I am the woman you smiled at today in the Mexican restaurant. You might remember me, only because I was sitting all alone at a table with a magazine and a glass of sangria. I used to be embarrassed to go to a restaurant alone, but now, with five children, I relish the idea of being anywhere by myself.
You were on your way back from the restroom when you passed me. You flashed me such an unguarded smile that I watched you walk all the way back to your table. Unlike me, you were not alone.
I saw you sit down at that long table with all those loud laughing people. I saw you sit right next to the man in the wheelchair with all the blinking lights on the back. It was the blinking lights that drew my eye. I tried not to stare, but I’d never seen anything like it, and like a freaking three-year-old, I couldn’t help myself. I’m sorry.
Once I noticed the respirator tubes coming from the back of the wheelchair, I looked away immediately. That’s what we do, right? Gawk at people’s lives and then avert our eyes when we actually see something painful. I’m so embarrassed. I know your life is not a roadside accident, and the last thing I want is to be just another rubbernecker. I hope you didn’t see me.
But I saw you. I saw you get up every few minutes to adjust the tubing and suction out your husband’s mouth. I saw you with your hand on his knee, your eyes on those blinking lights. I saw you help him speak and rearrange bags and cases as the waitress delivered food.
I saw you all leave, struggling with the chair and the tubes and the heavy double doors. And for just a second, you looked like me. You looked like me trying to navigate a triple stroller, a diaper bag, and a million backpacks through a crowded restaurant. And then I started to cry.
Because, of course, you are nothing like me.
Our hands may be equally full, but your load is so much heavier. I’m pushing hope and dreams and expectation through those doors. I’m tired of pushing and I’m wishing they’d just walk. I’m sure you’re tired of pushing too, but you know there will be no walking. I’ve got a long road that will just get easier. You’ve got a short road that will just get harder. I sit alone in a nice restaurant, desperate for a little time alone, while you put your hand on your husband’s knee, desperate for a little more time together.
I don’t know how you do it. God, I bet you’re tired of hearing that. What meaningless drivel.
What I mean to say is, I admire you. I admire that you refuse to be hobbled and homebound by sorrow and adversity. Half the time I allow myself to be hobbled by three healthy preschoolers. I admire your ability, in the midst of all that hardness, to smile so warmly at a stranger.
I admire that you came out to brunch in that crowded restaurant on a Saturday even though you knew the logistics would be a nightmare, even though you knew you’d barely have a chance to sit down and eat your food, even though you knew that people would be looking.
I’m sorry I was one of the people looking, but I’m not sorry that I saw you. You’ve inspired me. And I had to look, in order to see.
Karen
You made me weep partly with sadness,but also with gratitude for your insight and ability to share this experience. Thanks Jen.
Jen
Love you, Nana.
Anonymous
This means a lot to me. I am the mother of a son with ALS. We don’t know what lies ahead. His wife is strong, his four children are growing and busy, and we live many miles away, helpless, except for prayers and thoughts.
I know this will be a major issue as time goes on. His faith is strong and he thanks God for every day he has.
Bobbi
My sister shared this with me today…as I am also the wife of a man with ALS, I was touched by your writing and cried a little. Thank you for your words and your insight into my life. I am grateful that you so GOT IT.
Jen
Bobbi,
Thank you. Thank you so much. I don’t know you, but I know you are hoeing a very tough row. It really means a lot to me that you took the time to let me know that I’ve made a connection with you and your life. That’s what I’m trying to do. You are SEEN. And admired.
G. Michael Dominguez
I really needed this one today.
Mike
Best post I’ve read anywhere on the Internet in a long time. Important, too.
My wife died of ALS a few years ago. I’m now involved in the lives of many people with ALS. You’re really found the right perspective. Thanks for understanding and for spreading the understanding.
Jen
Mike,
I am so, so sorry that you lost your wife. I can’t begin to imagine how difficult that process must have been, nor how much strength you must have in order to walk out from place into helping others. I commend you, and I deeply appreciate you taking time to let me know that I’ve helped in some tiny way to make you, and others, feel understood. Deepest sympathy and gratitude.
Shannon
Beautiful. Thank you.
Jen
No, thank you for reading Shannon.
Becky
You just brought tears to my eyes. I am another wife of a man with ALS, and I love you for your perspective. Thank you for looking and seeing, and thank you for sharing. No more tears! Know that you HAVE lightened our load just a little by understanding.
Jen
Becky,
Thank you so much for letting me know that I got it right. I wish you peace and rest and so many blessings.
Allyson
Thank you for this … I am the wife of an ALS patient … Your words brought tears to my eyes and a hug to my heart!
Bless you for taking the time to see us, many hugs!
Jen
Ah! I’d hug you in person if I could!
Bonnie
Well written..yes, we have to look in order to see and really listen in order to hear…thanks for writing this. 🙂
jennifer
I’m the stepdaughter of a woman with ALS. I get so frustrated when people ignore her and talk to me. She’s in there and she’s full of knowledge and experience. She diagnosed her own shingles this morning despite not being able to see it, touch it, or talk about it with me. People deserve privacy, even in public, but it’s also nice to be noticed and considered sometimes, as well.
Thanks for your commentary.
Laura Brown
Love it. What a beautifully written piece. I think many of us have been ‘the person sitting alone in the restaurant enjoying some ‘me’ time’. And if not, at least we’ve dreamed of being that person!
LINDSAY
thank you for your article. My fiancée has had ALS for almost 12 years and it’s been difficult to explain how we feel to others. Your post gives a great perspective to my point of view. Being a mom is incredible, although it’s a different difficulty, please know that you have every right to feel overwhelmed sometimes too!!
Jen
Thank you Lindsay. I’m glad I got it at least a little bit right. I’m sorry for the hard road you are walking, and yet, still grateful that you are not walking it alone.
peter
I have ALS. My wife is the most caring and wonderful person in the world. Because of my disease she has isolated herself from her family and friends because they do not treat her as a strong capable person but as something that needs pity and help. They have forgotten who she is and see her as the “poor wife of a dying man”.
What you saw was what my love does for me every day. She loves me despite the weight that I have become. We go places and do things, we love to be out together enjoying what we can while we can. She is the same person as she always was.
ALS is one of the worst nightmares that anyone can imagine, it devastates the individual and their family. My wife is the light that penetrates through the darkness of the nightmare and brings me comfort and relief. You caught a glimpse of that from another wife.
Thank you for sharing.
Jen
I’m crying. Again. What a love letter to your wife! Please, share this beautiful comment with her, and not just me. Some people are lucky enough to have that kind of love even in the midst of unthinkable adversity. Some never have it, even in the midst of tranquility. My heart goes out to, and out with, both of you.
Bronwen
My husband is power wheelchair bound, has the breathing machine that reminds him to take a breath, and the ultra cool computer he uses to speak. He runs the computer with his pointer finger and drives the wheelchair with his thumb. AmAzInG! We go to dinner and I eat alone because he uses a feeding tube, we go out to church and have to take care of toileting in the custodian closet next to the brooms because that is the only space large enough ti fit his cahir into, we go to our sons baseball games and I am forever hopping up to care for him. I see the looks of curiousity – from adults and children alike – when we are out and about. The children ask about his space age machines of wonderfulness and I answer honestly and openly. How else can I inspire the next generation to grow up to be the doctors who will find a cure for this disease that currently has no treatment and no cure? How else will they know how amazing the machines are and what they do? This letter, this is wonderful, too. Thank you for seeing us – the caregivers. ♡
Jen
Ugh Bronwen,
Your positivity shows me just how far I have to left to come in handling adversity with grace. Believe me, the people looking are amazed by YOU much more than by the machines. Thank you so much for sharing this with me.
Stephen
You are right. You have no idea what my wife is facing with a career, a kindergartener, a three year old and a husband with ALS. But you stopped to consider it and to acknowledge her strength and her struggle. Thank you.
Jen
Stephen,
I wish blessings upon you, your amazing wife, and your sweet little children. Peace and joy, my friend. Thank you for taking the time to write.
nidhi umrigar
My father is diagnosed with ALS, I can relate to letter and your words make me feel my moms pain and efforts. Thank you so much for writing and sharing it .
Jen
Nidhi,
I’m so sorry about your father’s illness. I wish you and your family strength and peace. Thanks for reading.
Keiren Dunfee
Love this beautiful and heartfelt piece. I remember being in a restaurant with my 32 year old brother, who had ALS and was wheelchair bound. It was a special occasion just having him with us. The people at the next table never stopped complaining (loudly) about the waitress, their food, the service. All the while looking at us for confirmation of their dissatisfaction. Thank you for being one of the people who “get it”.
Jen
Thank you Keiren. I have such profound respect for you, and others in your situation, who walk that brutal road with grace. Thanks for taking the time to write.
Shartrina White
Thank you for seeing and understanding, and thank you for writing your thoughts in a letter. You brought tears to my eyes. I too am the wife of a man, my hero, who has lived with ALS for 15 years, 11 years on a ventilator.
May God Bless You!
Jen
No, thank you. Thank you for doing the beautiful work every.single.day in the face of such hardship. Your family is my prayers.
Amy
I’m also the wife of a man with als. We are both 30 and find things like eating out are the places were people do stare the most.
This is so beautifully written and it really does make a difference to know you thought about this and you understood…. Thank you x
Ps i document out journey on my blog x
Jen
Oh dear God. Thirty? Thirty? I’m tearing up at the injustice. Please, let me know where to find your blog, and thanks for taking the time to read and comment.
Amy
Yes he’s had it 2 years now, but it was diagnosed early thankfully!
Thank you, you can read it at aimsui.co.uk 🙂 xx
Monika Lewis
So beautiful. I lost my husband in June to ALS at the age of 42 after a 2 1/2 year battle with ALS. He was the light of my life and the strongest person I have ever known in every sense of the word. It was incredibly devastating, but it taught me so much about life and what is and isn’t important. Thank you for taking the time to write this. I think we all need a reminder from time to time just how beautiful and fragile life can be and how we should never take anything for granted as life can change in a matter of moments.
Jen
Monika,
I am so so sorry. How devastating. It sounds like he wasn’t the only strong one. Thank you for taking the time to share.
K
I, too, was the wife of a man with ALS, and 3 years ago, at age 35, I became the widow of a man with ALS. What you have captured here is so devastatingly accurate and beautiful, and something I felt no one noticed during the 8 1/2 years my husband “lived” with ALS and I cared for him. Bless you for bringing this to light. We also have children, both born while he had ALS, so I completely understand that chaos too! 🙂
So grateful for your sensitivity. Your smile and caring eyes meant absolutely everything to that woman that day. I know, because I was once her.
Jen
Tears of gratitude and grace. That’s all I’ve got. Peace be with you, friend.
Meg
2 years ago, at 58 years old, my mom lost her battle with ALS. She didn’t want people to pretend they didn’t notice she was sick. She wanted them to acknowledge it so she could spread awareness about this awful disease. Thank you for your perspective. Thank you for your insightful thoughts. Thank you. It made me cry.
Jen
Well, I’m crying right there with you, sister. God bless.
Kelly
This brought me to tears because you are so right. It is hard to watch my parents in this same way especially because it is my Father helping my Mother. She was doting wife who has become helpless as this disease steals her body muscle by muscle. Thank you for understanding the trouble with ALS: it just gets worse. In cancer patients we pray for successful radiation and surgery, in those who lose a limb we pray for successful learning of new lifestyles but in ALS all we can pray for is peace and a release from pain.
Michelle
Thank you for your humble and loving post. My brother has ALS. He has a loving wife and two great daughters, and friends from all over who would walk through fire for him. He was an avid skier, baseball player, fisherman, hiker, canoer and adventurer. My brother is a hardworking family and career man. He’s a salt of the earth, modest, solid man whose body is being taken from him week by week. Instead of planning his retirement, he has to arrange his affairs. Why do his wife and daughters have to plan for him not being around? The unfairness is devastating. There is no cure., 75 years after Lou Gehrig.
Donna
Wow, thanks so much for sharing that! I am also a wife of a wonderful man battling ALS. We try to carry on with life as best we can but there is so much more involved in “going out”. He is wheelchair bound and has a feeding tube but he still enjoys outings. Even a trip to the grocery store is a “road trip” for him. Our faith and love for each other keeps us strong but there are tears as well. Thanks for caring.
Julie-Ann Searle
Great letter and I agree with everyone about you seeing the situation. My husband has had MS for nearly 20 years and is now confined to a wheelchair. Maybe not as debilitating as ALS, but he still needs all the hands-on care. But we have just come home from lunch at a restaurant where we met a group of fellow MS sufferers. We have people with differing degrees of the disease. I don’t know if it is because we live in Australia or not, but most people are very understanding.
Jen
My uncle had MS for 25 years. He was wheelchair bound for at least 20 of them (I was a child when he was diagnosed, so I don’t really remember) but we was remarkable. He had a very aggressive form of MS, and yet, he stayed active and positive all the way up to last couple weeks of his life. He was an inspiration.
Betty
My husband had ALS for 7 years. They were hard but happy years. We were lucky to have positive, joyful attitudes. Our family gathered around us and helped SO MUCH. We were married for 55 years. On November 2, it will be 2 years since he’s gone. I miss him and his support.
Thank you for your observation and beautiful writing skills.
Cynthia
I admire each and every one of you. My brother had ALS and was actually diagnosed in November of 2014. Sad to say his progressed very fast and he passed on January 20th this year.
It was very overwhelming taking care of him and my dad at the same time. My dad has alzeimers and sad to say he doesn’t know his only boy has passed away.
I couldn’t just sit and do nothing, I did what I felt I had to do by taking care of my brother to lift some of the burden off my mother.
I never thought I’d have to touch my brothers private parts bit I did what I had to do.
He passed away at the age of 48 and I sure miss him very badly.
Praying that a cure is found because nobody deserve to go through a terrible disease like this. May God bless you all!
Barbara
Today must be the day for touching posts; thought-provoking, heart-wrenching posts that open my eyes to what I have in front of me! Your “letter” is beautifully written and goes to the heart of what we have – or don’t have – in our marriages and other relationships. My husband has dementia and is VERY hard of hearing; it makes communication very hard; and I get frustrated with him and out-of-sorts and sometimes have a bad attitude with him…but I HAVE him unlike some of these folks who commented after reading your words. They are dealing with so much more than I could ever even conceive of having; and I pray for each and every one of them in their “journey”… and I thank God for giving you the words to share that have touched so many here!
Thank you; and blessings to you and your family.
Terri
Im also a caregiver to my mother for 15 years..this reminded me of when i would take her out.thank you! It is a horrible disease.
Terri
Im also a caregiver to my mother for 15 years..this reminded me of when i would take her out.thank you! It is a horrible disease.
Anonymous
Jen,
Thank you so much for the beautifully written “letter”. My husband was diagnosed with ALS two months after we were married (second marriage for both) he retired at age 52 with 30 yrs as a Police officer / Detective to travel on his motorcycle before becoming incapacitated. I left work later that year to spend time with him and help him accomplish some of those traveling / riding goals. I learned to ride a motorcycle, and eventually we traded his 2 wheels for 3 … a Harley Davidson Trike to which a wheelchair carrier was attached. Adjustments were made to the bike so that he could still drive and lead charity rides for our local HOG Chapter as long as I rode with him. You would not believe the looks we got from others when his wheelchair was placed beside the bike and I helped him stand then with some assistance lifted him on to the bike making sure he was in alignment to drive …. Then I loaded the chair in the carrier and proceeded to ride with him. He has been living with this horrible disease for 5 1/2 years and has been totally wheelchair dependent since 2013. His last ride was to raise funds for our local ALS Clinic and for Kids of Childhood Cancer. He doesn’t go out much any more but when we do and people stare or look we both always respond with a smile and a Hello. My life is like yours, I am a caregiver (Mother, Grandmother, Nurse, Teacher) our daily chores are just a little different but everyday is a Blessing. Blessings to you and your family.
Angie
My husband just past away yesterday at 6:19am after a 1&1/2yr intense battle with ALS. He was here at home surrounded by family. We were married for 21yrs. He was 41. I don’t have it in me to write more but I thought could and that’s why I started sharing. Sorry…..
Jen
Dear Angie,
I am so terribly sorry. My heart is with you and your family.
keith
i have been married for two years on august 31 2015 and got als about 20 months ago i can still walk but my right arm don’t work and now its working on my left arm i lost my job because i told them i had als two days later i got fired after 18 years my wife still works every day but we are still losing our home and having to move in with my mom she is 72 its going to be so hard for the two woman i love the most does anybody know how to tell them what there up ageist and how to handle it i am not one to give up so i am going to fight to the end and jen i thought your letter was very touching
Jen
Keith,
I’m so sorry! I’m assuming you’ve applied for disability through Social Security? I’m not very informed about ALS support groups, though someone has mentioned PALS… perhaps you can find some help and support there? My thoughts are with you, friend.
Cheryl Tracy
Trying to write through the tears…..you are such a special individual to not only “see” what others cannot, but to be able to share in such a beautiful way the trials people are facing. ALS can be such an isolating disease. People are ok in the beginning, but as things start to deteriorate, most are uncomfortable and don’t know what to say or do. My husband was diagnosed in 2004 and lived for 6 and 1/2 years before he passed at the age of 69. He always said we were so fortunate that it struck at this stage of our lives. Our children were grown and married, though he “walked” our youngest daughter down the aisle in his wheelchair. Our two older girls each had blessed us with 2 grandsons. I kept thinking, where are the granddaughters?!!! It took over 8 years, but finally our last daughter produced twins, a boy and a girl. Not to get into an even more lengthy post, I will just say that one of her dad’s insurance policies paid for those precious babies. What an amazing gift he left for us!!! Ed had the most positive attitude and always will be remembered for his smile. I can’t say that I never felt frustrated or overwhelmed, but I had the most amazing support group in Joan Dancy & PALS, family and friends who were always willing to help and a few of his friends who never stopped coming to visit even while he was only able to communicate with his Dynavox by blinking his eyes. He always said, LIFE IS GOOD!!! AND IT IS!!!
PS….I am watching those 22 month old twins 3 days a week. I am turning 71 next week, I am often tired, I laugh”a lot”, and I wouldn’t trade it for anything! I know you have your hands full, but you are obviously a person with love and gratitude in your heart and many, many friends you have never met, but who love you in a very special way. ??
Jen
Cheryl,
Thank you so much for sharing your story. What an amazing thing to leave as a legacy! I wish you and you family (especially those twins – I’ve got a thing for twins) the very best. #seegood.
Rebecca
Incredible letter, puts so many parts of life in perspective. Now to go dry my tears before all my coworkers see the mascara dripping down my cheeks!
Connie
A friend of mine posted this letter on my timeline. My husband died on October 19, 2015 from ALS. My reply to her post was that the man in the wheelchair is still the man who I fell in love with 26 years ago. He still makes me laugh and still brings me joy. Yes the road was hard. I find now that the road without him is even harder. He never once said why me and never complained. A comment he once said was “you know the piece of candy that you find in the bottom of the bag that is all broken and crumbling? Yes, but it is still chocolate in the inside. I miss you Tommy.