What will people think?


Pity vs. Compassion

Weak vs. Tired

Quitter vs. Fighter

I am writing this week from the famous Riverwalk in San Antonio, TX. My fave had a work convention and some client entertaining to do and since I am a lover of all things Southern, cultural, and historic (and love San Antonio but have not been here since my beloved Cats won a National Championship in 1998) , it seems reasonable that he would ask me if I wanted to go. A year ago, “Abso-freaking-lutely yes!” would have been my response but 50 weeks ago a “still don’t know what I did to hurt my back” kicked off what has been a year of pain that has been way beyond physical pain that I have sort of battled for a lifetime. A diagnosis of being on the Ehlers-Danlos Syndrome spectrum (EDS) explained so much but it also brought with it an ugly truth: a lifetime of frustration with a rare disorder that can be somewhat managed but can’t be cured. And the fact that it was another “invisible” disorder was even more awesome (not)! So when the ask came for a this trip, I said “Sure.” but my brain was screaming “Are you crazy? Airports, luggage, long flights in cramped seats, walking a city and convention for 4 days, while in the midst of the boys’ golf season that means long rides in the car and walking thousands of yards each day…seriously, did I really just say yes?” We flew out Saturday morning but on Friday night, I almost backed out.

The month of June marks a rocket-type launch into golf season for us. As the boys get more competitive, so do the courses (and the cart paths that mamas use to follow their babies who are chasing a dream). On a good day, walking isn’t so bad (the next few days are a different story) but a golf cart is never an option for lots of reasons, so I walk or don’t see them play – how’s that for “option bad” and “option worse”. In the last 2 weeks, there has been more than 50,000 yards of golf walked, a trip to Columbus for a country concert, and 3 long, but tank-filler, days of work. My pain med of “choice” is Tylenol because we are in the midst of an opioid crisis and no insurance company on the planet is giving the mentally unstable folks anything remotely pain-killing in nature for more than 7 days (a rant for another time), so Tylenol twice a day it is and it simply takes the pain level of 8 and makes it a 6. Add in that I sleep maybe 90 minutes at a time and then spend 30 or so waiting for the pain to calm down enough to go back in for another 90, suffice it to say that the last thing I want to do is get on a plane, be gone for 4 days, and hit the ground running to 6 days of golf tourneys (one of them in Lexington) and a company picnic when we get back. As we are packing Friday night so we can get on a plane at 6 a.m. the next morning, I am not at all the best version of me and after some heated words with my fave, I end up on the bathroom floor in a pile of tears, cursing the pitiful excuse for a wife and mama and friend and business partner and human in general that I now am. Oh the lies we tell ourselves! Luckily, the words of two members of my tribe started to find their way into my head and the voices of ick that had just said “Just please wait to leave me until after the boys are gone and then find some woman who can be the wife you deserve. I swear if it wasn’t for you and those boys, I would end this pathetic excuse for a life.” started to get quiet. (Let me be clear, I struggle with suicidal thoughts; I AM NOT suicidal. There is a difference – another post for another time.) In that quiet, my fave knelt down next to me and whispered, “For better or for worse; sickness and health; good times and bad. Sorry honey, you are stuck with me.”

The thoughts from my tribe that quieted the voices so that I could let myself be loved:

I had lunch with a business partner, turned tribe member, about two weeks and what made it awesome was we talked about her almost the whole time! As we got to the end of our tank-filling time together, she simply said “Can I do anything for you? Is there anything I can be praying about?” I shared that I was struggling with being really honest with people about my condition because when you say chronic pain and EDS, it is usually met with first pity and then a blank stare. So then you explain it which leads to more perceived pity and then this guilt because people want to fix you and offer advice to help and pepper you with “Well have you tried…? What about…? Is _____ an option?” Well-meaning and so appreciated but when you are trying to accept a lifetime diagnosis and the people you do life with lovingly just want to fix you, acceptance becomes super hard and then I feel bad because they feel bad for not being able to fix me. Commence the downward spiral. So I asked my tribe for prayers of peace and she said “Done.” but also encouraged me to not stop educating people because that is how we end stigmas and raise awareness.

The other tribe member got a text from me a week ago, while masking the pain that a summer country concert in a stadium now brings but that my fave gave me as an anniversary gift because my celebrity crush was a featured artist, that went like this:

Me: How do I find the courage to really express what new normal is while silencing the voice that says “He says sickness and health and all that but does he really mean it? Cause the mentally ill you was already more than a husband should have to deal with and now there is this 100 year old in the body of a 46 year old he is stuck with when the empty nest is just in front of you and the kids won’t be around to make him stay.” So tell the icky voice to shut up!

Tribe: Ok. Shut up! For real. He said the words. Hasn’t he proven he means it? (but I totally get why you feel those things. It’s completely normal. “he didn’t sign up for this” kinda thing).

Me: I’ve tried to hint to my guys what I really need.

Tribe: They’re dudes. They don’t do hints.

It is fitting that home for the next few days will be a gorgeous 200ish year old former general store, now a historic boutique hotel, that overlooks San Antonio’s Riverwalk, among the most beautiful and lively places you can imagine. Old and faith and beauty and the past surround you here; even the Macy’s and McDonald’s are housed in buildings that both inside and out make clear the history this corner of the world considers to be a badge of honor. Not even a morning of travel, an afternoon of walking, a long lunch, more walking, and then sitting down for drinks before heading back to check into the hotel could dim the very clear message He had planned for me on this trip:

The beauty and inspiration of our former “normal” doesn’t go away just because a new “normal” takes over. It might be a “was” but parts of it can still be seen during the “is”. He promises to make really beautiful things out of our very broken pieces; don’t believe the lie that tries to tell you anything different.



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