The Ministry of Lisa Copen

Lisa Copen, Founder of Rest Ministries which serves the chronically ill, shares about mothering, illness, ministry and more.

Feeling a Touch Frustrated… and Lonely

I had all my plans lined up. Even my mom flew down from Oregon, planning on a 3-week stay while I had wrist/hand surgery (due to rheumatoid arthritis and a soon-to-be tendon rupture.) Mom arrived and we had a few days to celebrate my 40th birthday and work on shipping Rest Ministries inventory out to our new shipper, and then I would become “the patient.”

But I woke up 4 days before surgery with a bad case of cellulites on my ankle, where I had experienced edema a couple weeks before. That morning, a Sunday, I called my rheumatologist, and she sent me to ER. Monday the surgeon said “nada” to surgery; my ankle looked very red.

Tuesday I was glad surgery had been cancelled. My ankle was growing bigger. My foot looked like a foot of the cartoon character Shrek, a ball with swollen toes sticking out the end. I saw the rheumatologist, who said it had abscessed. By Friday I was back to ER and am now going to the wound care center and having an MRI on Monday (10/27), all because of an inconvenient infection.

So, all this is cause for frustration, right? But more than the infection, painful trips to ER alone. (Hubby had to work, mom had to pick up my son. It’s not as if anyone bailed on me, but still.), Limping around, hours sitting around with my leg propped up, not knowing if my wrist’s tendon was going to hold. Gasping in pain every time I pick up a cup of coffee or try to start the car… Or just move! It’s all getting a bit old.

Mom left early knowing she’d be back soon, when surgery was scheduled, maybe in a few weeks even? No. Today is 4 weeks exactly since surgery was scheduled.

I wasn’t ready for her to leave but knew it was for the best. My husband thought he could get the whole next week off work and pick Josh up from school, take him to swim lessons, etc. but at the last minute he had to work. So I was back to full time mom-duty.

My mom said, “Call the church and see if someone can help.” She is an elder at her church. She provides meals, support, drives people to the doctor’s office, whatever they need. “My church doesn’t have elders, mom.”

“Well, call and just tell them what you need.”

Sounds like advice I typically give all of you! But I didn’t call them.

Why? You know the answer, huh?

The last time I spoke to the church’s secretary I had to give her all the information about the HopeKeepers group because she argued that they didn’t have any such group for the chronically ill. I gave her the leader’s name, address, phone and a 30-second infomercial for the group.

“What about the women’s ministry?” my mom suggested.

That’s who I would suggest someone call too. I mean, don’t women love to help people out?

But I didn’t call. Last year I spent nearly two hours with the leaders trying to explain how chronically ill people need help sometimes regardless of how well they may appear. They just didn’t “get it.” They couldn’t see whey people with illness couldn’t just deal with it. They couldn’t get over how healthy a person could look.

After all, the women in their ministry are busy! They have a lot going on in their own families, They aren’t available for “hand outs” to people who are just a little bit tired.

Yet I knew, if I called and said I was having chemo, they would kick into high gear with help. But a staph infection? What’s the big deal? So I’m a little tired, right?

It would take three calls to explain everything; a few people would call if I was lucky, one may show up… and then I would look perfectly healthy. Should the house be messy or clean? Should I be dressed or in pjs? And really, how hard is it to pick up your kid at school? (Hard when it’s a walk to the parking lot and 95 degrees outside, but still, the odds of me passing out were… well, pretty slim.)

And with kids and car seats, even if I trusted a total stranger to drive my child around, I can’t install the car seat.

The truth of it all…

It would take a lot of effort to line up help and I just didn’t have the energy to go through all of that. I couldn’t deal with the emotions right now of being hopeful help was coming and then having the person cancel or just not show up at all. I couldn’t deal with long conversations explaining why I was even asking for help.

A few people knew I was having surgery, but only one neighbor offered a meal. That was cancelled. I didn’t have surgery and my mom was here after all.

I held out for two weeks without a single tear falling, keeping a happy face so Josh wouldn’t be scared, trying to not worry my husband. One day when my husband was (what I felt) brushing all my fears off, I had to throw something. (Quite unusual for me. I save it up for times like this.)

We were in the garage, and when my tote bags didn’t make a big enough clang, I threw a couple tubs of low-sugar frosting fro the pantry shelf. Josh came around the corner and said, “Mommy, you are losing your temper. You need to take a rest!” and scolded me with his finger.

Yeah, go take a rest.

Just what I wanted to do. But what I kept needing to do.

I touched base with my best friend when I was supposed to have surgery. She felt bad because she had the dates wrong, and offered her sympathies for what I was going through. But then I didn’t hear from her for over two weeks. She had a lot going on with her own family, but I so longed for her to just come by with Starbucks and sit on the patio for twenty minutes.

I finally called her after my mom left and bawled on the phone in front of all the other moms at swimming lessons. I explained it had been the worst two weeks I could remember. She invited me to a women’s ministry event the next week, picked me up and drove me there, despite more tears on the phone moments earlier.

Two weeks have passed again and I should call but I’m not a fun person to be around right now. I don’t even know what I want, so how can I expect other people to know? When I am hurting I just shut down. People don’t want to be around illness or talk about MRIs or the size of a gooey wound.

Two weeks ago my husband took my son to church and saw my other two best girlfriends. He said, “Lisa isn’t doing well. Call her.” (He told me in so many words that he told them I “really needed them.” –pretty rare for either of us to actually admit!)

No one called.

I had hoped maybe Josh could have a play date or something too. I’ve just been surviving the afternoons with lack of energy.

Basically, I’ve never really been “down” for so long. And I’ve never fought infection like this, not knowing if I could lose a foot! The doctor said last week–very casually–“and then the surgeon goes in and takes a piece of bone out to check for infection.” Uh… excuse me? I tried to explain my bones were already a disaster and that could set off more deterioration, all in the name of being pro-active.

I usually know that tomorrow has the possibility of physically being a better day. But now that I’ve been off Humera since late August, realistically I know it’s going to keep getting worse before it gets better. Each morning it’s harder to get out of bed. Each night, it’s harder to sleep. Because of the wound, I can’t sleep on my right side, which throws my whole body off from the fibromyalgia flaring on a shoulder that has chunks of bone missing.

And my hand hurts more every day. And I don’t know when I can have surgery now…

My whole family has their life on hold too.

So my point in my sob story? I don’t know if I have one. But here is what I do know for sure:

  • God is in control, regardless of how it feels and I have much to be grateful for. Especially that I didn’t have surgery while I had an infection.
  • That I am human and despite the steel-magnolia attitude, it’s a façade. I still need people. I still need someone to say, “I’m here for you.”
  • It’s hard to ask for help. I always knew this, but I learned it in new ways, because of my resistance to call my own church.
  • Just because your church is big, doesn’t mean it’s easy to find help. Sometimes smaller churches are much more effective at knowing what is going on with members. With over 7000 members you would think I could find someone there who could offer some assistance; only I was on their committee a few years ago to set up such a ministry and it never happened because they were too worried about lawsuits.
  • People give you a certain amount of time to “get better” and then you are expected to just “be better” regardless of the reality. I think most of us get 2 weeks tops. Then you are expected to move on and get back to life.
  • People try to be encouraging, but it doesn’t always come out right. I had a few say, “Your foot looks a lot better than I expected.” But that was 2-4 weeks after the infection was an inch wide. Maybe I should have taken photos?
  • Despite writing the book, “Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why” I’m a long way from figuring this all out myself and need to go and read my own book again. Lately I’ve been reading a few books by John Piper.

I am blessed to have you! I hope my own transparencies will encourage you that I don’t have all the answers, I don’t have people lining up at my door to offer help either, and that together we can encourage others as well as make changes so people do have help when it’s needed. Together maybe we can figure it out.

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12 Comments»

  Lorrain wrote @

Hi Lisa,
I, too struggle with Rheumatoid arthritis, lupus and membership in a 7000 member church.
It is very difficult, ten years into this journey, to ask for help. I find many strangers will meet me at my point of need as I hobble along from place to place. But it’s frustrating to be in the place of constant need.
I’m 45 years old and married with an adult son. Facing hip replacements, elbow replacements and heaven knows what else before the insurance and/or the 23 year marriage runs out…
Its been refreshing and validating to read your story. It makes me feel that I am not alone in this world of meds, treatments, visits, xrays, forms; way outside the fast paced multitasking superpeople place I lived in until the late 90’s…

  Roma Campbell wrote @

My Dear Lisa,
I have not been active in Rest Ministries until I recently got my computer fixed. I’m so sorry to learn that you are having so much physical trauma in your life.
I really appreciated your sincerity in sharing with us about all that has been happening to you. I know what it’s like to need help and not be able to ask for help. I also know what it’s like to ask for help and not get any help.
I am willing to try and learn ways to do something about these type of situations.
I know that many others really don’t believe me when I tell them that I have all of the disabilities that I do have. That is why Rest Ministries is so special because in your groups, we can find what we
so desperately need…..love, acceptance, understanding and prayers.
I hope you will be feeling much better soon. You will be in my prayers. I do so much appreciate all that you do to share God’s love.
In His Love,
Roma

  Beth Seagle wrote @

Lisa, a friend shared this link with me after I asked for prayer because I am lonely and feel forgotten. I also battle chronic illness and what you wrote I can relate to. The part about how it feels and wondering if anyone does understand. I didn’t know anyone else thought those things. Thank you. I have been told I take things to personally but it is personal when you reach out and no one is there. You can know in your head that you are loved and cared for but sometimes a visit, phone call, or card is also needed. Thank you for being so honest and open you helped me so much. You are in my prayers.
Love In Christ
Beth

  chantal du toit wrote @

Dear Lisa
I happened on this site. I am Jewish. I also have an invisible illness. Constant infections for five years. Constant pain. Often too weak to walk. In my religion we have an obligation to care for the sick, but people who look okay dont seem to qualify in my community any more than in your community! I have decided that G-d willing I should continue to recover I am perfectly suited to helping others in my community with similar illnesses, as are you in yours. We both know how much help and a willingness to listen is needed, and can provide that crucial support to others. I wish you well Lisa.


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