On sharing grief and “The Fault in Our Stars”

I read “The Fault in Our Stars” last fall.  It’s about a sick girl who falls in love with a boy and they have adventures and fall in love.  I had intentionally put it off for a while.  I tend to not like stories about illness, for the same reason I tend to get irritated watching science-based television shows: it’s hard to enjoy the story when it is so inaccurate.  A lot of my friends had loved it and felt that I would like it if I read it. 

The majority of books or other media with sick characters do not accurately relay the experience of chronic illness.  There’s a new show out about a reporter with cancer and the first episode was painful to watch.  That’s not what it’s actually like.  It’s actually like… life.  It’s like life with medications and injections and lots of vomit, and also friends and boring errands and nice weather and victories.  There is this quality in a lot of stories about illness that life stops when you get sick.  It does not.  A lot of living with illness revolves around managing mundane details.  You can’t just run away from your life and have adventures when you get sick for real. 
So I read the book.  I read it very quickly and finished it on the train to work one day.  I literally bawled hysterically on the red line train while people stared at me.  It took me a few days to talk about it.  It was the only fictional book I have ever read that accurately described the experience of being sick.  It addressed the overpowering guilt you feel when you are seriously ill, the omnipresent worry that if you die, you will ruin the lives of those you love.  It addressed the awkward interactions between parents and their sick children.  And it also realistically depicted what happens when your disease progresses to a point that you lose control of your body, both physically and mentally. 
The change of seasons as fall became colder and less colorful was the backdrop to my disease progressing last year.  I read “The Fault in Our Stars” a few weeks before my bone marrow biopsy.  It affected me in a way few other books ever have.  It was heartbreaking both for the ways my story was similar and the ways it wasn’t.  It amplified the loneliness I felt in my damaged relationship.  It both validated my experience and reminded me that I was alone. 
I saw the movie yesterday with one of my oldest friends.  She has been on this journey with me from the very beginning.  It is weird to be a sick kid, watching a scene about eulogizing a sick kid, while sitting next to one of the people who will eulogize me.  It is weird to see my feelings depicted in a Technicolor teenage love story.  It made me remember things in my own life and feel them all over again.
When the movie trailer came out, I commented that I wanted to see it but wasn’t sure if I could.  I wasn’t sure I could handle it, especially as a big part of the book is being loved even when it gets hard and my relationship was so recently over.  As the opening of the movie drew closer, a lot of my friends told me that they wanted to see the movie with me. 
When you are friends with someone, you share a lot of things with them.  We share a lot of happy memories, and now I am sick, and we share that, too.  It feels lonely sometimes, but really my disease is a group experience.  Wanting to do this together is, in some ways, an expression of the fact that they are with me and they still love me even though it’s hard, and that they will keep loving me even when it’s harder.  It is a way to feel this pain together in a confined space. 
It’s funny the things that become meaningful in the context of your life.  To some people, it’s just a movie, but to me, it’s a metaphor for all the things that have happened to me.  It’s a way to share that experience with the people I love and grieve together for a little while.
 “Grief does not change you, Hazel.  It reveals you.”  John Green, “The Fault in Our Stars”

Grief

I have seen several mental health professionals over the years.  In 2011, I was trying to break in a new therapist.  The first few appointments always go the same and are always exhausting.

“Have you suffered any life-changing losses?” she asked, voice neutral, note pad on her lap.  I listed the people close to me that had died up to that point in my life.  She made some notes. 
Later on, I mentioned that I was comfortable conversing in both English and ASL.  She asked how I learned to sign and I told her that I had lost most of my hearing.  “Oh, that is definitely a life-changing loss,” she remarked, flipping back a page to list it in the appropriate section.  “You can grieve the loss of health or a sense the same way you can a person.”  I had never realized that before, but of course she was right.  You can grieve any loss.
Grief is, for me, the hardest part of being sick.  It is also the aspect I find people are least likely to understand.  Our experience with grief is largely confined to the death of a person.  This grief can be huge, all consuming, but in many instances, fades over time.  Not always, but often, it is easier to remember a person without pain as time passes.  Even this familiar type of grief is uncomfortable for many to watch. 
Grief because of illness is completely different.  It is a distinct entity.  You don’t grieve because you are sick.  You grieve because of all the things you have lost, friends, jobs, opportunities.  You grieve because the life you wanted, and all the things you wanted to do, became impossibilities as you watched.  I talk a good game about my life.  I like my life.  I really do.  But there are things I wanted that I will never have because of my illness.  It’s an unpopular thing to say, but it’s the truth.  I will never have the life I would have if I hadn’t gotten sick.
The thing about this grief is that it cycles.  It’s not always present, and when it will return is not always predictable.  You can never deal with it enough that it goes away forever.  I go weeks, even months sometimes, without mourning the loss of the life I thought I would have.  But something will happen, often something very minor, and this darkness will bloom inside me, spreading further with every beat of my heart. 
I have been journaling for most of my life.  I reread them every so often, just grab a bunch of them and read them in bed.  It used to be soothing.  It’s harder now.  I was so intensely hopeful, so sure that I could do everything, have everything, be everything, that I sometimes have to stop.  Reading these pre-diagnosis passages is like looking directly at a solar eclipse – you know it will be swallowed up in darkness soon, and it hurts too much to watch. 
It gets easier as time goes on.  It happens less frequently, but still, it is.  My grief follows me, a sort of shadow self.  Even when the sun is overhead and you can’t see it, it is still there, waiting.  The sun can hide it, but it can’t make it a memory. 

We all have shadows, after all. 

On losing my hearing

I have this philosophy about my illness, that I’m not my illness and I’m not my body.  It keeps me sane a lot of the time.  It is easier to see it as something separate from me, an antagonist.  It is easier to not feel complicit in all this.

I started feeling that way when I lost my hearing.  I lost it in 2009, and never got it back.  I have no hearing in my left ear, some in my right ear.  The hearing in my right ear fluctuates.  I stopped seeking technological interventions when I was accused in 2011 of Munchausen’s by a specialist and referred to a psychiatrist.  The psychiatrist agreed I did not have Munchausen’s.  I never tried to get a hearing aid again. 
A few short weeks after the appointment with the psychiatrist, I was diagnosed with mast cell disease.  “We’re not sure why, but a lot of people with this disease have trouble with their hearing,” the doctor agreed kindly.  I cried when he told me.  It felt so final.  A tiny part of me had always hoped that once I was diagnosed, the treatment would give me back my hearing.  But it didn’t, and it won’t.  I am Deaf.  I will be Deaf for the rest of my life.
It is impossible to describe how it felt to lose my hearing.  It was like slowly bleeding with no way to stop it.  There was panic and anxiety.  I couldn’t focus on anything else.  And then eventually, it stopped.  I was damaged, and I moved on. 
The thing about your hearing is that you use it for everything.  I had never even noticed.  Very early on in my Deaf life, I looked both ways and stepped into the street.  A friend pulled me out of the way just before a car hit me.  I had seen the car, but because I couldn’t hear it, my brain told me it wasn’t moving.  It was a jarring realization that I used my hearing to keep me safe, and now it was gone.  The whole world felt different.  It felt alien.
Losing my hearing represents the first time in my life that I couldn’t make my body work through force of will.  In 2009, I was having joint pain, tiredness, fevers, rashes.  I had a few inaccurate diagnoses.  In spite of that, I could still make my body do whatever I wanted, even it hurt.  I could overcome the pain.  I could not will myself to hear. 
It was also the first time I had to demand accommodations.  I had to tell people to look at me when they spoke.  I had to get an earpiece to talk on the phone.  I had to request interpreters for medical appointments.  It was my introduction to self-advocating, and that has served me better in my adult life than any other quality.  I am not afraid to fight. 
I have adapted over the years to the point that I barely notice my Deafness.  I can hear on the phone if it is quiet; I sign well enough to use a video phone.  I watch the tv closed captioned, use a vibrating alarm clock and a lamp turns on in my living room when you ring my doorbell.  Learning to function as a late-deafened adult was hard but not impossible. 
In many ways, my hearing loss is hard to talk about.  It is still a wound, one that comes raw with too much touching.  The entire experience affected me and changed me in ways I could never have expected.  It was a loss I felt more acutely than anything else that has been taken from me.  It was the point of no return, after which I would never recover the health I had previously had.  My life is divided into two epochs: before and after I lost my hearing. 
But I owe a lot to my hearing loss, I think.  It forced me to learn another language, to become a part of a culture I had known nothing about.  I have made friends I would never have made otherwise.  I found out who in my life really cared about me.  It made me think differently about my health.  It made me realize that deafness was not a disability, but an attribute, a facet of who I am.  It made me realize that I could still have the same life I had before, if I wanted to work for it.
I recently went on high dose steroids to treat my mast cell disease.  It was a treatment I had been given for my hearing loss, one that worked, but was discontinued due to terrible side effects.  I woke up in the middle of the night a few months ago, and I heard a strange noise.  It was sort of a soft ticking, a sound I didn’t recognize.  I turned on the light and tried to locate the source.  I eventually realized it was the fan.  It had been so long since I had heard one that I had forgotten what it sounded like.  It was like being visited by an old friend.  My dosage decreased and this brief glimpse of my old life vanished.  The blades spun silently now. 
My life isn’t better or worse for being able to hear a fan.  It is a reminder of both my damaged body and the ways I have learned to live with it.