Life In Flux

There’s a scene in the first “Back To The Future” movie. The main character, Marty McFly, is catapulted back in time to 1955 where he meets, as high school students, the people who would one day become his parents. Whenever Marty is confronted by a situation that is too overwhelming for him, which seems to be quite often, he says “Whoa. This is heavy.” Eventually his friend, the eccentric scientist Doc Brown, says “There’s that word again. ‘Heavy.’ Why are things so heavy in the future? Is there a problem with the Earth’s gravitational pull?” The future they were referring to was 1985 but as I recall, gravity was working just fine back then. However, here in 2016 it’s another matter altogether. There is definitely a problem with the Earth’s gravitational pull because things are getting really heavy. And seem to be getting heavier by the day. I’m sitting here at the coffee shop typing with one leaden finger, drinking a 12 oz cappuccino. I’m not a caffeine lightweight but the 16 oz became a victim of that problem with the Earths gravitational pull some time ago.Untitled

I live in parallel worlds. The one thing that ALS has not affected (so far) is my ability to sleep. Although Rae has to arrange my body parts in a comfortable position after she has laid me down. My dreams are deep and at times pretty intense. But rarely, if ever, do my ALS symptoms intrude in my dreams. When I dream about riding it’s always on my two wheeler. To the best of my recollection the trike has yet to make an appearance after lights out. Last night I was riding in a race. I had two laps to go and was in the lead. On some level I was quite aware I had no business riding this well but I wasn’t complaining and just went with it. Enjoying feeling the breeze on my face and watching the road fly by under my wheels. Alas I can not say if I won because I awoke before the end of the race. But in that hazy post dream semi conscious state I was still feeling pretty stoked about my cycling skills. I just couldn’t understand why such an amazing cyclist was having so much difficulty rolling over in bed.rideI’m not going to jinx it by saying Spring is here but it was in the 70’s today. Time to break out the cycling shorts. There are hazards to riding a recumbent trike. Some, like visibility, are obvious. Others are a little harder to foresee. I guess I have never noticed just how white my thighs are after the long winter hibernation because they are generally underneath me on the bike. But on the trike they are front and center. This vast expanse of pale flesh reflecting the sun. It can cause a total white-out. For my part I can fix this by investing in some better sunglasses. But I worry about blinding on-coming drivers.IMG_9897

Over the years my life has become very ritualistic. I’ve just refined everything till it’s a certain way. I’m guessing most of us do this to some degree. When you’ve gotten things the way you like them why mess with it. Some of these things are negotiable depending on the company. Other things not so much. But obviously riding was subject to this ritualization. Whenever I reached the furthest point on any given ride I would buy a lottery ticket. Just one. It was my early retirement plan. In the decades that I did this I was “Sorry, not a winner” 99.99% of the time. I never won the big one. Although I do recall having won $10 once. My rides are shorter these days but I still buy the tickets. But along with lowering my expectations I have also redefined winning the lottery. Now winning the lottery qualifies as putting a piece of food in my mouth and having it land between my teeth first try instead of having to toss my head around like a bloody heron trying to get the food to a place in my mouth that I can bite down on it.

I have taken to traveling everywhere with a chopstick and a cloth tucked into my arm sling. In the past when we went out Rae would ask “do you have you’re phone and your wallet?” Now it’s “don’t forget your chopstick sweetie.” Both items are critical in the off chance that I decide to take my life into my own hands and eat something in a public place. The cloth is for the incessant salivation and to hold over my mouth because I have to chew with my mouth open. The chopstick is my prosthetic tongue. At home it doesn’t matter if I poke food around my mouth with my finger. Or spit food back onto my plate because I took too big a bite. But in a restaurant that might be considered crass. So I use the chopstick to discreetly (ha ha) work food over to the right side of my mouth where it can be chewed. I don’t know if there’s an etiquette book on eating with ALS. If such a thing does exist I’m guessing it’s pretty short. It’s odd what I can and can’t consume. I can drink coffee yet I choke on water. Brie and crackers, fine. Popcorn, instant death. Soup, bring it on. But if it gets too thick, the person sitting across from me will end up wearing it. Some things work and other things not so much. There seems to be no rhyme nor reason to it all. I guess it will have to remain one of life’s great mysteries. Like why do homeless people have such thick heads of hair or how is having your seat tray fastened in the upright position going to help if your plane drops out of the sky from 30,000 ft?IMG_0189Jack’s word for bottle is “baba.” Jack’s word for me is also “baba” but in a different pitch. I love reading to Jack. Having him be excited to see me is a relatively new development. He never used to come to me because he knew I couldn’t pick him up.  But now he’s more mobile and just throws a book and/or a bead necklace in my lap and climbs up into the chair with me. And best of all he understands every word I say. He is probably the only one that does. He will occasionally correct me. Pointing to a word or letter or picture in the book and repeating it like his mum or Bobe say it (he’s a clever little shite is our Jack). But never once has he given me the “and what the hell are you on” stare.jack copy

A common worry amongst first time moms was “what if I’m in labor and don’t know it?” I try to reassure them that this is unlikely. But a lot of people seem to have a friend who had a friend who had a cousin that delivered on the living room floor because they didn’t know they were in labor. I try to give them permission to worry about something else. Often without success. I try many ways to get my point across. It usually goes something like this: Here we are having this conversation. If you were in active labor, even if we shared this same physical proximity we would not be in the same place. You would be in labor land. It’s like a window into another world. And the only time you can truly understand that place is when you’re in the midst of it. No number of books or classes can ever prepare you for it. And once you’ve had the baby you want to hold on to the experience. You have been through this thing that you’ve been hearing about for most of your life. But it fades quickly. The window closes. It wasn’t meant to be held onto. It’s too intense. Given that I have not so much as experienced a menstrual cramp in my life this is my best shot at describing it.  That being said there are not words that I am aware of in any language that can adequately describe the process of bringing life into this world but it strikes me as something you can’t miss.IMG_0838People would often come to prenatal visits with a “birth plan.” I preferred to call them “birth wish lists” since it really wasn’t something anyone could plan. Birth tends to have a life of its own. I’m guessing that for all our attempts to stay on top of things and plan, death is going to be similar. A window into another world that you can only appreciate whilst in the midst of. We were at the doctor’s today filling out the DNR form (Do Not Resuscitate). Like all things it wasn’t just black and white. There were lists of circumstances and selective types of resuscitation that I might find acceptable in certain cases. To avoid confusion I declined it all and signed on the dotted line. It’s now on file as part of my “death plan.” I look at the words on the DNR form and I know what they mean. But I don’t really. I have witnessed birth over 2,000 times. Yet as I said describing it eludes me. I have only witnessed a handful of deaths. Here we are preparing for the great unknown. I know how I would like it to go but I’m preparing for something that can not be expressed from this plane of existence. Rae is a doula. A doula is someone who provides physical and emotional support to the mother before, during and after birth. Also providing emotional and practical support during the transition to motherhood. She has been a doula for longer than I have been a midwife. I have seen Rae in action in this capacity and it is truly a thing to behold. I will be going through a very different type of transition but it is her stated goal to doula the shit out of me to the very end. In the face of so much unknown I find that very comforting. More so than any piece of paper on file in my chart or plan I may have made.IMG_0174I recall several occasions where my grandmother brought up the subject of her death, or “not being around anymore” as she referred to it. She was always immediately hushed by family members and on one occasion even chastised for being so morbid. You could almost feel a collective sigh of “oh God, here she goes again” whenever she brought the subject up. A few weeks ago when we visited Sophia at Knox we took her out for Mexican food. We have tried to be as open and matter-of-fact as possible about what’s going on. We have a rough outline of the funeral service and Sophia asked me “how do you feel about all that?” We didn’t include everything we could have in the service but we still have quite a bit going on. There were a million questions Sophia could have asked. Or she could have just changed the subject as my family always had. I mean, here we were in a Mexican restaurant talking to her about her father’s funeral. But after a long pause and a deep slow sip from her margarita she looked up pensively and asked: “so is there going to be a halftime show?”IMG_9861

Peace, love and midwives




15 thoughts on “Life In Flux

  1. Ray, I’m going to share this with my Essential Tremor Group. There is so much we can learn from you and your family. Proud to call you and Rae friends. Bill


  2. Thank you for re-opening that window onto and back into the memories of my daughters’ births, though you are right that it can’t be held open for very long. And, thank you for opening another ther window onto and forward into an experience no one can fully plan for, though it does help to think about it and to plan (and a halftime show sounds like a lovely idea). I am still angry this is happening, but at the same time so grateful for your transformative posts. As I’m still grateful for your good work and care during my pregnancies and my daughters’ births. (I probably was one of the women who asked you about how to know it was labor. When the time came, I indeed knew it was, but i told my husband, no hurry, I just have to go to the bathroom kinda often. He said: you have to go to the bathroom every 6.5 minutes, let’s go!) Thank You, Ray and Rae!


  3. Such a candid discussion about your life and how you feel as you move towards your death. We are all dying. I appreciate you being an example of how to progress toward it with honesty, dignity, and a sprinkle of humor. Thank you for giving us a small glimpse into your world. Your posts teach me to be more empathetic and human in my everyday life. Thank you for enriching me and hopefuly others through me.


  4. Lol, a halftime show. I love your family’s sense of humor and the beautiful bonds you share. You are a master writer, a master of the personal memoir.

    Your line, It is her stated goal to doula the shit out of me to the very end, brought me to tears. So, so beautiful.

    I hope you don’t mind me sharing, and take it with a grain of salt, or cup o tea or coffee or whatever. 😉 I do believe in an afterlife and I believe our spirits are eternal. That your spirit will go on living after your mortal body has died. I believe that one day your spirit will be reunited with your body–resurrected–and that you will be with Rae and your whole family again, in a state of immortality. Meaning, you’ll be able to ride again with a perfect body. I’m not sure what else will happen in that eternal life, but two things I’m sure of: family and peace. When my heart feels heavy thinking about how your life has been cut short I have hope in that resurrection and reuniting with loved ones.

    Perhaps your dreams are glimpses into the next phase of your journey, where you are free to ride unencumbered by ALS. Peace and love to you!


  5. Hi Ray, I have recently started taking yoga with you Wed. nights. You don’t know this, but I’m so happy to have you in the room. You do your practice, I do mine, our neighbors do theirs. And our teacher’s voice booms. Her words fall on us with equal weight. I certainly can’t know what it is that you feel inside your body, but I gain comfort knowing that the instructions, props, and space that we use are shared. Somehow, it makes me feel closer to you and your experience. Hope you enjoy the brightness today. B.Z.


  6. Ray, you are incredible.
    You were my favorite midwife… So sweet and funny. I had you at several of my prenatal appointments before delivering my baby boy, Zeke, in August 2015. I remember you telling me that exact thing about being in labor, how you can’t miss it, and how you’ll just want to live in the moment and the experience. I can tell you are living in the moment, and making the most out of everything.
    I am constantly thinking of and praying for you and yours. You have touched so many lives.. More than you can imagine.
    Thank you, Ray.
    -Emily Ruwe

    Liked by 1 person

  7. Hello Ray and Rae.
    Ray you were by my side thru my last pregnancy. You delivered my lil red, Andrea. I met you in 1994. God couldn’t have blessed me and my family more by having you as one of our midwives. Remember when I had the water birth with Mathew and Kathy called you? Lol! Or when I was sitting in the waiting area while my test was cookin… Andrea was 7 mths old. You walked out, crossed your legs and arms, smiled at me and said, “I don’t even have to tell ya, do I Kandi? ”
    So awesome you are. I never saw you drive a car. You always rode a bicycle and every time I would come for check ups, you would be scaling the building.
    Lol! My children know you well.
    Then I met Rae when my Autistic son, Zachary, started Jefferson. What can I say but wow! Rae, you are one of the most beautiful, strong, and amazing woman I’ve ever had the pleasure of meeting! You worked with the special ed dept and you were phenomenonal with him. I read your blogs frequently and you both still just amaze me. When my sister sent me this link and I read the most recent blog, tears and laughter were a major affect. I still have pictures and blessed memories of you both. I would like to be there when its time, however, I’m not capable of riding a bike anymore. 😉😉😉

    My heart and prayers are with you and your precious children that seemed to have grown in the blink of an eye… I am grateful to have been to be blessed with knowing you both…

    Kandice Reder-Leonard


  8. From one trike riding, ALS owning, Seder observing friend to another, wishing you and yours a zissen pesach. Remember, anytime you can make it to NYC you’ve got a place to stay and a riding partner in Central Park. Can’t beat that for an offer. All my best. Larry

    Sent from my iPhone



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