Chronic Illness: Things I Miss

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Photo Credit: personal.psu.edu

Photo Credit: personal.psu.edu

t’s been four months since my brain surgery on December 30, 2014. I’m actually surprised I can remember that date without asking someone. My life has changed a lot in the past few months. I’d like to share a few things I miss. I hope it will help bring understanding to those who have friends with chronic illness and/or brain illness.

1. I miss my memory.

I forget things easily. It can be embarrassing, and I can never predict when it will happen or what kinds of things I’ll forget.

Like how to count change at the grocery store.

The name of an old friend.

How to use my phone.

I’m not sure if my memory loss is related to my illness, my brain surgery, or other factors like exhaustion and medications. Doctors haven’t given me a good answer, which is disconcerting. So if you meet me somewhere and I don’t refer to you by name, don’t be offended, Bub.

2. I miss eating.

Not that I can’t eat, but a lot of things about eating have changed.

My mouth hurts all the time. This is because the lesion in my brain stem is pressing on nerves in my face.

Foods with texture can be uncomfortable and difficult to eat. For instance, salad is a challenge. And rice and chips and crackers. It’s also difficult for me to eat and carry on a conversation because I need to focus on swallowing and where food is in my mouth.

Because portions of my mouth and the back of my throat are numb, I choke all the time. I choke when I’m not eating, and the choking makes me cough. So I’ve become a bit picky about the kinds of food that feels “safe” for me to eat and doesn’t hurt my mouth.

3. I miss walking. 

I am able to walk around my small house. And I do walk through Dollar General. But larger spaces are a challenge for me. I’m unable to “walk the mall” or do the kinds of walking others do.

I plan my activities around the limited strength and function of my legs. I’m on a plan to increase my endurance and get on my treadmill as often as possible. But, unfortunately, dizziness and nausea are part of life on a regular basis for me. When they strike, I walk as little as possible and lie on the couch to help keep my tummy under control.

Often my legs are “gone” by one or two in the afternoon. Apparently they hike off somewhere on their own and leave me behind on the couch.

4. I miss church. 

I go as often as possible, but my illness makes my life unpredictable.

I’ve missed the last three weeks, and I’ve cried about it. Yep. Cried. I LOVE my church and being with the people there. We’re an army for Jesus, and I need to see my friends’ faces and be reminded of their stories.

I need to worship.

I need to be broken. Encouraged. Blessed. Humbled. Given the privilege and to express my gratitude.

5. I miss life. Simple things like…

Any activity that involves walking more than twenty-five yards.

Going out for lunch or coffee.

Seeing friends I haven’t laid eyes on in months.

Attending events after 7pm. (This has meant not seeing many close friends since before Christmas.)

Anything that happens after 8pm.

This is NOT a complaint list, but a description of some of the ways life has changed and the things I grieve.

If you know someone with chronic illness or who has experienced personal loss, they grieve every day of their lives. This does NOT mean they do not have joy or trust God. We are allowed to say that challenges are hard and bring that pain to God.

Pray for them. Show compassion and curiosity. But most of all, consider how God might be calling you to enter into their story. 

A great resource for families, caregivers, and friends of those living with mental illness, offered free of charge from the National Alliance on Mental Illness, the Family to Family 12-week educational course.

If you or a loved one has experienced chronic illness or loss, what resources or assistance has helped you?

2 thoughts on “Chronic Illness: Things I Miss

  1. Great list, Shelly!

    When I went through brain surgery April 2011. My life, too, changed. When I returned home from the hospital I thought I’d bounce right back. But that was not the case. I missed my independence. I needed help with the simple tasks of bathing and brushing my hair. My balance had been affected and I missed walking without steadying myself by trailing a wall or a line of furniture. And I can’t forget driving. Brain surgery and anti-seizure medication kept me grounded.

    But I did gain because of my experience. I now take time to enjoy more. I purposefully stop on busy days … pause … and experience whatever beauty is around me. And no matter where I am there has always been beauty. I’ve become a hugger–relationships mean more than they once did.

    Yes, I miss many things, but God did not leave me with voids. Over the past years He showed me how to replace what I missed with new experiences. Oddly enough, I’m so very thankful for all that I’m missing.

    • Thank you for the insights, Robin. Yes–God does not leave us with voids. He uses these experiences to take us to deeper places of understanding and dependency upon him, which are tremendous gifts.

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