Reaching into heaven [where I stand in the conversation about racism]

Last week, in his most recent sermon, our senior pastor asked us to imagine heaven and consider what part of this image we like the most. And then, he said, we should think about what that tells us about our deepest longings here on earth. Probably because we imagine heaven in a way that resolves something we need right here, right now.

The last six months have tested humankind. Certainly they have tested me, left me feeling powerless to alleviate the pain of loss and grief in my community. I don’t have the resources or the ability to help, and I’m frustrated by being part of the at-risk population at a time when I could be useful.

Our grief doesn’t stop at the pandemic. The last few months have also brought to light great injustices and inequity in our country. I’m left wondering where heaven is in all of this. How can we reach into heaven and bring just a little of it here? Can our communities heal, or will they only grow more hurt and polarized? Why should we have to wait until the day we die to find relief?

It’s easier to keep on living our lives than to invest time in understanding and imagining the pain of other people, especially people who don’t look or think like us, who we’ve been told are threats to our way of life. Intentionally or unintentionally, we – white people, in particular – have been educated about the dangers other people pose to our lives, but we are rarely educated about the benefits of generosity and empathy. We are not encouraged to stir our imaginations to see a different way of life. We aren’t asked to imagine heaven, or what it might look like if even a sliver of its dimension intersected ours for a moment.

I did my homework from Sunday morning’s sermon today. When I imagine heaven, I imagine no more anxiety. No more fear. No more loneliness. I see different people loving different things, and I imagine how beautiful it is.

I imagine a place where everyone has enough: food and comfort and health and love. Everyone is equally seen. We are not separated by the size of our homes or the fullness of our wallets or the capacities of our minds.

I picture a world restored, an earth healed and regrowing. The universe is ours to see, and we will be free to explore it.

We belong everywhere – we belong nowhere – to summon Maya Angelou.

I don’t write this under any assumptions that I am an expert at reconciliation, racial issues, injustice or other painful problems we’re facing right now. What I am saying is I have a personal responsibility to support those who are doing the hard work of advocating, researching and leading.

I often stay out of conversations like these, especially online, because my blog has always been a refuge of reflection for me, and I’ve never used it as a platform for anything except bringing awareness to things I know and understand well, like chronic illness.

Until I can clearly see a path to contributing without ignorance, I will listen. I will read. I will challenge my peers to do the same. It will be clear where I stand in this: maybe not physically but in prayer, in solidarity, right in front of my brothers and sisters who are humans. Humans who deserve life regardless of their ethnicity, age, education level, criminal record, personality, ability. In the past, my silence has allowed someone else to suffer. But not again.

It starts with asking God to help me deconstruct every false narrative in my mind. Then, I will ask him to rebuild his truth in me, so I can stand and protect life when my opportunity comes.

I think we have a connection to heaven, and we all have the ability to bring a little of it here. But I don’t think we can do it without taking off the mask of ignorance handed to us by our education, our families, our peer groups, our experiences, or our assumptions.

What does heaven mean to you? Maybe you can help usher a little bit of that beauty into this hurting world.

Remission in a pandemic

It occurred to me this week that I recently passed the 2.5 year mark since my last rituximab infusion, a form of chemo that was used to treat my autoimmune disease in 2017.

I haven’t been as open about my health lately. Some people gave me “advice” that I should be more private about my health challenges – that being open could limit my future opportunities or negatively affect someone’s perception of me. I’ve thought a lot about that, and I think they’re right.

The other reason for my silence is compassion fatigue. Our feeds are filled with more health updates than we can handle. Sick people. Death counts. Infographics. Controversial government conspiracy theories. Sitting down and writing about my health is not easy when so many others are worse off or bombarded with bad news.

That being said, I don’t actually have any bad news to share.

It’s a weird time to be in remission. I know quarantine protocol well. It was my life during treatment. I would avoid crowds, wear a mask, carry hand sanitizer and refuse to shake hands. Thankfully, that’s not the way I’m forced to live anymore (except when we’re in the middle of a pandemic).

I’ve been in remission since mid-2018, meaning my platelet counts are steadily holding at or above a specific threshold. Since then, my counts have very, very slowly climbed and hovered right at the edge of being “normal.” I haven’t needed any additional treatment since then, but I have continued living with caution.

My body has never really bounced back from 15 months on high doses of steroids. Losing the weight is equally a physically arduous journey as much as it is a mental one. Prednisone certainly saves lives but it destroys so much more in the process. An optometrist noticed damage to my eyes from the steroids and I finally had to get glasses last year. And my own skin has felt foreign to me since the first day of treatment. Life certainly did not go back to normal because of remission, but stability and peace of mind–not worrying my headache is a brain bleed, for example–is a wonderful thing.

The pandemic has reminded me of those days in treatment. It also presents a danger. Most experts agree that contracting the virus doesn’t worsen ITP, but it can certainly create complications. ITP patients cannot take common medications for fever and body aches because they lower platelet counts (e.g. NSAIDS like Advil). And while the jury is still out on what exactly causes ITP, most doctors believe it’s triggered by a virus. Could getting another virus cause my immune system to relapse and start attacking my platelets again?

There are no answers to my questions, only educated guesses. The best course of action is always caution. So if you don’t see me at church for a few months, you know where I’ll be.

(Safe at home.)

Things you can write in a greeting card when you dread Mother’s Day

I’ve been thinking about writing this for a long time. At first, I tried to find an illustrator to go into business with me on Etsy to make unique greeting cards (hit me up if you’re interested). That didn’t work out yet, but why couldn’t I give away some things for free?

Throughout my life, I’ve encountered people with all kinds of relationships with their mothers. One of my favorite TV shows is seven seasons of exploring the complexities of motherly roles (Gilmore Girls). I’ve had friends with single moms and step-moms and adopted moms and mentally unwell moms and moms who didn’t want to be mothers and moms with cancer and women (and men) who acted like moms to kids and adults alike when they needed it most.

Here are some scenarios in which a person might want an alternative message in their Mother’s Day card:

• When the recipient played the role of mom but isn’t called “Mom”
• When you’re sending a card to your mom but are having a hard time finding nice things to say
• When you don’t have many memories with your mom to draw from
• When “Mom” didn’t fill the motherly role in your life

Please note: I’m not a social worker or a counselor or any kind of person that knows the exact right thing to say to your mom when your relationship is complicated. But I have developed an approach to tough conversations after some experience, and I’ll share it with you. In five or ten years, when you reread what you wrote in this card or remember what you said, how will you wish you had behaved? What will you wish you had said when today seems like a moment and not a lifetime?

If you have a blank card and a weird relationship with Mother’s Day, I hope this helps you a few ideas for messages you can write inside when your mother relationship is atypical.

“What you’d really like to say” | What you should write in the card.

“Thanks for stepping up when someone else didn’t” | For the moments you showed up for me and offered something really special. For giving me a safety net of love and support. For the unique relationship we have, you deserve to be recognized on this day. I may not call you “Mom,” but I love you like you are.

“You made things really hard on me and I don’t want to ignore all of that pain just because it’s a holiday” | The world would not look the same without you. You’ve given me the opportunity to build my life on a story that starts with you, and I’ve gained valuable wisdom and character from the relationship I have with you. We have tough chapters in our story, but it’s what makes us who we are.

“You showed up a little late and now I don’t know what I should thank you for as an adult” | Mother’s Day is a time when I look at the days ahead and hope for good memories and new opportunities to know and love you more.

“You’re my mom on paper but not in my heart” | Today, I am finding gratitude for the life I was given and the opportunities I have because of all the people who have ever loved me. I hope on this day you can find peace and celebrate the people in your life who have demonstrated what it means to love and be loved.

What kinds of things have you written in greeting cards when it’s hard to find the right words to say?

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Book recommendation! There Is No Good Card for This: What to Say and Do When Life Is Scary, Awful and Unfair to People You Love.