Sharing my mourning journey as my family learns to live a new normal after the death of my 19 y.o. son in an auto accident on 10/12/08.

Posts tagged ‘lupus’

To Be A Sweet Offering

I’ve been reading a lot of poetry lately. The truth is I always read poetry.  For me it is a form of meditation. Yesterday I read for the first time the poem, “Self-Portrait” by David Whyte. One stanza leapt out at me:

I want to know if you are prepared to live in the world with its harsh need to change you. If you can look back with firm eyes saying this is where I stand.

The last few weeks have been challenging for me and my family. The challenge and the pain got an unexpected new dose yesterday with some very troubling family news. I ask for your prayers.

I heard a song last night called, “Encourage Yourself.” One of the lines of the song is, ‎”Sometimes you have to speak victory during the test.”

Mark and I talked last night about the bombardment of pain and bad news that has come our way in rapid fashion. I told him, “Weariness is setting in. I wake up every night at least once where my thought is Jordan is dead and I have to learn to keep going. I’m working hard to live life with a positive outlook.”

“I know, we both are. We’ll make it. We have each other, always.”

“Things are happening so fast. We don’t get a chance to catch our breath, to process what’s happening before something else happens. I don’t want to live my life always on guard. I want to live life with a positive outlook. Life can’t feel like a chore, something to be endured.”

Even in the midst of worry and sorrow there is a piece of my heart that tugs at my soul saying, “Hold on, Spring is coming.” It beckons me but in a voice oh so faint. I’m holding on, wanting to be a sweet offering to my family, friends, the universe and me.

Here is an excerpt from, \”Let It Be Me\,” a post I wrote back in 2010.

I work so hard to stay sane and not slip too far into darkness and depression. Jordan’s life held virtue, humor, caring and so much light. Each day I make a choice to keep going for my family and for me. The future can’t be predicted. I can’t mystically shelter my children from all harm. The shock of loss has slowed my acceptance of the fact that complete protection is an illusion-even if it is fueled by the fiercest love. My vigilance towards my children is still strong. But a parallel vigilance is burgeoning. It still whispers, “let it be me” but the meaning has shifted. Let it be me who remembers all aspects of my son’s too short life. Let it be me that honors in my own way the zeal Jordan had for life. Let it be me that loves life and hopes for joy to come in the morning.

Spring is coming

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Just Beneath the Surface- A Father’s Grief

My husband Mark is the guest blogger for today. So, instead of Always Mom of 4, you’ll be hearing from Always Dad of 4. I’m grateful that he agreed to give the perspective of a grieving father which is not frequently heard.

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Jackie asked me to host blog today, looking to inject a different perspective into the journal of our journey since the loss of Jordan.  I am honored and a bit intimidated in opening up in a forum like this, but I told her I’d give it a shot.

Last night, as I reached up to rub part of my back that is aching but in one of those hard to reach areas, I wrenched my face in obvious discomfort.  Not knowing that I was being watched, I heard a careful whisper from the corner of the room, “Oh no, Dad, is there something wrong with you too?”  The, “too,” part of her question came because Merrick was already sick and her mom had been resting a lot lately dealing with a flare from lupus.

“No baby.  My back is just sore because of the way I was sitting over there on the couch.  Don’t worry, I’m fine.” Always the worrier, she just wanted reassurance that things wouldn’t take an unexpected turn for the worse.  After all, Jordan always called me “the healthy one.”  In the cold of late February and early March we got hit with a series of sniffling noses and achy bodies.  Recently, Merrick had been home for two days, as it turns out sick with strep throat.  Jackie’s lupus  has shown up this time as inflammation of her right Achilles tendon.  Hard for her to get around when that happens.  The girls just recovered from colds and a few days off from school.  I’m fighting off a cold as well, but as all parents do, I reassure the children that I’m ok and here to make sure that things will get back on track.   But sometimes I wonder, will they ever? I can’t give that assurance to our children anymore that “nothing bad will happen.”

I’ve tried to explain to my friends and family that the death of Jordan seems analogous to losing a leg and then being forced to learn in a short amount of time to walk again with a prosthetic. It makes it look to the outside world like I’m a perfectly intact human being, but that is far from the truth. I can stand up straight, but that limb, my Jordan, is still gone. While I can function, go to work everyday and have an outward appearance of being “ok,” the pain and sadness is right under the surface.  It sits quietly with my soul similar to the way Jordan as a young child would keep his hand on my arm when we were sitting close as if to always keep me near. He was my oldest and that hand on my arm was a physical reminder of my stature as a father and caregiver. I would look down at his hand reassuring him, I’m here, you have me.”

I still feel that hand on my arm.  Now the hand is a reminder that just as I’m a father and caregiver, I’m also a grieving dad. I’m learning how to move through life with this new moniker. The first two were expected and eagerly anticipated, the latter an intrusion and shock.  But I continue to push forward.  So to my babies, who know me well and walk with me on this journey, I do at times say, “I’m ok,” and assure them that if I can help, I’ll be here for them and I will do everything I can to make sure that they don’t have to face the unwelcomed shocks alone.  If they come, we’ll keep pushing forward.

Since Jordan died, we all move with a vigilance, trying to ward off unexpected bad news. I say that knowing that keeping the realities of life at bay is impossible, but right now it feels like reassuring my children about the little things, like my achy back is a concrete way to make them feel secure. As a parent, sometimes I feel like I’m desperately trying to keep things on an even keel so as not to give rise to the tsunami of emotions that come along with knowing that our lives can be changed in an instant.  Nothing is guaranteed.

A few weeks ago I was watching one of my favorite movies, “Dances with Wolves.” The girls walked into the room curious about what I was watching and joined me. While trying to enjoy the movie I also took the opportunity to share with them the beautiful filmmaking and historical relevance of the story. During an intense chase scene, when the US Marshalls were descending on the Native American tribe, one of my daughters turned to run upstairs.  I protested saying, “Hey don’t you want to see what happens?”

“No” was her immediate response but I paused the movie to urge her to stay and watch.  I told her that the man and woman wouldn’t be separated forever, but the tribe had to move on and they were splitting apart for a little while.  I made the mistake of saying, “It’s a movie, everything works out ok, but their lives are changed.”

She looked at me saying, “How can you say everything works out ok when my brother didn’t come home from school?  That didn’t work out ok, he’s gone.”  I turned off the movie, called her down to sit with me and just held her as she cried.

All I could say to her was, “You’re right. Things don’t always have a happy ending. But even when they don’t people still continue to move forward.” For all of my family, the fear of sudden loss is just under the surface.  My babies learned at an early age that life, while full of promises, could also offer bitter disappointment and sorrow. As parents Jackie and I choose to continue to move forward telling our children that time will help diminish the pain of sorrow and that Jordan will always be a part of our lives.

 

Mark and Jordan reading the paper

Always Dad of 4

The Snowy Day and a Friendly Intervention

 

I was outside with the kids on their snow day as they attempted to turn a 5 ft snowdrift located right in front of the garage into a sledding hill, while Mark used the snow blower to clear our driveway and sidewalks. Merrick’s first comment when he came outside was, “Hey Mom, this is the kind of day Jordan and I dreamed about. A snow day like this where we could build tunnels and snow forts, a day just like this.”

I stood watching him for a second imagining what he was imagining and found that my only reply was, “uh huh.” I thought about saying, well your sisters would love to build a fort with you, but I’m so glad I didn’t. When I thought about how saying that would sound, it reminded me of one of those well-meaning comments like, “At least you have the other children to keep you busy.” Merrick had a specific image in mind and the people in it were he and Jordan.

The kids and Mark ended up staying outside much longer than I did. After shoveling part of the deck and snapping pictures of the blizzard aftermath, I was ready to come inside. The cold was making it’s way to my fingertips always a sign that lupus was at work. After pulling off my boots and hanging up my coat, I assigned myself to chuck wagon duty.  I found a container of turkey hash in the freezer that my parents made when they were here for Christmas. It would be the perfect warm-up meal and give me something to do so I didn’t feel like I was wimping out by not being outside.

The hash was going to take a while to warm so I found some leftover spaghetti in the fridge and heated that up for myself even though I was tempted to wait by the aroma of the turkey, potatoes and onions. I could hear Lindsay and Kendall playing and the steady sound of the snow blower so I knew it would be awhile before everyone came in. Everyone. Kendall said earlier in the day when she realized her dad was staying home too, “We’re all here together.” Her words wandered through my head as I ate and then I just laid my fork down and put my head in my hands. I sat at the table and tears filled my voice as I said aloud, “I miss you Jordan. I want to call you and talk to you today.” I invited all the lurking sadness to sit with me awhile without fear of being shooed away.

Sitting and crying I knew I couldn’t have what I wanted. I wanted to send Jordan pictures of his siblings trying to sled down the 5 ft snowdrift in front of the garage and of his dad snow blowing the driveway so bundled, that all you could see was his nose. Jordan knew how much his dad hated the cold. I wanted to call him and make sure he was prepared for the storm coming his way and that he was safe and warm and dry.

While I sat, I allowed myself to imagine what Jordan would be doing, something I haven’t been able to do very often anymore. With eyes closed, I saw him studying and hanging out in the hallway of his dorm talking to friends. The images came so readily and then just as quickly they dissipated.  I got up and cleared my lunch dishes and resigned myself to a wistful day.

I wandered over to the couch and sat down with my laptop.  I looked at my emails to find that Jordan’s friend Kathryn had emailed me with, “just checking in,” as the subject line. She told me about her classes and how she’d been thinking of the family and me. I wrote her back immediately telling her she was the warmth and sunshine I needed at just the right time. My melancholy was getting mixed with a little joy. After I emailed Kathryn I decided to email Jordan’s friend Matt. Kathryn told me that she’d spoken with him a few days before. In my email to her I closed by saying, “I’m so glad two of Jordan’s favorite people are becoming such good friends.”

I didn’t get to see Matt over the holidays and it felt like the right time to reach out to him, so I extended the check-in started by Kathryn. After asking about his classes and after graduation plans, on an impulse I sent him hometown pictures of all the snow and one of Merrick in an, “American Gothic,” pose, shovel in hand.

When I closed my laptop after writing the emails I noticed the difference in how I felt. I said a silent thank you to Jordan for sending his friends to me, so that missing him hurt a little less.

Jordan’s Snow Days

Christmas in Ohio 1990 Jordan's first snow. Mark is shovelling in the background.

Still loving playing in the snow as a teenager

 

Worldwide Candle Lighting

December 12th was the Worldwide Candle Lightning ceremony which is sponsored by The Compassionate Friends organization. At 7pm, your local time, they asked that you light a candle for a child that died so that around the world, there will be 24 hours of light in remembrance .I posted their “poster” on my Facebook page asking friends and family to join in the ceremony.

We have a Jordan candle that we bought in 2008 specifically for the candle lighting ceremony. A couple of hours before 7 pm sadness started to seep in and the ceremonial candle lighting felt more onerous than comforting. Mark and I got were out most of the afternoon  running errands and the thought of one light flickering to honor Jordan made me think of the first year we lit the candle.  Mark the girls and I sat numbly and cried, while Merrick stood pacing as the candle flickered. Merrick finally asked to be excused and escaped to his room. Last year was less ceremonial. I lit the candle on my own and when one of the kids asked why, I told them, “It’s for the candle lighting ceremony to honor children who died.” From each of them I received an, “Oh,” as they went about their way.

I didn’t want to light Jordan’s candle if it meant adding to our sadness. Many days Mark or I will light the candle when we are missing Jordan and have no place to focus our longing. The flame gives us peace. We’ve both held  our daughters after they’ve lit Jordan’s candle because they miss him so much. Each time the lit candle was a point of comfort and connection. But on the ceremonial day it started to make me feel like I was slipping deeper into mourning.

Anxiety about lighting the candle started to bother me. I finally told myself, “You don’t have to wait until 7. It’s your house, light it when you’re ready.” I also felt like that one candle wasn’t enough to illuminate the spirit of Jordan. Jordan loved Christmas and as our house slowly takes on the air of the season the spirit of Christmas needed to be intertwined with Jordan’s spirit so I could imagine him singing Christmas carols in his silly falsetto voice and feeling him close. I gathered all the tea light holders that we have and placed them on the mantel of the fireplace and around our family room. Well before 7 I lit them all including Jordan’s candle. Mark came into the house after shoveling snow and said, “Oh it looks nice. You lit the candles already?”

“Yeah, I couldn’t wait until 7 it was making me too sad. I figured it’s 7 o’clock somewhere. Plus, Jordan needed more than one candle.”

“Are you okay?”

“I don’t know. I miss so much. Why isn’t he here?”

“I miss him too. We’re going to be alright.”

I nodded my head and gazed at Jordan’s candle. As I felt sadness filling me I reminded myself, “You’re doing this to honor Jordan. If it makes you too sad, then don’t do it.”

I thought of all the ways I kept myself afloat when I went to doctors’ appointments for lupus. Every time I walked in the door of the hospital I reminded myself, “Remember how you’re feeling right now, no matter what the lab work says you won’t come out feeling sicker than you did when you went in.”

I used the same logic for the Candle Lighting ceremony. “Remember how you’ve felt today. You miss Jordan but today has been okay.”

I intently gazed at Jordan’s candle reminding myself that I’d lit it because I wanted our family to honor his memory not to bring on additional sadness.  The flames flickered and I thought of other children I knew who were gone but forever loved: Dougie, Dawn, Paige, Marcus, Larry Jr., Rory, Max, Hudson, Henry, Heather, Trina, Matt and so many others. After a sweeping look around the room at all the candles burning and a, “I love you Jordan,” I got up and checked on dinner. The candles burned in the background filling the room with light.

Blessings

We didn’t go to the open house at the high school. After all of my hand wringing, guilt and finally fortitude I wasn’t able to go. Mentally and emotionally I was prepared. In the end lupus took over. After a fitful night’s sleep, I woke up yesterday morning with swollen joints and fatigue. I probably could have soldiered through but I talked to Mark and we decided that we would email Merrick’s teachers and set up individual meetings with them. I was in bed early and looked at the clock realizing had I gone, I would still be at the high school. Taking care of myself while Mark supervised dinner and homework turned out to be the best solution.

I didn’t want to push myself too much yesterday and feel even sicker today. My 22nd wedding anniversary is today. I am so honored and proud to have Mark as my partner on our journey. Through health scares, moves and the ultimate loss, the death of our son Jordan, I have never doubted the strength of my marriage. Even in loss and sorrow when we’ve held each other and wept together I’ve been grateful that he is my life partner. I’m glad that I’m feeling better. Today is for celebrating 22 years with a man who brings perspective, comfort and so much laughter into my world.

Mark and I summer of '08

Here is the song played during our first dance at our wedding.

I’m feeling sentimental today and very blessed.

Back To School

When my kids go back to school, it is always an anxious time for me. When I was working quasi part-time (4 days a week) I chalked my anxiety up to the stress of working and keeping track of all the beginning of the year activities like, open houses, parent “meet and greets” and the start of soccer season. It’s been over 10 years since I worked outside of the home and I still react to the beginning of the school year the same way. I know that my angst stems from more than just an overloaded schedule.

The physical energy needed to obtain what everybody needs always brings on distress for me. Heralding the school year with the lunch boxes and school supplies, carpooling and homework assistance typically brings on a lupus flare. In years past, because of being ill from lupus, I missed one open houses. On these occasions, Mark would go without me, taking copious notes knowing what questions I would ask of him about the teachers and the curriculum when he got home.  It didn’t matter how well he handled the task alone. It didn’t matter how quickly my kids got over their disappointment that I wasn’t going to meet their teachers that particular night. I felt guilty that I wasn’t going. My inner critic badgered me with questions like,  “What’s wrong with you?” “Can’t you suck it up for a couple of hours?”  The guilt and self-criticism got worse once I stopped working. “You’re not even working and you still can’t pull it together to go to your kids’ schools.” Even though one of the best remedies for a lupus flare is rest, for me it was hard to come by with such a harsh inner critic at the helm.

With time and help, I’ve learned to quiet but not silence my very intense inner critic. When I feel myself going down the, “You should be able to…” path, I’m quicker now to take care of myself and remember to do what I always urge others to, “Be good to yourself.” Still, I’m wrestling with my “back to school” demons as Open Houses kickoff this week for my kids. At both the middle school and the high school, the open houses are conducted the same way. Parents/Guardians follow their child’s daily, albeit abbreviated, schedule and meet all of their teachers. Going to my daughters’ school, which was also Jordan and Merrick’s middle school isn’t presenting any problems for me. It is going to the high school that has me paralyzed. Mark isn’t sure he’ll be able to go this year and I’m not sure I can go alone.

For Jordan’s freshman year at the high school, Mark went to the first open house by himself. That first year he came home to tell me of all of Jordan’s teachers and his workload. I listened eagerly, liking what I heard and determined not to miss another open house. In the years that followed, Mark and I went to the high school open houses, bumbling along with all the other parents through the 4-story building with its mazes of hallways. It was easy to get turned around because the numbering of rooms follows no logical order. Walking the halls of that massive high school trying to find classrooms has always been difficult for me. I am self-diagnosed as spatially and directionally challenged. Offering me assistance by telling me to travel east or that a building is on the northwest corner sounds like a foreign language. When Mark and I lived in Houston I called him from work during one of our first days there to give me directions to the supermarket. This time was before cell phones or I would have kept him on the line until I reached my destination. Instead I relied on directions written on a scrap of paper. He started his directions with, “When you get to the top of the street, make a left.” I immediately stopped him. I snapped, “Remember who you’re talking to. When I get to the end of the driveway which way do I turn?” I’ve always needed “left”, “right” directions with plenty of landmarks thrown in for cushion. Each time I’m at the high school for a meeting I ask for directions along with the room number and allow myself “getting lost” time.

Last year was our first open house at the high school for Merrick even though he was a junior. He did a mid-year transfer from a private school his sophomore year, so we missed the previous year’s open house. While I’d been as far as the “Welcome Center” to drop off Merrick’s registration forms, the open house was the first time back, walking the halls of the high school since Jordan died. There was trepidation for both Mark and I, wondering how it would feel to bump into teachers we hadn’t seen since Jordan died or even sit in classrooms that he once occupied.  With all of our sorrow and fear, we were determined to go. Our children need to know that we are fully invested in their presents and their futures. I kept telling Mark, “It’s Merrick’s school now too.”

We walked from our home to the high school holding hands while catching each other up on our days. We entered the school and were forced into the crush of other parents angling for a place in line to pick up their child’s schedule. There wouldn’t be much time to reminisce. I was relieved. I wanted my focus to be on Merrick, even though every thought had as its backdrop images of Jordan walking the halls. I was hoping too that we wouldn’t run into any well-meaning friends or acquaintances that would ask with pity filled eyes, “How are you?” Pity is hard to accept. Loves, concern, compassion, even discomfort from others are feelings I understand. Pity makes me angry. For me someone showing pity presupposes knowledge and understanding about how I’m feeling and what the grief I’m enduring. It always feels laced with relief that the loss didn’t happen to them. I had my guard up, staying vigilant and hoping that no one would say anything inappropriate about my loss (“He’s in a better place”) or feel the need to update me on their children’s lives even though I hadn’t asked. Hearing people talk about how much their children loved being away at college and that they were planning to see them for parents’ weekend hurt so much in the first year after Jordan died. I was so traumatized by grief that I rarely did more than stand and nod when people would update me on the college experiences of their children even though I wanted to turn and run.

After Mark and I went to several of Merrick’s classes we started to relax a bit. As we stopped to look at the schedule to see where Merrick’s next class was, an acquaintance with whom we shared several mutual friends stopped us in the hall to say hello.. We’ve known each other since Merrick and her son went to preschool together. She wanted the update on Merrick’s transfer to the high school and asked how our daughters were doing. We talked of how big the girls were getting and yes how time flies given that both of our sons are in high school. We stood smiling and then she said, “You have a son in college too, right?” In the seconds after the questions Mark and I looked at each other wondering which of us would answer. How could she not know about Jordan? I stayed mute knowing that the only other gear I had was rage. Mark calmly said to her, “Jordan was killed in a car accident last October.” Her hand flew to her mouth and she said, “Oh my God, I knew that. I’m so sorry.”

Mark told her not to worry. I stayed silent and focused my attention on her right ear. I didn’t want my eyes to meet hers anymore. She kept talking, nervously saying how dangerous the roads were and how she always tells her son to be careful. I thought but didn’t say, “Yeah that was our mistake. We didn’t tell Jordan to be careful. PLEASE STOP TALKING!” The last thing I heard her say was that she almost got into a car accident earlier that day. She said, “Almost”, I didn’t want to hear the word almost and accident strung together, not when my son is dead. Panic was rising in me and it finally dawned on me that I didn’t have to keep standing there listening to her. I had to get away, so I started moving towards the water fountain. An old neighbor of mine popped into my path, hugging me and asking who Merrick had for his guidance counselor. I looked up to see that my acquaintance had vanished. She no doubt couldn’t find a way out of the conversation either and was relieved to have a quick exit. After briefly speaking with my neighbor, Mark and I looked at each other and exhaled deeply. The bell for the next class was ringing and we both wanted to meet the rest of Merrick’s teachers. As we started to walk towards the next class I gripped Mark’s arm in panic, remembering the one place I didn’t want to happen upon, the newspaper room. Jordan was on the newspaper staff starting his sophomore year. He loved the work and the camaraderie and would often be at school until very late into the night when they were doing layout. Thinking about Jordan’s connection to that room and knowing how fragile I was I whispered in Mark’s ear, “I don’t want to go by the newspaper room. I can’t handle that tonight. That’s too much.” I was shaking my head and trying not to cry. Mark asked one of the student guides in the hall where the newspaper room was. She pointed in the direction and told him how to get there, assuming that was our next destination. Mark thanked her and we set off in the opposite direction. He held my hand and said, “We know where it is. I don’t want to go there either. Now we won’t accidentally go by it.”

Going to the rest of Merrick’s classes I was reeling from the trauma of being asked, “You have a son in college right?” and trying to stave off all the reminders of before Jordan died, that being at the school was bringing up. I wondered as I sat at the desks, “How do my kids do make it through school everyday?” I was fidgety and could barely sit still let alone focus on what the teacher was saying. I am amazed at their strength and resilience. At the end of the evening, Mark and I left the school through the door closest to our home. We took a few steps and then I began to weep. Mark put his arm around me as I said repeatedly, “You have a son in college, right?” and then bitterly answered the question, “No we don’t. We used to, but he’s gone. Our son is dead.” I cried and spewed out a variety of responses to the question we’d been asked until we were in front of our house. Mark and I stood there for a moment catching our breath and preparing to enter our home. As we walked in, Merrick met us in the entry. With eager eyes he asked, “So how was it? What did you think of my teachers?” Without pausing Mark and I both said great and gave him the details of our evening he needed to hear.

I’m keenly aware of my desire to be emotionally present and available for my children. The vigilance I carry for my kids and me to ward off unintentional but still hurtful comments is on high alert. I haven’t decided what I’ll do about Merrick’s open house if Mark can’t come. I’ve thought about contacting Merrick’s teachers to see if there’s an alternate time they’re available to meet. Maybe I’ll still go. It’s not as though I haven’t walked the halls of the high school by myself since Merrick started there; I have, numerous times. It’s still hard. Each time I visit, I whisper the same thing to ready myself, “It’s Merrick’s school too.”

A New System

Since Jordan’s celebration on Saturday, I’ve had the eerie, awkward feeling of “now what?” Now what do I do to keep  Jordan close to me? Planning the event and being able to talk so freely with others about Jordan without feeling self-conscious was a relief. A fear that I’ve had since Jordan died is that he would be forgotten. Being with family and friends, receiving cards or calls around Jordan’s birthday was comforting and reassuring.

Intellectually I know that I’m not the only one that misses my son. Still, on days when I sit quietly and others are rightfully back to their daily lives, my mama heart surges and wants the world to know “Jordan was here!” I’ve been having surreal Mama moments over the last few days. I’m feeling myself winding down from the emotional intensity I felt during the beginning of August with the girls’ birthdays and Jordan’s 21st birthday and celebration. I’m also aware that I always feel a wistfulness. I’m starting to realize this wistfulness is a new part of me. I will always miss my son. The intensity of the longing ebbs and flows but it is living inside of me. I’m not going to fight this new system coursing through my body. It is making its place next to my veins, arteries and major life organs. It is a major life system. My knowledge of anatomy didn’t prepare me for the physical changes that grief would bring. I can’t fully describe the physicality of longing but I feel the change within me. I feel it the same way I feel my breath, my heartbeat, and every ache and pain.

I never thought I’d say this, but I’m grateful that I have lupus. It has given me a guide to chronic conditions, and allowed me to accept the chronic nature of certain aspects of grief. I spent the first 15 years of having lupus in denial. Every time I went for long periods without a flare, I deemed myself cured. Then when debilitating fatigue, swollen joints and fevers would return I was always shocked and angry. I spent so much energy fighting my illness which only made it worse. It wasn’t until I decided that I would take care of myself as best I could and live with lupus instead of fighting against it, that I start to live a healthier, whole life.

Grief feels a bit like lupus to me. I can’t pretend that because I’ve had several days (sometimes longer) of feeling functional and hopeful that I’m done with the soul shaking, debilitating parts of grief. My experience to date lets me know otherwise. Grief does not follow a linear path. There are minefields that bring me to my knees no matter how functional and at peace I felt before. If I try to deny that sorrow will return with varying degrees of force, I hurt more than if I allow myself to feel what I’m feeling and know that just like flares from lupus, I’ll get through my flares of grief. I’m wistfully learning to accept my new normal.