“Sat nam” in a yoga tradition roughly translates to “true self”. This is a picture that was taken of me after a kundalini yoga class this morning. I manage to hide a lot of physical pain behind that smile and more, which I will explain. There is no filter. This is just me as I am naturally.
Ever since I made a conscious choice a couple years ago to not live in the misery of a past that gave me a diagnosis of CPTSD, I have been on a hunt for community. Many of my old friends and chosen family were not appropriate for a new self that was going to live with strength, integrity, and build a foundation of self love by doing loving acts towards myself each day.
I went from subsisting on donuts, cigarettes, and Diet Coke to a minimum of 7 fruits and vegetables a day, deep breathing practice for meditation, and exercise as I’ve been able to daily. I traded reality tv for nonfiction books. I swapped relationships that made me feel bad to enjoy aloneness as my meditation teacher once pointed out to me, “Lizzie, it is better to walk alone than among fools”. It’s advice I still hold near and dear.
I was injected with mesenchymal stem cells derived from umbilical cord tissue that is donated from healthy moms who had healthy births in hopes to get my systemic inflammation under control, help cure autoimmune diseases, and improve my neurological symptoms. This happened December 17th, 2019.
My neurological improvements can only be described as like I glide again instead of being clumsy. I still use my forearm crutches or wheelchair when leaving the house, but my ease of movement has improved a lot. As for the inflammation and autoimmune diseases that can be tested later as those aren’t changes I can feel necessarily.
As for community, I have looked many places, well as many as you can when you have no regular schedule of getting out. Most of these communities have been wonderful, for a very brief time.
When I first realized that I was going to genuinely be sick for the long haul and foreseeable future, if not forever, I read a book called, “how to be sick”. It’s a great read. One of the biggest things I took from it is that people WILL forget about you and reaching out becomes the sick persons responsibility in many ways. So over the past couple years, I have worked hard to ask others how they are doing. If I hear a healthy friend doesn’t feel well, I know it’s hard on them as being sick is just plain hard. It doesn’t matter if it’s for a week or a lifetime. I offer to give care. I’m always rejected.
So community has been a hard one for me. I kind of joined a local church in hopes of finding community. I have met many extremely kind people there who preach the importance of community. I thought I had found a bit of a home even though my spiritual leanings will always remain open minded and will continue to respect, admire, and be inquisitive about any path that is about love for self, others, and community.
As I said, I have met some very kind people through this church. After 2 weeks of trying to find someone who could give me a ride on Sunday and checking in on people without a response as to how I’m feeling, I’m kind of in a place of wondering if I turn to a new place? The spirit of community doesn’t feel quite so community like if I’m not self sufficient. It’s ok. I’m learning.
When you are chronically ill, at least for me, I don’t want someone to care take me. I want the time for a phone conversation or for someone to stop by or for someone to give me a ride 3 blocks away to a Sunday service.
I worked hard on my reaching out skill the past couple weeks I learned from that book. I have also been reading a book about boundaries and it clearly states that if the other person gives nothing, then you leave it behind as no one deserves crumbs.
I understand people get in hard places. I definitely do too. This past month, I have been beyond sick. I can usually take care of my basic needs, but this month has been really different for me. There’s a lot of fear in not being able to care for yourself when you don’t have family and realize your insurance policy wouldn’t even pay for you to go to the worst of the worst nursing homes.
It’s been a lot to hold, but I hold it as I reach out to others who I know are having a hard time with just the response of “thanks for asking”. There’s no asking how I am. I realize it sets me up once again to start taking care of people’s emotional needs instead of focusing on mine and my pretty bad health crisis. People know I don’t feel well and especially this past month. I like how the French say it c’est la gueurre”, which is essentially “oh well!”
So without anyone saying “yes” to giving me a ride to church today or last week that was feasible and only feeling useful when people need me to show up, I was delighted to get a personal invitation to a kundalini yoga class this morning from a teacher that has met me twice. She has inquired about my stem cell progress a few times, has given me some cheerleading along the way and when I showed up this morning, she was so excited to see me and was given a huge hug.
After class, I met some other ladies that we exchanged real hugs, which is exactly what this extremely tired, sick, and disillusioned soul needed. My yoga teacher exclaimed to her inner circle around her after that “we have a miracle among us!” She meant me with my stem cell progress as she has asked about it. She wanted to know.
I understand it’s weird and many people have no clue what I’m talking about. My diagnoses are rare leading people to not understand and often aren’t interested or it’s just confusing. My body confuses me, so I can only imagine for other people.
It was just nice to be around other people who reach out when they are troubled. It was beautiful to be around people who give genuine hugs. Kundalini yoga can bring up a lot of emotions as today was about releasing pent up anger and opening our hearts. It was refreshing that during one of the chanting meditations, I wasn’t the only one with a few tears. One lady was downright sobbing, but she was still fighting through to finish the meditation. I admire that type of courage and authenticity.
I think only people genuinely committed to yoga and/ or a generally healthy lifestyle or emotionally healthy/ or working very hard on it understand the power of connection like we had today and that many there might have wanted to hole up and stay in and binge watch Netflix as my church buddies have all been stuck in, but the people that filled this room decided to do the hard thing and get out to engage in a powerful and moving yoga practice. They were out!
I know everyone evolves on different timelines with how they reach out and ask for help within their community. I personally need people who try regularly as it’s what I do. I didn’t always for sure. I spent a lot of time holed up in my home paralyzed emotionally to get out, so I don’t have judgment. This blog is about what has worked for me. I’m grateful I didn’t get sucked into my pattern of trying to save others today and right now.
We can walk beside each other in our pain, but you have to come out and ask to be walked beside. I haven’t left my house for barely a month, but I have certainly asked people to walk beside me. Most didn’t and probably won’t, but a couple will as they find time, and my search for community will grow as I meet the people truly in sync with where I am.
I’m grateful to know a couple solid people in how they care for themselves. I also seem to attract a ton of dysfunction that I want to cure with my magic wand. I have to say to myself, “Lizzie, step back. They don’t want your help or aren’t in a place to receive your love and groveling to make them want to spend time with you is a waste of energy”. The book about boundaries taught me that you don’t close those doors, you just leave them be.
If you ever want to go down the journey of healing from trauma or depression or anxiety, it’s certainly not easy, but you have to be the first to ask for help. I will joyously walk beside anyone willing to do the work.
This picture came from some freelance writing websites requesting to see me in my “natural habitat”. I could fill several volumes with pictures of my being sick, but I can’t fill quite as many with being radiant and sick. It’s an exciting time for me if I could just get well enough to take advantage of so many opportunities.
And tomorrow, I have an appointment to see if my Epstein Barr has escalated. I am going to take care of me medically as I have some extremely troubling symptoms that I ironically feel well enough to finally go get checked out. Stem cells are a serious blood product as is my monthly IVIG, which can come with a host of bad issues, so keep me in your thoughts on January 20th that I get some answers about why my body is so destroyed and things are getting worse symptom wise for me. My symptoms are extremely uncharacteristic of how I normally feel sick. It’s scary, but I will bravely face it with or without anyone next to me as sometimes we just keep going as it’s what we do for the pure joy of taking care of OURSELVES!!