Friday, June 10, 2016

Sometimes, I get jealous...

Sometimes I get jealous.

I know, we all have those moments...but mine just feel like they come at bad times.

Dealing with a chronic illness means my normal has changed. My family's normal has changed. What might be ER symptoms for someone without mast cell disease are now just wait-it-out symptoms in our family. The threshold of worry has been raised because we've learned how to live with symptoms that range from just uncomfortable and annoying to severe and uncontrolled.

I'm not saying this to sound like I'm so hardcore. Actually what I'm saying is that the place I'm at right now is unfortunately conditioned to harsher symptoms than we would wish on anyone. If you live with anything long enough, you figure out ways to deal with it. Whatever that may be. Nausea, vomiting, dizziness, shaking, headaches, fevers, shortness of breath, numbness, vision changes...what used to be worrying symptoms, I've now learned to work through and just manage as best I can. Not because I want to show how tough I can be, but because I want to have a life. If I only do things on symptom-free days, I would not do anything.

Yes, I did just say that. I am symptomatic EVERY. DAY.

After almost 10 years of symptoms at this point, I've just learned what needs worry, what I can work through, and when I am down for the count. I don't always get it right, but usually I can adjust my activities accordingly. Passing out only once or twice in an afternoon is no longer a reason for worry. Throwing up every morning for a week, eh, what's "normal" anyway??

So how am I jealous?

I get jealous of friends who are sick or hurt.

Yes, I just said that. I'm not proud of that, but it's true. I'm hoping I'm not alone in this and that other people living with mast cell disease or chronic illnesses can relate.

When someone who is mostly healthy is hospitalized or badly injured, the first thing to happen is for friends and family to rally around them. Meals are brought, prayers are said, people make time to come visit either in the hospital or once they get home, they are reminded how loved they are and how much we want to be there for them.

I'm not at all upset about that. In fact, I love being able to help in whatever way I can. I love delivering a meal when someone is out of commission or picking something up from the store or just spending time with a friend when they are stuck at home. One of the blessing of living with a chronic illness is that I CAN relate when someone is stuck at home for extended periods of time, and I so enjoy being able to just spend time with someone who needs some encouraging because I know how much that means to me.

Here is what's hard. When someone mostly healthy gets an acute illness, there is a crisis period of illness, but with time, it fades. Infections leave, incisions heal, injuries mend, and eventually the hospital stay is just a memory and life goes on. And as the health crisis passes, the need for help also fades. The family and friends who so willingly made time to help are able to be a part of the healing process and rejoice as everyone is able to resume normal life again.

With chronic illness, we get stuck in a crisis and recovery cycle. We go back and forth between ER trips and trying to recover at home. Many times our symptoms persist even if we don't go the hospital, since there may be little that doctors can actually do. There is no transition back to "normal" life because our normal has changed.

And that's where I get that feeling of jealousy. It's that I wish I had an acute illness, too. Not so I would feel loved by friends and family (I do, trust me =D), not so Nick and I would get meals delivered to us (let's be real, that's not so helpful for someone with a feeding tube anyway =P), but because it would mean that there was an end.

Usually I am okay with where I am at. Yes, it can be hard and disappointing and frustrating at times, but over the years, I am learning (notice I didn't say "have learned") how to be content with where God has me, and take life one day at a time. Nick and I do our best to find a reason to smile every day and enjoy life despite mast cell disease, and we do!

But it's in those moments when I see friends and family dealing with their own medical crisis, that it hits me again that their hope for treatment and return to "normal" life is something I don't have right now. The "prayers for healing" posts on facebook and meal sign-ups during the recovery period are sometimes just painful reminders that my healing may not come in this lifetime and my "recovery period" is open-ended and likely has no end.

It's not that I'm jealous of the pain that people may be going through that I'm all too familiar with. It's not that I want to feel the support from friends and family that appears during an acute illness. It's that I'm jealous of the temporary nature of acute medical issues and that the chronic-ness of mast cell disease just hits me in the face again.

"Hope deferred makes the heart sick, but a desire fulfilled is a tree of life."
Proverbs 13:12

It's in these moments of seeing and feeling hope deferred yet again as more months pass without healing while seeing others granted healing and feeling the harsh reality of living with a chronic illness hit anew that I truly feel what this verse is saying as making the heart sick. It is hard. It hurts. There are days when the weight of this world is overwhelming. And I get jealous...wishing that I didn't have to wait...wishing that maybe my prayers for healing would be answered this time...

But even in the midst of that jealousy, I try to remind myself of what my true desire is. The reality is that while I have moments I deeply long for healing, more than that, my deepest desire is truly that my life would be lived in a way that points to God...regardless of my circumstances...I'm reminded that all pain and suffering is temporary. I was not created for this world, and while my chronic illness may follow me during this life, I still have that same hope for healing for eternity. What seems like forever in this life will be such a brief moment compared to life in heaven. Those are the truths I try to hold onto during these moments of's just that there are times the reality of life in a fallen world just hits harder than others...

I don't want to be jealous of temporary health, but be thankful for the promise of eternal healing. Sometimes it's just hard to see in the midst of what FEELS unending while watching others receive healing now.

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