Living with chronic illness

The past week has been a very interesting one in terms of reflecting on all that is involved in living with a chronic illness.

You have to deal with the physical problems.
You have to deal with the emotional feelings.
You have to deal with the existential questions.

You are invisible. You look healthy. Nobody knows anything unless you tell them. Therefore you have to ask if you want to talk, if you want sympathy, if you want support. You always have to ask. And you have to ask over and over again, because people don't "remember" from week to week that you are ill. And when you remind them, then you are perceived to be whining, to be negative. Sometimes it's easier just to be silent. And that is very lonely.

I made an appointment to talk to Sarah on Wednesday. It seemed important, as a support person, for her to know something of my "story" -- of the WHOLE picture, not just the here and now. On Tuesday, I got a call at 9:30 am to sub for Susan at the library. I was deep into my "inner" process in preparation for the next day. And I had planned to catch up on laundry and grocery shopping. And I was tired. So I felt very torn. I wanted to help out. I needed the hours and the income. But I found myself paralyzed with indecision, and when the tears started, I had to say no. I NEEDED the time off, more than I needed an extra $125. I thought, wow I MUST be ill then.

I took laundry over to my friend Darlene's house that afternoon. Darlene has diabetes and other health issues. She, too, KNOWS what living with chronic illness is all about. It felt so good to talk and share our experiences, and our fears, and hopes, and frustrations. She understood in a way that healthy people cannot. That is priceless.

I felt good about my talk with Sarah. Maybe I felt it gave the situation some meaning to be able to help someone in the pastoring profession to gather a little more insight into how to minister to chronic illness. In fact she shared that someone has asked her to preach a sermon on chronic illness, and asked if I could suggest any resources. I said I could WRITE that sermon! And it might be a good exercise to do so. I was entirely serious. I also recommended a book that had given me some insights into the grieving process that goes along with all the life changes one is forced to make -- Ambiguous Loss : Learning to Live with Unresolved Grief by Pauline Boss. What do you do with all the anger, when your choices are either getting angry at yourself or getting angry at God? Both are pointless. So the anger sits there with nowhere to go.

Sarah asked me why it was so important to have a "reason" for the circumstances of one's life. It occured to me later, that people who struggle with ambiguous loss, seek by any means possible to control the situation. Having a "reason" gives you a feeling of empowerment -- you aren't just a victim. I think anyone who suffers wants to know that it has a purpose. And so the constant soul searching. The trick is, at some point, to let go of needing to know. To be content that it HAS a purpose, without needing to know what, exactly, that is. But I am not one who lets go of the seeking that easily. Even the seeking can bestow its own purpose, and give life some grounding.

I've started thinking about the need for a chronic illness support group at Mayflower. Maybe that's just another way to give meaning to all this, nevertheless, the inner urge is there. I had talked about this some years ago with our previous pastors. But I had too much healing of my own to do then. This time, I think I have the energy to put into it. I think I would like to learn how to facilitate a support group. I know there are training programs out there. I know that I would have support and assistance from Darlene and others. Mayflower has talked about developing a "wellness" center as part of our ministry. Right now that is taking the form of Tai Chi classes, and adult education programs on various health topics. But there is no support group. My own need to talk, to share, to be understood, to be VISIBLE right now, makes the need seem obvious to me. But I will think about this more, to be sure that I have the energy to follow through, and that it isn't just a passing interest, before I approach one of the pastors.

In the meantime, I am simply doing everything I can to love myself and take care of myself. I spent several hours after our meeting on Wednesday playing the piano in the sanctuary. Since getting my piano from my folks I haven't done that much. But it felt good to be in that space, a little more isolated and "protected" than playing at home. But not really isolated. I noted several times, people sitting on the bench outside the sanctuary, listening. I was glad to be sharing, even though I felt woefully rusty.

On Thursday evening I asked my online friend, Kathryn, who has gotten some good "information" on health issues at our Tuesday night meditation group, to see what she could get on the colitis. She got the information from a guide (hers or mine?) called Hamiel. Most of it just confirmed what I have already discovered to be good foods through trial and error. But one thing new was suggested : marigolds, or calendula. I stopped at Whole Foods on the way home and got both a calendula tincture and several ounces of dried flowers to make my own infusion, which I did this afternoon. I am drinking a tablespoon or so every hour. It certainly won't hurt to try it. Far more benign than the hydrocortisone enemas, which Hamiel suggested alternating with the Rowasa. I am too sensitive to it to use it every day, which is the recommended treatment. Even the Rowasa, he said, would be better 3 days on, 1 day off. So I will try that too.

Tomorrow the choir is singing both services at church. It is our annual All Saints music service where we honor and remember those who have died in the past year. Lots of good music. The only problem is I cannot predict what will happen. Normally it takes at least an hour back and forth to the bathroom in the morning. It's usually okay by 10am and I can then leave for work or whatever. But tomorrow I have to be at church at 7:45. I can control it somewhat by not eating after 7pm tonight, and not having my morning tea until after the first service. Nevertheless it is quite possible that I will have to leave the service at some point, and/or spend the entire period between services in the bathroom. That isn't really the kind of visibility I want to have. But we'll see how it goes. I want to sing. Maybe the calendula will make a difference already by then.