L. L is for life and laughter and love. L is for learning, limits and living. L is for lists, labs, lies and lupus.
When I first heard of lupus in conjunction with my life I was scared. I was scared that I wouldn’t be able to live my life as fully as I wanted to. Would my life be cut short by this illness? I wondered if I would ever find a way to laugh again. And I didn’t want to think about how it would affect the ability for someone to love me.
Basically, I spent a lot of time in the dark of those thoughts and questions. But lupus isn’t all darkness filled with fear and monsters of the unknown type. Life with lupus can be full of laughter and lightness although you do have to be careful about UV light as it can trigger a flare.
During my journey with lupus I have learned how handy lists are. Lists of things to do, medications I take and people to contact for example. These lists have been time and life savers along the way. And some of these lists have been on lab requisitions. You know the kind your doctor orders?
Life with lupus means lots of lab requisitions and visits. Just to get a diagnosis can require multiple labs with oodles of blood draws and then depending upon your medication and such you may need to do more regular labs.
Life with lupus is also a life with lies. Lies I tell myself, like it’s nothing too serious, or I can beat this fatigue to the lies I tell other people so t hey don’t worry. I tell people I’m fine when on the inside I feel like I am crumbling into dust while being so exhausted I don’t really feel like I want to use energy to draw another breath. Thankfully those moments are not permanent.
If you are wondering, yes life with lupus is a bit more complicated than I’d like, but it is full of laughter and lightness, love and learning. I’ve learned how strong I am, when to push and when to rest. I’ve learned far more about biology than I thought I would and I have also learned that sometimes it just doesn’t matter how other people feel about my situation.
It’s a strange thing, to know where your lover is in a crowded room without hearing his voice or catching sight of him. I just know when he comes in. I know when he’s moved off to the right or the left. It is as if in some ways we have become one, or he has become my own creation.
I know when Beloved is talking about that scar, the one that runs just down there and makes him look a bit more pensive than he should. I can tell without hearing him, without watching his hands. I already know when he is talking about this because I know him so well. I know him, perhaps better, than I know myself.
Beloved knows when I walk into a crowded room without having to look for the top of my head (it’s the curse of a vertically challenged person). He does not have to hear my voice to know if I am heading his way or away from him. We have, in some ways, become one. Attuned to each other as many couples seem to become.
I didn’t set out to have this in my life. I never asked for such a person who would the other part of me, the part that is more calm and level-headed. I did not want to have someone complete me in a way that he could press the broken parts of my heart back together. I don’t suspect he set out to find someone who has become known as a “fire cracker” among his friends. I doubt he said his life was missing someone who was “feisty” and not likely to back down from any challenge. And yet here we are.
In some ways we hold each other’s brokenness together while at the same time trying to fill in the gaps and missing pieces the way you might glue a broken piece of pottery back together. It’s never perfect, it’s always going to show the scars (yes even those inflicted by the one who has opted to put things back together), but it somehow works. And it some how works that we know where each other happens to be when we are together. And when we are apart, it’s as if there is room to breathe, for those broken pieces to relax a little bit and the cracks to start to feel a bit looser again.
He does not make the brokenness go away, after all surely that is part of the human condition. Rather he helps to shift the brokenness into a more manageable place, to where I am not just broken, but I can be whole if somewhat shattered. And this somehow makes me a better person, or so I tell myself as I revel in the idea that I too am a bit of his own creation, after all he has shifted and rearranged the pieces he can, dropping those that he can’t. Surely we are somewhat each other’s creation or modification without meaning to do either of those very things to one another.
What no one ever tells you about being in a long-term relationship is how much everything changes. The constantly getting into each other’s spaces gets old at some point and you wonder really how much stuff does this person need and how far does he really have to spread it out!
The cute way that he kicks off his shoes stops being cute and instead becomes a moment of wondering how a grown man who is intelligent and takes good care of his books cannot seem to bend over and straighten up his shoes. It’s as if he would be breaking a law of some type if he did this. And yet he is the same person who complains as he trips over his strewn about shoes.
You go from thinking it’s cute how she needs you to grab the stuff on the top shelves to wondering what has happened that she is incapable of pulling over a chair, steps or a stool so she can reach what she needs on her own. You wonder what else she has stored where it’s not easy for her to reach just so you have to do that task when all you want to do after a hard day’s work is sit down for a few minutes.
That adorable need he has to have a certain food item grates on your nerves after the one hundredth time. The charming way she always says “just one more second” and then you find ten minutes have come and gone and she still isn’t ready. You wonder how she gets through life being late or if everyone has just learned to give her a time estimate based on her own standard time zone so to speak.
Ah but young love, love in the first fullness of bloom cannot begin to imagine these moments. How could you ever get tired of listening to his heart beat or curling up with her and listening to the day she’s had. But it does, it grows old just as we do and so you have to find ways, ways to not feel so strongly about those very things that you used to like so much. And if you should happen to know how to do this, please let me know!
Some people have lazy days, typically lazy weekend days. It’s a way of balancing out all the hectic rushing around we do during the week I guess. Slow things down, ignore deadlines and just go with the flow.
We don’t have those in my house. The four-footed one doesn’t believe in lazy days. She also doesn’t believe in sleeping in or altering a routine. She doesn’t understand when I need to rest or the routine gets messed up due to lupus.
Beloved attempted to have a lazy day recently. Get up when he felt like it, have a leisurely breakfast and just see where things took him. He told me the night before he was going to sleep in and just take it moment by moment once he woke up. He was confident in this plan despite me warning him that the four-footed one would be having none of this.
Of course when she woke him up as dawn was breaking he was not thrilled. The fact she was ready to start her day was lost on him. Granted I get being a bit grumpy when you get woken up at dawn because a cute little fou-footed companion needs to go outside. And yes it can be a bit ,cugh when that same cute bundle of fur demands her breakfast and play time right after coming in. And don’t forget the after play walk. All before 7 in the morning thank you very much.
I figured the two of them would sort out the lazy day by early afternoon, both of them napping, except that wasn’t the case at all. She was determined to make up for missed walks with him, and don’t forget about al the missed play time to. While he was hoping to put his fee to pay and read, it has her resting on his legs she was determined to get him walking and playing as if his life depended on it.
I, on the other hand, managed a nice lazy day!
I like to think of myself as being tough and strong. I’ve never found myself overly emotional about most things, but some yes. And yet now and then something that doesn’t even impact my life in the same way as deaths or my illness comes along smacks me in the face. And I am rendered anything but tough or strong.
When I read cases of people who are denied medical coverage for things simply because their genes got a little mixed up when they were knit together (completely beyond their control), I get emotional. When I stop and consider the horrible conditions some people live with or work with, yeah that can get me caught up as well.
I won’t deny it, when I get caught up in this stuff I feel anything but strong. But of course to not feel anything would be the sign of true weakness. No one said life would be without pain. No one said that when your friends have chronic illnesses you won’t find yourself ducking away for a good cry while they aren’t looking.
It’s been one of those moments dear readers. One of those days where I have had to accept that a dear friend who is one of the strongest people I know is going through something I cannot even begin to help with let alone fix. All I can do for this friend is be there. And it seems like being there is absolutely useless, yet it’s what my friend needs and it’s something I can do. And my friend needs to know it’s okay to cry, it’s okay if we both cry.
A brilliant red dragon perched ever so carefully on Beloved’s foot as he sat in one of the big chairs that face the setting sun. Curled up in his lap was the four-footed one. The dragon kept watch over the sunset while the four-footed one slept and Beloved was lost in his thoughts.
I stood there, watching them for a period of time. Watching the way the light reflected its different hue so softly against Beloved’s. The four-footed one seemed to be at peace with her day, she had no need or interest in watching the soft apricot light give way to darker reddish-orange glows as the sun continued to set down. I could have stood there watching forever, except that wasn’t possible. Not with the crease deepening on Beloved’s forehead.
He is the sort of man, my Beloved, who will tell you nothing is wrong even when he is dealing with his world shifting in him. He will smile and ask on about you and never give you one moments reason to give pause. And it was no different when we came back from an outing for shoes today and I asked about that faint beginning of a crease just there.
He said it was nothing and went off to face out the big picture window while he did some research. The four-footed one may have noticed that crease grow deeper, changing shape as time went one and they played together. But if she did she wasn’t sharing. And now, with the sun setting and the dragon silently keeping watch, the crease had deepens to the point of being worrisome.
And so I disturbed them, to offer him a cup of tea, which he smiled and turned down. Instead he patted the chair beside him and pointed lazily out the window at the last rays making their way towards the ground. He said nothing until it grew dark and he was lost in the soft darkening shadows. And in that growing darkness he spoke softly, sharing his concerns, as though he couldn’t say any of it while the sun was up.
We sat there, in the darkness, the words heavy between us. Try as I may, I could not ease those concerns, but I could sit with him. Sometimes that’s all any of us can do, and hope we have a perching dragon to watch over with us.
I was thinking I probably didn’t stand a change, not even a faint one when I see him leaning against a podium. But nothing ventured is nothing gained as they say and so with a deep breath and a fluttering heart I made my way to where he was. I prayed the words would somehow come to me during that painful walk to where he stood.
Instead he turned and smiled my way and asked me where I was going and by that point, I had no way of knowing where it was going or where I was going other than hopefully to some more time with him. Years kind of slip by when you are lost in just trying to hold on while a man who isn’t used to driving starts driving. I still don’t know where I am, not really, but I’m somewhere with him some of the time.
And while I may not think that he belongs in the wild blue yonder, I know he need to be there. In order to get back to me, from where he has been, Until he needs to leave again. And if you had told me this would be my life years earlier, I would have laughed at you. I may not have even bothered with making my way to him. But you never can tell where any one thing or person will take you and if you are open to the adventure, there are many that are sure to be found. Even those that include the wild blue yonder.