Chronic Illness

Graduation Commemoration

Celebration in Trauma, Chronic Illness

I’ve put off writing about graduation. I’ve been thinking about it for a while—ever since it was on my radar that I would be able to complete graduation and complete it well.

My history with graduations is fraught, to say the least. In my senior year of high school everything came to a screeching halt one day, out of the blue. Though, now, looking back, I see the pile up that truly caused it. I’ve spent my entire education not just learning and trying to be a good girl in class, but also battling my sensory overload. I didn’t realize just how much a part of that history my sensory disfunction was until my therapist asked me a simple question one day along the lines of, “did the sights or sounds or smells at school bother you?” And I suddenly realized that I could still be hit with the memory of the smell of every school I’d ever walked into—particularly the cafeteria, which, of course, was the entrance to several of my schools. In that moment, I looked back and saw little me fighting for her life with no words to explain that overwhelm—just tears and screams.

I think I made it one month into my senior year of high school before I more or less dropped out. Perhaps fortunately—perhaps not, because of my sensory disfunction—I had learned to overachieve in most areas and I was plenty of credits ahead by that year to the point where I was simply missing one class to graduate. Though I could barely get out of bed most days and my anxiety was the highest I’ve ever experienced in my life, I made it through that last class. I had to do it in summer school, but I made it.

I walked with my classmates feeling like a complete failure and a fraud. It took me about fifteen years to even use the word “drop-out” or talk about my senior year without overwhelming grief hitting me. That graduation was nothing but a show. Little me in her good-girl façade, walking with the group so that she wouldn’t be picked out.

My undergrad graduation was different. This time instead of anxiety, chronic and acute illness took the stage. I walked 18 months or so after getting hit by a car as a pedestrian. I had a whole life planned out. I was so near graduation that summer and I knew exactly what I would do. I would have to push myself a little, yes, but if there was one thing I was able to do, it was push myself. I had just barely squeaked through high school with endometriosis and daily headaches keeping me in bed more often than school absences allowed for. I could work through anything.

But that accident took my short term memory. I would close a book and barely remember what page numbers I had read, much less the content. I was so dizzy at random intervals I was afraid I might not be able to make the short walk back to my home every day after class for 9 months. My daily headaches had become daily migraines and suddenly there were days when taking even a gentle step felt like my brain may explode. Yet again, I was trapped in a body I didn’t understand.

Recently, my massage therapist turned my world upside down when after speaking about my accident she asked, “did you emotionally process that trauma?” The answer, I thought was yes. Very quickly, however, I realized, of course I haven’t…

I lost the little stability I had in my traitorous-feeling body. And with that, surety in my graduation and future.

That summer I, also, connected with and starting dating my husband. In uncertainty, I found a home like I had never dared to hope I would find. But my graduation this time was merely a hurdle. Although I struggled to make it over, I was fortunate to have the support I did from family, friends, and professors and the ability to stretch out my time in order to finish. But the damage done to my body made it impossible to finish well. And just on the other side was another large event that took more of my time and was more celebrated than my graduation—my wedding. (I could write an entire page just on that, but I’ll digress.)

Ten years have passed, now. My body has been worked on and healed and had more damage through those years. I came to a place where I didn’t know if my body would even be able to walk across a stage. I cried myself to sleep countless nights in grief. Grief over what my body is now. Grief over what my body used to be able to do. Grief over loved ones lost. Grief over the major events that shifted the entire world while I tried to hold on long enough to finish this new degree. This new chance to finish well. And I did.

But I didn’t finish well because I let my good-little-girl façade hold or because I white-knuckled through pain and just got the grades. I finished well because for the first time in my life, I was kind to myself. Not always, because I’m still learning what a gentle inner-voice feels like, but more often than I’ve ever experienced.

When I was ten years old, I watched my dad walk and receive his master’s degree. I knew then and there, that there was nothing I wanted more—expect maybe a Ph.D. But part of my desire was so others would see me as something of value. So, after my undergrad, I waited. Until six years later, I felt like the Holy Spirit had done enough work in my soul for me to go to school for no one else but Him and me. I applied, to the one kind of school I had sworn in my undergrad I would never attend—seminary. And I was ecstatic.

Again, I had a path. But instead of undergrad-me, planning out every step, this path is illuminated one section at a time. I had learned how to walk with God in faith in little patches. Stepping to the edge of the first light and waiting with patience for the next to be lit up. The first step was this degree. Learning well, not just academically, but spiritually as well. Feeding my soul and learning to sit in the murk with God while sorting through our history as Christians and where our future may be.

And God was faithful to my faithfulness. The second semester of my degree, COVID hit. Everything shut down, except my class choices. The full world of seminary, originally hidden, opened up to me and I was able to change my degree to something I so desired—a master of arts in theology. Each new class felt like home. My mind and soul were at peace and overjoyed.

As I reflect back, there was a little gift hidden in this form of school for me—safety. My home has the sensory inputs I know and have curated. There was never a moment of class where my body was taut and overwhelmed because my senses were bombarded. I have never enjoyed school as much I did in this season—and I have always loved to learn.

This degree wasn’t any easier in may ways. Like each time before, something else took center stage—this time, it was grief. My second set of finals came at the same time that I was waiting frantically on texts to know whether or not family members would live or die. I nearly cried for two years after every time I felt a text notification. I still tense at them. I don’t think a phone’s vibration notification will ever feel the same. My third semester finished with residual trauma, but nothing new. Until the day after the New Year, when I got the most jarring phone call from my mother about yet another family member suffering.

Between my husband and myself, we’ve lost more people over the course of the last three years than I had in my life up until that point. At first, I felt the water close over my head in an all too familiar feeling. Depression pulled me down in the mire again and I struggled to pull free. The kindness of my professors and my husband’s unwavering care helped me through that second semester. The people in my life who have offered kind words and comfort kept me on the surface of my depression long enough to make it through.

The summer after my first year, I decided I needed some extra help. I started seeing an amazing therapist who helped me learn how to be gentle with myself. I learned to cradle the fragile parts of me and very carefully challenge the sharp parts. Slowly, I was able to hold myself well.

I began to notice my sensory triggers. And I cared for them. I noticed my body’s needs and rhythms. And I cared for them. I noticed the way it felt when I spoke harshly to myself, cruelly, even. And I cared for me. I tended to the little girl inside me who pushed herself down so that she wouldn’t be a burden. I propped her up and told her it was okay to lash out, but she didn’t have to anymore. The words were there and, when she was ready, I would hear her.

I spent four years, letting God and myself tend to my soul in a degree that can easily become all cerebral. In those four years, I was fortunate enough to turn outward and ask for the help I knew I needed. In those years my body lost and regained abilities and lost them again. As I walked on May 6th, in a city I had not been to before then, I purposely surrounded myself with the people who had cared for little me long before I did. I loved her well, even though she wasn’t ready to speak yet. I celebrated joyfully, even though the words weren’t formed yet. Despite what it may look like in this large grouping of letters, the words still aren’t formed, yet.

I am proud of my accomplishment and I am so very grateful for everything I learned in seminary over the past four years. I am grateful that I have been able to use it from day one doing what I truly believe God lead me to it for—leading and walking alongside others, especially in doubt and grief and heartache. I will continue to use it as God leads me, step by step and moment by moment, even if it takes years before I feel like I’ve produced something.

And, yet. And, yet, I’m not ready to shout from the rooftops that I’ve graduated. And, yet, I’m struggling to feel much of anything when I think about it exclusively. And, yet, the numbness may take a while to go away and it may or may not leave something in its place. Because the truth is, so much has happened in these four years, and I’ve decided that I’m walking with little me while she explores. And I won’t rush her. I’d much rather use that energy to explore with her and see where it leads.

Four Years.

Chronic Illness

Four years. Four years and one month. Four years and two months.

That’s how long I’ve been struggling in pain waiting for an answer. How long the answer took despite it being the original answer I suspected. And how long it will be until this pain is treated in surgery. Four years and two months feels like a long time for answers that don’t feel like an end, but yet another door to yet another limbo.

I expected to cry when I got the answer. I didn’t. I had cried over this being the possibility months before when I contemplated whether or not a wheelchair would be my most common mobility aid and all that means in a world that overlooks and dismisses difference too easily. A world that still looks at ability as value. A world where I had to grieve before I could accept what gave me freedom of movement again.

And yet, I think I’ve cried nearly every day since my surgery consult for so many reasons.

I’ve been blessed by a therapist who has held me like the empty egg I so often feel like. No internal support, just the fragile outside, tenuously held together. She has helped me refill that inside with answers about my body and my mind, strengthening and caring for that little girl that resides inside.

The medical answer, it turns out, mostly feels like a reminder of the fact that my body and my mind don’t see to be able to fit in the space they’ve been given. It took six months to be diagnosed the last time I could feel something in my body that couldn’t be medically measured. This time it took four years. My body and brain are a blessing—I feel deeply and I can tell quickly when something is wrong. But living in this body and with this brain has also brought almost constant trauma, particularly medically. My fragile, empty little egg has been crushed too many times.

I am beyond grateful for the team of medical professionals that seems to be building around me that see my fragility and see my knowledge of myself and listen. But even several answers haven’t been enough to erase thirty-two years of disbelief and dismissal.

And, so, when I should be celebrating—and genuinely desire to rejoice and celebrate—a big answer and a big step in potential recovery, I sit in grief and fear. Grief that yet again my body was trustworthy and not found to be so by the professional who I went to for help. Fear that this answer isn’t really the end. Too many answers have come before and have only been followed by new pains or issues.

When we consider medical diagnoses, too often we seem to regard them as an end. But to so many of us with persistent medical concerns, those answers are just one in a long line of answers we hope for and those outcomes are just a sporadic few in a long line of what we must maintain to keep our bodies going.

This isn’t an admonishment of either feeling—desire to celebrate or grief of what has been or what is. Instead, I hope this is a pillow for your fragile, empty egg. That you may hold the tension of the many, often warring emotions that may be held inside your shell—feeling like both the only thing keeping it from cracking apart and the threat that will cause it to crumble.

Although I’m but one person, may you be held by this other who feels all of the emotions that come with half a calendar filled with medical appointments and a half a calendar that can’t be filled. May you feel seen by this other who’s body and mind seem to betray and care for them. May you be able to sit, even virtually, with this other and feel known.

Even in this broken, fragile, constantly having to be put back together state, I pray—not loudly and boldly, but quietly, sobbing—God, may you heal me, but even if You don’t, I will still praise you. (Dan. 3:18) Because even in the immense amount of physical and emotional pain many of these things have brought me, He has always gently held my fragile-self, even when I had no strength to hold myself. He has been the soft pillow for my empty egg, from the very beginning. And because of that, I can hold on to the hope for joy while allowing the flow of the tears of grief that stem from the same answer.

This Strange New Place

Chronic Illness

I find myself in a strange new place. A place where I can’t take the least comfortable spot or help wherever I can in whatever way I can. A place where I have to think about myself and my own comfort far more than I ever wanted to. 

Pain is no stranger here. I have struggled with chronic pain and illness for most of my life. I’m used to fighting through extreme pain in order to get my work done. I’m used to squeezing every last ounce of strength out of myself before I collapse in my bed or on the couch.

But this pain is new. It’s taking away parts of me I didn’t know pain could take. It’s taking my ability to put others before myself. 

I adore serving. My favorite jobs have always been in customer service where I could serve others. I believe part of that came from my desire to push the pain away, even for a little while by focusing on others instead of myself. But I also love getting to impact people’s lives even in really tiny ways. Those moments that seem insignificant to us, but mean everything to someone else. 

But now part of my body is failing me, forcing me to care for myself, to save some energy for me. 

I hate feeling lazy. One of the hardest parts of chronic illness, especially invisible illnesses, is having to rest even when you really don’t want to. My body will need rest without warning, and it never seems to choose a convenient time. I’ve missed so much because my body just couldn’t muster the strength to make it through a day. But I had always been able to recover and return to my life, just the way it was.

A few months ago I sat in my friend’s backyard around a small fire. The fire pit was ringed with a couple different types of seats – an outdoor couch, plastic chairs, and a few pieces of birch placed as stools. We were the first to arrive and as I sat down on the couch I couldn’t help but stare at those pieces of birch. Not that long ago, although my back wouldn’t have been a fan, I would have chosen that spot. But these days I can barely sit in bed without still experiencing pain. I nearly burst into tears right there. Longing for the days that I could give up my comfortable space for someone who may need it more. 

But now I’m that someone. And in this strange new place I’m learning that it’s okay. It’s okay for me to not have the strength to do the things I so desperately want to do, because there are new things I can enjoy. It’s okay for me to have to rely on others and ask for help, because there are people who truly love me and want to help me. It’s okay to be served instead of being served. And it’s okay to trust God even in the times it feels like I’m walking through thick fog, because He already knows the way. 

My comfort through this last year has been that God knows my body precisely. He doesn’t have to guess what is happening or why it’s happening. And I know that my timing is not His timing, because we’ve been down this road already. I suffered with headaches and migraines for 10 years before I got an answer and some relief. I suffered through excruciating menstrual pain for 16 years before I had an answer. I suffered through chronic anxiety and depression for 15 years before I had an answer. 

But through that pain, I have only been brought closer to God. The truth is that answers are nice, but my God already has those. And He tenderly knit my body together 30 years ago. None of what has happened has surprised Him and none of what will happen will surprise Him. So I continue to cling to Him as I relearn how to care for my body, and let Him lead me through this strange new place.