The Quality of My Life

I remember laying in bed, circa December 2009, praying that I’d die before I woke.

I haven’t wished for that particular sentiment since early March 2010. That’s twelve years.

This month is suicide prevention month, but this post isn’t about suicide or the prevention of such, it IS about the quality of my life.

There’s something that goes through a person’s mind when they hear the supports that they need to live a full life, being equated to being dead.

To understand that other disabled people actually see the need for supports such as caregivers and wheelchairs equal to ending their life, is disheartening.

Let’s go back to that invisibly disabled and chronic pain patient that I was in 2009.

In August of 2009, I had been discharged without notice from a urologist who had been prescribing fentanyl patches for my bladder pain.

I had been prescribed fentanyl patches for over seven years at the time I lost my prescribing doctor. I had been attempting to replace my Primary Care Physican (who had moved into functional medical care on call, something still not covered by my public heath care), without luck.

When I would call doctors offices to inquire if they were accepting “new Medicare patients,” I would be told that their quota of Medicare patients was full. The next sentence is what really took me aback, and I would have been surprised, but it was something I was hearing every time I called a new doctor’s office:

“We won’t have a space until a Medicare patient passes.”

Nothing like waiting for another nameless, faceless person to die so I can have medical care.

What I didn’t realize back in 2009-2010, is that the process of going through the worst health crisis in my life left me with more respect for my life than I ever had before.

In March 2010, after both my husband and I survived the flu, I walked out of a 22-year marriage with nothing but the clothes on my back and started to take control of my life.

That may sound empowering, but it was also all symptomatic of having a severe mental disorder: Dissociative Identity Disorder (DID).

I’m aware of the discussion about whether DID is a mental illness or disorder or if it a neurodivergency. Personally, I believe it is both.

I believe anyone who is diagnosed with DID needs at least ten years of intensive therapy and should be classified as disabled during that time. But I also hold the opinion that living as a functional multiple is not only possible, but also not such a bad life to live.

I/we don’t get lonely.

Back to the subject of my quality of life, now that I have resolved when I stopped attempting to take it.

My chronic pain did not resolve when I went off the opioids. In fact, the withdrawal symptoms lasted for years and were anything but pleasant.

But after March 2010, I didn’t wish to die.

Instead, I made plans to write books. I began writing blogs and sharing my experiences and observations in earnest on social media.

I made a choice to leave everything I ever knew behind on October 10, 2010 at 10:10, in search of answers to questions I didn’t even know when I left.

After being homeless for 7.5 years exactly, I finally found a home back in the same apartment complex I had lived as a young mother in 1987-1990. It was where I lived when my first husband and I married, and we brought our daughter home to. There were happy memories on that piece of land.

While homeless, I didn’t get strung out. I used my income to take up my friend’s invitations to explore the nation through their eyes. At the same time, I explored my inner world. Yet the diagnosis of DID wasn’t to come until 2015.

I also went back to school. I had to stop each of my three community college programs and go to work to support my family. I had been told in my early life that I couldn’t earn a living writing, but now that wasn’t my goal, maybe I was now free to write?

What does any if this have to do with my quality of life?

I made it halfway through studying for my Master of Fine Arts, when the pandemic and an addicted family member combined to give my established supports a run for their money. Then, my brain switched to a personality that could not do my schoolwork, but it managed the global trauma event. I was forced to drop out of grad school.

What did I do? I spent time focusing on healing from my own trauma.

I acquired answers with my DID diagnosis in 2015, fluoroquinolone toxicity diagnosis in 2018 (after antibiotic injuries in 2012 & 2017), Ehlers-Danlos Syndrome diagnosis in December 2019, and Autism (and related syndromes) diagnosis in 2021. Then came this year’s diagnoses of fibromyalgia and lymphadema.

Answers in the form of diagnoses equal validation. That validation for me increased my self-worth and gave me more energy to advocate for myself.

I learned what supports would help me live my best life. I learned that a powerchair and caregivers are needed in addition to my dogs who love the support people in my life as much as I do.

When the pandemic was at its worst, like many other disabled people, I was forced to have the POLST conversation with my doctor. The real fear of having medical care rationed was equal to the concern that I wouldn’t be one of the people who would be deemed “worth it.”

POLST form

It was that particular paradigm that has caused many disabled people to have to live in a continual state of being forced to defend our right to live and take up space that could be filled by “wage earners” and others with “more potential.”

When I started listening to and watching videos other disabled and neurodivergent people produce, I began to realize just how many people have been trapped without a method of communication to the outside world. In my mind, that doesn’t make their lives less important, in fact I believe that we NEED to see and hear these stories of all people using all methods of communication.

How else will we, as a society, develop the empathy we need to have to value people as something more than a cog in a factory?

Why didn’t I develop my writing talent when I was younger? Among many other things that happened, I was constantly told that I “couldn’t earn a living” writing.

It was a self-esteem dig, but it was also the reaffirmation of where I was in society: It was going to be my job to earn a living.

Just because that piece of my life is over, does it mean my quality of life is done?

Not to disappoint the insurance companies too much, I have an amazing quality of life. I’m finishing my first book and I have several more outlined. I have a quite a life ahead of me and it is worth more than an insurance adjustor would like to imagine.

I have finally identified the supports that I’ve needed and I’m getting them established to assist me to live the life I’ve wanted to for 55 years.

Now, I spend every day racing the clock remembering the days I wasted wishing to die.

My story isn’t everyone’s. But we need to make space to watch, read and listen to more people’s stories that are different from our own experiences if we are to grow.

We can’t just eliminate differences, we must embrace them.

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