To the family members & friends of a recently diagnosed chronically ill loved one…one in the thick of surgeries & diagnoses…let’s chat.
I know you feel incredibly helpless. You want so desperately to help. I know you are wondering how long of a rope you would need to wrangle Pluto and bring it to Earth to scour the surface for some magical, outer space potion to get your sister, spouse, mother to just feel better for just one single second… I’ve been on your side before, too. I know Pluto plundering seems reasonable. I know the comments flowing from you are typically well meaning and often times emotion fueled, spilling out of you before you even know it. But your loved one does not need Pluto. They really don’t need judgement, or hurled opinions. Your loved one needs community. Your loved one needs you.
Let’s not buy makeup and fashion magazines for the girl who looks and feels anything but herself to “serve as inspiration” and “keep her motivated!” Maybe you think looking at how to gain a Summer glow, rock abs in less than 6 weeks, and nail the dewey makeup no makeup look will keep us looking towards the future, to the day we will be able to do all of those things and more whenever the sickness ends. But sweet well-meaning friend, though it may very likely get better…it doesn’t end. And we don’t feel like ourselves. And we know we do not look like ourselves. The last thing we care about is getting abs again. How about making sure we keep down solid foods first before we conquer that task on the checklist of this very demanding magazine filled with societal screams? Ok? Let’s do that!
Let’s not be the person who asks “thee” question. The question that, if you’re anything like me, was and is right up there with, “Are you going to die?”. The one who asks, “WILL YOUR POOR CHILDREN HAVE THIS??!?” Oh my. A whopper. I cannot speak for every single fellow warrior out there. I do know for certain that every story is completely different. I am also fairly certain that more often than not, that question cannot always be answered with 100% certainty. I also know with 100% certainty…it’s really not your business. It’s mine. It’s my spouses. It’s my doctor’s. It is not yours. Off the table. Forever. And ever. (And ever…). Please and thank you. Amen.
Let’s not ask why. Let’s please refrain from asking your loved one why this happened, what they ate wrong, what they could have done differently in their lifetime to dodge it, how you can ensure it doesn’t happen to you, etc.
Let’s not be the scolder. “OH MY! YOU REALLY SHOULDN’T DO THAT! OH MY WORD, YOU’RE GOING TO GIVE ME A HEART ATTACK!!” At several weeks post-op, we know quite well we shouldn’t be kneeling down giving Simba a smooch because we can’t resist her puppy dog eyes for another minute. We know you are scared. We are too. We know it can be easy to think we should sit there like a porcelain doll and never move ever again because, maybe sitting on a shelf not risking any movement whatsoever will keep us safe. Heck, maybe it will even make whatever illness is trying to conquer our bodies magically disappear. But y’all. Staaahp! This is not Toy Story. If we are moving, squishing Simba’s sweet face, stretching to reach our favorite coffee mug in the cupboard, be next to us (quietly) for support. But please don’t tell us what we can and cannot do. We hear it enough. Let us prove it wrong. Because I promise, the voice in our head is already quite the Negative Nelly themselves. And sometimes, the freedom to kneel down and kiss our dog and grab our favorite mug feels as victorious as completing a marathon.
I had a handful of people tell me they cringed when Luke dipped me in our first kiss as Mr. and Mrs. What the WHAT?! The first time I stood out of bed on my own was celebrated and practiced. The first time I lightly tapped my toes ever so slightly to the morning songs Luke and I played was celebrated and practiced. The first spin. WOAH. Celebrated and practiced. We faced this thing together. We came out of it together. And you know what? We feel incredibly proud of that. During our last pre-ceremony meeting with our pastor, he joked that we should now go home and practice our first marital kiss. We chuckled. But we actually did. We had been. The dip in the wedding signified victory for us. We met the tumor. We overcame it. We will every day. Moment by moment. And sometimes, that alone feels too good to not dip.
Maybe about a month after my surgery, a family friend called. The conversation started out with the typical niceties: “How is your bad leg? How is the incision healing? What is Doc saying?” etc. It was Christmastime, so Luke mentioned something about trying to feed me as many Christmas goodies and cookies as possible so I could gain my weight back and feel more like “me” again. The friend then said, “Be careful what you put into your body though…you are feeding your tumor.”
We know you mean well. We know you want to help in any capacity you can. But comments like those will only make us feel like the pain we are feeling, the normal that has disappeared, aaand worst of all, the pain behind our loved ones’ eyes is our fault. And truly…there is no illness that feels worse than that.
So! Let’s nail down some good, productive, healing things to do instead. Deal? Deal!
Questions that will help:
1.) How can I help?
2.) How specifically, can I pray for you and your loved ones?
3.) Can I come sit with you?
4.) Can I come sit with you while you likely fall asleep from medicine induced exhaustion which we both know but I’ll pretend you’re good company anyways because I’m a good, real, loving friend?
5.) Can I pray over you?
6.) What does your spouse, sibling, parent need?
7.) What is your spouse’s, sibling’s, parent’s favorite ice cream? Chipotle choice? How can I spoil them?
8.) What can I pick up for you at the grocery on my trip today? Zero judgement zone.
9.) What can I help you do that will help you feel independent? I won’t tell anyone. Pinky swear!
10.) Can I do your nails?
11.) Can I scratch that itch you can’t reach anymore?
12.) Want me to bring my dog over? If I don’t have a dog, want me to find the nearest dog and bring him/her to you for snuggles?
1.) Things are going to look a bit different. Maybe just “for now”…or maybe forever. We know this. We don’t like this. Adapt to this new normal with us. Understand that the Christmas Eve church service may need to be rain-checked…and a Christmas Eve puzzle tackling will fill the room with The Holy Spirit even more.
2.) The “small” things you think of to help will always mean the most to us. Out of everything anyone did for us in the rockiest of times thus far in our ride with Hamilton, some of the most meaningful include my brother in law buying Luke new, extra cozy pajamas for the hospital, my sister taking Luke for a walk around the hospital halls to discuss spearfishing with him (something she has no interest in, but knew full well it would get his mind off of fretting over me, of which she had a very big interest in) and my other sister cooking and freezing meals for us in bulk so Luke didn’t have to cook on top of his jam packed schedule of Nurse/Spouse/Full Time Bill Tackler. Those “little” things meant everything to us. They will mean everything to your loved one too.
3.) Celebrate everything with us. All of our firsts are all things we, admittedly or not, feared we may not see. Our first time in a car again, our first time in a Disney park again, our first “I-Didn’t-Need-An-Oxy-Today” days are all miraculous. Celebrate them with us. Cling to the hope in them with us.
4.) Just because a hospital stay and weekly appointments are no longer on the table, it doesn’t mean we are 100% again. It may seem “back to normal” in your eyes, but I feel confident in saying for most of us, it doesn’t feel that way, and likely, though we may feel better than we did, we won’t ever feel good. At least by the standards of what used to mean feeling good. Got it? Don’t hover and don’t fuss, but please don’t forget about the very real reality that is now ours. Please remember to ask us how we are, not just physically, now and then. It means so much. Feeling isolated, misunderstood and like a burden is a feeling we tackle daily (sometimes, it’s a minute by minute fight). Asking how we are feeling reminds us we are not alone. It shows us you see us, and you are also right alongside us in this strange new norm.
5.) Lastly: Tell. Us. About. Your. Life. We desperately want to know. We desperately need a normal conversation that does not consist of how many milligrams of XYZ medication is needed. And I promise you, what we are facing is never too gargantuan to lead us to not want to hear what is going on in your heart. Yes, we want to hear about your promotion. Yes, we want to hear about your parent’s anniversary. Yes, we definitely want to hear about the four year old child in your class who threw a chair across the room. (Anything that will make us laugh is always a win!) These things matter to you, and no illness or surgery is going to make them not matter to us.
As easy as it is to feel like there is nothing you can do to help us, let me tell you: you can and you will completely reshape how we work through this new normal. You can and you will lift us up when we want to be angry and upset with the world. You can and you will make us feel not so horribly alone. You can and you will emotionally heal us as much as possible. You can and you will heal right alongside us; finding a way to laugh at the days of X-RAY paper mustaches and Grandma style hikes all the easier and more jubilantly.
Big Hugs. Always.