Living with ALS means that you are often straddling two worlds. For me, the first world is the one where my friends talk about school, their kids, their vacation plans, their jobs. In the other world, my friends talk about making their own funeral plans, how to take some of the burden off of their families, picking out what they will wear when their kids say goodbye to them. Both worlds are real, but it can be extremely challenging to toggle back and forth between them. I’m getting better at it, maybe? I’m not really sure.
I had a flash of former life last night, a vision of this yoga class I used to go to regularly. The doors that closed, the heat rising to 110°, me on my mat performing the same 26 poses in the same order, all that strength in my legs and arms. One time, lying on the ground, as calm and settled as a leaf, when the instructor came to stand over me, his sweat dripping down onto my own chest. How I flinched when the drops hit me. The way the room would begin to smell stale, a burnt popcorn aroma that I associated with mistakes, as if everyone there was purging what lay just under their skin.
Still, I left feeling toned, glistening with heat memory even as I stepped into the cool corridor outside the class. Though I’m usually chatty, I never was after those classes. I didn’t know anyone else there, and I guess I felt I’d shed enough of myself inside the overheated room. I would shower quickly, then climb into my car, a Volkswagen Golf that made me prouder than logic should have allowed. I had gone by myself to buy it, negotiating to the best of my ability, although I had no negotiation skills at the time, and my strategy was more to vacillate aloud while pacing around the dealership. As if I might actually walk out without the beautiful silver car that I had already fallen in love with. I bought it for slightly less than the Kelley blue book value, which made me feel as though I had won something. It was my first car, and the only one I’ve ever owned by myself.
And now, all of it, yoga classes and driving, showers, even just the idea of going into an office and having a meeting that doesn’t require the presence of a caregiver. It is all beyond me. In Manhattan, I used to visit client publishers and train them on our systems and databases. Walking, taking the subway, stopping for a coffee, being alone. These are such simple things, sometimes I am sure I can still do them.
The normal world is first grade picnics and mornings at the dog beach. The ALS world is assisted toilet trips and oatmeal spooned into my mouth, the way I once fed my grandfather in the hospital. The way I offered my daughter her very first bite of food. The normal world is drinks dates and parties that take place up flights of stairs. The ALS world is swollen feet and hanging out on the back porch with my dog who is having a very serious farting problem. I try to roll away from him, but he is intent on being near me and covering me with his disgusting scent. We are trapped here together, both of us waiting for what comes next.
I live in two places, the ALS world and the normal world. I don’t get to escape from either one, no matter how much I would like to. I can sink back into my memories for a while, but occasionally when I resurface, I am just more confused. How did these worlds collide? And how do I inhabit them both without losing my mind?
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You have created a third world too, where you bring us all in, and you normalize what shouldn’t be normal. xoxoxox
Sarah, I only have to offer my thoughts & prayers of you. & for you. Most of all, friendship across the miles.
Beautifully written, Sarah. And I agree with Hannah, you created a third dimension which allows readers to see and feel you’re reality. I recently found out one of my favorite clients passed away after battling ALS for only a year. the last time I saw him he was going in for a 10th opinion for arm weakness since no one seemed to know what he had. Anyway, i will read anything you write, you’ve done so much to raise ALS awareness as well as adding a candid portrait of your own experience with living with ALS. My God I hope therapies and a cure can come quick! They’ve done so much with RA, considering just a few decades ago there was only a couple of options… I’m praying for you lady!
Chris and I have 2 worlds too right now. One world is worrisome and scary and still full of unknowns. It has kicked our butts many times already, but the difference is we can walk away and catch our breath. We can walk. We can breathe. Thank you for reminding me today how profoundly lucky we are. Your friends are very fortunate to have you in their worlds.
Yes I agree with Hannah. And it’s always a beautifully written third world you let us share. Your insights are amazing and they help the rest of us with ALS more than you can know. Thank you.
would it be good if world one talked more about handicapped access and government funding of research? its scary to me the way today’s young parents (I had mine in the Eighties) resolutely stay in apolitical land. maybe if they talked about poetry, loss, and longing? …tho then there might be less than two worlds…
Shit! Shit! Shitty!!
Can I say that on social media?
Sarah, your words are always so beautiful. Yes we all live in these two worlds but with Jays disease are happy he’s still with us. Love you for putting it in perspective.
This pretty much describes my last thirty years of my life. For me I go to work, I make decisions, I help clients. I go to happy hours, coworkers weddings, and wheelchair accessible dinner parties. I go home alone, click around on the internet, and marvel at all my friends’ vacations, families, and beautiful children. I will never have an “adventure” vacation. I will never have a wife. I will never have beautiful children. Being confined to a wheelchair and needing assistance with toileting doesn’t really scream boyfriend, let alone husband, material. Two worlds indeed.
Hi Sarah, i am a caretaker and wife of Blair, who has als. I sighed a big sigh when I saw the title of your post- two worlds. How true. Long before Blair’s diagnosis we had gotten together and one of the most amazing aspects of our relationship was our ability to have empathy and understand one another. We were both healing and rebuilding from a messy past and were on a journey together of rebuilding. We were so in tune with each other – knowing each other’s hurts, needs, triggers, and being highly sensitive to them. We boosted each other up and, although hard, it was an exciting time. We lived in the same world. Today, I can’t even imagine what it’s like in his head with this “new” world. I have failed him many times at being able to anticipate his latest struggle, let alone be sensitive. My mind still has to live in the other world, paying bills, secureing myself a career and pumping up my 401k for retirement. I have to fathom how this upcoming election will effect the future of the country or how many more miles I can put on my car before I need a new one. The road we traveled together with its similar concerns has split. He blurted out to me the other day, “you get to go to work and shine and forget!”. He is right, I do. And I relish it. I have time away from the disease. He has no respite. The lonliness in his eyes is heartbreaking. This road he travels, he ultimately travels alone. I can’t even begin to fathom where his mind goes when he gets very quiet. I will always be here for him, but we exist in two parallel worlds.
Sarah , you paint the picture very well. The mental part of this illness has to be as difficult as the physical part . Why you and other ALS people have this disease and others of us do not , I really do not know . I do know this , you and my daughter Carrey Dewey , put a perspective on life . I do pray for the Miracle and for strength both physical and mental for ALL those dealing with this illness , including family and caregivers .
I used to tell my husband that everyone around us was planning retirement and fun things. He said…They can plan away…life as we know it changes in a second.
Selfish me would give the world to have him back in his hospital bed, touching me with his one good hand, talking with me on the alphabet board. But, in seconds I know, that I would never ever want him to suffer again like that…He did more than his share. He is now on his next journey. I am stuck with the severe pain of such terrible loss. My task, like all of us, is to play the hand we have been dealt, the best we can. Shitty is right.
So at my ripe old age, I am raising my three young grands..with my son on the street shooting Heroin. This aged grandmother advocates in the school for the boys with AD/HD and takes tons of naps while they are at school. When I am stronger…God knows when, I will visit again the ALS clinic.
Sending love to you. Admiring your gift from God of articulation and sharing. xxxooo