Being Here Now

This is a long one. So bear with me.  Recently, a friend of mine shared an article published on The Mighty about how to answer the question "how are you?" when the normal two word response "I'm fine" is not enough. It encouraged the chronically ill community to answer instead with "I'm here". Implying that our small accomplishments are visible and worth celebrating - showing up, being present despite everything else that feels like life is falling apart. You can read more about that here.

That article came in first in a series of thoughtful messages from people in my life (that don't know each other) that shared articles they thought I should read. And you know what? All of them had to do with community, relationships, and chronic illness. One friend sent me this article published by Christianity Today about what it is like living with a chronic illness in the church. A friend shared with me this blog post she wrote about the faith it takes to not be healed, even when that is the expectation. And a family member shared this article  published by Huffington Post about the dangers of invisible illness and community blindness.

Why are all these important to me right now? I know I have shared openly on my blog before about the joys and sorrows of living a life as a young artist managing an incurable disease. I've written about the ways community has supported me and amazed me, especially the way technology has provided crucial access and support for rare diseases. I am an active member of the MG community, much of which is online based. I am so appreciative of those friendships.

What I haven't written that much about is community disappointment and despair. Because I am a harmony-seeking idealist. I don't want to be a pessimist.

You may be asking yourself what a 25 year old painter who works from home knows about community. It's actually been a recurring theme in my life. It started 10 years ago when I got involved with a long term church partnership. I spent part of my summer vacations volunteering my time with the church and Young Life on Standing Rock Reservation. That partnership was community based and community focused. The last two of those summers I lived on staff in an intentional community of college leaders who ran the camp for the full summer. Shortly after I returned home from my last summer on the reservation, I began an honors program through my college. 16 of us took 2 seminar classes on work and vocation and lived in an intentional community together (without a dishwasher!) for a year.

What I have learned over the years, especially as I have gotten older, is that even the best and most well intentioned communities can fail those in need. We all know this, but often times have a hard time admitting it. We are fallible.


 'A lifestyle study of people with joint inflammation described loneliness as “the distressing feeling that accompanies the perception that one’s social needs are not being met by the quantity or especially the quality of one’s social relationships.” How can my husband, family, and friends meet my needs when my symptoms are “unpredictable, unexplainable, and unresolving”? When do you send flowers or bring a casserole to someone who’s going to be sick her whole life? This dilemma brings another burden to the chronically ill: We are the ones responsible for communicating our pain, exhausting as it may be. We can’t get our physical and emotional needs met if we fail to make them visible to others.' - Katie Jo Ramsey, Christianity Today

When do you send flowers to someone who has been sick their whole life?

The Huffington Post's article tell us that 96% of chronic illnesses are invisible. The real life implication of that is many of us in the chronic illness community have to fight to be believed in communities outside of our "disease friends". We have to continually prove that our illnesses are real, that they are debilitating, and that we are not fakers or have conversion disorders (which is a fancy term for physical manifestations of stress with no medical cause). Over the last 15 years I have had people accuse me of faking, refuse to acknowledge MG as a medical diagnosis, and tell me to be grateful that my medical issues aren't as bad as x, y, or z.

In her blog post on faith and healing, Vickie tell us about the common sentiment among Christian circles - "have enough faith and you will be healed". I've faced that as well. I need to pray more, have more faith, admit the sins that have brought this disease upon me. All things that are well intentioned, but refuse consider that sometimes being healed is not part of the plan, and never was. I am fighting an incurable disease. Pray for me, pray with me, but not with the expectation that I have to be healed for it to be worthwhile.

You may be putting together what has been on my heart, and what feels like a dilemma. The burden of proof is on us - those of us who are bearing the burden of pain, fatigue, invisible illness. We have to make our needs visible to others. And yet, we also have to navigate the community blindness to the uniqueness of our situation. Chronically ill people don't fit the categorical mold of "the sick" we are called to serve because most of the time, we will never be healed.

So we live with that weight of external expectation. Some turn inward and stop reaching out. Some become discouraged, frustrated, or jaded. Their community doesn't come around or their check-ins, whether in person or by phone, become infrequent and slowly taper off all together. They start to doubt their worth and contribution to the community. And they feel that the community will not or cannot meet their needs.

There is a passage I love in Anne Lammott's book "Help, Thanks, Wow".

I have seen many people survive unsurvivable losses, and seen them experience happiness again. How is that possible?

Love flowed to them from their closest people, and from their community, surrounded them, sat with them, held them, fed them, swept their floors. Time passed. In most cases, their pain evolved slowly into help for others. The great Bengali poet Rabindranath Tagore wrote, "I slept and dreamt that life was joy. / I awoke and saw that life was service. / I acted and behold, service was joy."

There is so much in her words that I agree with and make my heart sing with joy. And yet at the same time, my heart breaks with frustration and sadness. For many people suffering and enduring life with chronic illness, their pain and grief is never recognized by their community. They aren't surrounded, or held, or fed, or have their floors swept. They haven't had a proper grieving - grieving the loss of their health, their former life, perhaps their job or their relationship - and it leaves a void. It leaves a nagging sense that their pain or their grief or their suffering is somehow not valid or worth sharing in the suffering. Friends, that is just not true.

I share all this to say be here now. Show up. Don't rely on Facebook updates to know how your friend or family member who is in pain or suffering is doing. Call them. If there is someone in your community of worship who you know is suffering from a chronic illness, make sure their name is always on the prayer list for  dealing with the day to day, acceptance, peace, and comfort. Let them know when you are stopping by the grocery store in case they need something. Bring tea over and watch Netflix for an afternoon. Let them become visible. It is worth it. I promise.