MOURNING THE LOSS OF ME

Not a day goes by where I don’t feel some grief. 

Grief of losing the lively person I used to be before myalgic encephalomyelitis (ME) derailed my life overnight in August, 2013. Exactly eight years ago today. 

Grief of the person I had become and accepted prior to every further deterioration.

Grief of losing the ability to experience life and the natural wonders of the world.

Now I’m 95% housebound and spend most of each day in bed with my legs raised on cushions. This is to help prevent many painful and debilitating symptoms from worsening. The simple act of sitting upright for too long will bring on post-exertional symptom exacerbation.

Leaving the house for an appointment, running a simple errand or meeting a friend for coffee can substantially worsen my symptoms for a week or more. Anything greater than that can worsen my baseline for months or permanently.

On days when I can tolerate reading the news, scrolling through social media, or streaming Netflix for short periods of time, I am constantly reminded of the life I have lost. When I visit the doctor and see people “out and about” doing their normal thing, I’m reminded of how far from normal my life has become.

Every single aspect of myself, my skills, creativity, expressiveness, intellect, attentiveness, dependability and personality have mostly been crushed by this disease. Everything that makes me who I am has been stripped away little by little as my health has deteriorated with each “crash” from viruses and “pushing through” over the last eight years.

I keep trying to reevaluate my purpose in life to fit within my ever shrinking limitations. Each reevaluation brings with it another twinge of grief.

It’s no wonder suicide rates are six times higher in people with ME than in the general population. I’ve had some dark days myself where I’ve had to convince myself to stay alive, despite wanting to live more than anything.

I convince myself to stay alive – if not for me – for my family. I don’t want to inflict more pain on my loved ones, who are already grieving the partial loss of their wife, mother, daughter, sister, aunt.

I convince myself to stay alive – if not for me – for the millions missing from their lives, who also grieve the many losses chronic illness has stolen from them.

I convince myself to stay alive – while repeating to myself –

Love is stronger than pain.

Love is stronger than pain.

Love is stronger than pain 

My love for my family, friends and humanity is stronger than my pain. I draw strength from the love around me to help endure the pain each day brings.

What else can you do when you’re too sick to participate in your own life?

I search for little pieces of happiness throughout my day and meditate on all that I’m grateful for. However, the smaller my life becomes, the harder it is to find meaning and enrichment in my day to day existence, but –

love must win.

I convince myself to stay alive. There might be a treatment breakthrough just around the corner, so I can reclaim some or all of those parts of me that have been stolen, and retain the inner-parts of me that have grown, such as: empathy, compassion and appreciation.

And with that, we – the millions missing – would bring greater love and light to this world.