How to be a helper

“Look for the helpers. You will always find people who are helping.”

― Fred Rogers

As someone with chronic illness, I’m often asked by others how they can support the people in their life, in their inner circle. Here are just a few of the things I’ve learned through my own medical battles":

Offer specific assistance and avoid generalities

It’s one of the most well-meaning phrases that we are all guilty of using when those we love are going through a tough time : “let me know if you need anything!”, “I’m here for you if you need anything!”, or “I’m here for you anytime, just ask!”. These phrases are so well intentioned, and it does warm my heart every time I hear one, but please also know that these general offers for help can be hard to collect on! I know that my friends mean it and that I could call them at the drop of a hat for anything at all – but half the time I don’t even know what I need for myself, much less what to ask of someone else! I’m also guilty of minimizing these general offers – My friend did say “let me know if you need anything,” and now I do need a ride across town next week, but that’s a really far drive for her to make in rush hour, so I’ll figure something else out. Surely she didn’t mean THAT when she offered to help with anything. This is an example of an exact situation that happened recently, and God bless this friend for reaching out later and clarifying. “I really do want to help you, and I mean it when I offer. But I also need you to be direct and tell me what you need”. She encouraged me to go outside of my comfort zone and text directly the next time: “hey, I really need a ride on Wednesday, is that something you’d be able to help out with?”

Here are a few examples of things that you can say or offer that are easier to process and take you up on:

“I know you’re going to need to be resting a lot next week, can you let me know which night would be best to bring by some food or have it delivered to you?”

“I know you need a lot of rest but also wanted to make sure you have company if and when you want it. Is there a time I could come by to watch some movies with you?”

“I really want to be able to help you during your recovery, but I’m not sure what kind of help would be best. Do you need any help with meals, transportation, picking up prescriptions, or maybe other tasks I can check off your list?”

“I’m stopping at Target today, is there anything I can pick up and leave at your doorstep?”

Don’t assume that we don’t want to be included in social events or other gatherings – let us make the judgement call for ourselves!

Sometimes physical activities like hiking, camping, travelling, sports events, or other activities might be too hard for us to join in on, depending on a multitude of factors. Even though we acknowledge our own restrictions, it can still be hurtful sometimes to feel excluded because of our physical abilities. I would much rather have to turn down an invitation than to find out about a fun excursion through social media and wonder why I never heard about it. Something you might like to say could be “we are planning a group hike for next Saturday morning. How have you been feeling this week? I would love it if you feel up to joining, but if it’s not a good time for you, maybe you could meet us at brunch after the hike? We miss you!”

Reach out often, even if you don’t know what to say

When people are facing a medical crises or even grieving a loss, their friends and family are often faced with two options: risk saying the “wrong” thing, or say nothing at all. I may speak for myself on this one, but I would so much rather hear from my friends often, even if they don’t have words to improve or change my situation. Some of my favorite texts read something like “Hey, friend. I know you’re going through a lot right now and I wish I had some advice or words of wisdom. I just wanted you to know I am thinking of you, and I love you. Let me know if there’s a day this week you’d like to catch up!” When I work closely with loved ones grieving families I encourage them to be present, even in silence. You may not want to text or call because you are afraid you’ll say something wrong, but the power of love and friendship is in the phone call itself, not the content. Community is supportive, even if the community doesn’t know the “right” thing to say.

Don’t be offended or disjected if I don’t respond to your attempts to reach out

It happens all-too-often: I’m at home, recovering after a procedure with anesthesia. I wake up from a nap, roll over to check my phone, and smile when I see that a friend sent a text to check in. I quickly fall back asleep and don’t end up responding to the text. Please know this: my lack of response is not a lack of appreciation for your support. It isn’t an indication that I don’t want you to send me the message next time. I love knowing that support will be there, even if I’m not able to express it in the moment. I try to do the same for my friends in the community. Recently, I sent a text that said exactly this “Hey friend. I’m thinking of you today! Please don’t use any of your limited energy to reply to this with an update, I just wanted you to know I’m sending lots of love!”

Offer multiple options when planning a hangout or meetup

Along the same general lines as my first point, coming up with enough brain power to choose an activity can be tough! I love it when my friends say something like “I’m so excited to see you this Saturday like we planned! I wasn’t sure what you might be feeling up to. Would you rather have a relaxing movie night at home with ice cream, or are you sick of being home and feeling cooped up? If so, we could head out to dinner or even just out for a drive around town. You can let me know Saturday, no rush!”

This kind of message doesn’t require me to brainstorm from the list of 1,000s of activities around town. It does give me permission to admit that I’m not feeling up to leaving the house this week without feeling guilty for being “lame” or letting my friend down by not wanting to do something more fun. It allows me an opportunity to be honest about my limitations without feeling like the party pooper. This kind of message gives me the option of doing something more “exciting” – but I don’t feel pressure to pretend I’m up for something I’m not.

Try not to let the chronicity of long-term medical conditions discourage you from continual support

This may be an unpopular opinion or statement, but it’s something I’ve noticed over the years. When a “healthy” person has an acute, single medical crises like a surgery, car accident, or unexpected hospital stay, the support from friends, family, and coworkers is astounding. Flowers are delivered, the stream of visitors in and out of the hospital room is constant, meals are coordinated, and money is donated to sites like gofundme. This support is incredible, and I certainly don’t mean to say that it should not be provided as such. However – consider the other side of the narrative. Last year in the depths of what was a terrible year health-wise, I found myself admitted to my own hospital for 6 long days. I didn’t hear a word from a single coworker – with the exception of my manager who texted to ask what day I would be back at work. Only 3 of my friends reached out to ask how I was doing. I generally felt like people just thought “oh, there goes Sarah, admitted in the hospital again like she always is”. Despite the fact that this isn’t my first admission, it’s not run of the mill for me – it’s scary, lonely, and mentally exhausting. Just because I’ve done this before doesn’t mean I don’t need any support behind me.

 I don’t say any of this to shame anyone – only to help shed light on the isolation that chronic illness brings. If your friend or family member has a chronic condition with repeated procedures, hospitalizations, or other stressful events, try not to let your support taper off. I’m not asking you to send flowers or to start a fundraiser every time I’m sick – I just need to be reminded that my community is rallying behind me every time I fight. Something as simple as a message that says “I heard you are in the hospital again. I know this must be so hard on you. You are so loved!” can help me to feel less isolated, less like a burden on my friends.

Try to get comfortable with being uncomfortable with my honest responses to your questions

True friendship requires vulnerability, and that means we simply have GOT to get away from the “I’m good thanks, how are you?” narrative. How often do we say this to each other on days when, on the inside, we are anything but feeling good?! My favorite, most trusted friends are the ones that I know I can answer honestly without scaring them away. It is tough, honestly, and it feels like a learned skill, even with those trusted friends. The older and more experienced I get, the better I am becoming at being honest. Some of my friends can now expect a response something like “I’m having a hard time this week. I’m in a lot of pain and I’m really nervous for my appointment next week.”

Please understand this isn’t necessarily a call to action – if you want to offer help or words of wisdom, that’s fine, but it’s important to me that you know I’m not saying this for attention, pity, or that it’s a cry for help. Trust me, if this were true, I wouldn’t have to pep talk myself into sending that honest reply. I don’t mean to sound dramatic or needy, I simply want to be honest and feel understood, even when things are messy and not at all “good”.

All in all, if you’re looking to help and support a family member or friend through some tough times, know that your presence, your kind words, and your physical gestures are so incredibly appreciated. Please don’t be afraid of doing or saying the wrong thing – doing anything at all is so much better than fading into the silence. Chronic illness, medical treatments, and hospitalizations can make a person feel isolated, less important, and less loved. Simple reminders mean the world to us when we need to be convinced otherwise. And if you’ve read all the way through this, BLESS YOU for taking the time to learn how to support the people you love most. Speaking from experience, I can assure you they appreciate it more than you’ll ever know.

Hello IR, my old friend

It’s a scene that has become all too familiar, yet somehow has not become any easier. I checked in at the covid screening tent, then made my way to registration (where they know me by name). After that, I waited in the medical imaging lobby (where the receptionist said “you’re back again?”). Then I was escorted here: to preop.

Soon I’ll change into the same ugly gown, wear the same grippy socks. The pre-op nurse (who greeted me by saying “we don’t mind having you as a patient, but we keep hoping you won’t have to come back...”) will access my port (needle #1 for the day). I’ll wait a few hours to meet with the doctor. I’ll consent to another invasive procedure, sign my name on the same dotted line. Yes, I acknowledge the risks. Yes, to all of it.

After that, I’ll be given a light sedative (not nearly enough if you want my honest opinion). The doctor will inject local anesthetic into my neck, needles 2,3, and likely 4. I’ll probably lose count. Then, I’ll have a series of CT scans. I’ll move in and out of the scanner again, while he studies the “suspicious” sites. Then, carefully, he’ll concoct a mixture of my own blood and fibrin glue, and inject into each of these areas. Directly into the nerve root. More needles, lots of them, but hopefully by the end of the day I won’t know or remember how many. Quite literally, we are attempting to glue humpty dumpty back together again. One section of the spine at a time.

And speaking of hope, somehow, yes, I’ve dared to dig down deep and find some. Let’s be honest, if I didn’t, I wouldn’t be here. I wouldn’t do this- again, for the 5th(?) time since November. Honestly, I’ve lost count. The recovery sucks. That’s all there is to it. 3ish days of strict flat bed rest. A long while of helplessness and relying on others - my personality weakness. And maybe that’s part of what God is teaching me in this season, the part of my heart that he’s maturing and growing, regardless of the fact I never asked to be grown in this way.

Deep down, a part of me has to hope that this will do the trick. That somehow, someway, this will be the day I’m healed. The beginning of returning to ME. The me who is happy, healthy, and enjoys eating donuts more than she should (I miss you, food). The last headache-free day that I can remember was July 15th of 2019 - and I really, really don’t want to make it to the one year mark.

I’ve found that somehow, hope and despair, optimism and realism are so infinitely intertwined that they’ve become hard to separate. And that’s okay. I’m both relieved and terrified to be here today. I’m both hopeful and leary. Somehow filled with both faith and anxiety.  To some, this may sound so contradictory that it doesn’t make sense. And frankly, I can hardly make sense of it myself. Other than to say that it’s necessary. I have to have enough hope in this to be willing to endure the recovery. At the same time, I can’t get my hopes up high knowing they could be crushed if this doesn’t work. 

So what do I do in the meantime? I’m not sure, other than literally one step at a time. One deep breath. Put on the gown. Sign the form. And just do it.

This morning, I’m praising God that after a million delays, I’m finally here today. Praising Him for a negative covid test. Thanking Him that through my pain, He’s already proven to use me to help other people, somehow mysteriously guiding them towards their own hope and faith even on days I can’t find any of my own to spare.

This morning, I’m praying for a smooth procedure and a recovery without complications. And perhaps most boldly, praying that this is the last time - pleading and believing for a miraculous healing.

& if not, He is still good. Yes & amen.

Way Maker ; Miracle Worker; Promise Keeper

Y’all, anytime I start to doubt gods faithfulness and goodness, I want you to point me to this moment. January 26, 2020. In my favorite place on earth (hillsong phoenix) worshipping alongside Jenna and literally weeping hand in hand as Lisa Harper spoke truth and revival into our lives. To the outside world, it probably looked like two friends with broken and weary hearts coming together to worship - or maybe it even looked so ordinary that it didn’t look like anything at all.

To me, it looked like something else entirely. 

You see, leading up to my port placement last year I prayed a lot of prayers. I prayed for miraculous healing, for something radical to happen so that I didn’t have to get the port. I didn’t want it. I didn’t want to be sick anymore. And I didn’t know what else to do, so I prayed. And in desperation I prayed, lord, if this is your will, please just bring me peace about it. 

And I know now that this is exactly the miracle I had been praying for during those weeks. If you had told me almost a year ago that the randomly assigned IR nurse who I interacted with for no less than 1 hour would later be one of my best friends and personal hype squad, I never would have believed you. I couldn’t have predicted we’d be growing in faith together. But here we are, doing the damn thing. 

God didn’t mean for any of us to do it alone. He didn’t mean for us to struggle in silence or to filter our lives and only give the best versions of ourselves. 

We all say “god gives his toughest battles to his strongest soldiers” and honestly I’ve always taken issue with the phrase. Because I’m NOT that girl. I’m not strong. I’m not even a soldier! 

Then last night as we learned about Job and how he was stripped to nothing, publicly acknowledged his grief, and then WORSHIPPED- I realized it. Maybe god doesn’t give his toughest battles to his strongest soldiers. Maybe he gives them to those who will survive them (messily, raw, and real) and STILL continue to point to Him. 

So yes, looking back, on the day of port placement, I felt that God hadn’t listened. He hadn’t answered my bold prayers. I wasn’t healed. My physical health was a mess. And I didn’t even feel that the Hail Mary prayer was answer: I didn’t feel any peace at all over my decision. And even though it hurt, I continued to praise Him. I praised Him for the things I could see but also for the things I never would.

But in the palpable, faith filled room last night, I just knew it. This is the miracle. This is the answer to all those prayers that I thought had gone unnoticed.

This freeze frame moment in a 93 year old historic church - if it’s not an example of Gods redemptive grace, I don’t know what  is. If I could bottle up the feeling and revisit it as needed, I would. So I’m writing it here, for myself, to cement it in my memory. Hopefully forever. 

“Even when I can’t see it you’re working. Even when I don’t feel it you’re working. You are way maker, miracle worker, promise keeper, light in the darkness”