Who Do You Attract? ALS and Friendship

Saturday morning, September 5, 2009. As I pulled my weary body out of bed, I reached for my cell, finding a stream of unopened emails. I scrolled down, reading, “Call me when you get this.” My heart sank. I didn’t need to dial the numbers to know Sharon was dead.

I met Sharon in elementary school. I couldn’t have been more than six or seven. She had a strong personality, even as a child. Stubborn. Knew what she wanted and wasn’t afraid to ask for it. Two years ago, her brother called to deliver the news of her ALS, more commonly known as Lou Gehrig’s disease. She was 44 and mother of three. Sadly, life as working mothers had forced us to lose touch, absent the occasional Christmas card or accidental meeting. But despite that, she wanted me to know.

At our 10th high school reunion.

At our 10th high school reunion.

Even though I hadn’t seen her in six years, her smile greeted me with all the warmth of someone I saw every day. Only months after her diagnosis, she was already dependent on a walker. Despite the obvious decline, denial was everywhere. We didn’t broach the subject of her disease or what it meant. I simply cleaned her kitchen, made her laugh as much as possible and played with her young children. As we talked for hours, catching up on our lives, I puttered about her house, being her arms and legs to do her bidding. The joy of being together was exhilarating.

At the end of the day, I arrived home exhausted but still had my own family to care for. As I cooked dinner, I looked at the timer. Ninety seconds before the pasta was ready. I raced to the bathroom and returned before the buzz went off. Seems simple, right? Except just hours earlier, I watched Sharon take a total of 25 minutes to walk to and from her bathroom. I drained my pasta, crying. Everything I did that night, no matter how simple, was something Sharon could no longer do. Her life was now full of dependency… my greatest personal fear.

Although I lived almost an hour away, over the coming months, I helped care for her whenever possible, always spreading a constant stream of laughter through her house… my forte. Each time I’d arrive, I’d see a steady decline – the wheelchair being used more often, and then her hands betraying her. I cut her food and fed her. But the task I remember most was taking her to the bathroom. Allow me to digress: When Sharon and I were in the third grade, we went to her family’s lake house. We were changing into our swimsuits, when she asked me to turn around. I wanted to laugh. We were so young, and as insecure as I was, I was never shy about my body. Besides, I was all of eight. What was there to hide? But that was Sharon: Conservative, modest and stubborn to the core. You simply didn’t deny Sharon a request, even back then. So, here I now was, helping her with the most personal bodily function, yet trying to allow her dignity. As I wrapped my arms around her, lifting her almost lifeless body from the wheelchair, we looked like a couple, slow dancing. I held on with one hand and slid her pants down with the other. She giggled and whispered, “Jeanne, come on… at least you could romance me a bit first.” We laughed so hard I almost dropped her. She’s lucky I’m a mule.

That moment got me thinking, who would wipe my ass if I couldn’t? Have you ever pondered the notion of not being able to do the simplest of tasks? I now look at my friends and family wondering which one of them, if any, would be humble enough to serve me.

Sharon always said, “Who ever thought when we played Barbies, I would need you this way? ” Who ever thought, indeed.

I was usually alone with her, but as time went on, the family required more caregivers, not just for Sharon, but also for her children. Sharon’s posse of supporters, live-in au pairs, nurses, and her neighbors would flutter in and out. I no longer spent hours cleaning her house, as she had people for that. My time with her became a luxury of laughter and remembrance.

My job now was to bring Sharon any friend from the past she wanted to see. Her first request was Julie, a woman neither of us had seen in almost 30 years. I found and delivered the talented and self-proclaimed “crazy artist.” Upon pulling up to the curb, Julie handed me a small bottle of vodka, cracked hers open and downed it for anesthetic. She didn’t yet know there was no need to be numb to see Sharon.

We entered to meet Anne-Marie and Joanne, Sharon’s neighbors. I’ll have to save the entire, fantastic Julie story for a longer installment, but suffice it to say, when Joanne left, she pulled Anne-Marie aside and said, “Don’t you dare leave her alone with them… I’m sure they have bongs in their purses!” Anne-Marie warmed up to us though, and by the end, we had her laughing in hysterics and looking forward to my next visit, and to whomever I brought through the door.

Most people assumed visiting Sharon was depressing, but I only cried once. Just once. I had called another childhood friend, Paul, who lived four hours away and put him on speaker, allowing me to translate her facial expressions as the ALS had taken her voice. When I hung up, I expressed how much he loves her and hopes he can get here “before it’s too late.” It’s the only time I ever acknowledged someday we’d be without her. Neither of us could hold our tears back. However, I felt I betrayed her that day by permitting reality to seep into our cocoon of love. I never let it happen again.

Despite not being able to talk, Sharon was a marvel with her ability to communicate. She had this chart to spell things out with… we referred to it as the “damned alphabet.” Between her alphabet and her intensely expressive eyes, she could “talk” for hours, and truly LIVED.

She was still Sharon, just trapped in a body that failed her.

Stubborn. Forever stubborn, she asked for what she wanted. She spelled out “R. I. N. G.” every time I was there. It meant one thing: MY ring. She wanted it on her finger. So, I would dutifully take it off and place it on her hand. Each time, she’d hope I’d forget it, but I wouldn’t. I’d slip it off, joking she can’t keep it. But each visit, I would place it on her finger, until one day, I left it there. This ring is one I had worn daily which literally feels like a hug on your finger. I placed it on her hand and leaned in, “When you feel this, know I’m here with you.” I knew the next time I wore that ring, Sharon would be gone. I touched my finger for days, feeling the nakedness, but hoping she was feeling my love.

Always waiting for word of Sharon’s health, I slipped back into my life with my own family. While at the same lake Sharon and I swam in as children, I got an email on my cell: “It’s bad. She’s scared.” My teen daughter saw me crying… not something I do publicly… grabbed my hand and cried too.

I went to Sharon immediately. When I arrived, her four crazy, nurturing, beautiful friends who I heard so much about were all there. Never having been in the room at the same time, we immediately embraced, tears flowing… but not in front of Sharon. Never in front of Sharon.

Then something magical happened. The five of us sat with our unresponsive, dear Sharon, telling stories, talking to her, laughing, and reminiscing about each of our roles in her too-short life. We took turns wearing my ring, finally placing it back on Sharon’s hand. What we learned that night is, when each of us took care of her, she’d give us the ring to wear. She symbolically bonded us, without us even knowing.

Full of emotion, one of the girls declared, “We need to make a toast” and ran to her neighboring house to retrieve wine.

These incredible women turned a death vigil into a celebration. Sharon’s brother, parents and husband came in. We toasted her. Toasted her life, her love. Toasted mothers and friends. We laughed, took pictures and lingered for hours. Finally, we laid our hands on Sharon’s, with my ring prominent, and took a picture. We kissed her and said our goodbyes. Anne-Marie sang a song in Sharon’s ear from Wicked:

“I’ve heard it said, that people come into our lives, for a reason, bringing something we must learn. And we are led, to those who help us most to grow, if we let them. And we help them in return. Well I don’t know if I’ve been changed for the better, but… because I knew you, I have been changed for good.”

It was the most beautiful night. A celebration of life. Sharon passed five days later.

The story of Sharon isn’t the story of a woman who tragically died young, but rather one of unique and rare friendships. She brought five women together who were strangers. She made us one. She united us in a way that changed our lives. I sit here typing, watching my fingers fly across the keys and seeing the ring all of us had on our fingers at one point, if only for the symbolic gesture of feeling closer to Sharon. Because we loved her, we now love each other.

Since her death, so many people have said, “Jeanne, you’re such a great friend.” They’re missing the point. Sharon was the great friend. When she would relentlessly thank me, I would jokingly drop to my knees, bow and say, “It is an honor to serve you.” Giggling, she knew in her heart, I meant every word.

It’s not that this group of woman who served Sharon were special, myself included. It’s that Sharon herself had the ability to attract selfless, humble people to her world. It speaks volumes of her character.

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Think about your friends. Think about the people you follow on social networking sites. Think about those who have passed through your life. Would you wipe their ass? Do you think they would wipe yours? And more importantly, what kind of people do you attract? Selfish or selfless? What is the purpose of your connections with people? Is it for personal gain or for love? If you can answer those questions, you might learn a lot about yourself… just saying.

Sharon’s story is one of my works in progress.

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42 thoughts on “Who Do You Attract? ALS and Friendship

  1. My keyboard is wet with tears. A beautiful story, told beautifully. Though I've barely known you, I feel I know you well. Plus, I'd be honored to wipe anytime. (love the picture). Eagerly awaiting your next enlightening.

  2. Wow. What a powerful post Jeanne. It's not easy to articulate such strong emotions in words. I feel like I've had a peek into your past. You were lucky to have Sharon, but she was also lucky to have you. I'm glad we're friends. Even if it is just 'words.' Thanks for sharing this story.

  3. Jeanne,That was a beautiful and touching post and while I have penchant for long comments, there is nothing I could add to this in any way shape or form. Thanks for sharing this wonderful story of at least two wonderful women, you and your friend. Matt

  4. You've captured this beautifully, Jeanne. I feel like I know not only Sharon but you, too. What a wonderful tribute to friendship and love. And to Sharon. Thanks for touching my heart today.

  5. Beautifully written. I'm still trying to put into words what I am feeling after reading this. It touches me in a place that no one understands unless you've also had to watch someone you love pass away. Thank you for sharing this piece of your heart with us.

  6. Damn you for making me cry. What a wonderful tribute! And even though this isn't the time for jokes, please know I'd totally wipe your ass for you. I'm so glad I met you. XOXO Amie

  7. So much for bothering to put on makeup today. At least I'm in the studio for the rest of the day, and no one can see my puffy, red eyes. Everyone should be so lucky to have a friend like you. I think the best thing you can do for anyone is bring laughter to their lives, no matter the situation. I can't wait until the day we get to actually drink together in person.

  8. I am so deeply touched by your responses. You're all making me cry more than writing the story did… well, almost. I suppose the response means I have to really finish this novel. This was just the motivation and support I needed. Humbled.xoxo

  9. Incredibly moving and beautiful, I remember when you were going through all this and I admired you so much. As someone who ended up a caregiver themselves, the bathroom scenes bring a smile to my lips as I think of me wrestling with my father before he died, and my mother now. I hope no-one ever has to take care of me, though I know my kids would when they're older.

  10. It's shows how good of a person you are. i would do anything for someone i dearly love. and i will always hold on to those people. it wouldn't matter how far away were apart or what kinda life were living i cannot even think to let go of them. i think your an amazing person. a dear friend of all !! god bless you.muchlove <3

  11. Amazing story, beautifully written. A true tribute to friendship. Thank you for taking the time to so eloquently and honestly share your memories of your friend. An excellent reminder of the power of both love and laughter, even amidst great sadness.

  12. I have heard bits and pieces of this story and am so glad to hear it all, full blown!Jeanne, as I've said before, you're a terrific writer capable us putting us right there, in the middle of the room. Right there with you. One of the things that strikes me most when reading this story is how Sharon's entire life of goodness was so greatly confirmed before she parted. She could look around and see the mark she's left and know full well that it will go on even after she's gone.As for your questions at the end. You know I attract selfish bastards into my circle. Rude, foul, lying little sycophantic lickspittles who suck the life out of me. But I also attract people like you and Roger and Danny… My whole life has been that way, online or not.Thing is, no matter how wacky my circle gets, I know who would wipe my bottom if my health took a downturn. I know who would and have no doubt. I'm extremely lucky to know that I will not be alone. Some people can't say that with conviction. I'm very lucky to be so unconditionally loved. I certainly don't take it for granted. I also often thank my stars that I can walk and talk and hear and all the things so many others can not. I should use the privileges more…many of us should. Ah yes.As for the purpose of meeting people….the why I do? I can't help it.I'm a people loving misanthrope. Thank you for the moving piece. Thanks for sharing. Thanks for going to Sharon's and for going again and again. Send me the ring!

  13. First of all Tina, thank you so much for being so diligent in posting your comments… and beautiful comments they are! xoOne of the many reasons I wanted to post this story and share it on Twitter is simply because so many of you helped me during this horrific time. You were "in my pocket" as I sat vigil by Sharon's bedside, as I held the hand of her crying mother, as I took her husband in my arms and told him he'll get through this… you were all there, safe in my pocket, holding me up… even if you didn't know it. So, who better to share this story with than all of you? I only hope I can be there for all if you should you need me.

  14. Am waiting for Hubby to come home and was going to eat dinner without him, but I think I'll wait. Thanks for sharing this wonderfully touching story and for some much-needed perspective. (Big hugs!)Cecilia

  15. Great job Jeanne!! That was a beautiful night and one I will never forget as long as I live. Sharon's story is one that I hope has changed the lives of many people, I know it has changed mine for the better. AS the song goes, "..because I knew you, I have been changed for the good." We have all changed for the good by sharing in her incredible struggles.

  16. jeanne,you are amazing.this piece was devastatingly beautiful… your perspective on death and dying, on life and living (because, as you so expertly show, they are irrevocably connected) is rare and amazingly soul-affirming. sharon gathered herself a menagerie of kindred spirits throughout her life, and her story (which is your story, which is their story, too, of course) is just…. unforgettable.thank you.so so much.for sharing sharon, for sharing your self.<3

  17. I am crying as I type. I lost my best friend of 33yrs when we were 36. I was 52 on Saturday and I miss her as if it was 5 minutes ago. It is sad to lose a friendship so strong, but what a blessing to have had it in the first place. I feel for you but am so pleased you found each other and could share the precious hours you did.

  18. How sad yet beautiful. I can totally feel the love amongst you women. You are all so fortunate to have had Sharon and Sharon was so blessed to have had you guys.To have loved, you will never really lose.Thank you for sharing Jeanne.

  19. I can stand in this emotion. I understand, if even through a different disease, that is all the same.It becomes of the ability to give them the joy of laughter. When we give, it is so hard, because we just want to say why. The warmth would be all we want to take with us, so we extend our whole being. You took me right there with you and your beautiful Sharon. My tears are uncontrollable, in a way my words could not contain. I hope the energy expended to this story grows into something more …

  20. I discovered your blog through your blip account through someone I was listening to who was listening to you. I am glad I clicked on you and came to see what you had to say.This is so beautifully written and I could feel who Sharon was through your words.I have lost a few friends that were that dear to me, both through natural death and unfortunately through "human nature" death. Reading what you had to say really pulled some of feelings out of the gutter and I appreciate the time you put into this. I look forward to going through and reading everything else you have had to say.

  21. I also lost a dear friend to ALS but, unlike your friend, Margueritte never told me. I didn't learn about her illness until after she was gone. I like to think I would have been strong enough, physically and emotionally, to have helped her through her final days. After all, she was the one who took me and my son in during an especially difficult time and fed us, did our laundry, and reminded me every day I was a strong woman. She was one tough cookie and she was always brutally honest, something not many people appreciated, but I did. She gave me love, but she also gave me the swift kick in the keister I desperately needed. The fact that she didn't call on me for help is something that bothers me to this day. But she was never one to ask for help. Ever. Perhaps she didn't want me to see her vulnerable and weak, but I could never have thought of her that way.

  22. Brenda, I'm so sorry for your loss. I can only imagine how you feel. For me, the greatest gift Sharon did give me was in asking for help. It's not something I do in my own life. She gave me the gift of serving her. It's amazing how comforting that was. But not everyone can handle being that vulnerable. Margueritte sounds like a beautiful person who loved you deeply. Amazing how one person can touch a life so intensely.

  23. I had to come back to say something. I had started my blog a few years ago and haven’t touched it since. It’s a challenging few years and I’m being continually refined.

    In the past year I’ve lost 3 friends. One, most recently, to leukemia. We had known each other since we were 13 years old…37 years. My heart is still broken.

    I’m glad I had included you in my attempt to start a blog and this post. It touched my heart to read it again.

  24. This was hard for me to read, as it brought once again raw emotions surrounding my mother’s agonizing death. Being a caregiver, and then the companionship at a beloved’s deathbed is something that profoundly changes you. As always, you have captured this with insight and honesty. I’m not the ass wiping type (I learned this while caring for mom), but you can always count on me for a listen. It’s a privilege to know you, dear Jeanne.

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