The Leprosy of Loss

In the late hours of 2015 Mikenna got mono.  It came as a surprise to us because in 8th grade her best friend and her shared everything and they both tested positive for mono.  This was the first time I learned that although the virus lays dormant, some people have it reactivated.  Those people are usually physically and/or emotionally stressed.     Mikenna had just moved back home from college, was dealing with an eating disorder and we now know most likely the onset of bipolar depression.  She was unable to hardly move out of her bed for weeks.   Fast-forward a year later from then and I would find myself dealing with a preview of what it might feel like to live in grief, I just didn’t know it yet.

A few months after Mikenna, I also developed mono.  It seemed ridiculous at 44, but my Epstein-Barr virus was off the charts and I was suffering from flu-like symptoms that had lasted for weeks.  It wasn’t a feeling of being tired, it was severe body fatigue that did not ease with sleep. I could barely work.  After two months I went back to the doctor.  They couldn’t figure out why I was still feeling like I had acute mono.  Months went by and I was tested for everything including infectious diseases.  Finally, I was given a steroid, and the flue-like body aches subsided.   As months went on, I would wake up with pain in my wrists, hands, feet, and ankles.  Some days my wrists would be swollen, other days, my thumb would feel like it wanted to come off.  That summer I planned a rafting trip for all of my co-workers.   The weekend of the trip, I woke up completely unable to use my hands, I couldn’t hold a toothbrush.   During this first year, I felt crazy.  I work as a nurse, I have over 8 years of advanced education, and I felt insane.  Nothing on the internet made sense.  My family physician was baffled and was one of the most intelligent physicians I had ever known.   She referred me to rheumatology as a last-ditch effort, hoping they could figure it out.

One of the first things the Rheumatologist said to me after labs and my examination was, “you are not crazy. you have an autoimmune disease.”   She explained to me it wasn’t uncommon for mono to accelerate the autoimmune process.  She explained I already had the syndrome where my hands, feet, and face would not tolerate extreme cold and would turn blue or purple, was in my chart from years earlier.  Something I hadn’t thought much about, I’m a colorful person.  I’m the ice queen and my husband is a furnace.  It never bothered me much.  It wasn’t that uncommon.  I didn’t really pay attention until then, that these were early markers of an autoimmune process. A process already set in motion by my own genetics, accelerated by extreme stress and mono or more precisely the Epstein-Barr virus.   She diagnosed me with Sicca syndrome (dry eyes, nose, and throat) and the early stages of rheumatoid arthritis, RA.   I at least had something to research.

As I went down the rabbit hole of autoimmune diseases, causes, treatment, and symptoms, I realized it was an invisible disease process.  Similar to my youngest daughter’s Asperger-like learning disabilities, they are complicated, invisible, and even in the modern world of science, some people believe they are unreal.   I was thankful enough to join a few online support groups.  I found a world where other people were being treated for RA, and Sjogren’s (Sicca).   We were from all over the world, but we shared the swollen joints, dry eyes, and lack of understanding from the world around us.

I learned to stop talking about it too much around other people.  How holding scissors for more than a few minuted might make my hands go stiff.  How I cannot sit criss-cross without my ankles and knees swelling and then being unable to walk, I cannot paint without being unable to use my hands for days later, I cannot wear heeled shoes ever again.  I wear orthopedic unattractive shoes at work.   I take a mild cancer medication weekly, it keeps my symptoms from getting worse and I am thankful.  The medication causes IBS symptoms and I have to be careful about the day I choose to take it.  I take another medication for the all-over body fatigue, it also causes an upset stomach, so I have to take it at night and if I stop taking it, the flu-like symptoms return.  This medication causes severe sun sensitivity so I have to wear long shirts and sunscreen always.  If I am in the sun and become overheated, I get sun-sick and I’m down for days.  The cold intolerance of Reynaurds, has me in multiple layers below 60 degrees and stiff, but I am lucky, I do not have Parkinson’s, cancer, or MS.  I am lucky because of my rheumatologist, recognized right away what I was dealing with.  There are people that wait years, some wheel-chair bound before they are acknowledged. Some people do not have medical insurance to cover appointments and medication.  It is an invisible disease process, but I am fortunate I can work, I can play, maybe a little less, but more than so many and I am very thankful.

Outside my on-line group, I know a few people in my life with autoimmune diseases.  All different kinds.  One of my best-friends carries on with one that is more severe and with a worse prognosis.  Ankylosing spondylitis (AS) is a type of arthritis in which there is long-term inflammation of the joints and spine, pelvis and hips, shoulders and it becomes worse over time).  I don’t dare tell her when I am having a bad day with my joints, hands or feet.  I know every day she can walk is a good day.  I noticed most people with autoimmune disease don’t talk about how they feel. They don’t want to appear whiny.  They quietly soldier on, only talking to others with the same disease not wanting to seem weak or incapable.   This was a glimpse as to what was to come next.

Then my daughter passed.  I entered the world of mothers who had lost a child.  A group no one asks to join.  Not only that but my daughter ended her life, under the influence one night, suffering from anxiety and depression, in a rocky relationship. It didn’t matter she was insanely gorgeous, a straight-A student with multiple scholarships, from a pretty normal loving family.  I couldn’t even say the word suicide at the time.  It left a world of unanswered questions. I felt people back away from me, uncomfortable.  Another alien world.  People did not know what to say, or how to be a comfort.  In this world, talking about your grief, after the initial loss, makes people uncomfortable.   In this world,  it is unacceptable to talk about your child that passed on a regular basis.  (Even though they will always be a part of your life).  On-line, parents seek each other out, like with autoimmune diseases,  to have a safe place to express their sadness and questions, and experiences.    People around us, secretly thankful it didn’t happen to them. They rationalized why it happened, parents didn’t see the signs, or major depression, drugs or alcohol, lack of faith, whatever.  The truth is there is no one correct answer. It is a combination of factors.   They theorize without realizing that they are doing it,  why it happened and how it won’t happen to them,  I know because I used to do it myself.

If I raise my children right, if I love them, if I teach them x.y.z nothing bad will happen to them right?  We live in a broken world.  That doesn’t mean we give up, it means bad things happen to good people.  It means a person, who eats healthily and gets exercise might still get an autoimmune disease or cancer.  We still try and eat healthy, hedge our bets.  It means at 4am a young heartbroken girl, might impulsively choose to close her eyes.  I will still keep trying to prevent this from happening to others.   It’s a messy, messy, world.

I have learned so much through these processes.  How we categorize people quicky.  Right, wrong, healthy, crazy.   How we avoid what makes us uncomfortable.  How we choose to not talk about physical or emotional pain for fear of judgment.  If there was anything good to come out of such a horrible tragedy, it would be this new knowledge.  My eyes are now opened to how we shun those that make us uncomfortable, and how that makes the people we are moving away from, even more, isolated and vulnerable.

-Mikenna’s mom, Forever 19