Daily dose of Navigating Schizophrenia
Fri, Feb 20, 5:00 PM
We were supposed to be enjoying a weekend away from it all. The room was booked. The tables at the festival paid for. The postcards stacked up next to the desk for transport.
Instead, today, Divina sat in the car while I was worked into the Doctors schedule for my back. It, my back, has been holding the weight of my pain and heartache, and it said no more. Our vacation weekend away, quickly turned into a staycation, in this dingy old trailer home that we share with my husbands sons. Divina, in her loving manner, quickly gave me the permission to let it go, to not feel sad, and to rest for recuperation.
She is the glue that holds me together. I realize often that I have never met another human on this planet that is quite as genuinely loving as her. I’ve met 100’s of thousands of people. While I am biased, it is also true. I dare you to meet someone quite a wonderful as she.
She carries the weight of the world on her mind, often mentally and emotionally sacrificing for what she thinks is humanities complete existence, that is what schizophrenia tells her, yet she makes no demands of another.
As a caregiver, schizophrenia took many things from both of us. She lost much of her memory, I retain it. She lost some of her give a damn, mine became confusing. She will never be the same, but I still search for little glimmers of the baby girl I know and raised.
Surely, many parents have this juncture of their babies suddenly being grown and independent, and almost unrecognizable.
Her independent adulthood was a marvel to me and a whirlwind, nothing I recognized as a child. Willfull, determined, focused. She is not the same person at all.
We’ve grieved the loss of old Shade. We are entering 3 years of the diagnosis and the 6th year of the first recognized break. Now it’s time to accept life as we know it now, and build a way to thrive. Part of this was me letting go of dreams to build a hobby hustle business on the side. There is no other side to life now except for Schizophrenia, Shade’s thriving despite schizophrenia.
It’s been the goal all along, but the ways of the world are that we hold onto old dreams easier than try to build new ones. The gods in Divina’s head are determined to push our limits and horizons. I have just had to learn to surrender to this path, but I’m stubborn. Shade is too, I wonder where she gets it. 🙃
Staycation mood, lay down as much as you want. Let the pile of correspondence be for a day or two more, all are important, none urgent. Work doesn’t need to know we just stayed home. The room was cancelled in time and should be refunded. All is calm for the moment.
Divina’s triggers are very much affected by my own anxiety and behaviors. She has had a lifetime of 30 years to observe my mood and how it belies my calm words.
We have a ritual, when we go to Peace River for treatment of any kind, we take the time afterward to ourselves for a meal out to eat. It’s our hangout time. I keep a very open generous mind for her pick of the restaurant and she has luxurious taste. It’s really hard to tell her no, because she is in so much turmoil every moment of her waking hours. Plus, she does reveal things to her care team that she does not say directly to me, such as, the voices also are speaking the whole time she is asleep as well. We have to keep the lines open, and treatment is a main lifeline.
I am NEVER going to stop being overwhelmed with schizophrenia. It is ALL CONSUMING, and if I’m going to have to pay my dues, I’m going to accept that everyday will be a new and different kind of wild.
Some of the realizations that my body has revealed
First priority-Shade, her physical, mental, emotional needs, is a tax my body is willing to pay
I am not physically well enough to create a hobby hustle business, my heart will have to accept it
By allowing myself to let the old season go, it opens up greater good for Shade
There are many more people out there like my daughter who have no one to advocate for them
There are many things to investigate and experiment with that could be more useful to the SMI community, more important than postcards and murals
I can still incorporate my hobby loves into the mix in different ways later on down the line, maybe a book, maybe a group therapy session sending postcards
A new season of finding a way to thrive with schizophrenia, will not erase the beautiful seasons that have already existed. It will just rearrange things.
Who doesn’t crave a reorganization party… maybe after my back heals some.
I have also had some very stark realizations
I must work fulltime to support Shade and that leaves her vulnerable for a couple hours a day, guardianship is not paying for me to stay home with her
It will be a couple of years before I can take my SS retirement, and if there is any left, it will not be much
We will be constrained to those 2 limited incomes, we cannot count on anything else
I will have to plan an estate with that in mind that will outlive me within those circumstances
I do believe the mind is powerful, Shade is proof. She believes she talks to gods. It stretches how I think of the universe, She pushes me to stretch more. I am not settling within the above constraints as a locked in box, but more as a foundation grounding point for our structure to build sturdy. If we fortify correctly from the beginning, surely we can build limitlessly.
That being said, we are saying goodbye to Postcard Whisperer, Gratitude in Bloom, Saunter Club, Mural Passport, Hacienda de Amor, Books with Nudists [for my brother’s hobby blog]. Indie Maker Mode domains will disappear, but Medium will archive the articles. LaLa Indie Maker will continue as a bio link to my project archives and anything new that pops up later from Navigating Schizophrenia.
Grateful4.club will still go on over on Medium with no exclusive domain, but there are so many great writers still submitting articles, and it feels selfish to take it down. We will have to see if I can find another editor before October Medium renewal. Please DM if you are interested.
All of the socials for all of the projects will come down, it will be a lot of work and hurt my heart, but it’s necessary to be completely emotionally loosed from those ties.
There is still the Indie Maker Mode work station that will need addressing. I will donate my extra postcards to the Sunshine Postcard Club. I will stop being a member of postcard clubs for the short-term, Hoping to visit again once I have retired from the JOB. My personal collection will be small.
This picture really bothers me, because it is so real. Our home is humble, it has been left behind in its care the last couple years. It must be dealt with. It is a big source of my stress and tension with Divina. We need to find our forever home and get set up there streamlined for schizophrenia and the pace it sets for us. That will mean less is more, more time for each other, more time to get outside, more time to advocate for others, and hopefully a few more vacations and planned staycations.
I do hope to be documenting more of small situational daily happenings in notes or the chat which I will archive in a section tab maybe, if Substack and time allow.
Writing fires my mind up, when I finally sit down to write, It dreams up all the things my body cannot later produce, so we will take it day by day.
Somethings I would like to do for this newsletter
Highlight resources for others
Have an active chat for questions
Document more often Divina’s daily activities, mostly for my own memory
Find ways to advocate that will not tax Divina nor my body, so we can have longevity to help others
Continue sharing our joyride adventures, tho currently they have diminished
Thrive before all else
I must go, Shade is hollering out to the “Dear Lord” outside. She might feel she is being spiritually attacked.
False alert, she was back inside pacing before I could get my aching body off the couch. Pinched nerve is slowing me down.
You can always help Divina on Ko-fi.com/mijadivina the funds go to her legal support for the guardianship that renews annually
You can also become a founding member of the newsletter, we hope to meet personally at SMI conferences for the first 100 founding members.
Official charities that we support are
Peace River Center -we donate to the thrift store our previously loved items that we can no longer use
Stay Positive | Be Blessed | Share Often
LaLa & Divina 🫶
Thanks for sharing. I’m glad I can still follow you on here. I hope, as a survivor, I can help in some small way.
I'm sorry the side hustle is dying. I know how that goes. I'm told we must go through a grief process with things like that. I keep you and Shade in my thoughts and prayers.