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What Is Fair?

by Sarah Coglianese

Receiving an ALS diagnosis when I was 33 years old was the biggest shock of my life. Or rather, it wasn’t a sudden moment of shock, but a continuous series of them, starting the first time I saw a neurologist to address all of my clumsy and embarrassing falls. He peered closely at my twitching arms and used the words “ALS” and “worst case scenario.”

Sarah and family, October 2014

The shock ebbed and flowed for the next 6 months, through rounds of testing, while I waited for an official diagnosis, and it flared up when the diagnosing doctor told me to “hang in there.” It flared its hardest when I looked at my two-year-old daughter and tried to comprehend what was happening to us, and when I watched my husband lie on his back and cry.

Amyotrophic Lateral Sclerosis is a disease you do not want to get. It shuts down your voluntary muscles: legs, arms, throat, lungs. The average patient dies within 2-5 years.

It’s still shocking now, as I type this from my wheelchair, with cramping fingers, while a Bipap machine breaths for me, as it does for at least a few hours each day. How can this be my life? I used to be a runner—once I ran a marathon next to a man who was juggling bean bags, both of us laughing as we crossed a bridge and I called him a show-off. My legs worked so well then.

I recently wrote (but never sent) the following letter to a friend of mine who has been living with ALS for almost 10 years. He’s an outlier, a survivor. So far, I am a survivor, too.

UNSENT

June 8, 2015

Dear ____,

I was thinking of you today, and thinking of myself, too, in that sort of unattractive, self-pitying way I sometimes do. Don’t you just want your life back? I want my life back so desperately today. I realized something recently: spontaneous acts of affection are slipping away from me. Not all intimacy, that’s not what I mean. But the little things, the things that feel much bigger once they’re gone. To stride across a room and embrace someone just home from a trip. To reach out and squeeze someone’s hand, a quiet connection. Even to completely and totally invade someone else’s personal space while you’re watching television, so that for the duration of the show, you’re not quite sure where you end and the other person begins, and you start breathing at the same pace because it’s just easier that way.

If I could have full command of my body again, I would positively spin across the floor when the front door opened. I would take a bath, my toes flexed and my hair spreading out behind me like a mermaid’s. I would stand in my closet getting dressed, and I would pile my wet hair on top of my head in a bun, and I would pour two glasses of wine.

I miss my life. You know what I’m talking about, ____. There’s plenty to be happy about still. We do make the best of things. But right now I’m tired of compromising. And you’ve been doing this for so long. How? How do you keep your frustration from spilling out, forcing the ones you love most to back away so they don’t drown in it?

I still have my little person. She’s small enough to crawl into my lap, innocent enough to declare her devotion daily. I have some form of the flu right now, and when I told her I was sick, she smothered me with kisses. She tucked covers over me and said she hoped I was comfortable. Then she asked me when do parents die? And I almost died right then.

My whole body hurts with this stupid flu thing, and I can’t remember, are you supposed to feed it or starve it? It hardly matters, all food looks and sounds horrible. Even ice cream. The situation is obviously dire. Someone told me that when you’re sick (like with the flu, not with ALS), you regress emotionally and begin to doubt everything. I know I’ll feel better soon, but I’ll still have ALS, so I can’t muster up a whole lot of enthusiasm for the better days ahead. Then again, that’s probably the regression talking.

1st Mother’s Day

Scarlett and I went to the Botanical Gardens in Golden Gate Park last week. We are just the right height for each other, and we strolled among the flowers and the trees, spotting turtles and fish in the small ponds. She raced around a fountain, and wandered off the path to places where I couldn’t go, running back as soon as she lost sight of me. She said it was like the secret garden, which we’ve recently read. But in that book, the boy in the wheelchair gets up and walks. He lives, maybe forever. She doesn’t care; in her mind the day was perfect, and really, I felt that way, too. Her face was covered in pretzel salt and I took pictures of her in front of yellow flowers, so brightly bunched, they barely looked real.

But then, my husband. It’s not his fault that I’m stuck in a chair, that I can’t put my feet all over him while we watch Mad Men. He probably never really liked that anyway. But I did. He leans over now to kiss me and my arms won’t reach up. That’s not his fault, either, so I hope I’m making the right point here. But even if no one is at fault, these stolen moments, we need them more than ever. Isn’t it usually those little connections that help get you through something much bigger and scarier?

I’ll stop short of saying it’s not fair. What is fair? I didn’t expect a fairy tale, but I didn’t expect this reality, either. Enough. I hope you’re doing well today. I hope you’re taking a walk with your dog and looking at the city and thinking that life, while quite different these days, is still worth living.

With love.

 

Sarah and Scarlett, 2015

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There is no cure for ALS. With your help, we can change that:

Sarah recently created a fundraiser called #WhatWouldYouGive that will help people understand just a bit of what it feels like to be stripped of these basic abilities. The things that most of us take for granted.

Inspired, a group of Sarah’s former coworkers in publishing—at Avalon and Perseus Books Group—have started a #WhatWouldYouGive team fundraiser to raise money and awareness for ALS research. The majority of this team is made up of people who don’t have ALS. People who are giving up an ability for a short period of time, to help raise awareness of what ALS is and what it does.

With more attention and funding, we can find treatments and an eventual cure for ALS. That’s why our team is raising money for ALS TDI, the largest nonprofit biotechnology organization dedicated to developing effective treatments for ALS.

What would you give to stop ALS? Please help by donating to ALS TDI and advancing ALS research. #whatwouldyougive #letsmakeALShistory

Join us. Find out more and donate, today:

https://www.razoo.com/story/Perseus-Books-Fundraising-For-Whatwouldyougive

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Sarah Coglianese was diagnosed with ALS in 2012 at the age of 33. She is a writer who has been published in The New York Times, Redbook Magazine, and ScaryMommy.com. She blogs regularly at speed4sarah.com, a site dedicated to raising awareness of ALS through the faces and stories of people living with the disease. Sarah lives in San Francisco with her husband (who rarely cries) and their 5-year-old daughter, the feisty (and very helpful) ruler of the house.

 

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9 Comments on What Is Fair?

  1. Thank you for sharing your story. Deeply touching.

  2. I follow you on your Blog Sarah. Keep fighting through your powerful, blog, publications, anywhere you can bring awareness to ALS. Always in my thoughts and prayers.

  3. My mind immediately went to this post from a dear blogging aquaintance whose voice I miss like mad. Your words touched me deeply.

    https://toddlerplanet.wordpress.com/2011/09/23/its-not-fair/

  4. Firstly I am so sorry for hearing your story. But what a brave young woman you are for sharing this with the world. I understand how you feel more than you know. Your story mimicked mine nearly five years ago; only DRs told me I had Progressive Bulbar Palsy a rare form of ALS. It has a life expectancy of 3 mos to 3 years. I didn’t believe the diagnosis. So I continued to see specialists 30 more until I finally say an ALS MD specialists from Harvard. She ran her tests including all of the Nerve conduction studies. When we were finished she said to me you know what is wrong. But first of all You don’t have ALS. Go see this doctor. And she handed me a name and I called right away. And sure enough She agreed with my original diagnoses I had late stage chronic Lyme disease. And if you wouldn’t have seen me when you did, you would have been dead within 3-6 months. Lyme Disease is called the great mimicker and it mimicked so many diseases I can’t even begin to tell you here. And while I don’t want to give you false hope and say to you that you don’t have ALS. I want for you to fight this disease so you have as much quality time with your daughter and husband. But part of the fight is to ensure that you have exhausted all of your options. Doctors make mistakes. I was reminded about that over the course of the past two weeks while in the hospital again, this time for a serious heart problem where the diagnoses were all over the board and my cardiologist was on vacation. I was transferred to my hospital, it was full so the ambulance was reverted to another hospital in the area. Long story short. Had I listened to the cardiologist on-call I might have died because he had misdiagnosed me and never had been in contact with my doctor like he said. Thank fully one of the others was. So my question to you is have you considered you may have Lyme disease? After all the grief I went through and misdiagnoses. I have late stage Lyme disease. After all the research I did about ALS and Lyme, Many studies have been published that indicate the brains of those who had died of ALS actually had spirochetes in their brains and throughout their bodies. If only they would have been seen by an Lyme Literate physician either an ND or MD. Many studies I read about both diseases when doing my research found that 95% of all ALS cases actually had Lyme Disease. This is not to say that ALS was responsible for their deaths but that 95% of the cases Lyme was present in their brains and the probability for a misdiagnoses was great. While these patients died, they most likely died from Lyme disease and Not ALS. These studies suggest the patients had Lyme disease (and if treated it could go into remission) it doesn’t necessarily mean you still don’t have ALS because some studies suggested Lyme triggered the ALS gene to turn on. It is worth looking into with a Lyme Literate Doctor. Only they will be able to tell you one way or another. I was 94 pounds, in a wheel chair, paralyzed from waist down and most of my left portion of my body, couldn’t feed myself, was barely audible, and was about to go on hospice care. Now three years later, I can talk, feed myself, I am walking short distances an still having memory issues. But I am doing better because I was given IV antibiotics for over 2 years and oral Antibiotics plus many other treatment options. Lyme is not the greatest of diseases either, there is no cure. But if you have it, at least you will get some of your life back and get to see your daughter grow if. Doctors these days make huge mistakes. And for you at 33, you still have a life ahead of you. I strongly urge you to find a LLND or LLMD. Lyme disease is a multisystemic disease and if you don’t get a great Lyme Literate doctor to see you, then you will be wasting your time and money. I wish the best for you and your family.

    • Thanks for this thoughtful note, LA Edwards. What relief you must have felt. I traveled down that road, too, and did a rigorous and invasive series of Lyme treatment. Alas, it did not work, nor did the many other treatments I tried. I’m always aware of what’s out there–not giving up! Best to you.

  5. Please Sarah – investigate this.
    <3
    Kerry

  6. Wonderful article!!

  7. You are a horrible person to spam this story about a fake herbal cure.

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