"Watch With Me"

 (Celebrating Halloween 2005)

(Climbing Provo Canyon, Summer 2005, 4 months before my health took a dive)

Several weeks ago I had a bad day.

I usually try to avoid blogging about such events 'cause who wants to hear about THAT? But, I am learning a lot through my experiences so to anyone it might help, here it goes. On this particular day I saw some folks I hadn't seen in a long time; people that I absolutely adore. I'd been looking forward to our little get together and couldn't wait to laugh and talk about all the things that are great and wonderful in our lives, but before we could get there I had to wade through all the questions/suggestions I've grown to dread:

"How is your health?"
(Well, I sound the same)

"The doctor hasn't found ANYTHING to help you yet?"
(If he had I would have tried it by now)

"Have you tried a new doctor?"
(I've been to 3 specialists & 4 GP's)

"Are you asking the right questions?"
(maybe you should accompany me next time)

"Have you tried ABCDEFGHIJKLMNOPQRSTUVWXYZ?"
(Probably, yes. You might be surprised at the things I've tried)

"Maybe you're allergic to Utah, if you'd just move you'd start to feel better."
(Not likely since I'm allergic to perfumes, fabric softeners, printed ink, new clothes, everyday chemicals, etc.)

"I've heard parasites will cure allergies, you should give it a try..."

Yes, you read that right. PARASITES. That was an honest suggestion followed by all the pat-on-the-back reasons why these people and their families never get sick. By the end of the day I wanted to disappear into the floor. Now don't get me wrong, I love these guys and I'm really happy that they are healthy (really! I wish everyone was!) and I don't mind people asking me questions about my health as long as they do so from a place of love rather than judgement. Perhaps if the conversation had gone something like this, it would have encouraged a different outcome:

"How are you feeling?"
"About the same..."
"I'm so sorry.../...that must be frustrating.../...you are so patient..."
"What treatments are involved? Tell me more about this disease....etc."

Notice the change from:

HAVE you?

ARE you?

You SHOULD...

to 

How are you?

You are...(positive comment here)

I'm so...

Tell me more...

In writing this I realize that most people just want to help. And I admit that I have sometimes been one to offer unsolicited advice at the wrong moment. Sometimes I just want to "fix" a problem so the person I love won't have to suffer anymore. What I didn't realize is that often these types of conversations make the person we are trying to help feel like we are trying to fix them instead, and let's get real, who likes being told they are broken?

Upon further inspection, there are times I have done this so I won't hurt as much. Spending time with someone who is suffering can be hard and it takes a lot of patience. Especially when you think they aren't handling it the way that you'd like. When you love someone their heartaches will hurt your heart. I get this. From someone who's been walking this road for a while, I appreciate those who have been willing to bear it with me anyway! My heart is full every time I think of your goodness.

----

Six months before I started having health issues I met a good friend. We spent a lot of time hiking, climbing, and talking with one another. One afternoon we went for a drive and stopped at the edge of a gorgeous mountain meadow. As we sat on an old wooden fence that crisscrossed along the side of the road he told me about an accident he'd been in and how it had altered his life. He had suffered a traumatic brain injury which affected his short term memory. I hadn't really noticed so the thing that surprised me most was the deep embarrassment he felt about it. He repeated the words so many friends in our apartment complex would casually drop about his forgetfulness. I didn't understand how much those words stung until the shame of a physical problem wove its way into my own daily routine.

Now that I know, I wish I would have been a better friend. At the time I was too focused on my own insecurities to be a proper support for him.  Rather than making more of an effort to understand I tried to guess how he felt about things. Looking back, I wish I would have listened better and asked appropriate questions.

Over time we both moved and drifted apart. Now that I've lived with AERD for so long, I especially admire his faith. He had so much faith in God, and the future he was promised. I never heard a bitter word fall from his tongue. Often, I think about his words and long to have a conversation with him. I'd like to know how he became so good. I wish I could ask him how he pushed through the bad days, and let go of the dumb things people say. Perhaps he wouldn't be able to tell me, but I'd love some good faith based conversation from someone who's been on this side of the challenge. 

----

Recently, while studying The New Testament, the words of Jesus caught my eye. The night he suffered in the Garden of Gethsemane he said: "my soul is exceeding sorrowful, even unto death." Those are some pretty heavy words. If you've ever felt like the Savior isn't touched by discouragement, or depression, that sentence wipes away all doubt. He knows what it is like to be dragging the depths. The next seven words taught me so much:

tarry ye here, 

~and

watch with me.

Three times he comes back to find his disciples asleep and asks "could you not watch with me one hour?" This makes me sad. When I think of Jesus in his darkest moment just wanting someone to be there, my heart swells. I'm sure his disciples did not understand the magnitude of the moment. No one could comprehend the depth he faced. They certainly couldn't have taken it away. But there is something so powerful about someone trying to understand. During Jesus' hardest moment he asked for two things:

1. Tarry ye here  (Be close by)

2. Watch with me (Be involved in the process, experience this with me, try to understand).

I believe the Savior gave us a pattern here in how to support those who carry heavy burdens.

Don't be afraid of it. 

Don't check out.

Don't try to fix it.

----

Be there.

Be who you are
(use your talents ie: comic relief, kind gestures, etc)

Try to Understand

----

You have greater power to lift people than you think.


Here are my tips on how to support someone with a chronic illness (or other heavy burden):

If they are being flakey: This is not a reflection of how they feel about you. Often, there are specific physical reasons they might not want to go for a walk, go to a movie, hang out with a bunch of people they don't know, or commit to an event so far in advance. (ie: I used to dread going to a movie theater because my nose would run like a tap, and I'd spend the entire time trying to distract myself from sneezing).
What you can do: Find out what they're worried about, think of ways to minimize their discomfort, or plan another activity.

If they don't want to talk about it: This usually means 1 of 3 things:
1. They don't feel emotionally safe enough to talk about it. This doesn't mean you aren't a good friend/family member, or that you haven't shown a great deal of support in the past. Shame is often deeply intertwined with a physical problem. Add feelings such as sadness, anger, despair, betrayal, and uncertainty, and you can understand how close to the surface emotions can sometimes be.
What you can do: Be a good listener. Find ways to show acceptance and love. Divert attention from the things they are embarrassed about. Give it time--wait until they bring it up. Withhold judgement.

2. They've been asked that same question multiple times--maybe even within the last week--and they've finally reached their breaking point.
What you can do: Think about the question. Is there a better way to approach the subject? Rephrase the question or wait for a better time to talk about it.

3.They are tired of talking about it. When you have a chronic illness you live with the problem 24/7. Believe me, they think about it all the time. Sometimes they just need a break from talking/thinking about it.
What you can do: Do something fun to get their mind off it for a while. Watch a funny movie. Talk about a good book you're reading. Engage them in something positive. Help them experience the things in life that help them feel normal and allow them to still connect with others.

You want to offer advice: This is fine as long as they are open to it and it is coming from a place of love.
What you can do: Wait for them to ask for it. Don't be overbearing. Watch their reactions. If they become uncomfortable STOP! Rather than saying things like "You should..." (which comes across as "I know better than you") talk from a less invasive standpoint like: "I'm not an expert but I recently read...or.."I know your situation is unique, and you might have already tried this but have you heard....

If they are having a bad day: Unfortunately we all have days when we aren't our best selves. When someone isn't feeling well, they face the typical day-to-day ups and downs with the added burden of embarrassment, anxiety, pain and/or exhaustion. This sometimes means their ability to cope is less than it would be otherwise.
What you can do: Be gracious & love them anyway. Find a way to help out with the day to day stuff. Weed their garden, drop off a snack, offer them a ride, Make them laugh, etc.
I am so grateful for those good, kind souls that have done this for me again and again. You have made a hard road bearable. I love you forever for that!