Winter Weary

For many of us, winter brings a desire to slow down, reflect, and heal in the comfort of warm, peaceful settings protected from the elements and the hustle and bustle of the holidays. But winter also brings low moods in response to decreased daylight, the stress some of us feel around holidays and family, and a myriad of seasonal viruses. I went into November eager to experience winter without the impending doom of college finals for the first time in five years. Unfortunately, reality could not match my dreams of cozy hours spent reading as the rain pounded on my window, or of bright and cheery adventures amongst the lights of downtown, or gliding around an ice skating rink with friends.

Instead, my immuno-compromised body fell victim to at least four viruses, the low daylight sent my mood plummeting, and the rain and cold triggered my fibromyalgia and chronic fatigue so that I experienced even greater pain and fatigue than usual. The good days were few and far between, and many days I didn’t even have energy to read, let alone plan and embark on wintery adventures. Although it’s been almost two years since my initial diagnosis, seasons like this are still hugely discouraging. The double-winter of my physical and mental health is inescapable. Holiday parties mean small-talk with strangers and relatives that reawaken my fears that my life is going nowhere and that I will always be trapped in this moment in time by my illness. January brings with it the expectation of newness, inspiration, and determination to accomplish important and fulfilling things, and I feel caught in the middle of my desire to grow and my physical inability to do many of the things I long to experience. Changes in the lives of people around me–new jobs, graduations, engagements, births, etc.–make me feel like I will be left behind as everyone else moves forward and I just keep surviving.  

Amidst the heightened grief, anxiety, and isolation of this season of life, I am trying to let the slowness and hiddenness of winter teach me. I am trying to learn to invest in simple, sustained growth that no one will ever applaud or even see. I am trying to learn to allow myself to be passionate about achievable dreams and to work on them steadily, even if I must work at what is sometimes a gruelingly slow pace. I am trying to learn to be compassionate towards myself when I cannot see where movement or change is happening within me. I am trying to learn that sometimes breathing and being is enough. And I am trying to learn to trust that I can still find a purpose that gives me life meaning and fits within the limitations my illness places on me. I can’t say for certain that the dark and cold of this winter will inevitably give way to the light and warmth of spring, there is too much I don’t know to make that prediction. Some days all I know is that I’m surviving, but I have to believe that in the dark and the cold hope is surviving with me.


September Feels Like

My ongoing journey with chronic illness has been particularly painful and difficult lately. It has become clear that I’m not able to work even a part time job at this point in time, I don’t not know when or if that will ever change, which is very upsetting. Besides short daily walks, I rarely make it out of the house, which is depressing and isolating.

I’m trying to find community and connection with others, but it’s difficult for me to speak authentically about how I’m feeling and the toll that illness is taking on my body, mind, and spirit, and I worry that my identity will be reduced to “the sick friend” in the eyes of others. I am learning that while I exceed at self-expression, actual emotional vulnerability is something I haven’t figured out how to bring into many of my friendships. I often feel a need to offer some hopeful resolution about what I’m going through because it’s painful for myself and others to admit that there isn’t one, and that what none of this make sense right. The way other people’s faces fall when I tell them I’ve been in pain and exhausted for days on end, reflects back a small portion of my own disappointment and grief that is still overwhelming to face. However, my desire to protect other people from that grief is preventing me from being vulnerable in my relationships.

Sometimes, when I feel that words aren’t enough to express myself, or when I realize that I’m tempted to use words as a wall rather than a bridge, I find that communicating visually and creatively allows me to show rather than tell, leaving in all the uncertainties and things I haven’t defined yet.

So instead of muddling on and trying to make sense of the senselessness of this season, I’m taking a stab at showing you, without conclusions and resolutions, how September has felt.







September feels like uncertainty and immobility.
I don’t know where I’m going, or if I’m going anywhere.
I am not sure what is left of me when illness takes up so much of my life.
Sometimes I feel like I am disappearing.

How to Support Your Sick and Disabled Friends Beyond Prayers for Healing: An Open Letter to My Christian Friends.

 I’ve been diagnosed with fibromyalgia and chronic fatigue for almost a year and a half. I deal with widespread chronic pain, perpetual exhaustion, executive dysfunction, and a handful of other delightful symptoms. I have good days where I can function reasonably well and present as able-bodied and healthy, and I have bad days where I can’t get out of bed and my symptoms render me thoroughly disabled. Usually, I fall somewhere in the middle of these two extremes. My physical and mental functioning is limited, unpredictable, and impacted by stress, emotions, weather, and my immediate environment. It’s frustrating to deal with, but I am trying to embrace the slow process of learning to live more slowly, disregard American societal expectations of productivity and self sufficiency, and focus my energy on what really matters to me.

At least once or twice a week, a well-meaning friend or relative tells me that they are praying for my body to be healed of fibromyalgia and chronic fatigue. I fully appreciate that these assurances come from a very real desire to encourage, and to see a loved one relieved from pain and limitations. However, while I’m living with pain, fatigue, limitations, and grief, constantly being told that my loved ones are hoping for a miracle to befall me can feel like a lot of pressure, and even a denial of or a detachment from my reality. The truth is, I am very likely to deal with my illness in some way, shape, or form for the rest of my life. Some people with chronic illnesses are eventually able to find medications, diets, routines, exercise, or supplements that help them manage their symptoms, sometimes well enough that they can do the same things non-ill, able-bodied people can do most of the time. Some people with chronic illnesses find that they develop new conditions and disabilities as they age, or they have progressive illnesses that shift and gain or change symptoms as time goes on. Many of us fall somewhere in the middle of this spectrum, we learn to manage our symptoms, which can be a long process, and we will likely have to keep managing them throughout our lives. That said, it is rare for people to make complete recoveries, so knowing that people I love are praying that I will be one of those few doesn’t necessarily feel good for several reasons:

  1. I feel pressured to seem more healthy because you’ve put faith in my healing. I’m still working out what I believe about God and suffering in light of all of this, so I don’t always feel equipped to help you understand my lack of healing or to comfort you about the chronic nature of my illness.
  2. I feel isolated by your choice to focus on my hypothetical future healing instead of choosing to be present to my pain and my life as it is now. It can feel like people are waiting for me to get well so we can have fun again, or so they can feel satisfied that I’m doing well and they don’t have to worry about me.
  3. It feels like you’re in denial about the chronic part of my chronic illness. It’s a lot of ongoing emotional work for me to make peace with the fact that I will be managing symptoms for the rest of my life (even though I do have hope it will get better than it is now). I am still grieving the loss of the life I hoped I’d have, and I welcome support and company in that process, but it only makes it harder when other people are so focused on their desire to see me ‘fixed’ that they can’t come alongside me and love me in my grief.
  4. These prayers for healing are often accompanied by the assertion that once healed I will be able to live out my purpose. This makes me uncomfortable for two main reasons. First, because implies that my life will not have purpose and meaning while I am disabled, which just isn’t true. Second, it makes me feel like you believe I deserve healing more than any of the other millions of people with illnesses and disabilities on the planet. Most people don’t become miraculously healed, so why should I be the exception? I have a great deal of privilege in other areas of my life, I have a supportive family, I am reasonably financially stable for a recent college graduate, I have enough education that I don’t have to find work that demands painful physical labor, etc. Yes, it’s still really difficult being chronically ill. But if someone gets a miracle, it shouldn’t be me.  
  5. It upholds cultural standards of productivity and health as determinants of worth. While I am often frustrated by my chronic pain and fatigue, I do believe I can have a rich, fulfilling life while being disabled. So, it can feel like your wish for me to be healed denies the potential value of my future with my illness, like my life would be worth more if I was healthy, which is an incredibly harmful narrative that is unfortunately pervasive in American culture.

Of course, people who don’t pray or believe in miracles do other things that evoke similar emotions: like suggesting expensive (medically dubious) miracle cures, or assuming that treatments are one size fits all. However, I have found it especially challenging to communicate with my religious friends about how they can love me through this, while still respecting their earnest faith and desire for my well-being. Now that I’ve communicated about how prayers for healing don’t comfort or support me, here are some ways that Christian anyone who wants to can love me and their other disabled/chronically ill friends, family, and neighbors:

  1. If praying is important to you, pray for me to have more good days than bad days this week, or pray for my community, family, and doctors to know how to support and care for me, whether or not I can be cured. I’d also suggest asking what I (or your neighbor/friend/family member) would like prayer for.
  2. Educate yourself a little about my illness/disability if you can, and do any emotional processing about it that you need to do with someone besides me. Having to teach and then comfort someone else about my illness is something that happens more often than you might expect. I don’t mind teaching people about my illness too much, but sometimes I don’t have the energy. It’s really hard for me to comfort someone else about my pain and fatigue. Please don’t make me do that. I know you want to show sympathy, but don’t make me reassure you that I’m okay, I’m dealing with a lot and it makes me feel like I can’t be honest with you about how I’m doing. (For more on this idea look up Circle of Grief/Ring Theory.)
  3. Take a little time to think about how you can come alongside me in my process and in my life as it is now. For many ill and disabled folks isolation and loneliness are huge frustrations, you can help with that by setting aside time for us, asking how we’re doing or if we want to process how we’re feeling, and do the work to sit with us wherever we’re at emotionally and physically without trying to fix us. Sometimes you can’t help, but you can always love.
  4. Remember that while my illness/disability impacts my whole life, I’m still a full person with inner and outer lives, who has valuable thoughts and ideas. Ask me what I’ve been thinking about, listening to, reading, etc. Sometimes your disabled friends’ outer lives are limited and we can’t work or get out much, so asking about our inner lives can be a good way to reassure us that that our lives are valuable, even when they aren’t materially productive.
  5. Think of us when you vote on issues that impact us. A major reason that life for people with illnesses and disabilities is so challenging is that American society largely isn’t inclusive or accessible to people who are not able-bodied. Advocating for inclusion and accessibility in our infrastructure, institutions, and cultural values is a huge way to support your disabled friends, family, and neighbors in living fulfilling lives with our disabilities (not in spite of them).
  6. Help us come up with fun ways to spend time with you within our limitations. Personally, I often worry that I’m not fun anymore, especially in particularly bad seasons of pain and fatigue. So I appreciate it anytime someone comes alongside me in the process of finding new ways to have fun together!
  7. Ask people what they need and how you can best support them. This list is obviously not exhaustive, everyone’s experiences of illness and disability are unique to them, so ask your loved ones how you can support them or what they need. It can be hard for me to ask people to do things for or with me that support me in my illness because I often worry about being a burden, but when people ask what I need and then offer support that meets those needs, I feel cared for and understood.

Dealing with grief and suffering, whether our own or someone else’s, isn’t something we’re very comfortable with in American culture. Many people have trouble connecting with others in grief, and don’t know what to say or do to offer support. So, well-meaning people fall back on generic platitudes, which aren’t necessarily wrong, but which can feel deeply isolating and simplistic when I’m living with the difficult reality of constant pain. Instead of relying only on hope, or prayer, or waiting-and-seeing to take care of your sick and disabled loved-ones, consider how you might couple your hopes and prayers for us with substantial action to make our lives a little better, easier, or brighter. Sometimes this action is as simple as being present and reminding your ill/disabled neighbors that the pain we deal with doesn’t detract from our personality, dignity, and value.

More writing I’ve done about illness, pain, and grief can be found here, here, and here.

Tattoos and the Art of Process

This February and March mark the first anniversary of my chronic illness diagnosis (the anniversary spans a couple months because as some of you might know the diagnosis process for many chronic illnesses is long and weird–arguably I haven’t actually completed it yet). The onset of my illness and the many subsequent life adjustments that I’ve undergone, necessarily made 2016 a long, difficult, seminal chapter of my life. As the year drew to a close I began to reflect on what I had learned from it, how it had shaped me, and what I wanted to be different going forward. These reflections lead me to getting my second tattoo this January.

Chronic illness has challenged me to let go of my perfectionism in new ways. It’s difficult for me to accept that I am worthy of love whether or not I’m perfect, but as I struggled to process what being chronically ill meant about my abilities and my belovedness I was struck by the realization that nothing on earth that I love is perfect. The people who I love and think are amazing and beautiful are not perfect. The natural things I love–flowers, trees, the ocean–aren’t aesthetically or symmetrically, but I still think they’re stunning evidence that God is an artist and that earthly things contain the divine. So, why would the logic be any different in reference to myself? Maybe this line of thinking is obvious to many of you, but for me it was a new framework for gently addressing the flawed logic of my perfectionism. I wanted to give myself a reminder of this framework, and extend a symbolic peace offering to my body, so I settled on a tattoo that I felt would accomplish both.

Both of my tattoos have been symbols of process and reminders of the truest things about me. I find that having physical reminders of these truths can help me to embrace them, assisting me in the process of embracing myself, my purpose, and the world around me. The roses I got on my hip this January are a reminder to include myself and my body when I think about the beautiful divine imperfection of creation. The stars on my arm that I got three years ago serve to remind me that when life is dark there is light inside of me, in my relationship with my family members, and in my relationship with God. Art is amazing because of how it not only reminds us of what is true and visceral in life, but also because of how it changes our perspectives and our processes of transition and grief and creates space for the divine to manifest in our lives. For me, tattoos have allowed me to carry a little of that power with me.


Pain and Isolation

Learning how to cope with chronic illness has been filled with challenges. Since my fibromyalgia and chronic fatigue diagnoses are only a few months old, I’m still in the beginning stages of figuring out how my body works, how to live within my new limitations, and how to manage and improve my pain and fatigue levels. I’m also still in the midst of processing all of the emotions, thoughts, and anxieties that come with this transition.

So far, this whole process has been completely unexpected, but one of the things that has struck me the most is how isolating chronic pain is. I knew that emotional pain could be lonely like that, but I hadn’t considered that consistent physical pain could have a similar effect. Now I’ll be honest, I’ve realized I’m not as good at being vulnerable as I thought I was, but even when I’ve tried really hard to be truthful with the people closest to me, I’ve discovered that it’s incredibly difficult to sufficiently explain what I’m going through. I think this is partly due to the fact that no one outside of my family sees me at my worst. But I also think that pain is inherently isolating. No matter how empathic and kind someone is, they can’t feel your pain with you. Which kind of sucks. Not that I wish my pain on anyone else, but isolation is probably my very least favorite feeling in the universe.

Tonight I spent about four hours laying in bed, feeling sick from pain. For almost two of those hours the pain was so intense that I couldn’t even watch Netflix, so I just lay in bed and cried. So I thought now might be a good time to try to write about my pain (because it’s still fresh or something? I don’t know, I might just be tired and making weird choices). To preface this let me first say that my pain levels vary a lot. To be honest, I am not sure if there are ever times where I’m both conscious and 100% pain-free anymore. I think my threshold for what registers as pain may simply have gotten higher over the pain few months. Second, since chronic pain is such a difficult thing to describe I’m going to try to use sound as a metaphor to talk about my varying pain levels, since most people I know can relate to what it’s like to notice sound.

Level 4: rock concert.
On a really bad day, when I’m having a flare, or worst of the worst, having a flare combined with sickness or pms, the pain is so loud I can’t concentrate. It’s like being at a loud concert with a friend, and they’re trying to tell you something, but even when they put their mouth two inches from your ear and yell you can just barely understand them. Except in this metaphor my friend is my own thoughts. When the pain is really loud I can barely think rationally, my mind can scream and panic, but it’s hard for me to have a calm conversation with it over all the noise. My legs will feel like I have walked 20 miles that day; they burn, they cramp, they twitch. It feels like my legs are sick, even though I’m technically healthy. My back will feel like someone has beaten it with a metal bat or reached into my skin and pinched my nerves and muscles until they’re bruised. My hips will feel like what I imagine your hips feel like after you give birth, like bones and muscles have been wrenched apart. Add to this oversensitivity to temperature, texture, light, and sound–and maybe a headache and/or nausea– and you’ve got a very bad day.

Level 3: secondhand tunes.
At times when my pain is noticeable, but I can still carry a conversation or even get a little work done the pain is like when someone is listening to music just a little too loud while you’re trying to read in the same room. It’s distracting and annoying, but you can manage for a while before you either have to leave the room or ask them to turn down the volume. Except that with pain neither of these is an option, so after a while I have to just stop trying to do whatever it is I am doing and instead watch Jim and Pam’s wedding episode of The Office on Netflix for the 527th time.

Level 2: ambiance.
Much of the time my pain is kind of like when you go out to eat at a restaurant that plays background music in the dining area (sometimes just a bit louder than you’d prefer). You can still concentrate on your meal and the conversations you’re having with your friends or family for the most part, but every few minutes the music crescendos or a lyric stands out and it distracts you for a moment. You might lose your train of thought for a moment, but soon enough you can reenter the conversation and the music once again ceases to be the center of your attention. However you still know it’s there, even if you’re not focusing on it. On these days I can do 3-4 hours of work, school, or other not highly physical activity before I need to rest and do something where I can sit comfortably and don’t need to concentrate too hard.

Level 1: fly on the wall.
On a good day my pain is like when a fly gets trapped in my room after I’ve left the windows open in the summer. Mostly there’s a faint buzzing that I can hear, but it doesn’t really bother me. However, every so often the fly will zoom right past my ear, or bump up against the window, which causes me short moments of irritation and annoyance. On these days I have to pay very closel attention to my body. I can do 4 hours of work or school AND I can do some light exercise AND I can have meaningful interactions with friends or family. Which is exciting! On these days I feel allllmost normal-ish. If people ask how I’m doing I’m likely to say, “I mostly just feel kinda tired.” Which is a vast improvement from a bad, rock concert volume pain day. But I have to be careful that my excitement over being able to function more normally doesn’t cause me to overexert myself, because that could quickly land me back in the bad day zone.

Obviously, this explanation doesn’t cover the whole spectrum of my experience. For one thing, there are degrees between each of the levels I’ve described. Plus, my levels might change as I learn to what works for me and what doesn’t. But this is where I’m at right now, and what I’ve experienced over the past 3 months. I’m still struggling to understand what I’m going through and to find helpful ways for me to think about it. I know that my worst days are some people’s good days, but I also know that my good days are still harder than my normal days used to be. I’m working hard to remind myself that I don’t have to be grateful that things aren’t worse. I’m allowed to mourn my loss of energy and comfort, because it really sucks to lose those things. And I’m allowed to still be in process, but I want to be taking steps to help myself in whatever ways I can. Which includes combating isolation with vulnerability, and hoping that the words I’ve chosen in writing this will be on my side in the fight to connect with people through the pain.



Ignited Lent Action

I’ve been thinking a lot about sustainability lately. Not only living sustainably in relationship with the Earth and the other creatures on the planet, but living in a way that is sustainable for my soul. For this reason, my co-editor and I decided to focus on sustainability as our March theme and in our Lent Action for Ignited Magazine (you can read more about those on our website). I was excited about thinking more deeply about ways to practice both global and soul sustainability, and to experiment with practices over the next 40 days. I thought maybe I’d try going vegetarian, and that I’d set aside time in my week for creativity, or going on an outdoor adventure with a friend, or something else that feeds my soul. But life, it seems, had other ideas and decided to throw me a curve ball.

For the past two weeks, the fatigue I have struggled with for months (maybe even for almost a year) has intensified to the point that normal, everyday activities make me feel worn out. My muscles ache, burn, and feel tense all the time, I wake up so tired that I can’t focus in class or remember the readings, my neck and back hurt almost constantly… today I slept for 14 hours and still don’t feel fully rested. Add to that list a particularly heavy course load and you’ve got a Hailey whose life has been thrown a bit off kilter recently.

My instinct when things spin out of my control is to try harder. Work harder in school, do more every day so that it all fits, give up all the “non-essentials” (which usually are actually pretty essential, I just don’t get graded on them). I have been trying so hard through my foggy-brainedness of the last couple days to think of a meaningful Lenten practice centered around sustainability. I decided to give up all non-fair-trade cocoa products as my global sustainability practice–something I have been wanting to do for a while– but couldn’t think of a good personal sustainability practice. It just felt like I didn’t have time or energy to do the practices I thought would be meaningful.


Today, after 14 hours of sleep, on the way to a last-minute doctor appointment, I realized that right now, the most important way for me to sustain myself spiritually, emotionally, and physically is to take care of my health. Part of that is using my time and energy to take care of my body and my emotions, instead of pouring all myself entirely into staying on top of my course load. It also means recognizing that I don’t HAVE to be able to do it all. Depending on the outcome of the blood tests I am getting done tomorrow, it may be in my best interest to withdraw from a class, so that I can deal with my health problems without added stress from being overwhelmed by schoolwork. Finally, it means voicing my needs to my friends and family. I tend to get very lonely when I am tired and overwhelmed, but I also tend to get worse at asking for the support I need from people. In my exhaustion I just hope they’ll notice what I am going through and know what to do, but this only leads to frustration when people, inevitably, can’t read my mind. So those are the practices I am focusing on to cultivate some personal sustainability. I will put time and energy into cultivating rhythms that support my physical well-being (including a stricter sleep schedule and eating 3 meals a day). I will be gentle with myself and allow myself to only take on what I can handle without feeling overwhelmed. And I will reach out to people and ask for the support that I need.

To be honest, I’d rather be able to adopt practices that seem more interesting and unique, but I also need to recognize that self-care, particularly in times of stress, is something that I need to work on in order to sustain myself and be able to love others well.


The Heartbreaking Beauty of Shared Burden

I’ve been trying to marvel at humans a little more lately. There is so much in the world to make me despair of truth and goodness. Maybe becoming more aware of the intense pain and brokenness of humankind is a side-effect of growing up, but it’s also incredibly heavy and discouraging. When it all feels like too much, I remind myself of this quote by our dear friend, Mr. Rogers:

“My mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of ‘disaster,’ I remember my mother’s words, and I am always comforted by realizing that there are still so many helpers-so many caring people in this world.”

I am not always good at looking for the helpers. I can become incredibly overwhelmed by pain and suffering and fear. And sometimes the emotional impact of that feels so isolating that I forget that I am not alone in feeling it. However, lately I have been working harder than ever to look deeper into the pain I see in the world and in the lives of those around me, and to see within it the intense love and selflessness that I believe must characterize humans just as much as our brokenness.

In the past couple of weeks I have had the honor to witness moments of this love and to watch people I know mourn together, care for others together, and beautifully share the burdens of being human together. The pain and love I see and feel in those moments feel so intrinsically linked to the heart of humanity and to the heart of God. Despite the hurt and frustration that this shared mourning results from, reflecting upon the love that inspires people to share in the heaviest parts of being with one another fills me with appreciation and awe for what we are capable of.

I spend a lot of time trying to figure out what I will do in life to add to be beauty of the world and to detract from some of the pain, and while I want to continue to do that, I am also trying to focus of becoming someone who simply lives beautifully and loves the people in her life deeply and without restraint, no matter what I am doing. The presence and connection we foster with people in our lives is so beautiful, even if it feels small. The burden of being human is large, and I am trying to let the beauty of sharing that burden with others loom just as large in my heart.