Tag Archives: Personal

What the Chronically Ill Really Need from You

As a person with a chronic illness, daily life can be a lot to handle. One of the more difficult things, in all honesty, is well-meaning people. I know it’s hard for you to know what to say or do: really I do. To help us both out, here are a few examples from my life just this week.

Problematic response to finding out I’m ill #1: “I know just how you feel! I lifted something wrong and had a backache for almost two weeks! It was awful!” You had pain for two weeks, I’ve had pain for almost 30 years. That’s not the same thing, and no, you don’t know what it’s like. Comparing your temporary condition with my lifelong one isn’t helpful. You want to sympathize, and I appreciate that, but to equate a temporary, short term condition to a constant day-in, day-out, decade-after-decade condition only shows that you DON’T know what it’s like.

Problematic response #2: “Have you tried essential oils/chiropractics/canned nutrition/a different doctor/a voodoo witch doctor?” These are usually paired with anecdotes of someone you know or heard of that tried said solution and was miraculously healed. Once again, I appreciate your heart in this, but yes, I’ve tried it all (except the voodoo witch doctor), usually more than once. It didn’t help, or I’d still be doing it and I’d be well. I realize you have no way of knowing that, so I will have grace with you, but don’t continue to push. You can say it once, but then let it go. Please. Just let it go. If you don’t, I might have to start singing that song at you, and nobody wants that!

Problematic response #3: “Has your doctor done test X on you?” This is a generalized response which includes “Why hasn’t your doctor…” and “Why doesn’t your doctor…”, and “You should make your doctor…” and is the bane of my personal existence. I don’t know why my doctor hasn’t done those things, and no, I’m probably not going to argue with him about it next time I see him. I may ask him about it, but every time I’ve done this he is fully aware that such a test or procedure exists and has valid reasons why he hasn’t used them on me. Please remember my doctor has more experience with my disease than you and I together do, so he generally knows what he’s doing.

Problematic response #4: “You need to try praying X amount a day/X scriptures X times a day/ speaking to the disease in the name of Jesus and declaring it cast into hell/ repenting of hidden sins/ attend the meetings being held by Brother Miraculous in Iowa/ or getting the deacons to anoint you with oil.” This is really just another version of response #2, but in a way it’s more painful because at the root of it you’re telling me if I was more spiritual/holy I wouldn’t be sick. My illness is not my fault, and it’s not because I’m lacking in my relationship with God. We live in a fallen, decaying world, and sometimes illness happens.

So what do we really need from you, the healthy ones? We need compassion and understanding. What about saying “That must be really hard to deal with. I’m sorry to hear you’re going through that.” And STOP. We also need you to not assume we can or cannot participate in something you are going to be doing. If you are concerned we might not be up to it, ask anyway, thus allowing us the dignity of getting to control our own lives and schedules. If you assume we can, be prepared we may need to say we can’t and accept our decline with grace.

If we know you well, and you know about our journey and happen to hear something that might be new to us that might help it’s OK to tell us about it, but say it once, then stop. Most of us are open to new possibilities for relief, but most of what you hear about is not going to be new to us, because we try everything. I’m blessed to have a very patient specialist who takes all my questions respectfully because he deals with chronically ill people all the time, and he knows we search for any straw to grasp at.

Every single friend I have that is chronically ill has had the experience of being made to feel as though they are letting other people down by not getting well. People give advice, or the religious ones pray, then look to us expectantly hoping to see us jump up and yell hallelujah and run around the room. When it doesn’t happen they are crestfallen, and most of us feel bad about you guys feeling sad. Does that mean we don’t want prayers for healing? No, but we need you to keep your emotions about the outcome to yourself. That sounds harsh, but we really do need that. If you’re disappointed, how do you think we feel? Pray with hope and expectation, but with understanding that you’re not the first one to pray for us, and so far that hasn’t been the answer for us.

Personally I pray for the day that all that accumulated prayer bursts forth in glory and I will walk pain free and full of energy, a walking testimony to the goodness of God, but for now I limp through life, learning to lean on God in the midst of my pain. While it’s not what I would choose, God is using it to grow my faith and strength in my relationship with him. I have learned a lot about faith, God, living with priorities, and walking in mercy, and I’m at peace about my circumstances. If God has allowed this, I can survive this. And you can, too.

Following is a quote from Misty Edwards that really sums up how I live my life. If my illness makes you uncomfortable or sad, maybe it will help you, too.

Because life, life is but a vapor
But its brevity is what makes it a treasure
So feel it all like a love letter
To the One you’ll live with forever.

                       –Misty Edwards, “Little Bird”

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Happy Birthday, Mattie Sam

Four years ago today I had one of those milestone birthdays generally celebrated in a big way, making big memories. I don’t remember what presents I got, or what my birthday dinner was. I only remember one thing: the phone call saying Matthias Samuel was about to enter the world. I spent the rest of the day checking my phone every five minutes to see if he had arrived. Much to my disappointment, he waited two hours past midnight to make his appearance, but I decided to claim him as my birthday buddy anyway.

Mattie was born with Down syndrome, which we knew he would be, but he also had a heart condition, as well as some other physical complications. He got an infection when he was four days old which almost took his life, and that was just the beginning. We almost lost him so many times during his first year that I lost track. Through it all, Mattie was busy being Mattie. This boy had a smile that melted the hardest of hearts. You know at the end of How the Grinch Stole Christmas when the Grinch’s heart grew three times its size? That’s what Mattie did for us. Two months ago, on August 21, 2014, Mattie Sam met Jesus face to face. It was sudden, and it was a shock. We are still reeling from it, in fact.

There are those who say Mattie should not have been born because he was sick. Did he suffer? Yes. But guess what? He also loved. He loved and was loved. He had joy, he gave joy. He learned, he teased, he grew, he inspired. Through social media thousands saw the pictures Mattie’s mom posted of him daily and grew to love him. I’ve heard many people say when they had a bad day they’d log on to Facebook just to look through pictures of Mattie until they felt better. That was our little Miracle Mattie. Through it all, he was a trooper.

His parents are also troopers. Life with Mattie was hard: really hard. But if you ask them they will say that yes, it was worth it. Yes, if they had to choose, they would choose to do it all again, a million times over. His siblings, ranging from the age of 7 to 23 also say it was worth it. HE was worth it. Yes, life with Mattie was hard, but life with Mattie was also beautiful.

We all wish we had more time with Mattie, but we are grateful for the time we did have. Just like Mattie, we learned, we loved, we grew. We’ll see him again someday when it’s our turn to meet Jesus face to face. Until then, we remember, and we celebrate. Happy birthday, Mattie Sam!

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(The above photo is Mattie at the age of two. His mom wrote a beautiful book explaining tracheotomies to help the many children who were following Mattie’s life understand what that thing on his neck was. The book has been used to inform and prepare many families across the country)

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SnowShow Update

If you read my recent post on the experience of seeing “Slava’s SnowShow” on Broadway, you may be interested in an update. As you recall, I referred to the experience as “way too much fun”. Well, it seems I could also refer to it as “the show that keeps on giving”.

We saw the show on a Sunday evening. The next Saturday morning found us in the Philadelphia airport, on our way to Kansas City to help Adam celebrate his 21st birthday. As preparation for going through the security checkpoint, Brian put his keys, wallet, and all those other pocket essentials a guy carries, into a jacket pocket. The jacket took the radioactive ride through the scanner, and we retrieved our belongings. As we were putting ourselves back together, Brian pulled his wallet out of a jacket pocket to replace it to its rightful place in a pant pocket, and the wallet wasn’t the only thing that came out! Continue reading

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More Reasons to Love IHOP

We just got back from Kansas City, and I must admit I am even more in love with the IHOP community than ever before. Here are the new reasons I found:

  1. You gotta love a community where total strangers come up to you to say how awesome your kids are.
  2. You gotta love a community that embraces adopting orphans the way the rest of the country embraces buying your own kids a Wii.
  3. You gotta love a community where the adults are full of child-like enthusiasm and the kids are full of adult-like wisdom.
  4. You gotta love a community that doesn’t shrink from Scripture, even when the message doesn’t fit with our feel-good, politically-correct-until-you-die way of thinking.
  5. You gotta love a community that includes a coffee shop that sells breakfast in the morning, and then again in the afternoon for people who aren’t morning people.
  6. You gotta love a community that teaches people to aim at “excellence”, while encouraging them to “press delete” and try again when they fail.
  7. You gotta love a community where a short walk down the hallway, at any time of the day or night, will allow you to overhear bits and pieces of conversation like, “Well, I always thought the pre-trib theory had a lot of validity, but I was reading in ‘Daniel’ and…”

What is there to say but, “Gotta love it!”

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Fall is Here

Well, it’s that time of year again; time when days are shorter, weather is cooler (praise God!), and leaves turn. Leaves turn, and then they fall. And fall. And fall. Can you guess what I did this week? I’ll give you a photographic hint:

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Lord of the Dance

It’s that time of year again; the season when the annual Christmas dinner is looming on the horizon. Each year we join the rest of the staff of Brian’s company for a formal dinner, after which a band takes to the stage and the party begins, with all his co-workers taking to the dance floor while we watch from the sidelines, then slink away under the cover of darkness. Well, not this year! This year, we wanted things to be different, so we decided to take ballroom dancing classes. Yep, that’s right. The Beatties are dancing. Well, at least we’re trying. So far we mostly step on each other!

This isn’t our first attempt at dancing. Continue reading

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How I Know I Don’t Really Get the Sermon on the Mount

I try to live out the Sermon on the Mount. I really do! I try to put the needs of others above my own; to have grace with others and their failings and/or quirks. I have a long way to go, though. I proved this to myself just recently. I took part in a contest-type thing, where part of the process is to watch the scoring take place. Now, it’s normal to not necessarily agree with the decsions of the judges, but I went above and beyond. As I was participating, the blog entry I would write about the event was forming in my head. It didn’t take long to realize this was a blog entry that would never be posted, primarily because it wasn’t very kind in its tone or attitude. Below is a revised version of the offending post. I removed any unkind phrases or words, replacing them with my favorite word for bad attitude, “snark”. If you’re brave enough, read on…

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