I’d been thinking and praying about what my first official blog post would be. Actually, I thought “Low in the grave He lay” was my first blog post, but being techno challenged, I didn’t know that I put it in a “special” page spot, so I left it there. Mostly because I wasn’t sure how to move it, and also because it gives more of the story of how this blog came to be.
While online a few days ago I noticed a friend had changed her profile picture to this:
May is lupus awareness month, and May 10th is World lupus Day. As I’ve waited on God’s leading the last couple of years, we’ve had several conversations about my desire that this blog NOT become a health/lupus focused thing. I knew that, of course, I would talk about it, but I wanted it to happen later, and not be the main point, because God is THE point, but this is where the Spirit moved me, so let’s start with what got my attention about my friend’s post.
I didn’t realize that the lupus foundation had associated itself with the color purple. Everyone knows that pink ribbons are for breast cancer and red ones are for heart disease.
I was barely aware that May was lupus awareness month. Those are the kind of parameters I prefer not to define myself by. (I’ve never liked conformity, labels, rules or judgment – and unfortunately those were frequently what I often experienced from well intentioned Christians – rather than the love and grace we are all called to show one another) I have lived with lupus since 1976 and never realized that they had claimed purple for “their” color. It kind if stunned me. Here’s some of the why.
My Mom tells the story of how, when I was 1 or 2, the first crayon I picked up was a purple one – and I wrote on the walls with it. Evidently, she always knew when it was me writing on the walls and not my twin brothers, who were 3 or 4, because I always found and used a purple crayon. I guess it didn’t occur to me to cover my tracks – I always grabbed the color that delighted me most. Mom loved lilacs and had their bedroom painted lavender for many years, maybe she passed the gene on to me, but I have always been passionate about purple. Mom buys me purple stuff, my sister buys me purple stuff, my friends buy me purple stuff and I buy purple stuff. I never realized that my little sis, who is two years younger loved purple too, until I’d gone off to college and she inherited my ’71 Chevelle and painted it purple! These days I mostly buy purple pens or paper, or a notebook, because we’re trying to de clutter our nyc apartment this year – for the 2nd year in a row!
So, I guess that brings things back around to this blog and lupus. It is probably the thing that has most often, and most deeply propelled me into an awareness of living in Saturday. The lupus Foundation of America calls it the “cruel mystery” because of its unpredictability and the fact that systemic lupus can attack pretty much any tissue or system in the body. I refuse to capitalize the word and will completely change a sentence structure when I’m writing so I don’t have to capitalize the word. I don’t want to deign to give it any distinction. I’m not sure when I started doing that – probably somewhere back in 2007, when I nearly lost my life to the disease more than several times with lupus alveolar hemorrhage. Maybe it was 2009-10ish, after I’d started emerging from the fog of merely existing and was finally able to survive without a nasal cannulae on my face and a tube draped over my ears, connected to either the o2 concentrator at home or in a hospital.
Those were some dark years. I had to stop working both of my jobs (I’ve worked two jobs much of my life) as a counselor/psychotherapist and my moonlighting job for the airlines. I was home, tethered to a long oxygen tube that reached to all the corners of our Inwood apartment. After living on the upper West side of Manhattan for 10 years, the 96th & West End brownstone where we occupied the 2nd floor in a tiny two room apartment, was sold. If I’d become homebound in our old place I would have gone stir-crazy! In June of 2007, as I was being discharged from the hospital the 2nd time that year, my hubby and some beneficent friends moved us 101 blocks North into a 2 bedroom elevator building, a half block from the A train, which also had an elevator. Directly across the street was a grocery store, a pharmacy and a liquor store. Our 207th & Broadway apartment was 3 times the size of our old place and our rent was $500 less!! I was never so sick that I wasn’t able to fill one of the portable canisters that came with my oxygen concentrator and put it in the carrier and throw it over my shoulder and go across the street to get some groceries, drugs (legal!) or a bottle of wine. Even in those soul numbing days, I didn’t doubt God’s goodness. It just didn’t occur to me, come to think of it, not much did then.
During that time, although I wasn’t consciously aware of it, I was struggling to survive – physically and spiritually. I was stubborn, and refused to feel sorry for myself. After all, I was still alive – and I was a Christian who wrestled – wasn’t that “aware” enough? God had gotten a hold of me when I was in first grade. I grew up going to Harmony Bible Church 3 times a week – Sunday morning, evening and Wednesday night. Those were the years that God started hiding His Word in my heart with good news clubs, scripture memory, bible stories, sword drills, youth group and bible study. I didn’t realize it back then – I thought I had Him – but, oh, how He had me – and only He knew just how much I would need Him!
In 2007 I had 5 episodes of alveolar hemorrhage and a sixth one in March of 2008. Many people who have this happen don’t survive the first episode. I was still alive after 6. When I landed in the hospital at Columbia Presbyterian down on 168th street in NYC, for the 6th episode, we were without health insurance and my disability income because my employer had denied my application for long term disability (ltd) several months earlier and said I didn’t qualify for ltd and demanded that I return to work or lose all my benefits – even though I couldn’t survive without 2-3 liters of continuous flow oxygen! I threatened to strap on the portable o2 and my uniform and go show up for work at the ticket counter when we first got the denial letter, but my docs assured me that given the severity of my condition, there was no way that my appeal of the denial would fail. Eventually, it was overturned and all our benefits – insurance and free flights – were reinstated retroactively.
While I was in the hospital in 2008, for a week or two, sitting in Saturday, several things happened. The social workers descended and helped me fill out all the paperwork to file for social security disability (SSDI). Funny, the thought hadn’t even occurred to me, even though I’d been on oxygen for 7 months, that I should file for disability. Plus, I hate labels and just ignored the reality. I was still able!! Until I wasn’t – and when I was sitting in a hospital, without health insurance, I finally had to accept the reality and the offer of help that was given.
Another thing that happened when the rheumatologists there decided that, my most recent flare likely happened because my steroids(prednisone) were being reduced. Because of the severity of my lupus lung issues, it was decided that the prednisone would be increased again to therapeutic levels, and another drug would be added – a chemo drug that is used to suppress the immune system called CellCept.
God and I had more than a few conversations about this. I knew my drug regimen well – understood the ravages of prednisone – hated the drug because of the side effects – when I first started taking it at age 14, I was a normal sized teenager who gained 60 pounds on my 5’3″ frame within 3 months time. Over the years, and many flares later, I’d had more opportunities than I wanted to wrestle with my God, and He brought me to the hard-won realization that I was NOT a fat ugly little girl who no one would ever want to love. I was a daughter of the King of Heaven – and nothing could change that or diminish it. Even though God didn’t spare me from needing to take prednisone – and I have no doubt He could have – instead He faithfully and relentlessly pursued me, through each good day and especially the bad ones, when I didn’t recognize my face in the mirror because of this drug that kept me living and breathing – literally.
I understood and had come to realize that in spite of what this drug I hated did to my body, it saved my life, preserving my kidney and lung function at least 10 times. I will never be ok with what the side effects do to my body, but God has changed my vision and my heart. We talked – I ranted and wept and asked why He felt the need to throw a chemo drug into the plan. Hadn’t I already endured enough – how long would evil be allowed to continue his attempt on my body and my soul? Eventually, God’s Spirit moved in me, helping me to find the hope that lives there, even when I don’t always feel it, showing me that when I let go and die to my will, I’ll find Life in The One who gave His Life to redeem me. As our communion deepened and I finally relaxed in God’s care, I asked Him to spare me some of the side effects of cellcept – if that could be possible – would He please give me a tender mercy as I embarked on this new chemo drug regimen.
When the nurse brought my first dose of the medication, tears sprang to my eyes. The two large-ish oblong tablets were a lovely shade of purple – and I laughed with my God, through the tears – at tomorrow.