In Memoriam: Matthew DiBara 1960 - 2024

A middle-aged man smiles under a wooden roof structure.

Dad, Dreams, Discoveries, and Diagnoses

Please read his obituary

Proud to post our first NELAD BLOG! Written by our niece, Melinda (DiBara) Bergeron, for the 2 year anniversary of her dad’s death.

(Melinda actually wrote this on the 1 year anniversary, but we weren’t ready to post it or revisit it until now.)

365 days around the sun since you’ve been earthbound.

I remember the long hour+ drive to Boston, selfishly thinking, “all these false alarm calls over the years and you choose the days leading up to my birthday…” I begged doctors to promise me he’d surpass the actual day. The thought of marking an end to our complex relationship on my birthdayfelt like a tragedy I’d never fully be able to grieve.

I remember the beautiful, young resident doctor who had such a remarkably warm presence, telling me at the time, that perhaps the duality of our relationship and the duality of celebration and grief, the duality of life and death, simultaneously around this time, might mean something to me- someday. I thought, “what an absurd comment… I will never be able to celebrate my birthday-ever again!”

I haven’t shared this with anyone outside of my immediate family, but after his death, I was having, what I thought at the time were, nightmares. For about a week straight, anytime I fell asleep, I found myself, standing in a cemetery and there was an empty casket sitting there beside an empty pre-dug hole. My father was standing outside his casket REFUSING to get inside of it. It wasn’t a surprise that we’d be fighting, even in my dreams. I demanded to him that I needed him to “get in,” and let me close the book on his death. I needed to work through this. He said, “I’m not getting in, until you’ve figured it out”. I was ENRAGED! Figure what out? I’ve always felt like the “forgotten” middle child. Besides, I thought I had it all figured out. I thought, “I get it, Dad, you want us to forgive each other. I do. So, get in the casket!”

This EXACT nightmare, with very little deviation in the script, went on for a week straight. I was taking melatonin, Benadryl, Unisom, and magnesium baths to help me sleep, while trying to stop the dreams. I was becoming disheartened, knowing I’d close my eyes and fight with my deceased father again, and again.

The stress of this was beginning to, again, trigger many of the debilitating physical symptoms I’ve had for years-- all sorts of unexplainable symptoms prompting all sorts of weird diagnoses. I had been struggling with syncope episodes, (aka, passing out). I was having right-sided weakness and paralysis, PNES (no-epileptic seizures), and migraines so bad I was bedridden for days at a time, until I got an IV cocktail to break the migraine. I had aphasia when I’d talk, and I spent 7 months of my pregnancy with my daughter, completely blind in my right eye, then several week long hospitalizations -only to be discharged once confirmed it wasn’t a stroke.

It was believed my father had Lyme disease and coinfections for a long time that caused his brain atrophy. What we would call, “dementia,” was shown to be Lyme/Vector-borne induced.

While my family and I were in the hospital with my father, my aunts had looked at me having heard these stories the last several years, my suffering, and my horrible quality of life-and told me I needed proper Lyme disease testing and a proper evaluation. I shared the story of Maelynn, my youngest daughter, who had unusual and inconsistent allergic reactions, and a Mast Cell Activation diagnosis. At this point, I was willing to do anything- just to feel better. So, I called the doctor they referred me to, and I got an appointment on the books.

The dream stopped that NIGHT. Initially, I chalked it up to it being over a week out from the trauma, and the stress levels coming down.

I got my test results several weeks later, I DID have Lyme disease and a few coinfections. I started treatment, and while treatment has had its hurdles while trying to find what works for me, I haven’t had a SINGLE syncope episode, I haven’t had a single non epileptic seizure, and I haven’t lost my vision in my right eye. I haven’t even had a migraine that has bedridden me for longer than a day in almost a year. And my littlest baby, who was tested and confirmed to have been born with the same strain I have, is also being treated- and her reactions have subsided! Truth.

That resident doctor was right. The duality of our complex relationship WOULD someday signify something so much more. This year on my 30th, I was given the gift of better health and an early diagnosis for my daughter. While the anniversary of my father’s death was looming, it was almost impossible to think of him without immense gratitude and hope for the way in which his passing changed our lives.

I figured it out, Dad.
Thank you for loving me. Thank you for leading me down a path I wouldn’t have otherwise sought out on my own. Thank you for the rekindling of family relationships. Thank you for continuing to show up for me.

I miss you. I miss you so much, that when I cry, it hurts my chest.
But I cry with love and praise in my heart now, rather than bitterness or angst.