Friday, September 20, 2013

A Paradox in Life

Each day, I get a variety of inspirational quotes or other words of wisdom. Earlier this week, here was my "Daily Flame" from "Your Inner Pilot Light":

"You know how sometimes you feel inferior to others, and other times you feel superior?  Darling, this only stems from a misguided notion that we are not all One.  So many suffer from the illusion of separateness, and it leaves you feeling different, special, and unworthy, like everyone else belongs - except you.  But know this. You belong. We all belong. You are not less than or better than. You are equal to every other soul on this planet because every one of us has within us a little spark of divinity that makes us worthy. Know who that little spark of divinity is?  Moi! 

When I read that, it was not long after I had posted THIS gem as my Facebook quote of the day: "Criticism is just someone else's opinion. Even people who are experts in their fields are sometimes wrong. It is up to you to choose whether to believe some of it, none of it, or all of it. What you think is what counts." ― Rodolfo Costa

A moment of raw honesty: I have always struggled with my relationships to others, particularly in feeling "less than....." I don't know when it started, only that I've seemingly always lived with it. If you have never faced this, God bless you. If you've lived it (like me), then you know. I don't have to say a thing for you to know how this feels. Why ..... Why do we torture ourselves with the belief that we are somehow greater than or lesser than another human, also made in the image and likeness of the Creator? Why do we allow ourselves to feel as if the person standing in front of us is somehow more special or a better person than we are?

A few years ago, I would have felt that way but never dreamed of telling anyone else. I dared not show my perceived weakness to another soul. No, no, no...... showing weakness was how you got wounded in the first place. Don't give the enemy out there any additional ammo, right?

Over and over again, in the last year, I have seen countless meditations, thoughts, books, etc. about the power and strength found in vulnerability. To be able to open yourself up to another person (or to many others) and risk everything to be exactly who you are. It is only from a position of true strength that you can say, "Façades are exhausting. I'd rather you see who I am behind the mask -- and if you don't like me, then I hate it for both of us. But I have to be me, regardless."

This is me: a little crazy, a lot tired and worn-out. I laugh too hard and too loud. I cry openly and often -- which amazes me, given that my heart is still tender after some of the beatings it has taken! I'm loyal to a fault unless you do something so painful that I cut you out from my life. And don't think I wouldn't; I have before with some others. I try to be as positive as possible and yet I worry when I shouldn't. I'm unabashedly a person of faith, and yet very open to reason and education, with a healthy dash of cynicism thrown in. I love my godchildren to the moon and back. I have the best girlfriends you could ever hope for. My families are big and insane and I wouldn't have it any other way. I know who I am, where my people are from, who they were, and where my heart lies.

I have been hurt badly enough to be a little gun-shy around people. I don't trust easily, and when that trust is damaged, it is hard to repair. Too often, my willingness to please and my kindnesses have been perceived as weakness. So I got tougher, less kind or less inclined to show it (especially when it hasn't been returned or even acknowledged). This has been a wrong approach......................

Strong is an awesome word. But real strength comes from being open to others, to be willing and able to be vulnerable, to risk rejection and being misunderstood to be real. To belong. To matter. To simply be you, the wonderful person that you were divinely created to be. A one-time-only way that God has smiled at the world again.

Sunday, September 15, 2013

When there are no words

Today, September 15, marks the 50th anniversary of a horrific event in our nation's history: the bombing at the Sixteenth Street Baptist Church in Birmingham, Alabama which took the lives of 4 young girls. All in the name of hatred.

Several years back, friends and I drove to Memphis for a wedding, and as such, had the opportunity to go through Birmingham as part of our drive. We drove right by the site, and I found that I could not say a word, except for a quietly muttered "wow" ....... I felt a sense of history, of significance. But more than that, I thought of it as holy ground, of sacred space, a place where there were no words that could possibly match what I felt in my heart. Later that weekend, while we were in Memphis, we drove by the Lorraine Motel, now the National Civil Rights Museum, and again, I couldn't utter a coherent phrase -- and felt the same gravity I felt at the church.

Sometimes, there are no words that can convey what the heart feels. I grew up after these events, was born a full 18 months after Dr. King's assassination. I'm a child of the South, but I think of myself as a child of the New South. My parents were part of that generation with one foot in their history and one foot in the future. They grew up in the era where segregation was the norm, but you were still expected to treat everyone kindly. I suppose the families were like many during that time -- more concerned with survival than with the larger questions of social justice.

Holy ground. The phrase isn't quite right, but it is all I can think of. My heart didn't have the right words. How do you succinctly speak of a sorrow for something that happened only 6 years before your birth but which seems like a distant incident on another world? How do you say how sad you are without it coming across as patronizing or condescending -- after all, you are still a Caucasian from the South, no matter that you have nothing to do with that horrid past. What phrase conveys all that, and the sorrow for the lives lost there, and all the lives lost due to hatred?

And even now, how do we deal with the hatred that still exists -- hatred that still makes brother kill brother, that makes us hate the other because (insert silly reason here). Because he or she is a different race, different religion, different belief system? Just because he or she reminds us of someone in our past who wronged us, and therefore we don't give them the chance? Or of the hatred that never expresses itself to the point of actual physical wrong, but which weaves its way into our thinking?

I'd like to believe that words have no power except that which we assign to them -- for example, there are certain words that I *hate* to hear, which means in some way that word has power over me -- but there are some phrases in any language which are hate words: slurs about someone's orientation, religion, background, or any other differentiation. Words that certain groups use among themselves to denote someone of another (fill in the blank). I read one of those words in a recent FB post, and since it was in another language, I looked it up. Per Urban Dictionary, it was a word of derogatory slang. Instantly, I was crushed. This person had suddenly lumped people into a category based on their background -- I'm sure the rationale was "well, it's been done to us." In one word, it became Us vs. Them. To say I was hurt was an understatement, and honestly, it's made me rethink a lot of things.

It took me back to Birmingham to a solemn brick building, to a cinderblock motel in Memphis. To a place where I am an outsider but one with a broken heart for all the hatred that existed then -- a hatred enough to kill four little girls who just happened to be at church a little early that day. A hatred that still turns the world into Us vs. Them.

And for that sort of sorrow, there are no words.

Thursday, September 12, 2013

Days Gone By

A post on Facebook from a college friend about a trip home and seeing old neighborhood friends made me think about my childhood. She had mentioned how lucky she was to have grown up when she did where she did -- and I could not agree more for myself as well.

I grew up in a small Southern town. I think the population finally crept over 3000 when I was in high school.... everyone knew everyone (or at least everyone's "people") and subsequently everyone's business too. My mom grew up here, my dad did not but is from an area within an hour's drive. We lived in the same house that my great-aunt bought for my grandparents and my mom in the late 40s (it's a long story). My mom has lived here 65 years in the same spot, my dad now for 45.

When I grew up here, I knew every neighbor on this block, the one up from us, and the ones around the corners. It was a mix of ages -- quite a few elderly neighbors, and only a few young(er) families. There were only 7 or 8 of us "kids" in the neighborhood, but that didn't really matter ...... in those much different times, during the summers, we were sent out as soon as breakfast was over, and expected to come home at noon for lunch, and dinner/supper whenever it was ready and your mama yelled your name out the door as loudly as possible....... or if she knew exactly where you were, she'd just call. She had the library's number memorized (this was before speed dial, and way before a contacts list she could just scroll through).

This scene was by no means unique to my hometown -- good Lord, I daresay every town for many years had a similar scenario. However, there was one thing very unique to my hometown: we'd already been visited by the idea that children were not necessarily safe. In late 1973, a young lady who lived a block away (yes, one block from my house, on the other side of my church) was kidnapped in early December. They didn't find her body until after the New Year. It was a horrible crime, and even as young as I was, I got the vibe from the talk between my parents and grandmother that what happened with Tammy was a very bad thing. Quite honestly, I am surprised especially that we girls got to gallivant all over town. But we did.

I remember Tee and I walking from our houses (next door neighbors) to the Speedy Mart, about a block and a half away but across a very busy highway -- and right at the railroad tracks, the busiest intersection around. We'd walk to the store, dash very quickly across the highway and take out our hard-earned silver coins or saved pennies and head right for the candy aisle. Or if we were being really adventurous, we'd go the other way, out past the mill, and go the half-mile to Mr. Owen's store for Astro Pops. (Mmmmm. Astro Pops!) My mother thought nothing of me riding my bike over to Em's house, about a half-mile away in the other direction. My brother and I walked uptown at least once a week (if not more often) to the library. I can still remember the cool air rushing out from the Speedy Mart and the smell of the Icee machines churning out that yumminess.

My neighbors -- to them, it wasn't "oh that's THEIR kid" ..... I was THEIR kid too. My neighbor and "third grandma" Granny B would not have thought twice about popping my fanny if I did something inappropriate. But more often than not, all they had to do was say something to invoke guilt and shame in me -- something like "Do you want your mama to know how you're acting out?" Oh my Lord, another childhood saying (do people still use this one): "Act like you've been somewhere before!" meaning, "I do NOT want people thinking you were raised by wolves so straighten up and fly right -- or I'll pop your fanny!"

It was a great childhood. The sad part is that even if I did have kids, I would never be able to give them the awesome experiences I had. I don't know my neighbors -- not many of them anyway -- by name. There are just a few that have been here for more than 5 years. The houses are changing, mostly by additions and remodelings. It's not the same neighborhood. And I would never allow my child to go to any of the places I went to, at least not by himself or herself until he/she was a teen (and even then, on a case basis). Biking around town? Only with me along for the ride.

Never the same. Time marching on, and stomping all over my past.

But it was nice, those days gone by.

Sunday, September 08, 2013

Invisible Illness Week

Please note: this is a repeat of my blogpost from September 2010 on the same subject. As Dan Pearce at Single Dad Laughing states, "Old posts need love too!" :)

This is National "Invisible Illnesses" Week -- a way to educate/advocate for all of us who do deal with an illness, just not an obvious or visible one. Or a way to remind others that we are so much more than our illnesses. I actually have two, since I also deal with migraines; however, the headaches are so mild by comparison that I would rather let those who deal with them on a daily basis speak on that topic. But this is the 24-7-365 one for me.......

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

  1. The illness I live with is: Primary Lymphedema (I shall abbreviate as PLE). It is a condition in which the lymphatic system does not circulate properly and swelling can occur at the site of damage. Primary is congenital and most likely hereditary. It can manifest itself in early childhood, after puberty, or after age 35. Secondary lymphedema is caused by some trauma or removal of lymph nodes (example: cancer surgery). In so many women, they develope SLE in the arms or sides because of mastectomy. In my own particular case, it was probably present all along, is definitely hereditary (have a cousin with the same condition, just recently diagnosed as well in her late 60s!), and began to manifest itself sometime between ages 14 and 19. I can't pinpoint an exact time.
  2. I was diagnosed with it in the year: 2008.
  3. But I had symptoms since: Who knows? First manifest around 1985-ish?
  4. The biggest adjustment I’ve had to make is: needing support garments almost 24/7 (not in the shower or pool).
  5. Most people assume: that it's more of a cosmetic problem or an annoying discomfort than a medical condition.
  6. The hardest part about mornings is: needing the extra time to unravel bandages, re-roll, remove additional compression aids, AND put on the compression wear after showering. I've managed to get the compression hose on in about 5 minutes, but when I get a new pair, it's a few extra minutes for that.....
  7. My favorite medical TV show is: does "Forensic Files" count?
  8. A gadget I couldn't live without is: well, nothing that directly affects my condition.
  9. The hardest part about nights are: summer nights, when I'm wearing tubiform stockings, compression aids, AND 2-3 sets of bandages per leg. SWELTER!!!
  10. Each day I take __ pills & vitamins. Okay, about 10 vitamin/supplements, and 1-2 pills each day (not related to lymphedema; no pills for that!)
  11. Regarding alternative treatments I: am already utilizing them.... well, I don't consider MLD (manual lymphatic drainage) an alternative treatment, but some physicians do, I'm sure.....
  12. If I had to choose between an invisible illness or visible I would choose: I don't know which I would choose. There are times "invisible" is better, but you get so weary of explaining, "yes, I have an illness; no, it's not some quacked-up quasi-illness.... do you want to see information on it, because I can give you more than you'd ever want.
  13. Regarding working and career: I still get to work, but I have PT every two weeks, and so I work it as my lunch hour .... and if there's a difference, I make it up by staying late or coming in early.....
  14. People would be surprised to know: lymphedema isn't just a "cosmetic" condition but if untreated, it can lead to serious issues.
  15. The hardest thing to accept about my new reality has been: this is 24/7/365 for the rest of my life. In my case, it's congenital and so I have to manage it, the same way that anyone with a chronic condition has to manage theirs.
  16. Something I never thought I could do with my illness that I did was: nothing. I didn't realize I had this condition until I was 38 and so I just always DID with it anyway.
  17. The commercials about my illness: What commercials? Totally not on the commercial radar .... and thank God because there's not a drug out there to be advertised for it.... so none of the "what a wonder drug, here are the 40 million ways it could kill you" ads.
  18. Something I really miss doing since I was diagnosed is: Going support-hoseless.... I do in the shower, and a couple of times when I have had a migraine develop, I've gone to bed unwrapped or unhosed. And I won't be able to do hot tubs, saunas, steamrooms, etc. again. But otherwise......
  19. It was really hard to have to give up: my razor. Yep, I'm not allowed to use a single-blade, double-blade, quatro-blade, or any blade. Electric razors, those are fine. But if I nick the skin and infection sets in, the protein-rich lymphatic fluid is nothing but a breeding haven for bacteria..... :( Le sigh. So I don't get quite that silky smoooooooooooooth closeness. Hmm, wonder if lasering my legs would be okay! And Nair/Neet STINK (literally).
  20. A new hobby I have taken up since my diagnosis is: hmm.... cooking? Nothing really. It's a condition but not necessarily life-limiting. It's as limiting as I allow it to be. If I don't take care of myself and do the right thing, then yeah, it's limiting.....
  21. If I could have one day of feeling normal again I would: go hoseless!! :D But then again, after 5 years, it's a weird feeling even being hoseless in the pool!
  22. My illness has taught me: more about the way the human body works. I had so little knowledge (still do, I think) about the body's many, varied, interesting detox/elimination processes.
  23. Want to know a secret? One thing people say that gets under my skin is: well, about the condition: nothing. Not that I'm not ready to advocate, but most people don't ask much more than "so what do you have to go to PT for?" You do a short explanation, and it's like, "Oh. Wow. Didn't know there was such a thing...." and that's as far as it gets.
  24. BUT I love it when people: ASK QUESTIONS! and WANT to learn. What, a little extra knowledge will kill you?
  25. My favorite motto, scripture, quote that gets me through tough times is: my thought is that I have this condition, it does not have me.
  26. When someone is diagnosed I’d like to tell them: do not hesitate to learn about the condition, and DO NOT miss an MLD treatment, and FOLLOW THEIR INSTRUCTIONS. Yes, it's a colossal pain in the @$$ to bandage every night or use a pump (if you have fibrotic skin), but it beats bout after bout of cellulitis all to hell. I had ONE bout, extremely mild, no open wound -- and it STILL took 3 weeks of antibiotics to get it under control.
  27. Something that has surprised me about living with an illness is: well, for me, it was the fact that after 20-ish years of untreated and undiagnosed PLE, my skin had not become fibrotic, or otherwise horridly disfigured. I consider myself TREMENDOUSLY lucky in that respect. Even my physical therapist was VERY surprised. In some ways, it was almost like it had just recently started happening, instead of having 20 years or so of this condition.......
  28. The nicest thing someone did for me when I wasn’t feeling well was: Just listening to me.
  29. I’m involved with Invisible Illness Week because: I believe in advocating and educating. The more you know......
  30. The fact that you read this list makes me feel: happy -- and that I have made a little difference in helping people learn and understand


Do you have an "invisible illness"???? Click http://invisibleillnessweek.com/ to learn about Invisible Illness Week