My Life. Well lets see. I grew up in London. I did the obligatory dishwashing tour of Europe as a kid. Travelled to Israel where I met the woman who would one day become my wife. Moved to the States. Moved away and traveled the world. Ended up back where we started. Had a kid. Went to nursing school. Had more kids. Went to midwifery school. Got a real job. Bought a house. Settled down and turned into my parents.
OK, so there’s probably a little more to it than that.
I was born in London. After apprenticing as a jeweler, I did the obligatory dish-washing tour of Europe as a teenager. In 1980. I traveled to Israel as a volunteer on a kibbutz. In a bomb shelter I met Rae, the woman who would later become my wife. In late ’82 I arrived in Urbana (Rae’s home town). Worked as a jeweler and then later worked at the Physics department of the university (I helped to build a particle detection array for Fermilab). During my time in Urbana, I took up karate and became a black-belt in Shōrei-ryū karate. That’s also about the time that I took up cycling. Rae commuted everywhere by bike and if I wanted to keep up I had to get my own. So I bought a second hand Raleigh at a university police auction.
After 3 1/2 years in Urbana, Rae and I set off and traveled the world for 3 years looking for the perfect place to live (we traveled around America, New Zealand, Australia, Indonesia, Malaysia, Thailand, Nepal, India, Greece, Israel, and England). When in England, I got another secondhand bike and commuted to work in downtown London. By riding my bike, I saw London from a new perspective (overground as opposed to underground). This new experience led to my first long-distance bike ride going up through the Lake District to Scotland. Shortly after the birth of our first daughter, Lisa, Rae and I returned to Urbana. I then went to nursing school, riding my bike six miles to Parkland College every day, rain or shine.
At Parkland I earned my Associate Degree in nursing. I then got a job as a labor and delivery nurse, and continued my education at the University of Illinois to get my Bachelors with high honors. While working at Carle Hospital I commuted–not by bike–to get my Masters in Nurse Midwifery at UIC in Chicago. During this time most of my exercise was confined to studying on a stationary bike at IMPE (now the ARC).
While going to school, Rae and I had two more children, Manu and Sophia. Upon graduating, I started working at Planned Parenthood as a prenatal provider, and bought my first ever NEW bike. Through the years, I would ride all 3 kids on my bike and drop them at school. Around this time, they were re-paving US 45 between Urbana and Tolono. I used this as my personal training route. It was perfect; a blacktop with no cars on it. Over time, I rode further and further until I rode my first century.
In the early 2000’s I started riding long distances to raise money for charity. In May 2004, a close friend and I dipped our back bike tires in Yellowstone River in Montana and rode home via the Lewis and Clark Trail. This ride raised money for two local charities. On the ride the weather was not kind to us and I think some of the money donated came in after the fact because people felt so sorry for us.
I continued to do 100-mile bike rides weekly (yes I have a very understanding spouse). In 2012, I started competing in 24-hour bike-rides. In my first ride, in Minnesota with my brother- and sister-in-law, I got first place. Since then I have ridden in several 24-hour competitions.
After a bike ride back from Minneapolis in the summer of 2014, I noticed that I was having difficulty playing guitar. At first it was thought to be nerve compression from excessive cycling (excessive cycling? Me?). But several months later, a diagnosis of ALS was suggested. After delivering 2,095 babies and with this new diagnosis, I chose to stop delivering babies and focus on gyn and prenatal care.
At a January 2015 doctor’s appointment, the neurologist suggested that it was time to check off things on my bucket list. Rae and I had already traveled the world. So there were only 3 things on my list: spending time with family, becoming a Bar Mitzvah, and riding my bike coast-to-coast across the US. Rae and I are now using this time to see family as much as possible. The Bar Mitzvah was in July, and the bike ride across the southern United States was planned for Spring 2016 but our neurologist smiled politely and said this year might be better. So October it was. The goal was to complete the ride in three weeks. It took a tad longer and didn’t exactly go as planned. This blog contains that story.
*****NO one does more to fight ALS than MDA- ALS steals the ability to walk, stand, hug, move, talk and even breathe. Since its inception, MDA has dedicated more than $344 million to ALS research and health care services. MDA funded 64 ALS grants with a total of more than $17.2 million in 2014 alone. MDA operates an ALS Clinical Research Network, housed at five of the largest ALS research centers in the country, and their research efforts are promting the U.S Food and Drug Administration and other policymaking groups to address the unique needs of ALS patients and their families. Support families in hometowns across the county and uncover research breakthroughs to help everyone with ALS live longer, stronger lives!!
22 thoughts on “Okay, so here’s my little story.”
Hi Raymondo – From reading this at the suggestion of Tauby, we realize that we might have given your Bar Mitzvah present to the wrong organmization. ugh. it had high marks and we thought it would be the one you would support, but…….let us know.
Your BIG (not little at all!) TRIP is going to be amazing, tho not as amazing as you are! You are so able to express yourself as if you are sitting right beside us.
And you look so great with your little grand-daughter!
Peeper II sends you a lot of love as do we,
Susan and David
Rae/Jeremy/Joel and Tauby knew Peeper I. Peeper II is the clone of Peeper I and rather like you – SMART, BEAUTIFUL AND SWEET. XXX And Peeper I rode a bicycle down the driveway at 305 Oregon.
Hi Susan. We wanted to support the local MDA because of the clinic we have used here. Wanted to give back to those who have helped us. Thanks for your kind words and donation. It all helps the cause.
Ray, I am so impressed with your fortitude and joie de vivre. Good luck getting ready for your ride, and may the weather gods and all the other pertinent universal forces be with you. I love the t-shirts. Bless you all and rock that ride! I will spread the word to potential supporters.
Thank you for delivering my baby girl Nico. Ill be checking in on a regular basis to see your progress no progress words of wisdom or non wisdom words. 🙂
Thank you for delivering my baby girl Maaike (now a baby no longer at age 12). We will be following your ride and always thinking of you with much admiration and love.
You’re welcome Laurie. But I think you had the hard part
I will be following your ride God Bless You and your Family
Ray, We met in Carle’s L & D back in 1997. It seems like yesterday. You have so much heart. ❤ For my friend Cindy who passed away from ALS Oct. 14, 2014, and other people suffering from this dreadful disease – YOU ARE OUR HERO! God's blessings to you and yours.
I chanced upon an article about you while taking a break from work. My husband Doug battled ALS and passed away in 1999. It is interesting that you started your ride on October 18th as that is his birthday. This is one of many coincidences that I encounter often so I have stopped considering them coincidences and believe it to be purposeful. That is why I say “is” as I am reminded of him everyday and know that he is still here in some way. I am glad that you are giving ALS hell, and not going down without a fight. Will be praying for you and following your journey. God’s speed!
MDA St. Louis here. Thank you for sharing your story—I look forward to following the rest of your ride. You have offices around the country cheering you on! Please, never hesitate to reach out for resources from the MDA family along the route!
YOU ARE AND ALWAYS HAVE BEEN AND WILL ALWAYS BE AN INSPIRATION! the way you have always lived your life is admirable (although that word doesn’t even scratch the surface)
You helped me deliver my daughter in 2009 (VIA #waterbirth) I couldn’t have done it without you. I remember you saying (when the tub wasn’t full yet and baby was starting to crown as i stood there) HEIDI, this baby is gonna come whether you are in the water or not, let your body do the work… (or something along those lines) I prayed you would be there the day we delivered and I thank God every time I think about it.
yeah yeah yeah… i did the hard work… but you inspired me to be strong.. the same way you are now inspiring so many others.
You are the coolest person i ever had the privilege of knowing..
Thank you for all that you do.
-Isabela Alma Jewel (age 6)
I have been following your blog and have wanted to drop you a note. Congratulations on your ride! Thank you for your beautifully written posts and for your example of how to live. You are reaching so many people with your journey – just as you have impacted so many in our community in our daily lives. My family lives in Urbana, and our kids are college-age now. Even though you weren’t our midwife, you made a big impact on the story of our family. When our son Jack was born, I had influenza, as did my husband and daughter, who was two at the time. I needed to stay in the hospital for a week. Hospital staff were not allowing our daughter to see me, and I was only allowed to hold our son while wearing a mask and gloves. You came into the room, where I was sobbing, trying to hold my new son through latex gloves. You quickly assessed the situation, told me to call my husband to bring our daughter to me, and take off all that gear, so that I could actually hold our baby. At that moment, you restored our family. Just a moment out of so many moments in your career, but it made all the difference to us.
I hope you continue to blog, now that you have reached the Atlantic. A very happy Thanksgiving to you and your family!
I would like to first off thank you for sharing your very personal journey and to also thank you for the tremendous job of fundraising that you are doing for ALS/MD. I have had the pleasure of knowing your friend and fellow bike ride enthusiast Luci for a handful of years now. This summer I ran into Luci and she spoke of such excitement about the ride that she was going to be going on in October with you and your crew. That night I really began to think about this whole process that you are going through and what amazing and dedicated friends and family that you are surrounded by. Of course I cried and reminisced about a family friend that had passed on from ALS when I was a young teen, but I also was happy to know that you were continuing to be an inspiration just in doing what you love to do. True you could have said “fuck it” and though I am sure you may have had less than pleasant times, at the same time you have chosen to do what you CAN do and for that you are an amazing person.
I am pursuing my masters degree in social work at St. Thomas (I met Luci at St. Kate’s in the undergrad program in the social work program) and I am currently taking a class in Grief Counseling and Therapy. As part of a final project/presentation I have chose to discuss ALS and I will proudly be wearing your awesome shirt and will share a little about your journey and just what an inspiration you are!
I thank you again for sharing your experience with ALS and may you continue to be surrounded by those you love while doing what you love to do.
Ray- I wrote something about our interaction that I want to share with you. I would prefer to not post it in a public forum since it involves something personal for me. How and where can I get access to your email?I promise I will not spam with more than one email!
I emailed you yesterday
Ray–we are friends of friends and I feel I have heard so much about you and your journeys. Our own family has been going through a recent diagnosis–though not ALS–and it’s been heartening to read your insights about life, family, and thinking (mostly) about what matters. I know we don’t know each other directly, but I feel very appreciative that you are in the Urbana community and wanted to say thank you for sharing so much–it’s so heartening to read and think with you.
I saw at yoga class and I want to share some information on treatment. Can you email me?
Hey Ray! This is Shan Brown. We worked together at Planned Parenthood ( a long time ago).
I want you to known I pray for you & your family every day.
I remember the first time I saw you. We had a nursing class together at Parkland. You were very obvious since males were few and far between! Well, I thought you were very hot!! Lol! Just wanted to share!
Thanks for being you! You are definitely an inspiration! I love your joie de vivre and your non- judgmental additude!
You rock!! Xoxo
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