The Inconveniences

The past two weeks, the toilet in our master bathroom has been running non-stop. We considered this a minor issue and got used to readjusting the flapper in the tank, turning on and off water, and making things work. Yesterday we decided it was time to replace a couple parts, so Ben ran to our local hardware store and purchased what we needed. He strategically found a time in our schedule where he could take off the tank, do a quick installation, and get things running again.

We promptly discovered that our toilet was not a standard size and our store did not carry our particular replacements. Ben and a friend had dismantled it and were not able to put it back together with the worn out pieces. We were going to need to do some research and find the replacement parts if we were doing this ourselves, which meant an evening without use of that bathroom.

A minor inconvenience for a household with more than one toilet.

Without a toilet on the main floor, I needed to use stairs to get to the restroom. Stairs are difficult for me to use even on my best health days so by my second bathroom visit I was winded. Ben helped me get back to My Spot on the Couch and I felt a wave of panic. My diuretic was doing its job and getting rid of excess water quickly–way to go, medication!–but that meant there was another trip in my future. My mind was racing: What happens the next time I need to pee? Can I make another flight of stairs? Do I need to find a bucket?!

One of the most challenging realizations I have had to accept in this season is that my inconveniences more quickly evolve into problems.

In other times of my life, when I was feeling and functioning better, I was quick to point out that mild annoyances were not worth my worry or emotional energy. I was taught “don’t sweat the small stuff” and liked to be self-sufficient. For much of my life, I had the time and ability to clean up and move on from issues of any size. And I encouraged others to do the same.

For many of our friends living with chronic illness, there are common issues that quickly escalate due to a person’s physical, mental, and emotional limitations. Not everyone has the dexterity to fix the broken thing, the mental capacity to think thru all the options, or the energy to do the research. Our culture can overlook and water down hard things, believing that “small stuff” is a one-size-fits-all description. But for some of the people we love, the caregivers and the care-receivers we are doing life with, there is NO small stuff. Every challenge is a difficult hurdle and will take a lot of effort.

I am lucky to have Ben. He sat with me and helped me calm down before we put together a plan. We ended up taking all my necessary stuff downstairs to sleep in the basement, close to a working toilet, and Ben called a plumber to come in the morning. (Thank you, Blue Dot Services!) Yes, we had to pay a literal price for a problem that most people could fix on their own, but we are learning how to accept help of all kinds. As of this afternoon, I am back on the couch and grateful for a new toilet tank with standard parts.

Friends, I apologize for any time I tried to minimize your hard things or looked past your problem. Your stuff is not small. Your challenges deserve to be recognized. May we all walk forward together with a little more grace for ourselves and each other–especially when it comes to toilets.

The Lie of “OK”

Yesterday was my first in-person doctor’s appointment since February. I typically see my pre-transplant team every month so it felt like a kind of homecoming for Ben and I to walk through their (surprisingly difficult to open) office doors after weeks away. Ty, Julie, and Vanessa greeted us as they took bloodwork, asked questions, and started the monumental task of scheduling upcoming tests. All the staff are more than our medical team–these people have become Our People.

Which is why when Dr. E came in and asked me how I was doing he did not immediately respond to the line that I so easily gave:

“I’m doing OK.”

Have you ever had a doctor stare you down? It’s frightening. And in my case totally called for.

“Caitlin, from everything I know about you and how the last few months have gone I have a hard time believing that. How are you actually doing?”

I am not OK.

“I’m OK” has somehow become my default answer to people’s questions about my wellbeing. And I know I am not the only one who is stuck in this. We as North American adults have been taught to reply with only positive responses when someone inquires about us, especially individuals we are not as familiar with. It is somehow considered impolite to share our hurt feelings or ask someone to recognize our crummy day, so the correct reply must be tied to “OK”. As in, “I am somewhere between painfully horrible and having the best day of my life.” It is easy to both step into and walk away from a conversation with that much ambiguity.

But the vagueness of “OK”, meant as the catch-all of emotion, is actually a lie I tell. To my cashiers. To my friends. To myself. As someone with limited physical, emotional, and mental energy (which, quite frankly, is ALL of us in this season) I am constantly tempted to lie about my wellbeing because it requires less effort. I don’t need to think about the day’s events, I don’t need to worry about having an emotion-filled response, I don’t need to get into a long-winded conversation. “OK” assures I can preserve my much-needed energy. And that is a good thing…right?

I have decided that in my life honesty is more important than preserving my energy. Sharing my reality allows me and my community to carry things together. It is really difficult to hold “OK” with someone. In a strange and paradoxical way, it is less complicated to acknowledge true emotions–even those that are heavy–and tell people the real story. They can respond however they see fit, I am not in control of that. I am in charge of inviting or excluding my community into my life and sharing the truth about me.

I decided Dr. E should be included, so I told him the truth: “I am not OK.”

I am fatigued and rarely get out of bed before ten o’clock. I am anxious about exposure to COVID for myself and people worldwide. I am struggling with brain fog and digesting meals and wanting to smash my computer screen as I scroll down conflicting stories that all lack compassion for people. I am thankful for great generosity and love. I am experiencing peace in my conversations with God. I am simultaneously hopeful and deflated.

Friends, Our People are not accepting “OK”. And you shouldn’t either. Now is a great time to not be OK. Be better. Be worse. But don’t settle for the lie we are conditioned to give. I invite you into the stretching space of honesty, the place where your real self exists, and know Your People are there to carry it all with you.

The Quarantine

I am not an expert on many things, but there is one area I feel I can share my guidance in this season: Quarantine.

Due to the nature of my heart issues, I have been in self-quarantine on and off in different times. I have been almost completely isolated since the beginning of this year due to rampant flu/virus issues. As you may be someone needing to join me in staying home this season, I want to share advice on how to make this difficult change a little easier:

1. Ask for help. This is the most challenging and most important step. If you are unable to get out, ask someone to do it for you. My community has delivered groceries to my front door, returned my library books, picked up my medications, and a myriad of other crazy tasks. The people in your life WANT to help you–even if they are not going to physically see you! (Don’t have anyone you feel like you can ask? Send me a message.)

2. Open the windows. Sunlight and fresh air are vital when you are inside all the time.

3. Move. It can be tempting to sit on the couch all day but your body will not be pleased with that decision. There are lots of ways to stretch your body and fun workout videos to try from yoga to kickboxing to different kinds of dance. If that is not your energy level, set an alarm to take a lap around the living room every thirty minutes.

4. Create something. Paint, sculpt, journal, cook, draw, sew, blog–there are so many venues to be creative. (If you need supplies, refer to point #1.)

5. Start something that you can finish. If you are like me it is important to accomplish something during this time at home–and don’t just make it house cleaning! Try lessons on Duolingo, put together a jigsaw puzzle, organize a forgotten desk drawer.

6. Spend time with someone you love. (Sometimes it gets hard sharing close quarters so you may need to prioritize fun!) My husband and I make time to play games and watch movies together. My parents Skype with us every week. If you live alone, call or FaceTime a person who gives you joy.

7. Pray. There are times when things seem too quiet or too overwhelming–and in both of those we need to stop and breathe. Talk to God, meditate, practice mindfulness. We are in an unusual season where we are given permission to slow down and look around. Take those moments seriously and find strength and peace as you connect with God.

Sending love and peace to you, friends. We can do this.

The Finances

Being sick is expensive. Anyone who has visited a doctor under the current American health care system knows this: Every shot, check-up, and (in some cases) phone call that is tied to your well-being has a price tag. We must budget for insurance premiums, monthly medication, and (sometimes unexpected) medical needs.

And it can be overwhelming.

After paying the fifth installment of our recent barrage of hospital bills, my husband encouraged me to write this post. Not as a way to vent (although, let’s be honest, that is a much-needed conversation) but as a way to connect. Those of us dealing with chronic illness HAVE to think about our finances and I want to applaud your hard work in this difficult area of life.

So I want to share this part of my story; one that I don’t talk about much due to social norms and my desire to stay away from awkward conversations. But one that I think needs to be shared.

“I am so embarrassed,” I whispered to my husband.

He reached out and took my hand. “Don’t be. They understand. They know where our hearts are and how much we love them.”

We pulled away from a party, having just spent the afternoon eating cake and celebrating people we love. What should have been a reenergizing time left me feeling small and insignificant.

The invitation to this event showed up the same week that we got a whopping bill for my most recent Echocardiogram, something we had falsely assumed would be covered by our insurance. We committed to the celebration and decided not the let the unwelcome news of paying for medical tests get in the way of our regularly scheduled life. I pored over our budgetary spreadsheet and found a few places we could cut, one being our happily-named “Gifts!” line-item which was already nearing its monthly limit.

We were not willing to show up to the party empty-handed so we braved the department store crowds to get in on a good sale. We left with something we thought the recipient would enjoy and were pleased to have only gone over our budget by a few dollars. The gift bag was prepped and I felt we had accomplished something miraculous: Being able to give while dealing with medical bills.

At the party, I set our gift down on the pile of presents. It looked small compared to most of the other boxes and bags but I tried to not let that bother me. When it was time to gather around the gift-opener, I was sad to see the same thing we bought being pulled out of another bag, followed by two fancier items hidden underneath. The individual made their way through wrapping paper and bows and, by the time they reached ours, I had an apology crafted. “You can return it!” I wanted to shout, “But the store credit won’t get you much.” They opened the gift bag and laughed, seeing a duplicate item, and thanked us for knowing what they liked.

The party moved on but I did not. I couldn’t shake the feeling that Ben and I were no longer able to give good gifts. Digging deeper I saw the fear taking a truer form:

Our money had to be prioritized for me. Which meant less for others. 

We are walking into a season of giving. This is the time of year where we are expected to give presents to family and friends, to bring food to gatherings, to donate to charities. All these are good and wonderful things. I believe giving is an important part of life, especially in a world with so many needs. We need to help each other.

But how should you give when you are sick? When the prices for your monthly check-ups and medications eat up a portion of your budget? When you don’t have the strength or ability to help serve meals or give your time in other ways? When the donations to a local charity may end up coming back to you?

In what may sound like the ultimate Anti-Holiday slogan, I want you to prioritize your financial wellbeing this year. Even if that means you can’t give as much to others as you would like.

You, who spends hundreds of dollars out-of-pocket for Insulin.

You, who is stuck with unexpected ER bills.

You, who spends hours building and rebuilding your budget.

Set a financial limit for the season and stick with it. Don’t go into debt to buy presents for your family members. Don’t run yourself ragged trying to bake ten dozen cookies for your church choir friends. Don’t give your money to a charity out of guilt.

Your finances can be used for you this season and beyond. Without blame, you can pay your medical bills before you jump on Amazon for Hanukkah presents. (I’m pretty sure any financial planner would tell you that you MUST pay your medical bills first. I’m being generous.) The people in your life understand. Even more, the people in your life want you to be well: Physically, emotionally, financially well.

You are a gift to everyone around you. And you are worth every penny.