Slightly Disturbing

There’s something slightly disturbing about hospital warnings becoming routine.  Well unless you work in a hospital, surgery or treatments being the norm of your day.  At that point it probably is routine in a non-disturbing manner.  I mean it’s just your job, you aren’t on the receiving end of warnings and cautions up to and including death.

It is slightly disturbing when it becomes routine to be on the receiving end of these warnings on a regular basis.  It is more disturbing to take it all as a matter of fact, almost nonchalantly.  And then suddenly it isn’t disturbing anymore, it’s just part of your medical interactions and you have long made up your mind to things such as your own mortality.

This is just all part and parcel of life with serious chronic illnesses.  You adapt, but perhaps your family and your friends aren’t as familiar and thus not as desensitized to it as you are.  After all part of dealing with serious chronic illness is understanding how it has altered your life and then making changes to strive for the life you want.  And so you are forced to confront or at least consider your own mortality a little earlier than you otherwise might have.  And this too can be slightly disturbing to some.

I’ve never really considered this aspect of my chronic life.  I know it exists, but it was the look on my friend’s face as I causally joked about being asked if I wanted life saving measures for an IV infusion that brought this home to me.  It isn’t normal, not for a healthy person.  And yet for me it’s so normal I don’t even think about it any more and that my friends is slightly disturbing simply because it is a clear sign of how far down this road of chronic illness I’ve already travelled.


Sharin’ ‘Em

A while ago I stayed at a bed and breakfast which had the most amazing food and quilts. Not together mind you, but the food was some of the most delicious and simple food I’ve ever had and as for the quilt, well it was perfect in weight and comfort.

It was the kind of place that you want to share with someone, or maybe it was the experience that I wanted to share most of all with a certain someone.  At any rate it was a lovely visit that i know a certain person in my life would have enjoyed with me.

You see this person is an amazing friend, one I’ve unfortunately taken for granted at times, ignored at times and such.  She is one of the most incredible people I know.  When I told her about my diagnosis of lupus she went out and did her own research, not just to understand the illness, but also how to be involved in and incredibly supportive way.

The delicious food was something that I know she would have enjoyed and we would have had a wonderful time sharing and tasting things.  As for the quilt, well this lady makes the most amazing hand stitched quilts.  Anyone who receives any of her handy work (she does al types of amazing, creative things made with love) is truly lucky for they are made with love and that love simply wraps around you.

Without ever saying it, her support, her love and her positivity has always been open to me.  Sadly I’ve been too stubborn at times to receive or be open to her positiveness.  As I lack creative skills,I am unable to develop a quilt for her to let her know how important she has been in my journey in life with lupus.

Holding It All

It’s funny how you never notice someone aging when you live with them most of the time. Its like suddenly one day, they have aged and you have no clue how that happened. It struck me today watching Beloved’s hand grasp the steering wheel. These are older hands, hands of a man who has experienced a great deal more distress and trauma than when I first met him.

Perhaps his hands also represent lessons learned through experiences and friendships. And they surely represent the journeys he has been on in that time.

He has a small scar, barely noticeable now, on his left thumb courtesy of a stubborn window that wouldn’t close, but gave way under pressure. I wonder, when people look at his thumb, do they notice the scar? Do they wonder how he got it or does it even matter to them.

His are hands of a man who hasn’t worked manual labor, which I’m sure some people notice when they look at his hands. He has been blessed and able to choose to make his work of the intellectual variety rather than manual. And his hand tell that tale in their softness and immaculate manicure.

It’s hard to believe that those were than hands that so tightly gripped mine when we heard the words “sorry, you have cancer”. Those hands were the ones that balled up into fists as he endured radiation and chemo. And those were the hands that slapped the desk with glee when he was told he was cancer-free now.

Those are the same hands, strong and sure, that can also be so gentle and unsure when it comes to dealing with my follies and health. Those are the hands that aren’t sure if they should touch me when I’m in pain, or try to soothe me when I rage at whatever it is that has my attention for the given moment.

Those hands have patted students on the back, clapped in celebration as students graduated and shook the hands of newly made PhDs. They’ve also held new born babies, and clasped the hands of the dying. They have held many a book and dropped many a tool.

And now, suddenly today, as I watched him drive the car, I realized that like the rest of him, his hands have grown a little older. A little different. Not that you would notice easily if you live with him all the time…but changed nonetheless.

Changed and yet the same. The hands that still reach for mine, as mine reach for his. The hands that hold me and are there for me are a little older, a little more experienced like the man they are attached to. Just as I’m sure mine have changed and altered over time and experience. Still we shall hold it and each other together with this changing hands of ours, hope and trust, faith and love that no matter what else comes our way we will somehow find a way to handle it.

Moments, Hope and a Step

In the perfect world there would be no pain, sorrow, suffering or death.  At least that’s according to some people.  Others argue that in order truly appreciate what we have we just know moments of pain, moments of sorrow, moments of suffering and sadly moments where death touches our lives.

For this new year I hope that we have only fleeting moments of pain that are eased and healed with love and humanity,  I hope we have sorrow that is tempered with good memories and warm hearts, and healing hugs.  For moments of suffering I hope we are surrounded with help, acceptance, love, and the healing balm of human touch.  For those moments when death comes to our doors, may we be offered shoulders to cry on, welcome arms to hold us, shared memories of our loved ones and the ability to open ourselves up to love again.

In other words, may we find our way towards acceptance, love, peace and humanity in such a way that we can offer the same to others.

None of these are easy to do, and in order to reach these goals I know I must change.  I must be more open and accepting of self as well as others.  I must use my authentic voice and feelings, which means being vulnerable.  For somewhere in that vulnerability is the key to love and humanity.  And to be able to lift up, support and encourage others who are near and dear to me as well as new people.

I do not anticipate this part of my journey to be without stumbles, maybe even a few false starts or getting a bit off track, but every journey must begin with a step.  A step in the right direction with the best of intentions and the desire to try and try again.

I am inviting you to join me on is journey, to help me, share with me and maybe teach me along the way.  I hope you have some comfortable shoes, a sense of adventure and an  open heart/mind to come along with me because company is always fun and greatly appreciated.

Storming in Gratitude

Friends I hate to say it, but today I’m not a happy camper.  Okay the truth is I’m never happy if I’m facing this odd thing called camping.  I need walls, a roof, hot water, cold water, running water, indoor flushing toilets.  Oh and my bed, coffee maker and electricity.  Anything less than that and I’m not going to be happy.  😉

I was working on gratitude, things I’m truly grateful for and yet continually take for granted when the wind picked up.  It picked up about half of the ocean and hurled it my way.  I’m not a fan of that.  Okay not half the ocean and not a tsunami just seemed like that.  What really happened is this thing. called a storm.  A storm with lashing, heavy rain and gale force winds.  I’m not really sure about how forceful gale is, but I can tell you she was knocking people over into the rapidly growing puddles.

Now normally I keep a good storm.  Rain?  That’s fine.  Lightening?  Love it.  Thunder?  Sure why not.  Except the dogs don’t like it.  And I’ve come to realize I’m not a fan of a storm that makes the dogs afraid to go out and send my neighbor hurling into the wall.  Also, well I know the floors could use a washing, I’d prefer to wash it my way, not with water just seeping in throughout the cracks in the door.

while I was getting my total unhappy camper face on, which looks like this 😫, I realized how fortunate I was to be in a place where I could get in out of the weather.  A place that was dry, warm and held my creature comforts.  And to be honest I was grateful to have the two four-footed ones around.  Because it’s really not possible to not grateful to have them in my life.

And, I reminded myself as I felt unhappiness creeping around the edges, I’m most grateful for not having to be a camper.  I’m grateful to not have to experience that which I do not like!  So I guess in a way I still got part of my gratitude exercise completed, just not exactly how it was supposed to be done.  But life doesn’t always follow rules or templates.  Sometimes you just get going on whatever path you happen upon and go along for the ride.

Lessons From Traffic

Isn’t it funny how depending on a view-point something can be enjoyable or use torture?  Beloved and I were driving through a small town and is ten the case when driving through small, rural towns the world over, something happens to bring traffic to a standstill.  IN this case it was goats and young children crossing the street, slowly and n a dreamy fashion that caused the traffic delay.

Typically we exit that things may take more time when we are driving like this, typically it isn’t a big deal.  But for some reason this time it drove Beloved and I antsy.  We didn’t have to be anywhere particular for any specific time and yet you’d think our lives depended on this traffic moving quickly.  At least that’s if you based it on our conversation.

Id like to say this is a one-off, that this is so out of the ordinary for me, but often times I find myself feeling impatient.  Especially when I in the middle of growing, traveling or learning something.  When I’m caught up n those moments, every second seems to be precious.

When im not n the middle of something, I sometimes don’t consider those seconds as precious for some reason.  In the end, when we get down to it all, isn’t every second precious no matter how we spend it?  Isn’t every interaction, every experience something we can learn from if only we stop and consider it in that light?

My journey, to find my mission certainly has me reconsidering how I see “ordinary” things.  There is potential for the ordinary to become extra ordinary if we allow it!  How about?  Have noticed these opportunities too or did I inhale too many exhaust fumes stuck in traffic? 😉  Maybe, if it is from the fumes, I’m okay with that too.

Not Like The Picture, Not By A Longshot

If you are at all like me, no matter how hard you try, whatever you make never ends up being exactly like the picture.  No amount of begging, pleading, poking or prodding will make the food or whatever it is that I am creating turn out like the picture.

Now some folks will call it artistic license, or creative flow.  There’s a thought that things will turn out the way they are supposed to for each individual, which. Of course means you never get to replicate the same thing exactly the same way each time.  Unless, and this is the big part, you happen to be one of those people who’s gift is to replicate things as they appear or as you always make them.

Me, as I said, I am not blessed with this gift.  Nor am I blessed with the gift to throw unique items together and pull off anything effortless and tasteful that is uniquely mine. So in my world, I use pictures as a general guideline and never show anyone an example of what the it should look like, rather they just see my end result! 😊

I guess you could call it my own twist on things.  I figure we each have our own gifts, how we come to find them and how we use them will change and if you are a bit like me you will probably always be awkward in your journey to finding your purpose, gifts and talents.  And if you are even a bit like me you will slog your way through this mess of life never really knowing or being sure where, what or how you should be using what you may perceive as your gifts.

Maybe, when I’m old, really truly old, I will have gained the wisdom to know what my gifts or talents might be.  And maybe, by that time, one thing I endeavour to create will turn out just like he picture, but I doubt it.  I’m too much of a rebel at heart! 😉