the new milieu

I returned to university January 2016. I went to community college for 2 semesters 10 years ago. Then there was some weirdness with financial aid that prevented me from continuing. My first year was free as my father filed bankruptcy after the housing market crash and a house fire that destroyed everything he had worked for. After being priced out of school,  I spent 7 years moving around town a lot, flitting from unsatisfying, low-paying job to unsatisfying, low-paying job and traveling when I could until the Feds finally let me file for financial aid independently at 24.

August 2015 I had picked a college and a major: I was going to attend Central Michigan University for computer science. I was preparing for the 2.5 hour move away to their campus until August 12, 2015. After a month of vague but gnarly symptoms, my parents took my kid sister Sara to the hospital. They were gone for over 12 hours before they called us back home and told us she was diagnosed with a brain tumor called DIPG (diffuse intrinsic pontine glioma). DIPG is the worst diagnosis a pediatric neurologist can hand a family. It’s incurable, inoperable and poorly understood by science. Only 300 kids get it each year in the United States. 99% of them are dead within 2 years. Out of tens of thousands of cases, only 2 are known to have survived into adulthood after diagnosis. It arises in the brain stem and chews up all of the tissue there until the kid either fades away while in a vegetative state or dies of respiratory arrest. The lab coats don’t really know what causes it, but the medical examiner wrote us after her autopsy and noted her cancer cells were still growing weeks post-mortem. My own hypotheses run the gamut:

1. Weird virus  (what else lives for weeks in a fridge?)
2. Chromosomal disorder (our family has no history of cancer but my parents were old when they had her) 
3. Carcinogen in the environment not yet pinpointed (we live in Detroit and there’s all kinds of wild industrial slime/smoke around)
4. Prion (what else melts the brain so completely?) 

I have no proof and won’t until I’m done with my degree.

What was Sara like? Sara was fiercely intelligent, hilariously witty and extremely loving. I’m using a lot of superlatives in that sentence, but I mean every single one of them. I was present for every stage of her life, and I saw her potential with my own two eyes. Even her fight with the disease was pretty unusual, in the sense that at diagnosis they gave her 40 days to live, and she lived with cancer 16 months. Anyway, she refused to be defined by her cancer, even after it robbed her ability to run, walk or even stand on her own two feet. I took care of her in hospice, and she died in my arms at home. She and I always had an extraordinarily close relationship, and it is both my life’s deepest pain and greatest honor to be the last face she saw before she left this mortal coil.

I still struggle with her death two years later, spiritually and emotionally. Who wouldn’t? What has kept me grounded is her example of faith, courage and determination despite facing everyone’s worst existential nightmare. Further, I know for a fact she’s not suffering or struggling any longer, which is a mercy in this situation.

I was in my 2nd semester at uni when she went into hospice. At the time, I was a biomedical engineering major. I almost flunked out because I didn’t withdraw, but I just couldn’t. 

“I’m so proud of you!” she said, as she snuck up behind me and hugged me. I was in the middle of telling Iris I had gotten admitted to college and didn’t realize Sara had shuffled into the room. “I know it’s something you’ve wanted for a long time, my Dee-Dee. Promise me you’ll do great?”
“I promise.” I said, as I tried to hide the tears springing to my eyes at that moment.
December of 2015 was when this happened, and she had already endured 3 surgeries and the dread of her life soon coming to an end, but her focus was on me that moment.
I know she has ceased to exist, but I still can hear her voice in my head.
Promise me…? Promise me…? Promise me…?
Whenever I do less than my best, I feel like I’m letting her down.
I long to feel comfortable in my skin as a scientist, to feel like I’m not an impostor, or like people won’t come to the conclusion I’ve gotten here just because of handouts and tokens from the government. I want to feel like I belong here, even when it’s 2am and I’m struggling to grasp basic trigonometry.
What are you doing? my brain will shout at me. Why did you choose this? You have no gifts in this! Who do you think you are!? 
 
But then my mind will take me back to Sara’s last night on this Earth. It was 3:30 am when her breathing became labored. My heart jumped into my throat as 5, 10, 15 seconds ticked by and her chest didn’t move. Her head jerked upward as her damaged brain suddenly remembered how to breathe, and I trembled with fear. I laid as close to her as I could and wrapped my arms about her shoulders and I counted her breath the rest of that night, knowing that the clock was finally running down. I stayed awake as long as I could so she wouldn’t have to face the end alone. My worst nightmare was that I would drift off and wake up and find her already dead. That’s not what happened, but I still think about her final words to me the next morning:
“Everything hurts.” 
 
I see that pitiable scene in my head all of the time, and it was just as terrible as my nightmares had pictured it would be. Iris, Kim and I were attending to her right up until the second her heart stopped. I see my baby girl laying on the bed in her underwear, grey from death, and can still hear my mother screaming inconsolably in the other room, and then I get back to 2018, and my adult dorm room, and my exceedingly difficult homework and I will always keep going.
Her death cannot be in vain. I will reply to my screaming, tired mind. I have to let the horror of what happened motivate me. 

A few weeks before Sara died, my father started complaining of visual changes. “The world has lost saturation.” he explained. “And now there are pockets in my vision where I can’t see anything.” I urged him to get an MRI, which he did. They didn’t call him back with the results for weeks. He went to see a specialist, who informed him that he had several strokes.  I found out later that my father, under the extreme pressure of watching his daughter die of cancer and working 18-20 hours a day, was not taking his blood pressure medication as directed. He’s also experienced permanent personality changes and memory issues. The neuro-ophthalmologist told us, ‘The only reason he didn’t drop dead is because he has an extraordinary brain.” My father is a visual artist and a fine mathematician. He went to private school and college on merit alone despite poverty and racism in the 70s and 80s. The specialist continued, “He had grey matter to spare, in a sense.”

My father has retired early for his health. His GP and specialists have all told him, “Quit or die, the choice is yours.” My father was a pit boss at the casino here. He had worked in gaming for 20 years because the pay was handsome and he enjoyed the puzzles and schmoozing that came with the job. He’s at home all day with my mum now, half-blind and bored to tears. The strokes have affected his ability to keep his mouth shut, and so he’s more blunt than I remember, but also more loving that he’s been in years. It’s as though the stroke turned his soul inside-out and we’re getting to see more of the real him than we’ve seen in a long time. Seeing more facets of my father is the only mercy of that dreadful situation. Even though we don’t necessarily agree on how to live life (it’s that darn Boomer vs Millennial viewpoint again), I still deeply love and respect him and am grateful he’s here despite everything.

I’m doing a lot better in school now, though I still struggle in Math and Physics classes like I did when I was younger. I’m grasping hold of the concepts, but still struggle with the details of it. It’s an ADHD thing; dyscalculia/dyslexia tend to be co-morbid with it.  Nevertheless, I’m enjoying my studies and bringing home hard-won “A”s and “B”s through cognitive behavioral therapy and study tips from support forums on Reddit and Tumblr. I changed my major to biomedical physics (with a minor in mathematics since I have to take it all anyway) because I want to help kids like Sara. Oncology, medicine, biology, physics and mathematics have fascinated me since I was a child, and I assumed I’d be a doctor of medicine when I was younger. Now I realise that I don’t have the stamina for those rigorous, endless-numbered residency days like I thought I would. A medical physicist works closely with oncologists but my days will be spent more in the lab vs with patients. I am on my 3rd year (though my 2nd year I was 1/2 time due to family crises). I plan on attending classes this summer and taking Fall 2018 off to learn how to be married.

I first knew of Adam through Instagram. We had enough mutual friends for Instagram’s algorithms to keep showing him in my explore page, though we had never met. He lived on the other side of town. I found his profile intriguing because it was at the right temperature of “personal without sharing too much”. He wrote of DJing, work, travel,worship and his dear family. I also thought he was cute, so I added him on a whim. I didn’t expect him to follow me back or take a pointed interest in what was doing on there.

About 6 months of commenting a lot on each other’s pages went past before I realized: You know, he’s paying me A LOT of attention on here,and he’s apparently single. Maybe he’s interested in something else? 

Our first encounter face-to-face was by chance. It was the last day of the convention at Belleville’s Assembly Hall and I was working my way up the aisle to go to the restroom before the intermission was over. Adam was walking towards me in a grey suit and a blue shirt. We recognized each other and chatted amiably but briefly for a few minutes before suggesting we should talk after the session was over. We never did get around to doing that, but I learned a lot within the few minutes I was able to get a good look at him.

Adam is a dark-skinned Black man of medium height and slender build with high cheekbones,  tawny, wide eyes and full lips. He either has a mustache (1930s style) or he is clean-shaven. He is losing his hair, but in slow motion, so he keeps it cropped very short. His voice is smooth and melodious. He also has a tight, precise diction. His sentences are like haikus.

The first thing I noticed was Adam’s quiet nature. He’s not shy ,necessarily. The term I’d use is “mild-mannered” or “unassuming”. Something about the quietness drew me nevertheless. After years of dating or pining for bombastic and popular types and failing miserably to have good relationships with them, I was eager for the company of a man who just knew how to listen.

I noticed the soulfulness of the expression in eyes. I also saw that he was attracted to me within 2 minutes of us meeting. There was something about the way that his eyes danced around my face that told me so. Breaking the ice was easy and natural despite his quietness and the fact I had slept less than 4 hours that night.

I noticed his clothes.  His shoes matched his belt. His glasses weren’t ostentatious, but were name-brand.He was slimmer in person than he appears on Instagram, so his suit was quite loose on him, but he still looked nice.

But finally, I was struck by his kindness. In our first meeting, we embraced as though we had always known each other. I walked away from him that day thinking, What a lovely man. I hope we get to see one another again.

We went on our first date 2 weeks later. He had messaged me about a song that I posted, and I just had a wave of stupid courage wash over me as I suggested we meet up for a casual brunch and preaching door-to-door. He not only agreed to it, but volunteered information about his work schedule and what seemed to be good a time for him.

“I’m free this Saturday. My Kingdom Hall’s at this location. Meet me at 9am.”

I showed up at the appointed time. He seemed surprised and did his best to fake like he was calm. We ended up having a lot in common, and enjoying ourselves a lot, but we  also spent the day “testing” each other with our questions.  He told me about his life and times while we looked for people to chat about the Bible with on a warm (but not too hot) day.

Adam works for the post and has for 5 years. He delivers mail and packages in a rough neighborhood on Detroit’s west side. Though the work is rigorous, he enjoys being outside, even with the wild dogs and wilder people in Warrendale. He has a degree in computer science. When I asked him why he wasn’t doing that instead, he shrugged and said, “Programming bores me. I only went because my dad paid for it. I’m considering going back to wrap it up, but it’d have to be online.” His parents are childhood sweethearts and have been married since the early 1970s. His dad worked at the airport as their security administrator. His mum does taxes. He has 1 older brother and 2 younger ones. The DJing, as it turns out, is a passion project. He only does a few gigs a year for money.

I remember telling him on the date about my own life, at least the things that weren’t obvious on my page.

“I’m 26. I live in a boarding house to keep my expenses low enough to where college is feasible. I drive for Lyft for food/rent money,but I want to be a physicist. I’m the oldest of 7 children, and my parents met in college 30 years ago.”

“You know how old I am, right?” he said, uncertain I’d be turned off by an age gap.

“Actually, no.”

“I’m 36.”

“Okay. Have you spent time with a 26 year old man lately? I’ve grown tired of waiting for 20-somethings to decide if they’re interested in me or not. I’ve determined that I have no desire to waste my time on a man who’s not clearly interested, as I have stuff to do. 36 is a good age. You’re young enough to where we have things in common but old enough to have your act together.” He seemed relieved at this answer, and the date continued.

He was raised a Jehovah’s Witness. I was not, but became one when I was a teenager. It was important to me to meet and marry a man who had the same values. The most important things I do during the week relate to my spiritual practice, and I wanted to make sure that I could have someone who not only understood but had the same spiritual goals I do.

Before the day ended, the final test as to whether or not a second date would happen occurred accidentally.

I had taken the cap off of a cup of coffee to let it cool and inadvertently knocked some of the hot liquid on my hands. Miraculously, I didn’t scald myself but Adam promptly sprang to action.

“Oh my God, are you okay? Are you hurt?” he said, frantically dabbing at my hands with napkins. He searched my face for signs of pain or fear.

“I’m okay, don’t worry. Thank you.”

“You’re sure?”

“Yes, I’m fine.”

He was visibly relieved as he held my hands in for a few seconds. “I’m just glad you’re not hurt.”

The earnest caring drew me to him.

The day was drawing to a close and we were talking about Star Trek. We ended up bonding over Deep Space Nine. The other two people in the car with us, older ladies from his hall, looked at each other, bemused.

He drove us back and then asked me for my phone number. “I’ll text you.” I embraced him and departed.

We texted for a few weeks before we went on more dates–dancing, to the movies, at his friends’ house, dinner dates for steak and wine, to the museum, for tacos, more preaching door-to-door. I let him meet my family, who welcomed with open arms, and he came to my Hall, and then to my parents’ hall.  Suddenly, 2 months had swept past and on a late night date after watching me study math at school with my friends, he kissed me for the first time. The pale flood of streetlight washed over our faces. I embraced him and my heart started to race as he tightened his grip across my shoulders. He pulled me back and gazed at me like he was staring at a masterpiece. The glasses he usually wears disappeared into his pocket. His fingertips stroked the nape of my neck and the earth ceased to turn. I knew then that I was in love.

He told me he loved me shortly after this, and brought me home to his parents. 

Everyone in our lives was elated for us, and still is. We have a happy, warm, loving relationship, and everyone can see it in our carriage.

I had been single for 5 years before him. He had been single even longer, never quite clicking with any of the blind dates people were setting him up on. I couldn’t understand why it wasn’t working out with other people, but none of that mattered when Adam and I sat in a theater holding hands and we spent half of the time there gazing at each other instead of at the screen.

I visited Adam on 1 December at his house because he was feeling very sick. I brought him soup, flowers, a card and some other things I saw at the store I thought he would like. Then I was helping him tidy up his place where I found a receipt for an engagement ring.

I showed it to him as tears sprang to my eyes.

“Oooh…. you…. weren’t supposed to see that.” he said. “Whoops. Okay, put your shoes on. Let’s go for a drive.”

Adam drove me to FedEx to pick up a box, and then took the box back to the car. We drove for a short while. I was dazed and dizzy with happiness.

“I haven’t even looked at the ring yet, and I was going to ask you next month, but now that you know, why not now? Look out the window, my dear. Do you know where we are?”

I gained enough composure to look out the window. We were at that same Dunkin Donuts where we spent our first brunch.

He pulled out a beautiful mahogany box. “Are you happy? Is there anything I need to work on?”

“Yes, I’m happy, and no, dear, you’re terrific.” I replied, crying. “Are you happy? Is there anything need to work on?”

“I am happy, and no, I’m very glad to have you as you are. Diane, I love you. Will you marry me?”

The proposal was private, heartfelt and perfect. “Yes,of course.” We kissed and he took me for pizza afterwards.

Our wedding is 1 September. I’m excited but also nervous. He has been the consummate love I’ve prayed for all of these years, and now I pray to just never take him for granted, and for us both to stay healthy and to open my mind to advice about the new role I’ll be taking on.

Until then, I’m living at a hotel/hostel in my old town, Hamtramck. It seemed fitting to return here, a full circle from my first apartment on my own at 21 to my last room of my own before going home to my beloved at 27. I plan to return to school January 2019, when I can just focus on being in school and being a good wife to my prince.

I still am in therapy for ADHD. It was making my life hard in all sorts of ways I didn’t even know about. I also am in therapy to manage my grief and anxieties, and I feel a lot healthier for it.

Overall, since I’ve been gone from OD, a lot of things have changed. Some things were awful. But many things are going on that are truly wonderful, and I’ll keep fighting for my place of peace.

 

 

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April 12, 2018

I didn’t think Jehovah’s witnesses were allowed to dance or drink wine. I’m really sorry abound t your sister, but hopefully her memory will inspire you to do great things!

April 12, 2018

@tristan JWs dance all the time. In fact, we have a lot of dance parties/mixers. 😉 Also, we drink, but in moderation. Some choose not to (and I actually haven’t had any alcohol this year, come to think of it) but we can and do.  Thank you. I miss her every daily, but her memory keeps me going. I remember her telling me, “What’s happening to me isn’t anyone’s fault. If I don’t make it, I just want you to be able to think of me and be happy instead of sad all the time.” So I’m doing my best to follow her wishes.

April 27, 2018

You really are an enthralling writer. That was a wonderful tribute to your sister, and a wonderful introduction to your fiance… he sounds really great!

I see now it’s biomedical physics you were referencing in your latest entry (which I read first). Sounds completely hardcore, but it sounds like you’ve got it under control, despite your struggles. When you think about it, this is the only way cures are found — by people like you, who learn and grow our race’s collective knowledge.

May 8, 2018

@messupit Thank you so much for reading and for your kind words!

Biomedical physics is very hard core but I love it. I would not choose another field. I hope to help make breakthroughs that will help all of us.