what happens when we let ourselves live?

Last night, about 5 minutes after I walked into Braxton brewery to grab a few beers with some friends, a guy walked up to me and introduced himself. Turns out, he had a class with Alyssa back in high school some 13 or 14 years ago. He told me about how much Alyssa inspired him and how awesome he thought she was. He mentioned that within a couple of days after her passing, something happened that reminded him of a funny story from high school and how he wanted to reach out to her, only to realize he couldn't.

He continued to offer me support and kind words about my sister. He spoke glowingly of her. It's moments like these where life pauses for a short time: I'm reminded of the huge impact my sister made on people's lives and how people think about her every single day.

Lately, I've been worried about the same old shit I was worried about when my sister was here. I worry about being late to things, my diet, missing out on events, if people judge me. Losing my sister upended my life and I thought it changed everything. But, in many ways, it hasn't.

I told myself a few months ago that I wasn't letting myself be happy because I didn't deserve it; If I wasn't happy with stable health when my sister was alive, then I don't deserve it when she's gone. That was a cop-out. I was refusing to let myself live the life my sister wanted me to live, and the one I deserve to live.

That conversation last night was a necessary reminder that I need to treat life for what it is: A series of fleeting moments filled with large and small joys and disappointments. It is both the most and least serious thing we ever do. We can choose to take every situation and pretend like it's the end, but, even if it were the end, approaching life with disdain or frustration only mitigates the joys we feel when we simply let ourselves live.

Take note of the moments throughout your day when you feel the simplest joy. You know the type, that joy that just resonates throughout your whole being, the world around you and whatever issues you have just slip away for a short time. Whenever you experience that moment, just let it happen. Rejoice in that deserved nirvana. Experience it and recognize that you do deserve to feel that.

So, what happens when we let ourselves live? I bet that question answers itself.

This week, I'm going to try to let myself live. I hope you do the same.

a step back

When Alyssa was getting sicker, I found myself deeply researching grief – I wanted to "prepare" for it, whatever the hell that means. I immersed myself in memoirs written by dying people to see their thoughts at the end; I read research on how the death of a loved one alters your brain; I wanted to understand what was happening when somebody that had been there my entire life suddenly left. In that research, it wasn't uncommon to read that the second year is harder. I reflexively dismissed that notion as bullshit. I figured there was no way I could struggle more than I already had.

And here we are, a year and change later. My brain is foggier than it has ever been. I find myself searching for anything to make myself forget time is passing me by, immersing myself in as many roles as possible to make a difference. 

I thought that baring my soul and my grief so publicly would prevent any of the fog and struggles that come with the depths of grief. I've found that by being so honest about my grief in my writings, I'm hardly honest in person. I hate ever allowing myself to be sad, down, or not engaged so as not to make anybody else feel “bad” for me. My parents find out how I’m feeling by reading the pieces I write, not by me confiding in them how much I miss my sister because I know how horrible they would feel to know that it still eats at me every single day. 

As much as I write and advocate for vulnerability, those closest to me hardly ever see me let my guard down, so as not to appear “weak” – the very same word I so desperately despise. I want to appear happy and vibrant all the time so people know that I am a vibrant person that loves life and the world around me. I burden myself to be “strong” all the time, only letting my guard down when I’m alone and usually late at night.

I want to talk about my sister to people, I want to share stories about her, and I want to keep her soul alive. I can hardly remember her voice and or her laugh. I’ve woken up in a world without my sister for over four hundred days, and there are still days it takes the tattoo on my arm to remember that she’s gone. I no longer get the urge to text her or call her, but I still tag her in almost everything I ever post on Facebook. I still wonder if she would approve of the outfits I wear. I wonder – then get angry and heartbroken – about the life she could have had, had she had a bit more consistent health.

One of my most important values is being honest in my writings. Even right now as I write this piece, I am searching for the right words to have that uplifting conclusion, though in many ways I’m struggling to find hope. I’m terrified of letting people down. I’m horrified that by allowing myself some space to step back and realize how traumatized I am, that I am somehow letting somebody else down, either at work or in life. 

I am an advocate for emotional vulnerability. I want my writings about myself, my sister, and grief in general to be honest and representative of at least my mind throughout all of this. My brain is foggy. This piece feels weak, and so do I. But I’m tired of letting myself feel weak, when I know that I need to be fair to myself.


11 months – I feel more alone than ever

I’ve written this phrase so many times in the last eleven months, but it’s one of the truest and simplest mantras in life after losing somebody: Grief is not linear.

Right now, I feel lonelier than I’ve felt during this entire season of grief. In the months after Alyssa’s death, I was inundated with support. I was checked on constantly and people were kinder and gentler than normal (understandably so). Due to my proclivity to try to avoid being in a negative or pouty mood in front of others, I’ve been less open about my struggles in person recently. It isn’t a total façade; I genuinely feel better in the company of others and my extroverted personality flourishes when with others. With that being said, I’ve been less forthcoming when in a sad mood. I should be more careful with myself. When I’m not in a great mood, I should inform others that I’m having a hard time and I want to sulk (I believe sulking can be beneficial in small doses). Instead, I sometimes rush out of these bad moods, leading me to sometimes neglect the full spectrum of emotions I should allow myself to experience.

To compound my grief, I despise winter. Or at least I think I do. I don’t actually despise the cold or everything about the winter. What I despise most is the lack of sunlight, though I do appreciate the gloomy days. Today’s a gloomy day and I’m enjoying writing during this evening. It’s 6:15pm and the sun is mostly set. I’m looking outside the front windows of my house, the trees appearing as silhouettes against a backdrop of that late winter bluish-grey sky with freezing rain falling. There’s no doubt that I’m better suited for the summer – something I swear is genetically inherited. I enjoy the sun and blistering hot long summer days (I don’t enjoy sweating in nice clothes though!). Honestly, I love all the seasons, each with their own quirks that I admire and dislike. 

The biggest issue for me has always been what I once saw derisively termed “JanuFeb.” It’s during these months that the Midwestern climate never seems to figure itself out. The spectrum of weather possibilities ranges from freezing cold days with no snow, chilly days with snow or freezing rain, or even spring-like “perfect” days where the temperature sprawls into the sixties and even sometimes seventies. This inconsistency drives me nuts. I long for spring days, even rainy days. I adore seeing people seemingly sprouting from their winter slumps, mimicking the newly sprouted flowers recovering from the winter chills. Now, JanuFeb carries added significance: It was these months that were Alyssa’s last, the universe or God or whatever else not even allowing her to live her final days in the season she loved the most. Maybe I should reframe my perspective. It was unlikely I’d ever like JanuFeb nearly as much as the other months, so now that these months will forever carry those difficult feelings I experienced in 2018 should magnify my disdain for them. I don’t like harboring these feelings, but I find it difficult to view them in any other way.

My depression seems to mirror the sun. While almost always present, my depression is worse during the months where the sun shows up the least. This isn’t exactly surprising: Seasonal Affective Disorder is a well-documented seasonal depression possibly linked to Vitamin D deficiency. I can remember in high school when I first noticed how I felt so much differently during the winter. My taste in music differs wildly, my demeanor is certainly different, and I almost feel like a different person entirely. I ache during these months of a miserable loneliness, where I feel my world and life is one nobody else has ever experienced. To some degree, that’s true, but in the way that that’s true of everybody else. We’re all navigating paths never walked before. I try to rationalize where I have to move forward, knowing no path is traveled to the point where it’s easy to navigate. I know I “should” not feel lonely, as if how we “should” feel even matters. Anxiety and loneliness are rational emotions that can be manifested in irrational ways. Most people that feel these emotions to a debilitating degree know they are not rational; I’m aware I have unrelenting support. It just doesn’t always feel like it. (I hope this doesn’t imply I don’t appreciate the support I have because I very sincerely do.)

In this metaphor, I dearly want to walk this path with my head held high and clear eyes. Instead, I feel like I’m limping down this wearing a blindfold, tripping over every twig in the way, sometimes reaching creeks that resemble rivers, other times needing to turn around and change my path completely.

Maybe that’s what it’s important. None of us are walking the paths that others think we are walking. As I feel the weight of my despair, I wake up every single day and try to seek out insights from the world, as scary as it can be. Some days it’s unbearable, other days it goes along a bit more smoothly. The path of life is one we all walk, until one day we reach our final destination. I don’t know what my destination is, but I’m going to keep on walking.


Am I doing enough?

Disclosure: I hope, in all sincerity, this does not come across as arrogant or “woe is me.” This is an exercise in trying to recognize how hard I work because anxiety and depression have a funny way of convincing you’re lazy, weak, and incompetent!

I want to leave a legacy. I like being busy. I like having obligations and feeling like I’m making a difference in the world.

I don’t like feeling like I must be always busy in order to be productive. I don’t like feeling overwhelmed or like I’m letting people down.

I have a job as a CF scientist where I spend 40 hours a week with fantastic and brilliant colleagues bettering the world for individuals with CF and the CF community at large.

I have a blog. It doesn’t get a lot of hits but I take it seriously; it’s where I’ve grown as a writer and bared my soul. 

I have a writing column on CF News Today. It gets more attention than my blog, gives me a place to talk about important issues in the CF community on a weekly basis, and I know it has at least a slight benefit in the CF community. On this site, I’m also a Forum Moderator for the new CF Forum, as well as working behind the scenes on an HR initiative to increase employee collaboration and morale. 

I’m also actively working with the CF Foundation in a variety of ways: I’m on a couple of committees, I’ve written a couple of blogs for them, and I’m the Local Ambassador for the Greater Cincinnati Chapter. 

At home, I exercise nearly every day, spend time with Duncan, write and read an hour or two a day, do my treatments, hang out with friends, and work on an assortment of other projects that I have plenty more work to do on all of them before I’ll ever publicly talk about them.

This doesn’t include the fact that I must grieve my sister daily. I want to be the best friend to people that I love, I want to be the best son I can be to my incredible parents, and I want to be able to live happily.

And every single night, I go to bed with the suffocating feeling that I could have done so much more with my day. I fear that if I were to spontaneously combust into nonexistence in this moment, I wouldn’t be content with what I’d done with my life, but then my neurotic mind retorts back that, in death, I wouldn’t or couldn’t care about it anyway. This catch-22 is probably a waste to consider but yay anxiety!

I want to leave a legacy but I want to be happy with myself in each passing moment. 

Somehow, these two goals sometimes seem to run perpendicular to one another.