Beloved studied me as I slowly turned in a circle for him. The wrinkle between his brows was definitely wrinkling meaning that this outfit was also doomed to be cast aside as unworthy of the event. So far the five outfits I had tried on and deemed appropriate had been discounted by him for a variety of reasons. Some days it’s hard for me to believe that I can even dress myself for every day outings.
I never use to be this unsure of clothing, fashion or myself. Lupus, though, has a way of keeping me humble. My weight and figure has changed repeatedly with medications required to fight lupus. My body carries the scars of various medical interventions from this disease as well. And somewhere along the lines my confidence has slipped off as quickly as the lupus rash slips on my face.
So I twirled and modeled and hated every minute of it. Hated the way I was so self-conscious and how Beloved would shake his head and tell me that the stuff I was worried about could not even be noticed in this or that. I was leaning towards a turtleneck top with long sleeves and pants. He shook back his head and insisted I consider the loose and almost gauze-like shirt to go with a smaller top. He relented on the pants though.
I watched him bite back the words he wanted to say, the words he said so many times before. He would tell me that I was beautiful, that no one could see the damage from this illness. That for the moment I would look like every other woman, beautiful. But lupus doesn’t make me feel beautiful. I know warriors and survivors can be beautiful. But I feel like I’m covered in dirt and wounds and sweat and much as I fight this illness in the trenches. And I don’t think I will ever be beautiful again.
Beloved sent a dress over for me to try. He included a wrap and large shawl to be worn depending on weather and such. He picked out something in the periwinkle family and not too much material.
I Could have settled for a lovely tent. That way I could hide in my tent, safe from the sun and hide my scars from prying eyes. I get tired of explaining the various marking from my life with lupus and at these types of functions are bare shoulders and scooped necks. In other words it’s called discomfort city for me.
With the dress and the coverings, Beloved sent a copy of the invitation to the dinner and dance. On the bottom. The invitation he had written “they know you may not be able to make it; everyone understands”
Now life before lupus would have me uncomfortable because it is a fancy dress affair. Life since lupus has added a few new things when it comes to these events. One of those things is finding a way to dress appropriately while still hiding my port, scars and such. Oh and the clothing has to be comfortable because, well, lupus.
Mostly though with lupus I’ve had to learn that even when there are times I want to attend something, I have to say maybe. Maybe because sometimes lupus says it will be a last-minute thing if I go or not.
“Channel your inner spirit animal” the lady said in her soft, gentle and relaxing way. I’m sure I was supposed to conjure up something that had pride and was strong, like a lion or a bear. What came to mind though was that today my spirit animal is a snail.
It isn’t just the lack of energy that makes me feel like a snail today. It’s the inability to get into any speed other than the extra slow lane speed. No matter how hard I try, I cannot seem to push myself beyond extra slow. I mean sure, I will get where I am going, but don’t ask for any speed walking today. Actually, don’t expect too much to get done today. And it’s not all because of my swollen, aching joints either.
I don’t ever recall owning this speed prior to lupus. Prior to lupus my speed was more or less a thousand miles an hour with my hair on fire. Prior to lupus my joints didn’t hurt or get swollen, which accounts for some of the slow down. But something else happened with lupus too.
I become more reflective, withdrawn and found a slower speed. I’m not saying that snails are reflective because I have no proof either way. I like the idea of having my safe place (house/shell) with me at any time so I can crawl into it and just relax, rest or deal with the fact that I’m not having an awesome time of it all. And I do not like this slower speed that I have simply had to come to accept with lupus.
The reflective side of things isn’t bad, it’s just different. Sometimes it’s all I can do to reflect back on something because I don’t have the ability to do those mental gymnastics right now thanks to my brain being in thick fog from lupus. So instead I reflect and observe. I notice the stuff I used to ignore or not have time for. Now that I have lupus, I have time for enjoying watching the green leaves first unfurl. Checking the progress of a flower bud as it slowly unwinds itself into the full bloom. I can marvel at the way an ant will set itself to a task and just complete it. And I can watch the clouds float across the sky. You see, in some ways, lupus has allowed me to slow down and that’s a good thing.
Where do you see yourself in 10 years? What about 5 or even just 2? I hate these questions. I hated them when they would crop up in job interviews or annual reviews. Half the time I had no clue where I’d see myself within 6 months.
Recently I was asked the dreaded where do you see yourself in 2 years question. Not by an employer or potential employer. Instead this was from one of my specialists who, after reviewing all my lab work took off his glasses and looked me straight in the face while he posed the question.
For the first time I decided to actually do more than just a quick think on the question. Where do I see myself in 2 years? I don’t know. I honestly have no clue. Part of that is life with Beloved is and always will be joyously chaotic at times. Part of that is my chosen field of work is a bit fickle, so things ebb and flow with it, but that’s okay.
But where do I really see myself in 2 years? Hmm well short of a miracle I see myself still living with lupus. Unless there is a cure within 2 years that is. I see myself visiting specialists, giving up far more blood than I ever thought I would due to fear of needles. And I see myself still finding fun, still reaching towards the stars and still trying to figure out where I see myself in 2 years time.
When someone first told me that a willow tree was also a symbol for lupus, I laughed. Not because I find willow trees to be funny, to be honest I haven’t really considered them much, rather because I found the idea of a tree being a symbol to be, well, unusual.
Then I started looking into willow trees and discovered that these trees are incredibly remarkable. They have medicinal uses, especially around fevers, pain and inflammation (think of Aspirin). Hmm sounds an awful lot like the issues I encounter on a regular basis with lupus. Inflammation? Check. Pain? Double check. Fevers? Low grade almost all the time.
In addition, these trees were used for art and tools given their strength combined with flexibility. Hmm sounds familiar again. Lupus has taught me how I used to underestimate my strength and determination. Prior to lupus I was somewhat comfortable assigning the label “too hard” or “too challenging” and giving up based off those labels.
Since lupus has become my constant companion, I am up for the challenge because on top of being strong, I am flexible. Not super yoga bendy. Not human pretzel bendy either. But I’ve learned to flex and adapt to changes because that’s life with lupus.
Another interesting aspect of the willow tree is that for the most part, if a branch breaks off or a cutting is made, they almost always take and become trees. I like to see this as my life with lupus being no matter how much lupus throws at me or changes, I still find a way to see it through to my goals or dreams. Even if they are a bit altered or part of something I had wanted which was bigger.
So yes, a willow tree makes perfect sense. Now if only I were tall and graceful like one!
When you are young, the first tastes of freedom are small, fleeting and fenced in. For me freedom meant climbing on a swing and allowing myself to swing as high as I could for as long as I could. My parents didn’t seem to mind too much provided that a) I came when I was called and b) I did not jump off the moving swing. I didn’t always live up to those rules.
The next real taste of freedom was walking some place all by myself or taking off on my bike somewhere. Again there were rules, not that I always followed them (it’s sort of a theme in my life), so it wasn’t full-fledged freedom, but it was a start. After that came the car which took me far away, fast or slow, as the world opened up to become something so much larger.
I had always envisioned my life as an adult full of freedom and doing more or less what struck my fancy provided I met my obligations. Except that hasn’t really happened. You see when you have a chronic illness like lupus you suddenly find this concept of freedom being impinged upon. Doctor appointments, lab tests, rules, and such all get the in the way of doing what you please.
On top of that there is the physical price this illness makes you pay. You have to weigh your options of doing one thing at the cost of so much energy, or perhaps making lupus come down hard on you because you didn’t follow one of it’s silly rules.
Some days living with this illness feels like someone is taking away my freedom. My freedom to do what I want or live how I want. Other days, lupus seems to take a backseat, just along for the ride.
Church. A place of faith, healing hope and peace. It also happened to be the last place I felt like ducking into after receiving treatment, but my designated driver for the day’s treatment wanted to sit in the chapel for a few minutes.
The hospital chapel was small, light in color and featured a simple stain glass window up near the altar. My friend chose a seat up front while I stayed near the back. I said I wanted to be by the door in case I didn’t feel well. And while that was part of it, I really didn’t want to be in the chapel at that time either.
I don’t have anything against churches or chapels, I just wanted to collapse after a couple of hours of IV treatment. I didn’t want to throw my fears, worries or what have you out in the air. I just wanted to drift off into the bliss of sleep.
I’m not sure what al my friend wanted or needed in the chapel, but I knew praying for healing from lupus would not result being healed. Had I been thinking a bit more clearly I would have realised that I could have prayed for a doctor to find a cure. I could have prayed for remission org to least a small breaks from this illness. But mostly I would pray to stop feeling so guilty about what my illness means to others. And I’d pray to cease being a burden to others. Sure Beloved will deny it’s a burden to be with me, but at the same time I know he feels relief when he’s off on a trip and I’m here with lupus.
Instead I sat at the back of chapel and simple was still. The peace of the chapel settled down around me and I allowed myself to enjoy that. That was a blessing for a day of treatment, setbacks and pain.