Give Me Some Peace Please

I went to the coffee shop to get some work done while having a coffee.  It’s a simple thing really.  I brought my work with me, ordered my coffee and found the right place to sit and just get some work done.  I don’t think I was asking for too much.  Evidently the universe or what have you felt a little differently about things.

You see right place I picked, off in a corner with an outlet and away from the other tables seemed to be the place to attract all sorts of what I will call distractions.  It started with a young couple deciding to stand near my table and debate which movie they should see.  It was a rather exuberant kind of discussion and twice the girl hit the table I was using while she was flinging her arms wide open to express herself.

She didn’t apologize either time or see if her actions had impacted anyone.  Thankfully someone from the coffee shop not only asked them to move the second time, but cleaned up the spilled coffee and provided me with a new coffee, free of charge.  (Amazing service if you ask me.)

After that was an older couple who moved a table near where I was.  They were fighting about television viewing habits and how she never got to watch any of the shows she wanted because he was watching the same shows he had seen earlier in the week.  Thankfully I managed to get what I needed to get accomplished before they got really loud.  (By the time I was at the door they were shouting at each other while a different employee was asking them to please keep the noise level at a conversational one.)

The final act on behalf of the universe happened while four-feet and I were on our walk.  We were “entertained” by a rather boisterous and badly off-key person singing Christmas carols.  Hopefully tomorrow I can find some silence!

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Sweet Peace

The door closed with a soft snick, letting the sounds remain outside.  As peace descended again  in the house, I realized how large silence can be.  How it can fill a room with a comfortable blanket.  How it can wrap itself around you and weave itself into all the spaces.

I also realized just how noisy it was outside between the neighbor cutting wood and his wife running a leaf blower.  Oh and let us not forget the toddler screeching happily in time with the chain saw and the leaf blower.  It was all a bit much.

Unfortunately, closing the door meant closing out the sunlight too.  But there was no way to keep the sun and not have the noise around.  And after an hour of noise, which truly seemed like forever, we had enough.  So we closed the door, let the silence settle down peacefully around us and decided to ignore how dark it was now.

Instead we enjoyed the peace.  We sat there, book in hand for one of us, head on paws for the other of one of us, just enjoying the sound of nothing while our ears relaxed.  Until a bird decided to tease us, then one of us barked.  And the silence was broken.  Probably for good.

Zen Indeed

Today’s lesson is to know your four-footed companion very well before attempting to do yoga or Pilates while your companion is freely roaming about your work area!  Okay so this may seem obvious to some of you, and perhaps a few of you have already learned this lesson.  But no one told me about this. There was no warning that came with the four-footed one.  Not a single word.

And normally, well normally she isn’t all that interested in what I am doing if she happens to have a toy or something to keep her occupied. The only time I’d say this doesn’t apply is when food is present.  Nothing trumps food when it comes to the four-footed one.  Heck that may apply to me at times too!

Anyway I was doing some yoga today, at home with the four-footed one roaming about freely.  She had her large pink elephant to play with and all was very zen like to begin with.  I followed poses, I breathed and I felt a bit lighter.  Until.  Until the moment of a downward dog.  This is the point where zen ceased to exist and chaos began.  You see the four-footed one decided that my sad attempt at and downward dog was really an invitation.  To jump on my back.  And then jump off. And jump up again.  And down again.  Basically I became the dog’s jungle gym.

Naturally I had to put an end to this, but when there is so much fun to be had, it can be hard to just stop.  That is until a firm voice and command is given.  At this point the fun ceases, the person responsible for the cessation of said fun becomes ignored and the four-footed one disappears for a bit.  And any moment of zen, peace, calm or even feeling a bit better is over.  Just like that.  Because the next thing I did was end up like a pretzel, only because I was trying to get the four-footed one to come out of her hiding place.  She gave in once she decided I was knotted up enough.

I’d go back to the yoga, but….

The Still Of It All

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.

Stained Glass, Stained Soul

Beloved has a things for stained glass windows. He cannot make them as he lacks the artistic talent for that.  He cannot install them as his thumbs seem to rebel against labor of that sort.  But he can find an incredible amount of beauty in them, especially the way the sun illuminates them.  And he does pay homage to them when he can.

No matter where he travels to, he will seek out stained glass windows to capture on his phone and sit beneath, to let the colored light play against his skin while he contemplates his life.  To him, there is something special about being able to sit bathed in the unnaturally colored light and reflect upon his actions, thoughts, desires and dreams.  He can spend hours in silent contemplation, lost in a world I have no way of entering.   Mostly because I tend not to darken the door during these moments.

There is something sweet and precious about his ability to find meaning, purpose and something so much larger than we are yet connecting us all to the same one thing.  And I find myself sitting in awe of this, of a simple act that is not so simple nor as easy as he makes it seem.  And while he is refreshed from his moments or hours of contemplation I find myself breathless from trying to chase my thoughts into a meaningful pattern.  And in these moments of peaceful stillness and calm he seems blessed in a way I don’t know how to reach.  It is as if we are meant to be alone for that moment however long it stretches, he lost in contemplation while I am left waiting and holding on for the moment to pass in order to reach above to get back to him.

Please Don’t

Some days I want a direct line to the complaints department for living with lupus. But those are the days I also want a direct line to the complaints depart for people who think they get what I’m going through, but really don’t.

For example, when I have managed to get myself out of bed, showered, hair done and dressed and suddenly find myself needing to rest before I finish my morning routine, it does not equate a healthy person’s tired from staying up too late the night before. It’s not even close. And I do not have the energy to educate these people. (Would it even be worth the expense of my energy to try and educate them given that some people do not want to learn what they don’t know.)

Another example, you insist. No problem. There are times when my joints feel like they are filled with shards of glass. Each time I move, those shards of glass slice and grind further into my body and set my joints on fire with pain. When I don’t move, I still have a slow burning pain. This does not match the pain of someone who does too much being a weekend warrior. You see as a weekend warrior your pain will go ago. Mine will just be tamed a little here and there, waiting to erupt into a full raging fire with the least provocation.

In the past I could almost make a meal out of the number of pills I was prescribed to take on a daily basis. So you will excuse me if I don’t bat an eye when you say you need to take your pill twice a day. Injections? Yep been there, done that and have the holes to prove it. (Still do it to be honest.)

Sure on the outside I may look relatively okay although you will never see me not in long sleeves and pants, I don’t care how warm it is outside. Sure you may envy that rosy glow on my cheeks, but if I were to take off the make-up that’s doing it’s best to keep it under control, you’d not want to brilliant red rash that it really is. So please don’t tell me “it’s just a little color in (my) cheeks”. It’s more than a little color and I’d rather it not be there, but it insists on coming along for the journey. Also please don’t tell me about the time you forgot to reapply your sunscreen and burnt your face. It isn’t the same, I know because I have had a horrible sunburn in the past.

I didn’t ask for lupus nor all the “fun” that comes with this disease. And I’m really not trying to have a game of one-up with you so I’d appreciate it if you didn’t feel a need to play that game with me.

Sometimes I just want you to acknowledge that when I’m tired, I’m tired. When I hurt, I hurt. I don’t need you to seek to compare it with something in your life, I’m not asking for anything other than to have the freedom to make the comment and it be taken for what it is. A comment on my life at a given moment.

Thrilling Heights

When I was a child I loved to stand on the edge of things, the higher up the thing was the happier I would be to get to the edge. There was something thrilling and daring about being right on the edge of adventure, but still grounded on the solid ledge.

My mother would inevitably discover me standing far too close to something and whisk me away or yell at me to get back to safety. Safety would be determined based on the distance of the potential drop as well as what I could strike on my way down. The further the drop, or the more pointy objects I might strike as I was following meant safety was that much further away from the edge.

The more my mother pulled me back from the edge of something, the more likely I was to get closer to teetering on the ledge of something else, typically much higher. This all would result in a cycle of her feeling a need to express the potential dangers I was putting myself in, and of course I would then have to find something else to drive her blood pressure up.

One of my favorite things to do was to flop down on the ground which just happened to be the spine of a steep hill. Down below would be a gurgling creek on one side and to the other side, another down slope covered in large, unyielding trees. I could be up  there watching the clouds move by or read a book for hours upon end for it was a place my mother came.

She was afraid of heights; basically anything over two feet off the ground was “high” and anything that had no safety rails was the work of the devil so she never came up onto the rolling hills. My father had taken me up there a few times, he even held me steady as I rushed down the hillside, marveling in the speed and the way gravity made the down portion of the trip so easy.

To this day I am thrilled to head up to higher ground and look around, study what lies below and marvel at how different things are when you are above them. Tree tops look different when you are peering down at them for example. I revel in the freedom being above provides me, and perhaps the knowledge that some people will simply not travel with me to high places. To this day I feel the need to push things closer to the edge, to see where the tipping point happens to be. I trust that I will find my balance as I hit these tipping points, but I don’t really know if that will be the case. A part of me accepts that I may not find the balance and actually fall while another part of me ignores the whole what-if factor. It’s easy to ignore the danger when you either do not understand it or get too caught up and simply forget that it is there.

Life, in some ways, is far too short to worry about things like breaking a bone or such. But at the same time, life is precious and many a person has had his/her life altered significantly by the fall. I guess it’s what you make of it.