I've always believed there is a lot we can learn from others, and know that my viewpoint isn't the only one out there. As I'm about to turn 52, I'm sometimes more jaded than I was at an earlier age, and in others ways more content and sure of myself. I also know firsthand that the voices of people with disabilities aren't often heard because we are a silent minority sometimes dealing with health issues, social isolation, and other things that need our attention more than speaking up. So today, I'm turning my blog over to other voices.
The first voice I want to bring is that of Oliver Collins, who, like me, was born with the genetic condition fibrodysplasia ossifcans progressiva. He unfortunately passed away on April 21, 2021, due to a catastrophic brain injury suffered as a result of a fall from his wheelchair. I asked his mother Julie to pick one of her favorite pieces of writing from his social media postings. Ollie had recently started posting often to raise awareness of people with disabilities on Instagram and on his own blog. He also had a story posted on Love What Matters. In a strange turn of events, I had just told my own mother that she should read what he wrote there shortly before I came to the computer and learned he had died. Thought Ollie is no longer with us, I want his words to live on.
Do I wonder sometimes what my life would be like without a disability? How different my life would be without limited movement or chronic pain? Of course I do, sometimes.
But then I stop and remind myself of a few things:
1. the challenges that have presented themselves because of my condition have allowed me to cultivate quite inventive problem solving skills, to overcome the many, varied obstacles I face in my everyday life.
2. facing these continual challenges has helped make me a very resilient person, who is determined to not let anything stop me from doing whatever I set my mind to.
3. I have had the benefit of developing a unique perspective in how I approach life and everything that comes along in it. Yes, there are a lot of difficulties. But having gone through what I have, I now have a special appreciation for finding happiness in the small things and in the little, everyday victories.
4. going through this has bought our family a special closeness that really comes through facing obstacles together, and we are all stronger because of this.
We often say "the grass is greener" [on the other side], and compare ourselves to others or what our lives could be. But just because our lives could have been different, that doesn’t necessarily mean it would have involved less challenges, or easier challenges, or been any better as a whole. Our lives are special, and need to be appreciated for how valuable/miraculous they each are.
I also wanted to highlight another young voice that is worth hearing. This is Erin, whom I first encountered when she was two years old and her family was attending a symposium of scientist, doctors, and other families who share my medical condition.
It’s funny how I used to hate putting my hair up in pony tails because I was so self conscious of my tiny shoulders. People used to comment on them, which made it even worse. I used to be so self-conscious of a lot of things, and now I try to embrace it all. Cute sweaters from Target make up for it, but all it really takes is for you to see the big picture. In the end, there are a lot more things people could be staring at me for, and there are a lot of other things I should be worrying about instead of my tiny shoulders. I was so insecure that I refused to put my hair up, but at the end of the day what’s really the point of hiding our insecurities? Pony tails are freaking awesome and they keep my hair out of my face—which besides looking super cute, is a perk. I took that away from myself and for what? Truth is, looking back on all the things I used to fit over in my head seems silly now. Maybe it’s because my situation changed and there are more significant flaws that I find myself nitpicking over in my head. Who knows? There might be small things that irk you and make you feel insecure about yourself, and that’s okay. But years from now you might look back and think “I’ve changed and grown and I’ve embraced that part of myself and all it took was for me to see the bigger picture".
Now that Erin has shared her favorite post, I'll share one of my favorite things that she has written. I hope you will check it out.
P.S. I took myself so seriously in my twenties. I'm glad Erin has realized that humor helps!
This is the time of year when my thoughts turn to fairy gardens. A few musings for the curious…
First, I’d like to believe that fairies do exist. They get a reputation for causing mischief, though I think they just want to enjoy the natural world and do their own thing. Before I started growing tiny gardens, I visited Disney World with my young niece. She asked if Tinkerbell really existed. I said, ‘Yes, she’s just very tiny,” much to my sister’s dismay. I came across this quote many years later, and I think it sums up why I said yes. Madeline L’Engle, most well-known for writing A Wrinkle in Time, said, “But if I knew everything, there would be no wonder, because what I believe in is far more than I know.” I’m all for keeping our sense of wonder no matter how young or old we are.
What is the difference between a miniature garden and a fairy garden? The terms are often used interchangeably. Technically in a miniature garden, everything is done on a miniature scale—miniature plants and miniature accessories, all in proportion to each other. A fairy garden doesn’t have to ascribe to set standards. One can use miniature plants or full-size plants and mix ratios. Sometimes I use larger accessories and sometimes I use small ones. Sometimes I use larger fairies and sometimes smaller ones. Sometimes I don’t use any fairies at all and imagine visitors coming to my enchanted spaces, especially at night.
How to start? I started relatively small, with a multi-tiered container garden. I think starting small is a good way to start. But as those who know me well know, I often go “all in”. So the gardens grew. Don’t ask me how many I have this year! I’m not even sure I know. The stores where I get my plants had some new things, so I confess to getting carried away with the possibility of testing some new plants in my gardens. I’m curious to see how well they do. I also plan on spending a lot of time on my little deck this summer.
Where to find plants and cute things? These are some of my favorite online places to shop. You can also find miniature accessories at craft stores and garden centers. Garden centers may have some miniature varieties of plants, though if you wish to "go small" with your plants, then I recommend a place that specializes in plants for miniature gardens. They will have the best selection and advice.
Miniature Garden Shoppe
Two Green Thumbs
My Fairy Gardens
A few extras you may want to include:
Fairy Berries - The tiny balls of glowing goodness are truly special. They are battery-powered, so I don't recommend running them all of the time! The linked site sells them in bulk, but you get 10 times as many for the price of one package normally!
Solar fairy lights - No need to worry about battery packs or if they are waterproof
And UV spray to protect your accessories from fading in the summer sun. Don’t learn what I learned the hard way. Available at craft stores.
And finally, a link to my Pinterest board for more inspiration.
If you read this and it inspires you to grow your own fairy garden, I would love to see how it turns out.
It was just about a year ago that I wrote my first and only post referencing the pandemic. It certainly wasn’t the easiest year of my life (our lives). It certainly isn’t over either, taking into account both the worldwide picture combined with the fact that it’s very risky for me to take the vaccine because intramuscular injections pose an enormous threat to people with my genetic condition—that is how my jaw fused when I was nine following a dental procedure.
So why am I saying, “It wasn’t all bad.” Well, I try my best to look at life in shades of gray instead of black and white. And I try to focus on the positive aspects when I can because it makes the more difficult things more manageable. Don’t get me wrong—there are also plenty of times where that doesn’t happen. Again, shades of gray.
Here are some things that made life more bearable this past year, as well as some lessons I’ve learned.
Card-making. In the last few years, I’ve enjoyed making hand-made cards. Well, truthfully I help instruct my mom and part-time caregiver to help bring these creations to life. It’s not always a process that goes smoothly, and it certainly isn’t the easiest way to send someone a card. (Or as said on a stamp set, “This card cost 10x more than a store-bought card because #onlythebestforyou” and “I came, I crafted, you’re welcome”, which in its own way appeals to my Latin scholar self—not sure if that was intended as a reference to "Veni. Vidi. Vincit...I came. I saw. I conquered." or not.) We are getting better at the process though. This was one of our earliest methods of coping with the the uniqueness of the past year.
Bringing back the blog. Okay, I haven’t been the most regular writer and hope to change that this year. Writing has always been something I’ve enjoyed, though as with card-making it takes time and a lot of thought. Practice is the only thing that makes it easier, and it allows me to express what I’m feeling, which is a valuable thing.
One Little Word. Since 2011, I’ve participated in an online class called One Little Word. Last year my word was play. Maybe not the easiest word during a pandemic. My album isn’t done, but I have done the prompts:) This year my word is rhythm. My guiding quote is, “Take heart. Breathe deep. You are free to find new rhythms here” by Morgan Harper Nichols. Without this word in my life, I might have never learned about a tongue drum—named for the carved tongue-shaped grooves that create its different tones. Anyone who knows me knows that I am an extremely thorough researcher. I looked into these special drums that require no musical skill, but I hadn’t purchased one—until this past weekend when I broke out of my home for my first fun outing, outside and masked (mainly because of lung restrictions that keep me in the high-risk category and the fact that there are usually lots of people at craft fairs). I was looking in a different direction when I heard a sweet sound that I thought I recognized. I turned around. Yes, a tongue drum. Yes, I bought one after asking lots of questions. In fact, I bought a slightly dented one, something I wouldn't have considered beforehand. (You really can’t tell unless you know where to look). And as an added plus, my mom finds it relaxing to play and the artist is making a special attachment that I can use to attach it to a belt and place it in my lap so I can play it myself. Apparently, he has done that before. I never would have thought of that either. You meet amazingly wonderful and talented people at craft fairs.
Mind-body work. While I’m not the biggest fan of the fact that social media tracks what we search and where we go to provide us with targeted ads, sometimes that does have an upside. I get chronic headaches. I can have good days, bad days, good weeks, bad weeks…you get the picture. My life is often controlled by either headaches or my attempts to keep them under better control. In summer 2020, I saw an ad for a pain-relief app, which uses educational audio, meditation, somatic tracking, and journaling prompts to help people with their symptoms. It’s really designed for people with no structural issues or medical conditions who nevertheless experience chronic pain. I decided to take a chance anyway because a. I don’t have headaches or pain all of the time and b. not all people with my disease have headaches or chronic pain. So theoretically I could gain some benefit. What would it hurt to try? The app helped a bit, but what has made a bigger difference was taking a 3-month online class in the fall, followed by working individually with a mind-body coach whom I found through one of my classmates. (I just began that journey in March.) It’s still very much a work in progress, but my symptoms didn’t develop overnight either. One of the best things to come out of the experience was a sense of camaraderie with my "classmates". We still meet once a month. One of my group members also has a wonderful blog on Facebook that’s full of insight. (And when she's able to travel again, I assume it's also full of stories of her walks across the United States to honor veterans.)
Grace towards myself and others. The pandemic has had the unfortunate downside of making it easier to judge other people. That person is living life in fear. That person is being so careless. I admit I took great offense to people saying I’m living my life in fear (not me specifically) because I and my family made what we felt was the best choice for us and stayed home except for grocery shopping, which seemed safe enough and allowed my mom to get out of the house once in a while. I admit that I had strong feelings when I saw people do what seemed like unsafe things at the time. I’m trying to do better.
Music. I occasionally go to concerts, though it takes a lot of effort and planning. Downtown Nashville doesn’t have lots of places for oversized vans with wheelchair lifts. And I have to hope I don't get a headache or at least hope it's bearable. The pandemic has been a true blessing. This past weekend I attended 4 concerts in a 24-hour period with better seats than I could have had if I had been there in person. An added plus is that the lead singer (now also a solo artist) of one of my favorite bands in college hosts multiple concerts a week, selecting a charity for each one and taking requests for songs. I also love that his “regulars”, known affectionately as squirrels because they can distract him from playing sometimes, chat with each other during the concerts.
Virtual traveling. Okay, for me this was actually a thing before the pandemic. I called it “virtual vacations”. I would research different areas—my favorite may have been the North Pole vacation suggested by my niece many years ago. Apparently, you also really can take a trip to the North Pole! In 2020, I got to attend my first family gathering of families dealing with my medical condition in 20 years, as the annual meeting was held virtually. There’s simply no substitute for the sense of community created by being with other families who understand exactly what you go through on a daily basis. Here is another one of my favorite pandemic “trips”: I went to Keukenof Gardens in Holland, which even during "regular" years is only open 8 weeks per year because it takes nearly a year to plan for its beautiful spring blooms. In 2020, no one was able to visit in person. If you love gardens, the videos are breathtaking.
Pets. I’m not sure who got the better end of the deal. Pets who had their families around all of the time or the people who loved them. Enough said.
Letting go. Of so many things, whether it was cleaning out my craft closet or the more hurtful feeling that I am a burden. That’s an understandable feeling when I am dependent on someone else to help me with nearly everything in my life. Instead I often needed to remind myself that much of life is both give and take and that there are things I can do to help others as well, whether it’s computer-related things (one area where I am independent) or helping bring out creativity in others. The last year has just been so tough, especially knowing that my family has sacrificed a lot to keep me safe during the pandemic. I know everyone was at risk to some degree, but not as much as I am with my limited lung capacity. That has really brought back these negative feelings in a way that I don’t usually dwell on. This song became my unofficial anthem of the year.
Meal deliveries and supporting small businesses. I think the past year has been harder on my mom than anyone else in my family. Getting meals delivered on days when she was especially tired was a lifesaver. It also helped us support local businesses. And as much as I love the convenience of Amazon, this past year was the year I really took a close look at how important local businesses are to a sense of community.
So what have you learned to appreciate more or what lessons have you learned this past year?
FOP affects each person differently. While there are certain similarities among people with FOP, there are as many differences. It is impossible to predict who will be affected minimally and who will be affected more seriously and more rapidly. There is one certainty about FOP: it is progressive. It also has a way of sneaking up on a person when least expected, at a time when the complacency of everyday life has set in—just at the moment when the latest limitations no longer seem the worst thing imaginable.
This begins a phase which I refer to as "When the wanting is not enough" because wanting the pain to stop and wanting life to return to the way it was, is not enough to stop the pain or to stop life from changing. But ultimately "When the wanting is not enough" is not about resigning yourself to the fact that you are not the one in control of your own body; it is recognizing that things don't always turn out exactly as you had planned. It is about accepting things so that you can go on living. It is not an experience that is reserved only for people who have FOP and other disabling diseases, but it is one that people with FOP must deal with earlier in their lives and on a more regular basis.
What is the hardest part about having FOP? Sometimes it is the pain. Sometimes it is that only one in two million people can understand what you are going through. Sometimes it is knowing that you are often dependent on someone else for the little things that most people take for granted. Small victories—such as surprising my mom on Mother's Day when I was 12 by dressing myself for the first time in my memory (and maybe ever)—sometimes count for much. In general, however, I think that FOP is probably harder on parents and other family members than it is for the person who has FOP. I do not remember what it was like not to have FOP. So, although there have been times in my life when I wished my condition would go away, I really cannot picture my life any other way. For me, I think the hardest part has always been not knowing what the outcome of a flare-up would be and how much motion might be lost. It is hard to make necessary changes to one's life until these facts are known. The interim period is one of fumbling in the dark and struggling to cope.
FOP controls my body, but it does not control my life. I know that I am a stronger person because I have FOP. Dealing with FOP has given me the self-knowledge and strength of conviction that some people never find. We all have certain strengths, certain weaknesses, and certain problems that we must overcome in our lives. Unfortunately for me, my weaknesses are the visible kind. They are the first thing people see and occasionally the only thing that people see. Fortunately, the people in my life expected nothing but the best from me, and as a result, I have expected nothing but the best from myself.
In what might be the ultimate irony, rather than hindering what I can do in my life, I think that I have accomplished more because I have FOP. Or at the least, I think my life has more meaning because of the path I have chosen, a path influenced by my own life experiences, good and bad. There are two accomplishments of which I am most proud. One is my career as a teacher and tutor, though not because of any doubts on my part that I could do it. I figure that if I can get through FOP, I can get through anything. The other is my participation in the International FOP Association, a support group for families dealing with FOP.
At times, my decision to become a teacher surprises me. Throughout college and almost to the moment I applied to graduate school to obtain a Master of Arts in Teaching, I was determined not to be a teacher, mostly because , at that time, people assumed that is what a person who majors in English and history should do. Also, from personal experience, I knew that adolescents, often caught up in their own worlds, can be unwittingly cruel to a person with a disability. At least that was my own experience. (I wasn’t teased, though I did feel ignored and overlooked.) To make matters worse, I was (and in many ways still am) painfully shy and afraid to reach out to people for fear of being rejected, or out of determination not to be a burden to other people. My high school years were at times bearable and at times miserable. I was determined to distance myself from those years. I also knew that teachers were overworked, underpaid, and sometimes under-appreciated. In the face of these cold, hard facts, I have since decided that I did not choose teaching as much as it chose me.
As a teacher, I was pleasantly surprised at the open natures of many of the students I taught. If given the opportunity, they were not afraid to ask questions of me. ''Why can't you sit down? Is FOP painful? How many people have FOP?'' In all seriousness, a student once asked me whether I sleep standing up. I easily answered questions about myself, questions I wish my classmates years ago had the courage to ask. I find that such questions served as a means to get past my disability. Undoubtedly, the hardest question a student ever asked me was ''Did you like it as a student here?'' during an occasion in which I went back to teach at my old high school.
I used my past experiences to make myself a better teacher and tutor. I tried to have compassion and patience, which my peers often lacked. I looked for strengths in my students before I look for signs of weakness. I aspired to teach them that they can do anything they set their minds to do if they wanted it badly enough. I gave them my best and expected nothing but their best in return.
The other thing in my life of which I am proud is the role that I played in the IFOPA. It all started rather inauspiciously. In 1989, I knew of no one else with FOP. Now I know of hundreds, many of whom I have met personally at IFOPA family gatherings. And when I was first diagnosed with FOP, my family was given very little information. As a result, one of the first things I wanted to do when I found the IFOPA was to ask if I could start a resource center for families. Little did I know that would later lead to writing and editing guidebooks and newsletters, publishing and managing a website, coordinating an e-mail discussion group, answering e-mails from all over the world, and coordinating international meetings.
A discussion of the impact FOP has made on my life would not be complete without mention of the impact it has had on my entire family: my parents, a younger sister and her family, and myself. I know it has been hard for them to watch me in pain and not be able to do anything about it. At times they have all made sacrifices for me. When I was younger, there were times when my sister did not get as much attention as she deserved because my needs were more pressing. If there is anything I regret, it is that my life affected hers so much. There were many times when my parents put aside their own needs for mine. My parents have often served as my arms and my legs, doing for me the things I could not do for myself. It is only because of them that I am where I am today. I sometimes feel extraordinarily guilty that I demand so much of their time. At other times, I am selfishly torn between their needs and my own. When I was diagnosed with FOP almost 45 years ago, none of us knew what lay ahead. Thankfully, we took things one day at a time. I am not sure if you can take FOP any other way. I think we all learned a lot in those early years about what we could handle. Together, we have done our best to see a world full of challenges, rather than a world of problems, a world with possibilities, rather than a world of limitations.
P.S. This is an older family photo because it's often hard to get my entire family in the same place at the same time AND in the mood to take a photo at the same time. It remains my favorite family photo after all these years.
Most people would have a hard time imagining life with fibrodysplasia ossificans progressiva (FOP), an extremely rare genetic disease in which bone grows in muscles and connective tissue, leaving joints of the body frozen in position. In a sense, the body is forming an extra skeleton. Having lived with FOP for most of my 51 years, I would have a hard time envisioning life without it. FOP has brought great pain, many tears, and sometimes alienation from a world that seeks perfection in life. FOP has also taught me some important lessons about myself and the world in which I live. I readily admit that my feelings about FOP depend a great deal on how closely I feel its presence as a silent enemy within my own body. Yet at all times I cannot help but think that the worst parts of my life are intricately tied to the best parts of my life—that my struggles have made the good things in my life count for more.
FOP can strike as a result of trauma—bumps, falls, injections, and surgeries can lead to an FOP flare-up. FOP also strikes spontaneously. There are also times when, despite obvious trauma, FOP does not appear. In other words, I never know when or where FOP will show up. Was it something I did, and something I could have prevented? My parents likely worry about such matters to protect the child they created, and I can understand that. I think about that sometimes too. But if given a chance to lead my life over again, I think I would still make the same choices, even the choices that hurt me in some way. I don't want to be so afraid of getting hurt that I forget to enjoy life.
Though it might sound strange, as a child I never thought of myself as different, even though there were certain physical things that I knew I was unable to do because I could not raise my arms. One particular incident stands out in my mind because it changed all of that. One day, when I was 10 years old, my teacher saw me sitting on the sidewalk during recess while the other kids played a game called two-square. To play this game, two children bounced a ball back and forth in a grid until one failed to hit the ball. The teacher convinced me to try it and told the other students to "go easy" on me. This special instruction soon proved to be unwarranted, as I quickly turned into a very capable player and even moved to a four-player version of the game for a bigger challenge. It was the first time I had done anything physically challenging in my life, and it felt good.
My parents encouraged me and painted a court in the garage where children from the neighborhood would come over to play after school. Then, on the last day of school, I fell, injuring my knee. I did not give the incident much thought, for at that time I felt that it would take a much more traumatic event to bring on an FOP flare-up. I soon learned how wrong I was. That incident possibly started a painful four-year cycle in which I lost the motion in my left hip and knee (I say possibly because the initial injury seemed to resolve after a summer). By age 12, however, I had to rely on crutches to walk. I also lost the sense of innocence. The childhood feeling of invincibility that many children seem to hold onto until adulthood was gone. I learned just how simply and quickly things could change. But even if I could turn back time, I would still choose to have the experience—despite the pain—both physical and emotional. My memories of playing four-square mean more because of what I have gone through since then.
And, amid the pain and tears, I was introduced to the person who remains my friend an amazing 40 years later. Our friendship is one of the few relationships in my life where I have never felt guilty about being needy, dependent, and demanding (of attention and time) because she chose to be my friend both because of and despite my disability. And I did not need her so much as we needed each other. We recognized a loneliness in each other that can be common at that awkward age. She enjoyed helping me, whether it was carrying my books or making me laugh during a flare-up cycle. I never felt that she was doing these things because she felt sorry for me. Because of those things, I was able to open to friendship and being there for her as well.
Coming up: Part 2
Why I started this blog. When I was planning my kindness challenge, I gave all team members a checklist of 50 acts of kindness. I quickly realized it would be helpful to have a place to go to get more information about some of them. Most of them are relatively easy to do, though a few were more unique (as are all of us!) and required a bit of advanced planning. I wanted to make the experience as friendly as possible. A website. A blog. Yes!
At various times in my life, I thought about creating a website and blogging—at least after it became a thing. I wanted to share information about life with a disability and my life with a rare genetic condition in particular. Yet there were already places to learn about FOP and a guidebook to read. I didn’t want to reinvent the wheel.
So I waited until an idea came to me. My blog would be a place to share kindness and little pieces of my life that I hope others might appreciate. I am the first to admit I haven’t been great at showing up here. I’m still a work in progress. This year one of my goals is to revitalize my website and blog.
I’m starting with the project that was one of my favorites during the kindness challenge. One of the items on the list of 50 was to “create your own act of kindness.” My team got a bunch of glitter, water bottles, and set out to make calming jars. Originally designed with children in mind (thus their other name of time-out bottles), they made us feel calmer and happier and we wanted to spread the joy. Here is what we wrote on the notes we distributed with them: "The is a mindfulness jar, also known as a calming jar. Mindfulness is the basic human ability to be fully present, aware of where we are and what we're doing, and not overly reactive or overwhelmed my what's going on around us. Shake it and watch as swirls of glitter move at their own graceful pace from one end of the bottle to the other." Download a set of the notes that are ready to print if you would like to spread some glittery kindness around.
There are a lot of different instructions out there. These instructions worked best for us.
And thank you to my teammates and all others who participated in my little challenge to add more kindness in the world.
I was very excited when I first started writing here. My little corner of the world. Somewhere along the way, life seemed to get in the way. Well, I’m determined to start again—any day is a good day for a new beginning rather than waiting and wondering what might have been.
When the pandemic of Covid-19 came along, it was as if some sort of switch had turned off. One day we could meet in person and then suddenly we all found ourselves physically isolated from family and friends. As if that wasn’t tough enough, we became isolated from the physical ability to be out in public, whether it was park visits or other sources of recreation or difficulties with finding food (and toilet paper) on supermarket shelves.
When I first created this space, I planned to write about what it was like to live my life mostly from my home, going out only if really needed to do so or if I really wanted to do a particular activity. It’s a bargain I’ve struck with life to keep me functioning as well as I can and with minimal pain. You see, in addition to having the rare disease fibrodysplasia ossificans progressiva, I sometimes get brutal headaches that can be, in some ways, even more debilitating than my daily life with FOP. (See my next post that is more specifically about FOP and living life with this extremely rare disease. Coming soon.) Particularly in the last few years, I’ve been able to manage the headaches a bit better by doing some things that seem to raise the threshold for getting headaches and help them be more manageable most of the time when I do get them. However, they still remain a factor in my life.
When social distancing became a thing (admittedly one we wouldn’t have chosen!), I had all of these plans to try to use the skills I’ve developed to be what I call “happy at home” to help others manage the time better. Within the first week (Okay, to be honest the first night!), I realized that what I’ve learned doesn’t even help my loved ones much of the time, particularly my mom who is my full-time caregiver. Like everyone, our household has struggled through this strange season. We muddle through as best we can. I’ve also realized that my world functions because of the flow of a small but mighty group of people in and out of my home. More than ever, I’m extraordinarily grateful for them and realize how blessed I am.
I know that some people are starting to venture out. Because of my extremely limited lung capacity and my disability, as well as my parents’ ages, we are not going out yet except to get food. We are not inviting visitors, including family (My sister lives nearby and is a nurse.) into our home. We have to wait patiently and hope for the best. If you are venturing out, be safe and be kind.
On Mother’s Day in the U.S., I’d like to close by saying how grateful I am for my mom. This picture was taken a couple of years ago when we went to the Sunday Market in nearby Franklin, on Mother’s Day.
Most years I promise I have quiet birthdays with my family. This year and last year were notable exceptions. On the eve of the 50th anniversary of my terrestrial debut, I wanted to share what I did last year...
I wanted to do something special to celebrate my birthday last year with those closest to me. After a lot of thought, I decided to do a mass release of monarch butterflies into the sky. Why butterflies? Well, butterflies, particularly monarchs, have become a symbol to people with FOP, the rare disease that I have. Butterflies go through cycles of changes. They must adapt to new circumstances. They are symbols of hope and new beginnings.
There is a Native American legend about the release of butterflies. If anyone desires a wish to come true, it is necessary to capture a butterfly and whisper that wish to it. Since a butterfly can make no sound, the butterfly cannot reveal the wish to anyone but the Great Spirit who hears and sees all. In return for giving the beautiful butterfly its freedom and releasing it to the sky, the Great Spirit always grants the wish.
I love thinking of the butterfly in these terms, and I chose to wish for two things that mattered the most to me. I hope these wishes come true with all of my heart. As you watch this video, I invite you do the same, just as if you had been here in person to share the experience with me.
I also had a second reason for doing a butterfly release, especially last year. I normally don’t think about the fact that I have a 50% chance of living past 41 and I’m currently 49. I prefer instead to live in the spirit of this quote from Frederick Buechner: “One life on this earth is all that we get. Whether it is enough or not enough, and the obvious conclusion would seem to be that at the very least we are fools if we do not live it as bravely and beautifully was we can.” But mortality feels a bit closer this year, as I’ve known three people with my disease who recently died who were much younger than I am, was well as a good friend who was near my own age. So while most people probably don’t celebrate 49 as anything special and instead celebrate the momentous number of 50, I’m choosing to cherish 49, and every year hereafter, knowing that nothing is guaranteed in life. I’m choosing to celebrate those we have loved who are no longer with us for touching our lives. I’m choosing to celebrate butterflies.
“A butterfly lights beside us like a sunbeam.
And for a brief moment its glory and beauty
Belong in our world.
But then it flies on again.
And though we wish it could have stayed,
We feel so blessed to have seen it.”
A little explanation of what I mean by courage, kindness, and other things.
Each year I participate in a project called One Little Word. This year my word is courage, though maybe not for the reasons you might think. This post is from my January prompts, which help us figure out where we want to go with our words.
Definition (from Brené Brown): The root of the word courage is cor, the Latin word for heart. In one of its earliest forms, the word courage had a very different definition than it does today. Courage originally meant “To speak one’s mind by telling all one’s heart.” Over time, this definition has changed, and today, courage is more synonymous with being heroic. Heroics is important and we certainly need heroes, but I think we’ve lost touch with the idea that speaking honestly and openly about who we are, about what we’re feeling, and about our experiences (good and bad) is the definition of courage. Heroics is often about putting our life on the line. Ordinary courage is about putting our vulnerability on the line. In today’s world, that’s pretty extraordinary.—Brené Brown
My reason why: Notice that instead of giving a definition of courage from a dictionary, I used Brené Brown’s overview of the word. The historic definition of courage and her interpretation of it is what pulls at my heart. I have three main goals that I think will help me embody courage: work on a special needlepoint project again (a personal challenge and a sign of deep love); do more memory keeping (creativity and belonging); and spread kindness wherever I can.
One of my favorite quotes about courage: “COURAGE doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.”
My mantra: "Courage, dear heart" from C.S. Lewis
Note to myself: You have set big goals for yourself this year. Remember, that is one of the ways you work best. Make the things you love a habit. When your fears are talking too loudly, listen to them and decide if they are getting in the way or trying to teach you a lesson. (It’s okay to be afraid sometimes, even if your word is courage.) You can do this...not in one day, but little by little...It all adds up. Keep showing up and make it happen.
More kindness (to others as well as myself)
Having the courage to follow my heart and intuition
Have the courage to try even if I think I might fail—It definitely won’t happen if I don’t try
Let go: I want to make sure that I’m not letting the things I can’t do interfere with the things I CAN do.
In what ways is my word already part of my life: On most days, I will tell you that I’m just living my life—disability and all. It’s not easy, yet I don’t think of myself as especially courageous in the sense that many people think of the word. However, I believe that I am a stronger person because I have FOP. I just have to remember that.
What do I want more of and less of:
More faith and love, Less fear.
More celebration, Less comparison (In particular to the younger me that had more mobility and endurance).
More purpose, Less wasting precious time.
Less perfection (which doesn’t exist!), More COURAGE
What do I fear most this year: I said I wanted vulnerability, so here it is right up front. Even though I truly believe that FOP has made me stronger, I also hate the things it tries to take away. And sometimes that includes confidence in myself and what I’m capable of doing. I’m going to try my best not to let it be that way this year.
What am I mot excited about this year: Showing myself that I can do hard things. Getting back to unfinished projects that have been on the sidelines far too long.
Link to my Spotify playlist Courage, Kindness, and other Things
I can't believe I'm doing this. BOTH starting a blog and the Kindness Matters Challenge. For my 50th birthday this year, I’ve decided to celebrate by committing myself to 50 acts of kindness from June 6 to 30. As some of you know, because of a physical disability, there are many things that I can’t do without help. So part of my efforts will involve acts of kindness towards the people who help me on a regular basis. Other efforts will be acts of kindness for the community and the world in which I live as part of an effort to show people that kindness matters and that it has a ripple effect that can spread in big and small ways to make our world a better place.
What separates my kindness birthday challenge from similar attempts by others to do so is that I can't do this on my own. So family and friends have graciously offered to assist me in making my dream a reality.
You see, I have an extremely rare medical condition called fibrodysplasia ossificans progressiva, or FOP for short. FOP causes bone to form in my muscles, joints, tendons and other connective tissue, progressively and significantly restricting movement. In a sense, my body has an extra skeleton of bone that imprisons my body. One of the only things I can do independently is use the computer. I also spend most of my time at home because of endurance issues, going out only when I need to do something or when there is something that I really want to do. Don't worry about me though—those closest to me know I nearly always find things to occupy my time.
If you are reading this and believe in the importance of kindness, I hope you will consider doing some of the things on my list.
P.S. It doesn’t matter to me if you do one act of kindness or all 50. The point of this is that the world becomes a kinder place when we work together to make it happen.
Hello. My name is Sharon Kantanie. I'm 51 years old. I have an extremely rare disease called fibrodysplasia ossificans progressiva. I believe in courage, kindness, and other things. Welcome to my little home on the world wide web where I hope to share information on the Kindness Matters Challenge, my life, and the things that matter most to me.