“Nye Nye” Time

The night comes in many forms and I both dread and look forward to it. I dread it because if I’m going to have breathing difficulties the night is when it will usually happen. But at the same time it’s my favourite time of day because of how comforting I find being tucked in. It’s probably been close to four and a half decades since anyone has tucked me in at night. But every night Rae will lay me down while supporting my head and neck and arranges me on my right side around a body pillow. Left knee and arm above the pillow, right knee and arm below.  Shoulders pulled back to maximize chest expansion and head moved slightly forward so that my ear is flat. Then she’ll tuck the blankets around me. I must have done this a thousand times as a midwife for women in labor but it wasn’t something I imagined that I might enjoy myself until Rae had to start doing it for me. It’s such a simple thing and only takes a few seconds but I think being tucked in is the embodiment of being cared for.

Of course Jack learned this long ago. We have a small blanket that he calls his “nye nye” blanket. Every so often he will lay down on the couch with the blanket and say “nye nye.” Rae will say “does Jack want to take a nap?” And tucks him in. He will lay there for a  short time and then get back up. You can tell from the glint in his eyes that he has no intention of taking a nap for approximately the next six months but then he will lay back down again saying “nye nye.” Rae being the eternal optimist will again tuck him back in. And around the game goes. The sole purpose of which just seems to be to see how many times Jack can get Rae to tuck him in. He seems to have life figured out.IMG_0732My gait is becoming ever more uneven. It feels like my left leg is about two inches shorter than the right. I’m unclear on why muscle atrophy manifests itself in this way. If I had any upper body strength I’d be using a walker or at the very least a cane. It’s about 0.8 miles to the coffee shop and that is the furthest I’ve walked in a long time. When people go for walks I have taken to accompanying them on the trike. Pedalling slowly along the road beside them. The trike has become my self propelled wheelchair. If I could ride it around the house I would. It’s certainly a lot more comfortable than any wheelchair I’ve ever ridden in. And I don’t have to suffer the indignity of listening to someone huffing and puffing in my ear when going uphill.Ray May 12 2016-45I have ridden my two wheeler through just about every landscape. Through desert and through ice. Through mountains and flatlands. Through endless snarled city traffic and through towns so remote that if two vehicles come to a stop sign at the same time no one is quite sure what to do. I’ve dodged cars, bikes, people, farm equipment, rickshaws, semitrailers, snakes, elephants, camels, dogs, moose and herds of sheep (although not all in the same day). But the boundaries of my world are contracting. There are very few places that I am both physically and psychologically at ease but on the trike is one of them. When I sit down it’s as if I melt into the seat. I can propel myself with a measure of grace that is sadly missing on two legs. I rode the trike thirty miles the other day which nourished my soul no end.  Once beyond the outskirts of town I’m free. It’s just me and the corn. On the way out of town I even overtook another cyclist. I wanted to get off the trike and go back and give them a hug.IMG_0715 (1)Fairly early on after I was diagnosed a friend texted and advised that I not look up pictures on line of people with ALS. It was of course too late by then. I’ve always been fascinated by the human body and have used my own body as a lab to push its limits. I see its decline with equal, if not slightly more morbid, fascination. I no longer have to look on the internet for pictures of what ALS can do, I just have to look in the mirror. If I could I would be taking photos out the wahzoo but I can’t hold a camera anymore. Periodically I will ask Rae to take the odd photo but never to the extent I would if I could myself. Then as chance would have it I was contacted by  someone I’d helped take care of during pregnancy who had an intriguing proposition. Justine is a professional photographer and was wondering if I would be willing to let her photographically document moments of our everyday life as our journey unfolds through to the very end and beyond. Ultimately embarking on a photographic process of documenting my own mortality. Hmmmm, let me think about it for a while I didn’t say. Sometimes Justine will come over and be a fly on the wall documenting our daily activities. Sometimes I will ask for a specific shot that I can’t take myself. And sometimes the whole endeavor is put on hold when Jack sits in her lap with a book. But it’s hard to explain to a 21 month old that the woman with the camera isn’t really there.

One night a couple of weeks ago I woke up  drenched in sweat and gasping for air. I started freaking out which I’m sure only made matters worse. It felt like I was breathing through a pinhole. I stood up, paced, sat down, stood up, paced some more. I recall making weird grunting noises trying to force air out in the hope that it would make my airway bigger. This had never happened before and neither of us knew what to do. Rae said the episode only lasted about a half an hour but it felt like an eternity to me. I think what scared me the most was the thought that this feeling of air hunger is what it was going to be like at the end. My first taste of what lay ahead. Eventually Rae convinced me to get back in bed and lowered my head back down to the pillow. She lay in front of me with her forehead against mine and softly coached me in breathing. Holding my hand with one hand while stroking my head with the other. Slowly she got me to slow my breathing down. The last thing I recall thinking before drifting off to sleep was that when my time comes this is how I want to goIMG_0690 (1)I think my favorite sound is that of rain. Rain on a tent, rain on a car roof, rain on the trees, rain coming and going in the background on “Riders On The Storm.” A deluge or a drizzle. I like rain, you get the idea. The day after my breathing scare we went to the palliative care clinic and it was suggested I start using BiPAP (Bilevel positive airway pressure) at night. It’s a form of non-invasive mechanical pressure support ventilation that augments your own respiratory cycle. I wear a mask and somehow it mimics my breathing pattern and when I inhale it blows air into my lungs. I’ve tried faking it out by holding my breath and it will patiently wait 14 seconds or so before saying OK Ray, time to breathe now there’s a good lad. And then it gives me a breath of air. It’s kinda freaky how it knows this and I try not to think  about it too much. But the goal of all this is optimising  my lungs’ efficiency and reducing the work of breathing. Since I’ve been wearing it I’ve only had one other episode of air hunger so I’m gussing it must be working. The other night I woke up and between the sounds of augmented inhalation I could hear a gentle rain outside the window. I tried to focus on the rain but the sound of the BiPAP kept disrupting my zen. I had to make a choice between optimal breathing or listening to the rain. It wasn’t a hard choice. I woke Rae and asked her to please take the BiPAP mask off.IMG_0651June 21st, 2012. Powderhorn, MN. I got a call at work one day from my brother and sister-in-law, Josh and Luci, up in Minneapolis and was informed that, oh by the way, we’ve entered you in the Powderhorn 24 (a 24 hour bike ride). Thanks, great I said having absolutely no idea what the hell I was getting into. I had two months to train. On the day of the ride at about 1 in the morning a cyclist pulled up beside me introducing himself as Ben and we started chatting. I stayed with Ben for three laps but had to work to keep up. Eventually I thought this is silly, I have another eighteen hours to ride. At this pace I’ll die on the vine so I dropped back. That’s the thing about being a midwife. You learn fairly early on that women go into labor at all hours of the night not just between 9 and 5.  So I’m intimate with the measure of time that is 24 hours. I know what it takes to make it through. I spent the rest of the night blindly following any flashing red light I saw through the city streets in the hope it was going where I needed to go. But at a more sustainable pace. As it turned out I won the race that day by three laps. 347 miles in 24 hours. But I believe I won because I’m a midwife, not because I was the best rider.382382_644002786680_191568738_nThe night comes in many forms. Some of them more welcoming than others. In the past I have spent many a sleepless night staring at the ceiling fan as the clock tower on campus counted off the hours. But I can’t breath laying on my back anymore. I can’t lay on my left because of lack of tissue padding of any sort. So I lay on my right side facing Rae. For every sleep breath she takes the BiPAP gives me three. My respiratory rate is more in sync with the snoring rate of our daughter’s chihuahua that sleeps with us. I try not to think too hard about the implications of how shallow my breathing is becoming. Instead I focus on the business empire I’m going to build when I find a market for excess saliva. The night comes in many forms. IMG_1033


Peace, love and midwives



“She said, I’ll be with you
My shawl wrapped around you
My hand on your head when you go
And the night came on
It was very calm
I wanted the night to go on and on
But she said, Go back to the World.”

The Night Comes On, Leonard Cohen

19 thoughts on ““Nye Nye” Time

  1. I watched you win Powderhorn 24 and was so proud as you were one from my own generation. All those “kids” had so much respect. Now I’m watching you “pull this off,” and it goes beyond impressive. Youre leading the way once again; teaching us all how to have humor, humility and insight into such a personal and difficult journey. Thank you.


  2. Well as usual you’ve moved me in your writing. Thank you for your honesty & perseverance. Thank you for your integrity & grit. Blessings friend!


  3. thanks for sharing your journey Ray. you write so well–we feel like we are all there with you. just wanted you to know I follow all your posts. I admire all you have accomplished in your personal and especially your professional life. when you were at parkland so many years ago and we stayed after the clinical to see a birth with Lucille–the best of OB knowledge– you quietly observed and told me the IV was low. you were cool and calm and so observant. what success you had in that world. I hope the best for you. You have a loving home that you created. you have all my respect.


  4. moved, again. I absolutely love that Justine is documenting this. Her eye is a beautiful eye to watch through.


  5. I love the way you write about your support crew – the tribe of family, friends and others along on this crazy journey with you. Their love and humor and creativeness is a beautiful thing to experience through your writing.

    You constantly remind me to embrace the everyday things I am often tempted to overlook or rush through. The wonder of the endless game of peek a boo (or “nye nye”) with a baby…to not commence eye rolling when my son launches into a lengthy description of his Minecraft accomplishments – for 150th time, the joy of solo grocery shopping, cooking or weeding the garden…to love the dog even after I have just stepped in another one of his presents.
    To overlook the messy house and endless to-do list – and take the kids bike riding and fishing or just dawdle away the day together because that’s what really matters.
    Thank you for your writing Ray!


  6. I am sitting on a cliff ledge looking out over the waters of Green Bay. Your post makes me think of nights when my asthma has held me captive in the very act of getting air. Having Rae’s forehead against your is such a comforting image. Then again having Eddie there is somewhat comforting too. I think of you and your loves being there to laugh, tuck each other into comfort and hold these moments in the precious care they deserve. Long time sun shine upon you.


  7. You and Ben became friends that night in those shared laps. You shared more than bikes, a parallel that was uncanny. You both pushed yourselves past limits your bodies tried to place on you. That was the start of a family tradition, each of us riding, not together, but together. You pushed Josh, and you pushed me to reach past limits brain-space creates for our bodies. And we’re still pushing limits because of it. (Some of our failure to listen to reason can also be attributed to you). You see the impact that the people have on you, and we remember the impact that you, and Rae have had on us. Such an impact.


  8. I would be interested kn starting that business with you, Ray. I’m an antiparticle with a spit cup.

    Ashley Lingafelter


  9. I love reading your blogs. I can see Rae’s love as she is tucking you in,and Jack, soothing your anxiety as she is forehead to forehead with you. I also like the idea of your documentary via photography. Looking forward to your next blog.


  10. Ray,
    I think of you so often. Thank you for the update and memories shared. I met a woman this past weekend who knows Rae. It’s amazing how many people in the community you both have touched. Please have Rae pass a hug on to you for me. I pray I find true love like the one you both share now that my divorce is final. I will never settle for anything less.
    Love and prayers,
    Diane Ortel


  11. Ray
    I think of you more than you know. I admire how you’ve managed all this more than I can say.



  12. Thank you for your brilliance, Raymond. It shines from you and makes me very happy there is you in this world.


  13. What an amazing blog. Your insight, courage, understanding, and incredible attitude come through your beautiful writing. Jane


  14. Thank you for beautiful writing, Ray. I would have loved to have you tuck me in when you were my midwife (unfortunately breech birth did not allow for that). But I did have Rae as my doula and I know what an amazingly comforting presence she is. I’ll be thinking of you both tonight and for the nights to come.


  15. Thank you for sharing your life with us, Ray. You write so beautifully, and honestly–it is a treasure to read, and a reminder that no matter our life’s situation, we can face it honestly. That is a gift to us all.


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