Just wanted to give a quick update and welcome anyone who might be new here! My book is back and better than ever! Just kidding, it’s almost exactly the same, but it IS available again! lol Good grief, I’ll stop with the exclamation points.
If you haven’t heard of it before, “Different Is Awesome!” is a children’s book I wrote that is based on the true story of when my younger brother Joey brought me for Show-and-Tell. A little boy brings his older brother to school and all of his classmates ask his brother questions about how he lives his life with one hand. Along the way we see that we’re all different in some way or another and that’s…well, awesome!
There are now 10,000+ copies in print, which blows my mind, and you can get a copy on Amazon or, if you want a personalized/signed copy, let me know! Send an email to ryan@livingonehanded.com and for $25 I’ll send you a signed copy with a bookmark and a sticker! I might even tuck another awesome surprise in there (while supplies last).
Thank you all for being so supportive over the years. It means everything to me. And remember, too, that I am available to speak at schools, both virtually and in-person (if your school is open), so let me know or put me in contact with the folks who bring in speakers and we’ll make it happen, cap’n!
Friends! Some of you have sent me messages saying that you are unable to get my book from the places you normally get books. And while I’m sorry to confirm that fact, I’m also VERY happy to tell you that it is temporary! We actually completely SOLD OUT of the fourth printing and are currently in the process of producing the FIFTH printing of Different Is Awesome!
I’m SO grateful for all of you and it makes me SO happy to see the book still being such an integral part of so many lives this many years in. THANK YOU! And while it stinks that there aren’t any available right now, the great news is that they should be available by February at the latest!
If you’d like to preorder a copy, I’m doing a special deal where, for $25 you’ll get a signed copy, sticker and bookmark sent to your home once they are available! Click here for more info on how to do that if you’re interested.
Once again, thank you SO much for your support through the years and PLEASE keep those stories coming! Nothing makes me happier than hearing how Different Is Awesome! has impacted your lives.
If you could see my YouTube history, you’d have lots of questions.
For instance, I watch a TON of restoration videos. Old toys, gaming systems, tools, shoes, watches…if it’s in terrible condition and someone repairs it, I’m watching it. I love seeing something that is broken become new again. Something you’d typically throw away given new life. The process is fascinating to me and the result is so satisfying.
I love this junk.
One of the things I acquired after my dad died was his snare drum. I’ve always loved it. It’s shiny and sturdy and reliable. That said, I don’t play. Never have. Probably never will. And as I was going through stuff in my garage a few months ago (because what else are you going to do during a pandemic?), I saw it sitting on our top shelf and realized that it’s just been sitting, unused for probably 50+ years. It went from my dad’s basement shelves to my garage shelves. And there’s nothing inherently wrong with that, but…
I started to think about how I’d bring it back to life. How could I get it to someone that would restore it to its former glory and actually use it again? I was nervous, but I put it on Facebook Marketplace and Randy reached out. Randy lives about an hour and a half north and plays in several different bands and was interested in adding my dad’s drum to his collection. I told him that I didn’t mean to make things awkward, but that it was important to me that it went to someone who was going to make it like new again and actually use it and that I would love to see pictures.
Randy was more than agreeable. He drove all the way down and met me and we talked for a bit. A few weeks later he sent pictures and, well, it just made me so happy.
Beautiful, right?! More pictures below.
And here’s the part you probably anticipated was coming.
I can’t bring my dad back to life. I can’t make him new again. Today marks six years that we’ve been without him and it still sucks. It doesn’t hurt as much, for the most part, but it still stings from time to time. I’ve noticed that I’ve wanted to just hangout with him recently. Like, just sit around drinking a beer and talking about sports and the kids and whatever else. We didn’t do a ton of that. I wish we did. And I wish we could now.
I bristle a little when people say that time heals. It certainly makes things different. And it’s definitely a part of the healing process, but time alone can’t heal anything. I’ve found family, friends, focus and…ferapy…has helped most. Ok, the alliteration didn’t totally work, but it was close! Seriously, being able to talk about things with friends, family and a good therapist has helped me get to a good place and focusing on the things that are important to me helps keep me moving in the right direction. I know that’s what my dad would want me to be doing.
So…Dad. I miss you. I love you. And while I know I can’t bring them with me and someone else is banging your snare, I’m gonna hang-on to your drumsticks.
In July of 2017, it was my honor to be the keynote speaker at the National Foundation for Ectodermal Dysplasias Conference in Washington, DC. NFED exists to “empower and connect those touched by ectodermal dysplasias through education, support and research.” My friend Josh Sundquist passed along the opportunity from them and I was so glad he did! They were a group with which I was unfamiliar, but the connection I made with them upon my arrival was swift and deep.
I remember that I got to my hotel pretty late and decided to order a drink and a dessert from the bar in the lobby. As I waited, I noticed a group of kids walking in and, to my surprise…they ALL had hands that looked differently than I was used to. I started to get excited and thought to myself, “This is amazing! Should I say something?! What are the odds they would be at MY hotel?!”
Turns out the odds were 100% because I WAS AT THE HOTEL WHERE THE CONFERENCE WAS BEING HELD and totally forgot. *head slap* See, ectodermal dysplasias can affect people in a multitude of ways, but one of the most physically obvious is how it can affect their hands. Instead of having four fingers, oftentimes they have two, looking somewhat claw-like. I remember sharing that story during my talk and everybody laughing and smiling. I learned SO much that weekend and had such a fantastic time gaining new perspectives from kids and adults, families and medical professionals, about physical differences with which I was unfamiliar. What we did share, though, was how those physical differences are perceived by others and how we can navigate a culture that oftentimes views physical differences as weaknesses instead of strengths.
So, when I started seeing social media posts about this new movie on HBO called The Witches and their choice to give Anne Hathaway’s character “scary hands” that look like many of my friends’, I thought of NFED. And my friend Meg Zucker and her boys. And Alex Barone. And it made me angry. And sad.
“It’s a fictional character, Ryan. Relax. It’s not that big of a deal,” you might be thinking.
Anne Hathaway
Let me respond with some of my initial thoughts about why this is so problematic. Honest to God, my first thought was, “You’re telling me that NOT A SINGLE F***ING PERSON INVOLVED IN THIS MOVIE thought that this could be an issue?” Not one person thought, “You know, people actually have hands that look like this and we might be furthering a stereotype that they’re scary by choosing to do this. Maybe we can think of another way to make her scary and evil.” Representation continues to be a problem in Hollywood. Not only on-screen, but BEHIND the scenes, at the tables where decisions are made. In the rooms where writers write. As my friend Nicole Kelly says every chance she gets, “Nothing about us without us.” There MUST be increased involvement with the disability community. There simply must be.
Physical disabilities are not a prop. They are real and they affect real people in ways that you will likely never understand if you don’t have one. My friend Nick Newell posted on Instagram about this and the responses are littered with rude, ignorant comments. Nick’s concern is not so much for himself as he’s developed a thick skin, but his concern is for those who haven’t. Children who have to deal with other rude and ignorant children and their equally as rude and ignorant parents.
While standing in line at my local hardware store not long ago, a boy about 10-years old told me loudly that my arm “is disgusting.” I tried to take in stride and asked if he had questions and he continued to say things like, “No! Your arm is BAD! And GROSS!” His mother did nothing. She stood there, writing her check, not saying a word. When they left, I apologized to those behind me for the awkwardness. Let me say that again… I, THE ONE WHO WAS BEING TOLD THAT MY BODY IS DISGUSTING AND GROSS, WAS APOLOGIZING TO THOSE AROUND ME BECAUSE THE MERE FACT THAT I EXIST CAUSED THE SITUATION. This shit happens to people on a daily basis and just because you don’t see it or experience it doesn’t mean it isn’t true.
Will this movie cause people to think that anybody with hands like hers is a witch? Unlikely. Will it help people to normalize interactions for people when they see someone with hands like hers? Again, unlikely. Is it the end of the world? Obviously not. But, could it and SHOULD it have been avoided? Absolutely.
Bottomline, I believe they made a poor decision and it will likely have more negative effects than positive for people who have ectrodactyly. And that’s a shame. Hollywood needs to do a better job of being mindful of disabled people and involving them at every opportunity. You can read more about my thoughts on this and listen to a podcast where I expand on it here if you are so inclined. I’m hopeful Robert Zemekis and Anne Hathaway and everyone involved with this will learn from the experience and intentionally make better choices going forward.
I would also suggest not watching the movie. The only way Hollywood will listen is if they see their bottomline affected by us, their audience. And hopefully they’ll hear our voices as long as we keep talking about it.
Six years ago today my dad had major heart surgery to repair a tear in his aorta.
Things would never be the same.
I might have shared this before, but it’s on my mind today, so I thought I’d do so again.
When my dad’s surgery happened, it was scary, but it went SO well. For us, at least. The repair was successful. I remember how difficult it was for him to be stuck in that recovery room for so long. I remember when they finally released him and he cried on the phone with me because he was so happy. He wasn’t really a crier. Kind of a case of, “like father, NOT like son.” lol I remember him actually saying to me, “I don’t even know why I’m crying, Ryan!” I told him, “Well, you had MAJOR HEART SURGERY and have been in the same room for over a week…it makes all the sense in the world to me!” I remember how many people shared their love and prayers and how happy we were for him to have another chance at life.
Looking back, though, it’s easy to see how things changed.
There’s a part of me that feels like it was the beginning of the end for my dad and that makes me really sad and angry.
I remember when he called us all in before his surgery to tell us to take care of each other. To be nice to each other. That we would be fine if something happened. Part of me thinks that he was sure he wouldn’t survive the surgery and that he had come to terms with it. That he was saying goodbye, not just in case, but because he thought it was time.
Then afterwards, during his recovery, he just couldn’t seem to comprehend this new life he was living. He didn’t seem to know what he was allowed to do and what would be too much. He talked to his brothers and sisters frequently about his awareness of his own mortality. He couldn’t comprehend how others who had major heart surgeries were able to “live normally” without constantly thinking about how their heart could stop at any moment. After his suicide, we found out through the note he left that he had been living with pain and fear and “wonder in his chest” for months.
I will always regret not questioning him more when he’d respond to my “How’s it going?” with “You know, gettin’ a little better every day.” I know he wanted to believe that, though, and I’m sure some days it was true. So, me questioning more probably wouldn’t have made much of a difference, but…I still regret it. It’s just who he was. He was a strong man who didn’t want to be a burden on anyone. Which eventually became too much for him to bear. At least that’s the way I see it. It got to the point where he couldn’t handle the pain and wonder and didn’t want to burden anyone else, so he took control of the problem in the only way he thought made any sense to him. I know he didn’t want to and that he felt terrible about it because he said so. But, it was also what he felt he had to do.
And that’s why, when I see those Memories on Facebook about his successful surgery, it’s bittersweet. Because, for me, it was the beginning of the end. And like I said, that makes me sad and angry.
I was actually thinking today, I never saw my dad’s scar. I don’t know what made me think of it. I just really wish he was around to show us. Maybe that’s weird, but I can just imagine him making stupid jokes about it. I’d take that over having to write this post any day.
So…that’s it. That’s how I’m feeling today. I know it’s a lot. Thank you for letting me share it. Thank you for caring about me and allowing me to process. I’m sure I will continue to do so as the years stretch ever onward. And I want you to know, I appreciate you.
Love,
Ryan
P.S. If you’re feeling scared or in pain or embarrassed or like a burden…that’s ok. But please, reach out to someone for help. Even just one person you trust. It can make all the difference. You can also call 1-800-273-8255 for immediate help. Love you.
We’ll get more into that in a minute, but let me overshare first.
Yesterday I wrote two posts about my physical health journey over the past several months. How it’s been going and some things that I’ve found helpful. Last night, however, I made pretty terrible choices. I ended up having three brandy old fashioneds and then ate a bunch of junk food, including, but not limited to, a warm tortilla with Nutella inside. (Side note: THAT WAS AMAZING.)
There was really no reason for it. At least that I was aware of.
Then I woke-up at 3:30am and remembered…today is my dad’s birthday.
Sometimes I think our bodies remember trauma even before our minds do. This has happened to me so many times in my life that I have to believe it’s true. Days where I’ll be sad “for no reason” and then Facebook reminds me it’s the anniversary of a death or difficult memory. Have you ever had that experience?
This situation also reminds me of something my therapist said once and it’s stuck with me ever since. She said (and I’m paraphrasing), “We all have a firefighter inside us. And their only job is to put out the fire of pain from trauma. A firefighter’s job is to put out a fire. Doesn’t matter if it’s a motor home or a mansion, if it’s filled with garbage or precious artifacts, their job is to put the fire out, period. Lots of stuff will be ruined in the process, but that’s not their concern. They are also not responsible for the aftermath, the clean-up. They go in, put the fire out, and leave. It’s the same with us. When we experience pain, our firefighter has one job: to end it. And they’ll do so by any means necessary, with no concern for the peripheral damage. Overeating, drinking too much, drugs, sex, violence, risky behavior, solitude…whatever it takes. And then YOU have to deal with the consequences. But, you’re not feeling that initial pain anymore! Instead, you’re overweight or driving drunk or getting arrested for any number of things. That’s why it’s so important that we do our best to recognize pain and seek to soothe it in healthy ways. But knowing this, we can also be more forgiving when we soothe our pain in unhealthy ways.”
So, I’m not dismissing or defending my behavior, but I do feel like I understand it. And I would never ever advocate for anyone to soothe their pain in unhealthy ways, but I also understand the trepidation of discovering and facing your pain head-on. But, you’re brave and I know you can do it. I promise I will, too.
In other news…yeah, Happy Birthday, Dad!
He would have been 68. I went and visited him at the cemetery this morning and it was so beautiful. It actually rained so hard on my drive there that I almost turned around. I’m glad I didn’t, though!
I think I miss our banter the most. Just talking about the Brewers/Badgers/Packers. I have NO idea how he would have dealt with what’s been happening the last few months, so those conversations would have been amazing! I also miss watching him interact with my kids. They loved him so much. And he was such a great grandpa. He would be SO inappropriate with them! lol I’m trying to carry on that tradition in his stead.
Sigh. I just miss him.
Oh, and don’t let me forget to get a piece of carrot cake later today.
Yesterday I gave an update about where I am currently with my health. Here are some things I’ve found to be very helpful for me.
First of all, read Atomic Habits by James Clear. This book has helped me SO much in regards to the importance of establishing health habits in all areas of our lives. It’s super interesting and so practical.
Next, find something that holds you accountable and forces you to be mindful about your journey. Mine is that TikTok account. Maybe yours is a journal. Or a friend with whom you feel comfortable being vulnerable. Whatever it is, BE CONSISTENT. Even if you’re embarrassed, frustrated, hopeless, sad…get it out. Every day. Multiple times a day if you need to! I think the greatest threat to our progress in this area is no accountability, so this is SO important.
The second thing is to eat smaller portions of healthier foods. This seems pretty obvious and it is. Quarantine has forced us to learn how to be better in the kitchen and I’m so grateful for that! We have about 5-7 go-to dinners that are healthy and easy to make and I’d suggest you find some for yourself, too. Just Google “easy healthy meals” and you’ll get a BILLION results. Just pick a few and see what works, what you like. And then adjust as you go.
Another thing I found to be a real eye-opener was when I started tracking what I eat and drink. It can be painful and embarrassing at first, but it REALLY helps you to make sense of why you’ve been getting bigger. It can be scary, too, because it’s like, “Wait, if I’ve been eating between 3000-5000 calories a day, how the crap am I going to live on 1500-2000??” I’ve been there. Trust me, it’s better to see the damage and to be honest so you know what you’re working with and where you need to go. So, every day I track what I eat and drink in my Lose It! app, even if I go WAY over my allotted amount for the day. I mean, whether I like it or not, I DID eat what I ate, so I might as well track it! This has helped me tremendously, but you might find that another method is more helpful. I have several friends who use WW and love it. Find the way that works for you.
Plan your physical activity. Listen, if you don’t plan it, you will likely not do it. It’s science. I go on a short walk every morning. I can’t tell you how many times I’ve woken up and didn’t want to. But I do it anyway because it’s just what I do every morning. And honestly, the reason I’ve been struggling with consistency with my workouts is because I haven’t been planning the dumb things! Then I just get tired and unmotivated and say “I’ll do it tomorrow.” Schedule it and do it. Also, it doesn’t have to be high-intensity! For all of April and May all I did was go on walks. No joke. I remember trying to do 8-minute abs and thinking to myself, “Well, I guess I’m never getting health again. Also, RIP me.” Start small and go slowly if that’s where you’re at. This isn’t a sprint. Develop the ability to stick with the little things over a long period of time. It’s going to help SO much.
Lastly, be patient with yourself. Starting can be exciting and you might be filled with motivation, but it can also super suck. I remember feeling so sad and hopeless and embarrassed that I had let myself get back to where I was. I’m really competitive and I was ashamed of how out of shape I had become and how hard it was to do simple exercises. I had to push through that and I know you can, too.
I like to think of it like this: How would I respond if my friend came to me and was like, “I’m so embarrassed. I’ve made terrible choices and now I can’t even do a sit-up! I have no idea how or if I’m going to be able to get healthy again. I suck.” I would be patient and understanding and encouraging. I would empathize. But I’m rarely that way with myself! It seems like we’re always hardest on ourselves. And there are definitely times we need to be pushed and pulled through difficult spots, but we can do that without being negative. Without being mean.
So, like…June. June kinda sucked for me. I’d do well during the week and then “blow it” on the weekend. The whole month was like that and I saw very little progress on the scale. Every Monday I’d be upset with myself for screwing-up again. And yes, I need to hold myself accountable for those decisions, but I was beating myself up to the point of wanting to just give up. But here’s the thing…June was full of HUGE changes in my life. And nationwide unrest. All while still essentially in quarantine. So, I had to look at the whole picture and when I did that I was able to see that 1.5 pound loss as a win.
So…there ya go. Eat better, move a little bit and be patient with yourself. You got this.
What kinds of things have YOU found helpful in YOUR health journey?!
My physical health has gone in cycles historically. If you’ve been here long enough, you’re well aware. I get big and unhealthy and unhappy and then I get HARDCORE about getting healthy again! So where am I right now?
April of 2019 I was the heaviest I’d ever been. Like, jaw-droppingly heavy (for me). Then, the switch flipped and I lost about 45 pounds in the next five months. At the end of August I hurt my back and it through everything off. I started making bad choice after bad choice and before you know it, I had regained a ton of the weight I had lost. I was embarrassed and frustrated and, honestly, somewhat hopeless.
Covid hit in March and shut everything down. You remember. I was at home all day every day and I had a choice to make. Would I just become bigger and more immobile? Or would I concentrate on my health again?
So, back on April 6th, I started again. I had gained all but about 10 pounds back.
The most helpful thing for me might sound dumb to you. I started an account on TikTok (@HealthyOneHanded) and every morning I give a one-minute update. I do a weigh-in and give a short report about the previous day and then talk about whatever else is on my mind. Sometimes I voice my frustration (June was a rough month!). Sometimes I talk about what’s been helpful for me lately.
It’s helped me to be consistent. Regardless of whether the day before was “good or bad,” I get on and talk about it. Because even though hundreds of people have joined my journey, these little videos are still ultimately for me. To keep me on track.
My focus over the last 93 days has been pretty simple. No official plan or program. Just eating better food and less of it while being active every day. That’s it. I use the Lose It! app on my phone to track what I eat and hit my calorie goals for the day (quality of the calories matters just as much as the quantity, just FYI) and I go for walks behind my house pretty much every day. I’ve been trying to be more consistent about doing more high-intensity workouts, but that’s still not where I want it to be.
Just by doing those few things, I’m back down 25+ pounds and on my way to where I’d like to maintain. If I continue the trajectory I’ve been on, I should hit my target weight in a couple months. But honestly, this is more of a long game for me than it’s ever been before.
June was tough, like I mentioned earlier. I lost about a pound and a half when my goal was to lose 6-8. That was really frustrating. But also, JUNE WAS BANANAS. I’m able to recognize that and be patient with myself. I decided not to weigh myself at all in July and just focus on eating healthy and working out/strength training and then we’ll see what happens on the scale come August 1st. I’ve also noticed my clothes are fitting better, which is probably an even better gauge of success than the number on the scale.
So, that’s where I am right now. I’m happy with how far I’ve come. I’m happy with the systems I have in place. I’m happy with the ideas I have for moving forward. I’m grateful for the encouragers in my life.
Tomorrow I’ll share what I’ve found to be most helpful so far for me and hopefully some of it will resonate with you, too!
All the birds I saw today could fly, but they did so in different ways. Some bounced through the sky like a tennis ball on a court. Some flew like a dart being thrown at a board. Some glided high and others screamed low to the ground. Some flitted and others wooshed their wings in big, powerful flaps.
House Sparrow
Some of them seemed desperate to get where they were going. Others appeared content to perch on a branch and rest for a while.
They’re a lot like us, birds.
We’re all moving through life and, while we’re all humans, we all do it differently. Some of us move fast. Some slow. Some are loud. Some don’t make a peep. Some are frantic and some are at rest.
And all of that is ok. Obviously there are exceptions, but for the most part, how you move through life is just fine. You might not do it like me, but that doesn’t mean you’re doing it wrong.
I’m grateful for my time outside each day, patiently watching my birds. It slows me down. It tests my patience. It makes me very happy.
I mean, except when they won’t stay still for my pictures, of course. But it’s that much more rewarding when I DO get the shot! 😊
Eastern Kingbird
So… However you’re moving through life right now is fine. Don’t compare how you’re doing it with how others are doing it. Assess your OWN journey carefully and consistently and make adjustments as needed, but don’t necessarily change just because you see someone else doing it differently. Be you. Move like you move.
“Marriage and parenting are two of the best and most difficult things you’ll ever do.” – Ryan Haack
Yeah, I quoted myself.
I had a great conversation with a friend the other day that made me think about this. He and his wife have a little guy with one hand and right now, they’re at different points on their journey of comfortability with it. They both love him beyond measure and neither are worried about HIS abilities, but one of them is more concerned about how others are going to interact/treat him than the other. And that’s made for some challenging conversations and situations.
I have to imagine this is incredibly common for parents of kids who have more/different needs. In fact, statistically, the divorce rate is higher for couples who are parents of a “special needs” child, so it’s definitely not something to ignore. I know it was challenging for my own parents. According to them, my mom was comfortable with my arm basically from day one, but it took a little while for my dad to get there. I remember my dad telling me that his mom, my grandma, essentially took me away from him in the hospital after I was born and told him, “Calvin, relax. Go take a walk. Everything is going to be fine. Ryan’s going to be great.” Thanks, grandma!
I also remember my dad telling me how difficult it was for him to take me to the park/grocery store/out in public when I was a baby because he was acutely aware of all the staring. “I’d see a little old lady staring at you with pity in her eyes and I’d look back at her like, ‘You wanna fight?!'” he told me. He was fiercely protective and I’m sure he perceived things that weren’t really there sometimes because his senses were so heightened. But that was his experience and what he needed to go through! Eventually he got to a point where it didn’t bother him anymore.
So, what’s my advice? I guess I’d view these more as my thoughts than advice.
I think good communication is key. This goes for anything, really, but especially in a marriage. And even more so when there are additional challenges! If good, clear communication is a challenge, enlist the help of a professional! I know that can be scary and somewhat expensive, but I really think it’s worth it. A third-party professional can help you see and understand yourself and your partner in ways that you can’t/wouldn’t on your own. It can be really difficult, but is ultimately SO good.
I think patience is also key. Maybe you have a kid with one hand and you don’t think twice about it, but your spouse always seems to be sad or upset or worried and it’s driving you nuts. Maybe you’re the one who is worried and you think your spouse doesn’t care at all and it infuriates you! Honestly, I think that’s all pretty normal. That’s why it’s so important to have that foundation of trust, grace, patience and clear communication. It’s so important to reiterate constantly that we’re on the same team so that when these situations come up, it’s not a “me against you” situation, but rather a “how do we best get through this together?” situation.
Ultimately – and I say this ALL the time – all we can do is our best, right? There’s no one right way to parent, but I think there are things that can help more than hurt, so I say, let’s try to do more of that, ya know? Love our kids and love each other. We all make mistakes, but as long as we’re loving each other through them, I think we’ll be ok.
I’m going to try to write more often, so please let me know if this is helpful. And ask me any questions you have!
Also, please share your thoughts and stories in the comments below!
