12:15 AM. I know I should just go to bed. The past few nights have been bad, and my wife is likely to be up again tonight. I am exhausted, and I have much to do at work this week. But on the table are these articles that our ALS nurse sent to me. She said she finds comfort in them and that I might also.  Against my better judgment I sit and start reading. Your words grab my heart and release my emotions. My mind starts racing; I must send this article to my son in the hope that your words will help him make sense of the senselessness of what is happening to his mom, since I do not seem to be able to rescue him from his sadness. I must send this to my daughter as I know she will draw comfort from someone who has lost a parent to ALS. And then I cry for myself, something I haven't really done since this all began two-and-a-half years ago. Your description of being wounded pierces me, and I cry again.  Your words resonate within me and shake me. Thank you. Thank you.

I carry one each day only because the good Lord sustains me. He sustains me with His spirit but also through the amazing people He has brought into our lives. Clearly God has blessed you with a gift to be able to convey His comfort, peace, hope and love to those in need. I am grateful He brought you into my life this early morning.

My God bless and sustain you.

D.

Dear Mr. benShea,

In September 2005, we learned that my father was diagnosed with ALS and like most people, I have spent my time searching on the Internet for different information about the disease.  One can find many things out there to read, to scare you, to try to comfort you, etc.  Nothing has resonated with me like the articles you have written for the ALSA website!  I really appreciate how you tell it like it is.    When you wrote about the moving van coming up and picking up your pre-ALS life and driving away, I was amazed at how accurate that description is.

Thank you and keep up the excellent articles.  I look forward to the next one!

Sincerely,

T.

I read your article today when looking on the ALSA website to help a friend whose mother had recently been diagnosed with ALS.  My husband of 32 years, J, died almost a year ago from ALS, a little over a year after diagnosis.  His father died from ALS in 1994.  Although no genetic link was found when he was tested, the negative results of the test cannot preclude a genetic finding because scientists have only discovered one mutated gene so far which links to a genetic diagnosis.  We have three sons and always not far from my consciousness is the fear that one day one of them will be stricken with this horrible disease. 

I was so deeply touched by your article. You are so correct when you say that life after diagnosis is never the same. Although my husband and I (especially J) fought courageously, it is a struggle to have any sense after that day [of diagnosis] that you have any control over your life.  We tried to stay one step ahead of the disease, and J fought and lived life from that terrible day with a determination and still lively sense of humor that I can only say gave courage and inspiration to me and our sons.  I don't know what we would have done without The ALS Association.  They were always so generous and supportive.

I wish I had known of your writings during our "adventure," as J termed it.  I read every book I could find on the disease, on caretaking and later on death and dying. J had wanted to die at home, and we had made contact with our local hospice, but he started having trouble swallowing and next thing we knew he was in the hospital with pneumonia. We tried for several days to ease his pain at home with morphine and a suction device to clear his passage ways, but it was more than we could control at home.  He died five days later at hospice with me, his sons and his brother surrounding him.  It's funny, isn't it, how easily you can relate these most intimate moments to someone who has also experienced the wrath of this disease?

I am sure you receive tons of e-mails and calls since you took your position with ALSA.  Just consider this one more "thank you" for expressing our pain and giving voice to that enviable determination that seems to mount from within when you most need it.

Thank you so much.
SB

Today was a very difficult day for me. I came home feeling scared and crying. My husband was recently diagnosed with ALS, and we are both devastated. He is forty eight years old and a wonderful caring man who I love dearly. I am still saying to the doctor, “I do not believe you.”

We are going to see another doctor for a second opinion. We feel alone and lost at times and noticed the site and what you had written. It brought tears to my eyes. I am sorry for your loss but thank you for helping others. We are trying hard to come to terms with this, but it is truly very painful and hard to do. My friend said to me today, “What would you like right now?” I said to her, “I don't want to be an adult anymore. I want to go back and be a little girl again.” I want to go back to bubble gum and skipping ropes, where the hardest thing in life was to wonder what kind of chocolate bar I wanted. Oh this hurts. I am taking wonderful care of my husband and will continue to take care of him because he is my best friend. Thank you for helping others. It helped tonight to know we are not alone because we were feeling alone in this.

Sincerely,

O

I just wanted to take a quick moment to thank you for the article that you wrote, "The Best Way to Find an Angel Is to Be One."   My father passed away in 2001 at age 58 from ALS after being diagnosed only six months prior.

Though his battle was short, it took an everlasting toll on my family and me. My brothers and I were fortunate enough to be able to spend those last six months along side my father and take care of him until his passing. It's always difficult to put into words the range of emotions experienced during that time, and it's difficult for others to fully appreciate that experience until they come face to face with it.

Your article really hit a chord with me, and I believe it will with others who have faced the death of a loved one to this awful disease. I want to thank you for your words of inspiration and understanding as well as your involvement with The ALS Association.

Sincerely,

FB

****************************

Hello F,

Thanks for the note and kind words.

Sorry to hear about the tough times. I can only hope that you and your brothers hold your dad close even in his passing.

Surely the veil between the worlds is more porous than we might think when we are young.

I tell people, "My dad is dead; he's not gone."

Hang on and hang in F. I know this is tough. And it will never be the same.  But it will be better than it is now.

Promise.

If you ever want to drop me a line, I'm around.

Noah

Noah benShea

My late husband D passed away from this devastating disease a year-and-a-half ago.
He had just turned 43 years old, and he was a good husband and loving father
to two daughters, now ages 13 and 9.  He was never in a wheelchair, but had he
lived on, he would have been.  He did not want a feeding tube; he wanted to go on his own terms in his time and not prolong his suffering.  I knew the time was near because during the last several days of his life, he kept winking at me, and he had difficulty speaking, but he thanked me for everything I did for him.  He told me he had a dream that he was in a mansion with many rooms.  He was a very bright and alert man, and I feel he is in a better place.  It is difficult for me.  I am trying to move on for myself and my children.  I am 41 years old.  For the last several years, I had some anger in me, like “Why is this happening to him and my family?”  I still have no answer to that.  I feel I am coming to some peace in my life.  Do you feel there is a reason for everything in life?  Do we meet other human beings to learn some lesson in our lifetime?  So the saying goes, “There are no accidents.”  This is especially difficult for my older daughter.  Is there any advice you can give?

******************

Dear Lady at a tough place,

Thank you for your note and the honesty of the story, pain, and questions. Fast, easy answers are just that, and you deserve better. Even if it is that life often presents questions for which we will not find answers. And herein is the heroism of daily living.

I am thinking on your questions. I am also thinking on the courage of your husband. Perhaps think on that when your own bravery in the moment collapses as it so often does for so many of us.

My prayers for you and your daughters.

Love yourself. You deserve no less.

Noah

Hello....        

I just finished reading your article in ALSA’s magazine on dealing with ALS.  My husband has recently been diagnosed with ALS after nearly a year of going from doctor to doctor to find out what was wrong.  The emotional roller-coaster we have been on during the last three months has been very much like the 'turbulant air flight' you described.  Until you are faced with something like this, it is hard to imagine what it is like.  Reading your article made me realize that the turmoil of emotions we have been going thru is not uncommon.  It is hard for me to understand how he must be feeling as my emotions are totally different from his.  We are trying to be pro-active and trusting that our faith in God will see us thru this 'one day at a time - one step at a time.'

Thanks for sharing.

J

Thanks for your encouraging article in the fall issue of the ALSA periodical HOPE.

Sincerely,

CC

****************

Thanks C for the note and kind words.

There are no easy journeys on this road.

Here’s to you!

Noah

Noah benShea