Because he knew about me going blind and having a heart problem before he asked me out.
Because when he asked me out and my answer wasn’t “Yes” or “No” but a loaded “I struggle to feel safe with men” he immediately responded that he had suspected as much and would date me wherever, however would make me feel comfortable- that I didn’t have to say yes- but that the reason he was asking me was because he wanted to spend time with me.
Because we share the same priorities and values.
Because he caught me and held me up- telling me he was happy to spend more time with me- when our first kiss mingled with a heart episode caused me to collapse.
Because kissing him still makes me weak in the knees… and weak in the head.
Because we can talk about everything as if it is anything- even the hard stuff.
Because he helps me to see that a happy family can be just the two of us.
Because he holds me gently when I cry when it (surprisingly) still hurts that I can’t have children…
And whispers in my ear that I am most definitely not a wicked stepmother…
Because he reads to me, anything I want, because he knows it is hard for me (and he loves to read aloud).
Because he brings me a flower every week to celebrate us…
And channels Gene Kelly when it is raining and we’re under an umbrella together.
Because at meals he takes my hands in his when we are finished and just talks with me.
Because he listens to and truly values what I say
And what I think.
… Because he can be quiet with me
… And because the quiet with him is comforting.
Because he considers me a blessing.
Because when I tell him I can’t see his expression so I need him to tell me what he is thinking- he immediately does- and one evening it happened to be this:
“Melanie Boudwin, will you marry me?”
Because 20-some-odd degree weather and love (even for a Southern United States girl like myself) can look like this:
For these and for a thousand other becauses, he made it ridiculously easy for me to say, “Yes!”
I have friends and family that encompass the entire political spectrum in America. I’m grateful for this. I’m especially grateful for those who are thoughtful about who they vote for, even when we’ve canceled each other’s votes out in various elections.
Which is why I won’t be encouraging you to vote for a particular party or a particular person this election, but is why I will ask you to vote. Don’t want to vote for the major candidates for president? Vote third party for president and then make sure to vote for the state and local representatives who you feel are the best choices on the ballot where you live. Then relax for the evening. (Yeah, I know.)
Can elected officials mess things up? Most definitely. But remember in all of this that America is more than an individual in office. It’s us. It’s the people who hold doors for people, pick up litter, follow laws that irk them while trying to improve them at the same time. It’s the people who watch out for the hungry, the discouraged, and the voiceless. It’s also the people who make us nuts, who challenge our patience and our positions on a regular, sometimes daily basis. It’s people who- more than any nation ever- have bloodlines that mix royalty with peasants, East with West, North with South, and believers and non-believers of every kind. We are the world’s mongrels and mutts- and I don’t see that as being a bad thing.
Because ultimately, as one of the National Geographic books from my childhood told me, we are all made up of stardust. And because The Empire Strikes Back is one of my favorite movies of all time I will add Yoda’s wisdom to the mix: “Luminous beings are we… not this crude matter.”
Whoever wins this election, how America is will be dependent on how we as individuals and as families, communities, and friends step up and act in matters large and small on a daily basis. That gives me faith in good and better here and in future, because I believe in the goodness and the gifts in each of you. and your ability to use them in that direction.
Ever been in a relational holding pattern? Then this song will undoubtedly speak to you. It’s my brother Derrick’s newest music video to my favorite song on his album ever dimming room. For those of you who are fans of J.R. Richards of Dishwalla, you’ll also get to see him here, being awesome on several instruments. And you get to see cameos of my incredible sister-in-law Cami, who is the woman behind Derrick’s personal Field of Dreams that they are building together and the absolute best thing that’s ever happened to him (She literally breaks barriers and tears down walls- ask my brother sometime to tell you about her- just, wow!), and J.R. Richards’ amazingly talented wife Min (the woman behind the camera, and for a moment here, in front of it).
If you love “Asking is Leaving” as I do, you’ll want the album which you can purchase on Amazon, Apple Music, and iTunes. CDs, for those of us who are old school, can be found at boudwinmusic.com. Be sure to share the vid and spread the word. And if you want to know more about what living with RP is like (the genetic disease that’s blinding three of us in my family, including Derrick), you can check out Derrick’s video for ever dimming room and my personal thoughts on losing my sight here. You will appreciate your vision in a whole new way.
Here’s to hoping you will live and love with your full heart and persist in the dreams that are the dearest and most important to you.
One week ago I sat in one of the family pews at the funeral of someone most dear to me. Two days later I left for the place I had arranged to go the night he died, before I knew. I’ve moved beyond the shock of his death into the beginnings of the acceptance of it, but I can’t be completely still inside of myself with the loss yet. I’m not certain with this one that I ever will.
I’m used to people I care about leaving; it’s happened to me loads before. Most of the time they have left the landscape of my soul embedded with emotional mines that maim as they go off weeks, months, and years afterwards. I try to detonate as many of these as I can privately, and deal with the ramifications of them on my own, but I don’t know where all of them are buried, and with many of these people, mine wasn’t the only soul strewn with emotional mines by the people who left or passed on. It’s an ugly legacy.
This death was not that way. My loved one died as he had lived: helping others. He was the kindest man I ever knew, and I was not alone in feeling this. It was universally commented on that he was the one man no one doubted had been welcomed directly into heaven’s arms with no reservations or detours. This helps in the grieving, but it is also why we wanted him here.
Last week was not the week I had hoped for, but it turned out to be the week I needed to get an immense amount of clarity in the limbo that has been my life of late.
It has taken me many years, but I have learned to pay attention to my feelings to the point where I am usually aware of the moment in which they change. This has proven helpful in identifying the source of my difficulties and my joys quickly, helping me to make changes that work on the depths rather than the shallows of my life. This past week my heart was especially tender from the week that had come before. It didn’t help that I cried myself blind in one eye before I left- the universal hope among my family members being that some of my sight in it might return in time as the pressure caused by the crying went down.
On the day I began my solo adventure, I sat next to a gem of a lady and felt the fulfillment of my hopes for this week in my interactions with her. The following day was a different story however, with multiple encounters with rude people who were miserable to strangers and among each other. I have never had a more negative response to a friendly, well-intentioned greeting of “Good evening” as I did this past week, and it shook me to my center. What was supposed to have been a time of joy and healing for me felt like an exercise in exhaustion and futility. Why had I come? What was I doing so wrong to offend so many? It was heart-wrenching and demoralizing. By the final evening I had had it, and I had no desire to return to this place ever again, which was a shame, because it had been one of the best experiences of my life not long before.
I allowed myself to cry (the threat of going blind in my other eye notwithstanding) to my sister and my mom. Instead of making new friends as I had hoped I would, I strengthened relationships with friends I already had who were thousands of miles away but had chosen to be there in thought and spirit (and phone calls and messages) with me. I grieved in ways that brought me peace and understanding, I drew solace from some truly beautiful surroundings, and I realized how I wanted to live the rest of my life from that point on.
Something that has proved distressing to me over the years is how little accomplishing goals and milestones has contributed to my happiness. That’s not what the world tells you. It makes it extremely difficult to maintain motivation to do the necessary work to “achieve”. That brought me directly back to sixteen years ago, worn out from a particularly arduous year where I had pushed myself to the breaking point while bleeding internally for nine months, in order to graduate from college in what was, my doctor had informed me with gravity and solemnity, a now-or-never moment. The craziness was compounded by a wedding that left me vowing to elope when my own time came. As I stood, desperately trying to behave myself and be a blessing instead of a detriment to those around me, Brian sidled up to me and nudged me. Brian was the one who died last week. Brian was the one who constantly checked in with me to make certain that my family’s needs were met after the death of my father. He was also the one who took time off of work, whenever I needed him, to take me back and forth to the airport as I flew home for doctors and medical tests when every test I was having was showing up cancer. In the year before 9-11 changed airport-everything, he would greet me at the gate, immediately taking my bag from me and treating me like this time he spent with me was a pleasure and delight instead of an imposition or a duty, which at times I am sure it must have been. Here he was, treating me with that same love, good nature, humor, and respect as he always did, while once again, I was having a difficult time.
“You thought you’d feel smarter,” he told me, referring to my recent college graduation. I turned to him stunned.
“Yes!” I said.
He had accurately pinpointed the greatest of the disappointments I was feeling in that moment: so much effort, so much persistence in the face of so much hard- and for what?
We laughed about it together, this brilliant man who won contests solving math puzzles that were close to impossible even for mathematicians akin to himself and I. He knew my heart in that moment and he helped heal it there. I’ve never forgotten it.
It was then that I remembered his funeral. Brian had accomplished a great deal in his life, but what was most important to the people sitting in that room together- as we tried to say goodbye to the one whose exit we were most unready for- was that he had always been kind. It struck me with force. If the only thing I can manage for the rest of my life is to be kind, that is the most important. It is the only legacy I am still interested in leaving at this point. It is that way in part because I know what his life meant to me. Thankfully, not knowing that the encounters I had with him this year would be the last, I had taken the time to let him know. When I thought of the things I wanted to say to him, after he was gone, I realized I already had on more than one occasion. I hadn’t waited. For that, I am forever grateful.
Armed with this information and insight, I wrote in a notebook to remind myself of what was the most important thing for me right now, with the gentle admonition to let all the other things go if necessary. I went to sleep in my hotel room for the last night, and rose in the morning vowing to be kind even if no one else was. I was done with the place, I told myself. Now I could move on.
But that is where life surprises. I had one last thing to do before I left, and the person who was there to do it with me was incredibly kind. I felt my heart open in spite of myself. All week I had tried to keep my heart open as the repeated rudeness slammed the sweetest parts of me closed into dark places inside of myself. The kindness of this man opened them all again.
Not two hours after I left, I longed to go back. Kindness had allowed all the beautiful and good to fill the empty spaces that the previous two weeks had hollowed out in me. It wasn’t the thrill of romance. It wasn’t that I would ever meet this man again. It was all about the choice both of us had made in that hour of that day in our present circumstance, to be kind.
I had originally believed that finishing War and Peace would be this exultant, celebratory moment in my life. It was a tremendous amount of work to get through the beast after all. Instead, when that last page was finished, I felt very much as I did when I finished Utopia by Thomas More well over a decade ago- I was duped. I had read this why?
I read Utopia because the guy I had liked at the time had purchased it for himself on purpose and, being different than any of the guys I had known before, I thought reading that book would help me understand his world better. If he actually read and liked the book, it would explain a lot of things, including why despite some initial efforts on both our parts, we never ended up together. I could not understand why that book was a classic for any reason other than it was old. The movie Ever After romanticized the book, something that worked in the movie but left me cold when I read it in real life.
My reasons for reading War and Peace were more substantial and mature (for the most part). That it was on a number of must-read classics lists was not one of them, but my drive to understand life and war from another’s perspective was. That a sensitive WWII veteran whose story and way of expressing himself I admired, talked about it with respect (though looking back, I realize now he hadn’t actually recommended it), was a huge driving force for me through most of the work. The fact that I had loved Anna Karenina when I hadn’t expected to, even though I had disliked my dip into Tolstoy’s short stories, helped me to keep anticipating and looking for a moment in War and Peace that would move me and change the way I saw life and people as Anna Karenina had. That a select few people I respected and thought of as cultured and educated and who I, at one point in my life, had wanted to be more like was also a reason. That Charlie Brown had done it on one of the Peanuts holiday specials I watched as a kid and had piqued my curiosity in reading it myself someday (though for him, it had been a miserable experience), also must have had a lot to do with why I read it, though I didn’t remember or realize any of this until I was stuck one hundred pages away from the end.
I tried to like War and Peace– I really, really tried. I read what other people had written about reading it. I listened to a series of lectures by a professor of Russian literature and language who got me excited to read Dostoevsky and other Russian writers and playwrights, and whose skilled and impassioned readings of entire passages in Russian made me long to study and become fluent in the language so I could do it myself someday- even he could not save War and Peace for me.
I have never read another book where every single character in the first 600 pages was a turn-off for me. After 600 pages I found the passages that the veteran I admired had been referring to, and I understood why he had talked of Tolstoy’s portrayal of war as he had. I still didn’t like the book. I read about Prince Andrei’s death, a scene that moves one writer I read about to tears. Tolstoy is unusual in the accurate portrayal of some of the changes of thoughts one can have as one suffers and approaches death, but I was not moved by them. In fact, the longer I read, the colder and more stone-like I felt in my heart. Does this help one identify with what soldiers feel in war and afterwards? Perhaps. I don’t feel that is a benefit.
Was War and Peace well-researched? Yes. Were the words written onto the page haphazardly? No. Could Tolstoy be proud of his efforts? Yes. Is it a great book? If my opinion in this matters at all (which truly, it probably doesn’t except in contrast with someone who has never read the book), I don’t think so.
If you are a historian or someone who is interested in the Napoleonic Wars, read this book. If you study or enjoy Russian literature, language, and culture, read this book. If you’ve fought in a war and want to read about war from the perspective of one who has experienced war first-hand, read this book. If you like long philosophical discussions that are only loosely tied to a story, read this book. If this does not describe you, I would pass on this book without guilt, regret, or envy.
One thing reading War and Peace did for me was to permanently alter my definition of what a great book is. A great book changes me in a POSITIVE way. Fiction has done this for me. Nonfiction has done this for me. Stories by well-known authors have done this for me. Stories by writers people around me have never heard of have done this for me. Children’s writing has done this for me. Some of my own writing has done this for me. It isn’t about whether the book or what it covers is easy or hard, happy or sad.
Christoph Eschenbach said something in a documentary on Mahler that has always stayed with me: that like math, in music a negative plus a negative can make a positive. He meant that when we are hurt or sad, sometimes listening or reading to something sad can actually turn that sadness to joy within us. I have found this to be true in music, art, literature, and life. Personally, I did not find this in War and Peace.
I believe in many cases, reviews and criticism often reveal more about the critic than the work or the individual they are referring to. Some people genuinely love and are moved by War and Peace. I was not one of them. If you are more like me and want a challenge that will help you to understand many of the concepts and situations in War and Peace, I think your time would be better spent watching and/or reading the Shakespeare canon and David McCullough’s excellent 1776. Tolstoy would roll over in his grave over this (he loathed Shakespeare and could not see the value of his works), but I found similarities in subject matter and tone between War and Peace and arguably Shakespeare’s weakest of his historical plays, the Henry VI trilogy, and found that Henry VI captured them with greater brevity and more humanity (in my opinion). I also feel that David McCullough captured the realities of leadership and war in 1776 in ways that build the reader and help them to be a stronger, more empathetic, and courageous person.
Both of these works lack extensive arguments about the failings of historians (you can read criticism of David McCullough’s writing to get a fair amount of that), what really causes and powers human events: individuals, free will (if there is such a thing, Tolstoy goes on forever at the end about that- a major reason why War and Peace is excruciatingly anti-climactic), or something that we as humans cannot identify- but as you can likely tell- I don’t feel that you’d be missing anything but hours of frustration and senseless suffering by missing that. (If you do however, simply read the epilogues.)
Would I still have read War and Peace had I known when I started what I know now? Probably. That thought confounds me. But there was that war vet… and there was Charlie Brown. *smile*
When I think of Mother’s Day, the first thought that comes to mind is the annual tradition my sister and I keep that honors our mother, which in the same breaths, honors hers as well.
The thought that usually follows it will likely puzzle many of you for a moment, but I hope after you read this that you will allow it to become a part of you from now on. It is a delicate, perceptive, and highly compassionate experience that Dwight D. Eisenhower shared with Walter Cronkite in the St. Laurent military cemetery in France where many of the American D-Day boys are buried.
“You know, Walter, I come here and the thought that overwhelms me is all the joy that Mamie and I get from our grandchildren. I look at these graves out here and I just can’t help but think of all the families in America that don’t have the joy of grandchildren.”
There can be great joy on Mother’s Day, but early on as I child I recognized that there can be great sorrow on this day too, for oh so many reasons.
Righteous and loving mothering and fathering should be celebrated. We all benefit from it, even if only indirectly. We benefit from the noble thoughts and actions these efforts instill in our young people and ourselves. They bring greater kindness, civility, and courage to the corners of the world we live in. I have been blessed in my life by a treasured handful of men and women who have stepped in to love and nurture me when I desperately needed it. I think of them and honor them in my heart and in my actions throughout the year, and on Mother’s Day and Father’s Day especially. It makes these holidays particularly tender and emotional for me.
My Mother’s and Father’s Days are enhanced each year by General Eisenhower’s words. Because children and grandchildren are gifts- privileges not always granted even to those who would fill the roles of mother and father remarkably admirably and well. On Mother’s Day and Father’s Day, I think of them.
I think of his words because they make me more appreciative of the people I am privileged to have in my life. They make me less likely to take my loved ones for granted and more likely to treat them better each day. They remind me of sacrifices made long before my birth that continue to bless me.
General Eisenhower’s words (for he was speaking as the Supreme Commander responsible for D-Day operations he had been as he uttered them) also help me to be more aware of those who are quietly suffering around me, who are within the reach of my arms and my influence. These words spur me to help wherever and whenever I can.
I hope that you all enjoy a sweet and tender Mother’s Day this year, with the additional hope that this year you are able to take a brief moment to consider the many individuals and families who don’t have the joy of children or grandchildren in their lives; exhibiting a thoughtful compassion towards them, similar in depth and scope to what President Eisenhower did. See if you can’t find a way, if only for a moment, to take those nearest to you into your heart and into your arms.
And for those among you who are suffering this Mother’s Day, in public or in private:
I am so grateful for the noble and tender thoughts and desires of your hearts that make this day a particularly difficult one for you. You bless our lives in ways we cannot always recognize. Thank you for being Heaven’s foster parents.
When I started this series of 30 happinesses, I intended to write them up in a month. I never thought it would be particularly easy. One of the reasons I was doing it in the first place was because my day-to-day life was incredibly hard and wasn’t looking as though it was going to be getting any easier. Seeing the hard was easy. Seeing the happy was hard. I wanted to focus on the happy in my life.
There was definitely more happy in the span from November to now than is recorded here, but my best happinesses during this time period have tended to be extremely private ones: happinesses with long backstories that are intertwined with other people’s lives in ways it wouldn’t be right for me to share here.
On the other hand, if I had to choose one word to describe this past year it would be: crippling. As disappointments and discouragement mounted so did the difficulties. It wasn’t just one person or one area of my life being affected, and it wasn’t that they weren’t life or death, because several of them were. And then on top of that, like a bad tv series, banquished foes came back into my life AGAIN.
I try to be patient, truly I do, but that last had me hollering to the heavens, “Oh come on!”
One of the things that convinces me of a premortal existence and a heaven to go back to is the innate understanding even small children seem to have regarding what is fair- along with the deep and profound frustration we feel when we realize so much of this world is not. I believe it’s because we sense that our souls originated in a place that was, and will be in the end.
Life hasn’t seemed fair, though it hasn’t taken more than half a second for me to recognize that I have things so much better than so many, in so many ways. That said, it’s been dark days on top of a lengthy span of dark days.
One night when I was completely shot, not knowing how I was going to be able to force myself on because nothing I did seemed to make the slightest difference in what was happening in my life and the lives of the people I love, a thought came to me: Without the dark, we couldn’t see the stars.
It isn’t that the stars aren’t there all the time- what changes, is our ability to see them.
For centuries men and women have relied on the stars for navigation and beauty and hope. I got the impression as I lay crying, that the dark in my life was a gift to help me navigate my life with greater clarity and assurance.
This realization didn’t make my difficulties resolve themselves. By itself, it didn’t make me happy, but it did give me the strength to get up the next day and to keep trying, despite everything, once again, and it fueled me again the day after that.
This week marks the centennial of the beginning of WWI. My great-grandmother Helen has been on my mind constantly for months. I have a few precious pictures of her at the only time in her life when she found it easy to be happy. In most of them, she is being held by or smiling at the young man behind the camera. She was married to that man for three days before he was shipped to France. Within weeks, he was killed while administering medical aid to a wounded soldier in the Argonne.
As a child I found it odd that the adults around me could not understand why she spoke of her time as a nurse so often. “It was only for a few months,” my grandmother would complain.
My great-grandmother lived into her nineties. She lived through two world wars, the Great Depression, Korea, Vietnam, the rise of the Iron Curtain. She was informed that her only son was killed in WWII and held memorial services for him- twice. She lived in a city known as Little Chicago because of the mafia influence there. Her brother was mixed up with some very bad men. She outlived her parents, her siblings, and two husbands- the latter an alcoholic who was haunted by his own WWI experiences all of his life. Her son would be plagued similarly (from WWII) for much of his own. She was not known for being a happy person, but she was magical with me.
My great-grandmother understood things. More importantly, she understood me. Several of my most cherished memories of my childhood were the times I spent with her. She treated me as a young lady able to appreciate and understand precious things. The older I grow, the more of myself I find has been planted by her. Many of the fruits finally budding in my life now are there because of her. They are there because she was there.
So many of my great-grandmother’s days were torture for her. When I hurt because the man who loved me best died when I was seventeen, I think of her. When I get to experience an elegant meal and use my special cups, I think of her. When I get to experience something new but feel prepared for it, I think of her- because she took the time to prepare me to appreciate a number of things, to be intrigued and excited by them instead of closed off and afraid of them- when I was a preschooler and a toddler.
This past month when I realized that it was never going to be easier for me to walk if I didn’t make the effort to walk now, I thought of her. Each day that walking ten minutes on the treadmill took me the better part of ten hours, I thought of her. And the days when it got harder instead of easier and I wanted to chuck the whole thing- I thought of her.
I was prepared to experience things both wonderful and heartbreaking because of her and her life- the life she lived when it hardly seemed worth living, around people who didn’t understand her, missing the people in her life who did. She lived it when she was sick and when she was well and while the world looked like it was being blown to pieces.
Her dark became some of the stars that shone in mine.
Thank you, Helen, for enduring long enough to provide me with the gifts of sweet and lasting love and happy.
The universe works in remarkable ways. I don’t think of myself as a person of any importance, so I am always surprised by the number of people who take particular notice and interest in me. I confess that I find it uncomfortable when I am seen in one place and approached in another. Like attending a sporting event in one city to support a friend who was competing, and then being approached weeks later in another by a stranger who had seen me there and who gave me details about my presence that day down to the exact location where I had sat to watch the competition. I was not being cute or talented at anything. I cannot fathom what made my being there that day so memorable or interesting. Or the time when a friend of mine recited a conversation to me over the phone- nearly verbatim- that he wasn’t present for, not because the mutual friend I was with at the time had told him, but because the driver of the vehicle I had met for the first (and only) time that night, had. Having been followed and harassed by men with guns as a teenager, I find this type of attention distressing and unnerving, more especially because it comes from men and women of various ages and backgrounds, pretty much everywhere I’ve ever been. I’m not a movie star or a fashion plate. I’m not exceptionally amazing at anything. It just doesn’t make sense to me.
It makes writing a personal blog, and keeping it up where anyone can see, immensely challenging for me.
So why do it?
I ask myself that question a lot. I don’t have a strong, definitive answer (hence, why I ask myself this question so frequently). I write when I feel like I should. Often I write for someone I know personally and specifically. Other times I get this sense of someone who is struggling with something that has been a struggle for me. It’s my way of helping others who are hurting to feel understood and a little less lonely.
Something that surprised me in the stack of papers that, yes, I am STILL going through, was an observation I had made in my late teens (I had thought it was an epiphany I had had much later in my thirties) that the only thing I really had to offer was myself; who I was inside. Every once in a while I am able to provide assistance in other ways, but that’s the main one. It’s what I offer here, without strings. You don’t have to comment. You don’t have to respond. I think it’s fun when you do, but I don’t write for that reason.
Words help me. They help me to organize and understand my experience. They don’t come easily to me. I often read to discover what it is I want or am trying to say. I make a complete mess of them sometimes. Often times I run out.
To me, that’s not how a writer is supposed to be. So I don’t consider myself a real writer anymore than I consider myself a “real” anything. Approaching forty is an incomprehensible milestone for me: I wasn’t expected to live anything close to the age I am or likely will be. I have no idea what this time of my life should be for me, only that I am out of sync with every person of my age that I know. It’s supremely disorienting.
But it isn’t the worst thing. Giving up too early is.
Today while I was struggling to find words I looked up some references to try to spark my memory with the things I was wanting to say and had an Edmund Spenser moment:
What though the Sea with Waves continual
Do eat the Earth, it is no more at all;
Ne is the Earth the less, or loseth ought:
For whatsoever from one place doth fall,
Is with the Tide unto another brought:
For there is nothing lost, that may be found, if sought. The Fairie Queene Book V, Canto II
Remember those blog posts that were missing? Someone I don’t know had them saved. I stumbled across some of them today. I’m not going to repost them all, but a few I will over the next few days.
It’s not always a bad thing to have people caring and paying attention to you more than you think they do. The comments for them are gone, but the main content is there. For those of you who missed them, Happy Reading!
In a massive freak of genetics, with no prior family history of it, three of us in my family got RP (retinitis pigmentosa) in one generation. That means three of us are blind or in process.
It’s something we rarely talk about outside of ourselves. Even within our family, blindness and RP isn’t something we dwell on. Those who can see are aware of the situations that are more difficult for the others to navigate, and are quick to offer just the right amount of help: enough for us to be safe while preserving our dignity and independence.
I’m blessed in a sad way that as I lose my sight to RP, I have two siblings who get it. It means we can speak in emotional shorthand. When I had my first major accident from lack of lower peripheral vision damaging both feet, both ankles (one very badly), both knees, and the palms of both hands in the span of a few seconds, they understood that hurt as I was, the deepest hurt came from my Obi-Wan moment: “Your eyes can deceive you, don’t trust them.”
As you go blind from RP, at least for us, it doesn’t feel like you’re going blind. In the beginning, it gets darker for you, quicker for you, than for those around you. But honestly, how often do you compare what dark in the evening and at night is like with the people you know? For months when I looked up at the night sky and didn’t see any stars I assumed it was overcast, until one night someone said, “Wow! The stars are so beautiful tonight.”
And I realized that for months, I hadn’t known what I was missing.
Another way you find out you are going blind from RP in my family is that you suddenly become even klutzier than usual. You trip on things, run into things, and the first response to it isn’t that you are going blind, it’s that you need to slow down, pay attention, and be more careful. That’s because as our vision tunnels, our brains fill in what we can’t see with what they think is probably there- like seeing sidewalk where, in reality, the cement is broken, collapsed, and contains a treacherous hole. (Which is why I spent the better part of two months scooting around a three-story townhome on my hands late last year, taking another month to relearn how to walk naturally again when everything about my legs, ankles, and feet felt and reacted differently than I was used to.)
I should have known, I told myself. Just two months before, my eye doctor looked into my eyes with a hand-held lens and, without having to dilate me, was able to accurately tell me which parts of my vision at that time were pure fantasy. Being told this is one thing, living it is another.
I’ll be honest with you: it hurts. It makes tons of things you probably take for granted harder. I will also tell you that it makes it very easy to feel like, and be treated like, less. But it is also true that for some people, when they look at you, they will see more. They will see more strength, more understanding, more determination, and more compassion in you if those are the directions you choose to pursue when disease, disability, or misfortune strikes you. What you will have to offer the world will change throughout your lifetime, but you will always have something to offer. Disease and disability often make these offerings different. I assure you, the world needs that difference.
My brother Derrick Boudwin is one of those who is allowing his differences to make a positive difference for others. Derrick wrote a song for his debut album that can be listened to as a love song, but was really written about going blind. When it was time to choose and film a music video for his album, hard as it was for him, Ever Dimming Room was decided on as being the one. If you watch what they did with it below, I think you’ll understand why.