THE ORDINARY WORLD

Just before my Parkinson’s (PD) diagnosis the world was in the midst of the COVID crisis. This was a blessing in disguise for me. Sort of. It allowed me to refocus my time and energy to my adult kids who live with me. They are both on the Autism Spectrum. High -functioning, but in need of management in their daily lives. This was and still is all-consuming. My “Ordinary world” was and still is pretty much all about them and my changing role as their mother.

Forty years of my life has been spent working in theatre and film where I did production, management, special effects and more. In the immediate lead up to the COVID crisis, I managed a small space museum for five years. This was volunteer work, not my vocation, but I grew up very interested in space so I loved the time I spent at the museum. 

To be truthful,  I would do anything for my kids, but spending time at the museum was also an escape from them and my responsibilities at home. They are the most important people in my life. But when your “kids” are well past eighteen and are not “fully-cooked” it can really wear you down.  I could feel very oppressed by it all. You know the instructions on airplane flights telling you to put the mask on yourself first, then your children? That. That is what I was trying to do when I escaped to the museum. Get oxygen and some respite.

It is painful to admit that. But being a single parent of two neurodivergent teenagers (now in their 20’s), is very demanding. They needed and still need me to be their advocate and case manager. I have been managing all their finances, their day to day life needs and medical needs which have also been substantial due to other medical conditions they have. 

I have a desperate need for my life to be in order and make sure my kids have daily living skills down. It has plagued me to think about dying someday too soon before my kids are fully launched. It’s pretty much an obsession because both my parents died at age 65 and I am now 60. My own health issues, mainly Sjogren’s Syndrome and Fibromyalgia, have really interfered with my ability to manage our daily lives because of unpredictable pain and fatigue. Now add the diagnosis of Parkinson’s. I was not ignorant about Parkinson’s Disease (PD). I knew it was a lifelong degenerative disease. I knew enough to worry that it would dominate my life and change my ability to further help my kids. 

This worry is now ruling a large part of my existence and I need to get control of the situation. There’s no room in my life for any unforeseen problems. Getting my kids launched is daunting enough and fills out the schedule of my “Ordinary Life”.

CALL TO ADVENTURE?

The day I heard “you have Parkinson’s” wasn’t a shock to me. I had been
seeing my neurologist/MDS (Movement Disorder Specialist) since Spring of 2019 when I first noticed significant tremors. After two plus years of feeling in
limbo about whether or not I really had PD, my doctor ordered a DaT Scan to
measure any loss of dopamine in my brain, where it is stored. Well, the tests
were fairly clear and somewhat devastating. A lot of medical terms and numbers were written on the test results. All I really saw and understood were the words “significant to severe depletion.”
Before the doctor would fully diagnose me with PD, she prescribed Sinemet
(Carbidopa/Levodopa), the magic drug that takes away the tremors. She said if I respond well and my PD symptoms diminish, then we can confirm if you have PD or some kind of Parkinsonism. “…ISM”, what is that? Something that mimics PD but actually isn’t PD. Huh? Confused? Me, too.
It was really frustrating to wait for a definitive diagnosis. Anxiety was high.
Emotions were unstable because I didn’t know if I was reacting normally to not having an answer yet or if the anxiety was coming from the PD itself.

After 6 weeks, the wait was o ver. I sat in the exam room waiting for the
doctor to come in. After a pleasant exchange of greetings, the doctor launched right into telling me my diagnosis. She said, “Since your DaTScan showed a significant to severe depletion of dopamine and you’re responding to the Sinemet, I think we can say that you definitely have Parkinson’s.” (I’m paraphrasing a bit. The doctor used more medical terms.)

But all I heard was “this is Parkinson’s, not Parkinsonism.” I thought “Wow,
that’s great to know…wait that’s not great. What? Wow, I really do have PD.
What the Fuck! What now? Oh, my god!”

I became numb for I don’t know how long. The rest of the day I was seeing
things in a sort of tunnel vision, I heard nothing but “wha, wha, wha”. Like
Charlie Brown’s teacher. The smell and taste of food the rest of that day was
completely bland. In the next few days I started letting people close to me
know. I treated the news casually because I have had to deliver other news
about medical conditions before. (Sjogren’s Syndrome, Fibromyalgia, Celiac.) “So, Amy has another medical thing on her list. Ho hum.” Like the boy crying wolf, it felt a bit like my news was no big deal. Ouch! Aside from the family in my immediate household, I felt so alone.

REFUSAL OF THE CALL

After I accepted the diagnosis of Parkinson’s Disease (PD), I was fairly
swift in letting family and friends know about the diagnosis. I don’t think
I’ve ever been in denial about having PD, I think I’ve accepted it, yet I feel
uncertainty at times. I understand everything I read about the symptoms and
stages of PD and what is best for living a healthy life, but I’m not sure I’ve
fully embraced what it will take to live my best life with PD.

I know that I am also annoyed at having another “thing” to worry
about. It’s something else to overload my plate and stretch my focus. It’s something else that makes it harder for me to meet my responsibilities to help my kids, to function daily, etc.

But I’m tired of living with chronic illness. Its way too much work for one
person. Imagine how it is for me taking on the management of my kids’ chronic illnesses too! Now add PD. The symptoms are horrendous! I hate Parkinson’s.

CROSSING THE THRESHOLD

Now it is time for me to take some action. I cannot simply say “I hate Parkinson’s” and leave it at that. I have to do SOMETHING to move myself along.
As I think about taking the steps needed to accept and learn to live with PD, a formidable nemesis in the form of apathy has shown up. I am struggling daily to get rid of this apathy. Sometimes it feels like I’m just waiting out my time between attacks of this insidious feeling consuming me. I just sit waiting for something to happen, but nothing happens because I am so unmotivated. I sit on the couch, staring out at nothing. So I do nothing.

It feels like I’m caught up in trench warfare. It is wet, cold, muddy and there is the stench of rot and death. It’s stagnant. The officer in charge of that trench (my apathy) never lets me out of his grip. He oppresses me. I’m afraid to come out of the trench. As if I would rather deal with the horror of living in the trench because I know what to expect.

The trench is the threshold I must cross. I have family, friends, my doctor, all telling me it’s safe. Go ahead and cross. Get out of the trench. There are messages from allies (other PD patients, friends) telling me it’s safe to crossover, the silencing of guns, (worries, doubt),  and the sun coming out after a night of gentle snowfall (grasping and allowing hope in) all serve as the guardian on the other side of the threshold encouraging me to step out. To stop letting the nemesis influence me. To get over my apathy. It’s like the Christmas Truce of 1914 in some ways. The Brits and Germans cautiously emerged from the trenches. Meeting the enemy face to face and even exchanging gifts, singing songs together, sharing sausage, cake, and beer. Audaciously playing a soccer match together in that middle space where they met, and peace was shared for a day.  But do I go back to the familiar and oppressive trench when that truce has ceased, resigned to suffer, and perhaps die. OR do I go back to the trench believing that my fight will someday carry me over the threshold.

I don’t know what actions to take, I still feel overwhelming apathy, lack of motivation, but at least now I am willing to call my nemesis out. I can say, “I see you, I feel you and I hate you. I don’t want you here”. I may not know how to get rid of this nemesis, apathy, but I think at least now I am more willing to try.

APPROACH TO THE INNERMOST CAVE

I feel imprisoned by limitations. I cannot do the things I used to be able to do. I can’t do the work I trained for and enjoyed. I cannot help my neurodivergent adult kids to the extent they need support. I cannot enjoy a lot of social interactions, they overwhelm me now.  I need to break out of this Parkinson’s prison I’m in. Apathy is my prison matron. She is constantly harassing me and blocking me from escaping. Am I blocking myself?  I struggle with taking any initiative to bolster my health. (Improving my diet, exercising, getting therapy.) I have a numb and colorless notion that I am “doing fine”.  I think I might choose to live with apathy because as sad and obviously unproductive as that state of being is, I am comfortable there. No risks are taken. There is no responsibility.

 I am stuck and I need to break free.

At this point, I have reached out for more help from my doctor. She prescribed a new medication that she says will hopefully give me more energy and that may rid me of the apathy. I am now ready to jump into my van and accept the call to adventure. The adventure of learning to live with PD and the challenges PD presents.

I will try to find the strength and motivation to face my challenges. That very obvious and constant challenge is to stop existing in a state of apathy.  It feels like codependency and I have had enough of those relationships in my life that I know how destructive that is and I don’t want to live with those feelings! It’s just very hard to break away. It feels like I am left with no choice and now have to confront the apathy. Go fight it. Drag it out of the shadows, out of the cave it lurks in, waiting to ensnare me.

As I drive away I feel hopeful. I want to go into the cave with conviction that I will find the tools I need to take control of my life back from my nemesis, apathy.