“She Keeps to Herself”
Before I start today’s writing, I would like to correct something I wrote last week. And that is, I wrote that there is an RSV vaccine, there is not. I fact checked myself, because I knew they had discovered something, and there is a treatment that high risk patients can be given. Therefore, I pass on this information and urge you to fight for those who are too weak to fight right now. https://www.cdc.gov/rsv/about/prevention.html
Now to today’s writing…
Have you ever heard this comment made about somebody? “She/he is just shy/quiet/private, so she/he just keeps to themselves most of the time.” It’s funny because when my grandparents said it, it had the feeling of respect, possibly understanding of what that person had experienced or was currently experiencing. However I have seen a gradual, almost cruel transition of this phrase to insinuate, agoraphobic, depressed, paranoid, unwilling behavior. Both of these “assumptions” of this phrase have truths and have harmful lies. As me and my paw-paw joked, but its true, you know what assuming does… (assYOU&ME) 😔
I could write a lot on the truths and lies, and how our world could do a better job of denouncing the lies and building on the truths, but today I am going to stick to my experience and my truths.
Last week I shared the timeline of my diagnoses, and how one effects the other, and so on. I mentioned that many times people I encounter have no clue what I am dealing with, because so much of it is simply invisible on the outside. I never fault anyone for forgetting a diagnosis or medical struggle that I have experienced or live with daily, there’s a lot. My family can barely keep up, and that’s what spreadsheets and MyChart is for, we may not be any kind of record breakers, but we are five star record keepers. Nothing that will hit Ripley’s believe it or not, but it will make a doctors office or hospital stay on their toes!
When I was little, my parents would get this comment about me, “She sure is shy.” or “She is so quiet.” Well, that was hilarious! I may have acted shy or quiet, but that was just my stubbornness. I once told my mom, when she asked why I didn’t obey and look someone in the eye, (this was a biggie in our house), I responded, “Not in my world.” Yep, I know now to look people in the eye when they talk to me. 😊 But shy, quiet, more like spunky with few and simple words, but when I opened my mouth, most people knew to hold their breath! (I mean look at me in the picture above… the baby in blue, I named her “Napkin” original right?)
Now, as an adult, I get the comments, “You should go somewhere fun.” “You need to get out more often.” “You need… You should… You are going to… Are you…” Funny how the opposite is not “acceptable.” As a child, the above comments were something that I was motivated to prove wrong, because I knew better. The comments as an adult, although I know most people think they are encouraging, they actually feel like an attack. An attack on my faith and my trust in the One who shows my the path He has laid out for me, which feels like an attack on every part of my mental, physical, emotional, spiritual self.
A few glimpses at what I wish others understood and what I have learned through my heath challenges, and why the above comments/suggestions become out of line:
- I wake up everyday, and try to say, first thing, “Good morning God, this is your day, thank you for another day, show me your way.”
- The feeling of continually letting others down, having to change plans, only increases the pain. And comments above increases the shame of letting others down again and kills the courage of being honest about what I need in the future.
- When you have a diagnosis that effects your nervous system – every part of your body is effected – sound, smell, taste, touch – your body is a sensory explosion waiting to happen- like a pain volcano waiting to erupt.
- As someone whose brain simply works differently, wired differently, my thoughts are running constantly, about 10% I can vocalize, put words to, and the rest will either work themselves out of my head, or end up on paper or on here 😊
- The biggest lesson, and what I would really love for the world to understand is this: individuals have same diagnosis, yet have different symptoms/effects, no two people are exactly alike. Two people with asthma are not going to have the exact same story, and the same treatment plan. Same with migraines, same with ADHD, depression, anxiety, GERD, blood disorders, etc.
- It’s okay to have limitations, it’s more than okay to speak truth about your limitations. But we need people to listen and really hear and respect us.
- Bottom line: I am doing the very best I can, with what God has given me today, I am trusting Him to lead and guide me, and He has been faithful.
I jotted these words down during a migraine attack not long ago, this is hard to share because it is raw and open, but I know I must share…
It never gets easier to say "I can't" In never ceases to stab my heart My humanness never fails to scream "Weak!" "Failed!" "You've done it AGAIN!" My brain never ceases to belittle my reality I will always battle speaking my truth I will always battle thoughts of "you are losing people because of your reality" I will always fight the fear of the loss of those leaving me behind I will always feel judgement I will always have the echos of things said that pierce my head and heart at times of great pain But I forever will have God to hold me Guide me, and I must put Him first before myself and others Because He is ALL knowing, ALL seeing, ALL powerful and He holds my life in his hands.
If you want to refer to me as one who keeps to herself. In the sense that, 1. It’s really visible now how much I like to “keep to myself,” now that I live in a neighborhood, verses where I grew up on spacious land. 2. In all reality, I just love being home. 3. My priorities combined with day to day reality and survival, is a balancing act that honestly, I surrender to God everyday, and trust Him to direct each step, one step at a time. Then, I do not mind being someone who “keeps to themselves,” because I am stand firm in Whose I am, confident in who I am, growing in the knowledge of my limitations and boundaries, plowing through the painful and difficult, and in due season will reap with shouts of joy, and in the meantime, I am thankful for every single experience, diagnosis, hard, good, scary, funny thing that has brought me to the me I am today.
Life Book of the Week: “Compelling Interest” by Roger Resler, The Real Story behind Roe vs Wade. I’m being bold! (Something I don’t keep to myself about 😊) This book is not for easy reading. I read this book right before I began the adoption process, this book actually was one of the big influences on me and my heart toward adopting even though I was single. As a pro-life woman, I was convicted that I can’t just say I am pro-life and not know the facts to defend my position. These facts are as important as all my medical information facts I have collected, because these facts have potential to save the next generation… I encourage you to get the facts.
Also, going on right now is 40 Days for Life,
