When Your Parents Told You So…

When I was younger, my parents used to tell me to write a letter to the person I was upset with.  They didn’t tell me to send it, and in fact they never did let me send it, but they would insist that I write the letter.  The idea was that once I put my feelings and thoughts to paper I would find some healing or at least a way to move on.  And the letter would be ripped up or tossed on the fire so that I would have the satisfaction of watching it get destroyed.

Now when I was first diagnosed with lupus it occurred to me at some level that I could or maybe should write a letter to lupus.  Not that lupus would care, however it would still provide an outlet for things.  I didn’t do it.  I felt instead that I would be better served by taking that bundle of emotion and tying it into other aspects of my life.  And that worked well when it came to sorting out eating healthier, exercise regimes and such.

To be honest throwing that energy into learning everything I could about the illness and getting lost in school too all helped me.  But now, now I have time to consider things from a different place.  A place that reminds me that I have lost many things, and it’s okay to be angry about that.  It’s okay to rage about that anger, it’s part of the grief process.  And it’s okay to grieve for who I used to be.  So I have taken that idea and decided to write-up an obituary of sorts for some of my dreams and hopes.  And at the same time I have taken that idea and also written a gratitude journal for all the things I’m grateful or appreciative of since lupus has come into my life.  So maybe my parents may have been on to something.  But I’m going to do it my way!


Goodness Me

His voice drifted lightly to where I was sitting. Melodic poetry swirled around me from the kitchen, where he was singing as he cooked.  Van Morrison, I suspected.  It was, after all, one of those days.  A day full of cooking and music while I sat uselessly in a chair trying to forget about harsh and ugly words.  Those which had flown so easily from my lips to lash at him.

And now he was in the kitchen, singing what I was certain was Van Morrison’s songs while he prepared what sounded like enough food to last at least a month.  Van, after all, was skilled at putting poetry to music and Beloved was nothing if not a lover of poetry and music. He also happens to not be a bad signer, having spent time with choirs in a previous life.  Me, I can’t carry a tune in a bucket and I have been offered money to not sing.

The four-footed one happens to be a lover of music, well at least fond of music.  She is a lover of food and will endure even my version of singing if it means a scrap of food might come her way.  She is also no fool, she could sense this mood that had drifted down upon me sometime while I slept and thus had given me a wide berth all day long.  She and Beloved are no fools, opting to provide me with my own space and ignoring my mood.

It is hard, these times, when I realize just how little I energy or strength to do anything.  It is hard to allow that lupus has found an upper hand again and now I must sit and rest, waiting until I had found the way through this latest downturn.  While Beloved had to manage the house, the dog, his needs and mine all on his own.  Not that he complains, not ever, which makes it even worse somehow. As though he is above this, saintly next to my dark sinned filled wretched soul.

The harsh, ugly words had been hurled his way after he told me to get some rest when he brought me a book to read, a knowing smile just about there on his lips. I had wanted to throw that book at him.  Truthfully I wanted him to have to sit in the chair, rest while the world went on all around him.  I’d not ask him to sit like that for long, just enough for him to see what it was like for me as fun went on where he was not.  (Not that my singing would entice even the most deaf of demons to come into where I was, but it  you get the idea.)

I knew, as the last lines of a song hung gently in the air, that soon he’d come to see if I wanted help heading up to bed. As if I were a small child who needed to be told to go to bed, or worse needed to be carried to bed .   Oh yes, this then is lupus at its worst. While not the disease, no the disease can be so much worse. Rather this is me at my worst, Beloved and the four-footed one being targets of my rage since I cannot throw a book or toss harsh words at lupus in any way that causes any damage.



Not Impressed

Someone once said that with a quarter you can call someone who cares.  I may have even said something to that effect from time to time, typically when I have been feeling less than charitable.  When you break it down, I’ve basically told someone that s/he should find someone else to tell his/her sorrows to because I don’t care to hear it.  In some cases it’s come down to not caring about the person let alone the issue.  I know, not nice.

It got me to wondering though, what would I do if I didn’t have someone to unload my problems, rants, complaints and general mess of life upon?  What would I do if someone told me that s/he didn’t care?  I mean aside from feeling hurt and what you.  Well, knowing me I’d take the quarter that was being offered although I can’t remember the last time it cost only a quarter to make a call from a pay phone (and come to think of it, I can’t remember the last time I saw a pay phone) and probably think ill thoughts of the person.

Knowing me I’d not only take that quarter and be filled with anger, but I’d find a way to get my issues heard.  No I wouldn’t write the latest greatest song based on a relationship gone bad.  Nor would I write some heart-wrenching poem.  I’d probably write some seething email or letter.

Of course the fact is that I cannot imagine being in a situation where I needed to tell someone something and that person told me that s/he did not care.  But then again I rather enjoy being alone and not super close to people or needing people that much in my life.  And maybe, just maybe, that’s why I cannot understand being in that position.

Rolling Away From Anger Towards Gratitude And Appreciation

Someone Beloved knows from years ago was recently in the media discussing the importance of enjoying the little things in life while having gratitude for each moment.  We didn’t catch the live segment but a friend from Beloved’s home sent him a link to the recorded discussion.

In between rain storms and my need to rest, Beloved decided to listen to the discussion. He wasn’t expecting anything ground breaking or such from it.  He was just curious, idly so as he out it, because when he knew him, Beloved would not have suspected the boy to grow into a man discussion gratitude or appreciating the little things.  In fact when Beloved knew him best, he was an angry young man who was at war with himself and the rest of the world.

Beloved was curious as to what would bring about such a change, what life experiences had provided him these lessons.  It turns out a horrible car accident initiated the experiences which in turn taught the lessons.

A car accident which resulted in paralysis in basically the blink of an eye.  He indicated in the discussion that a spinal injury can prevent the body from properly regulating temperature.  He said a spinal injury can make you wish you could feel the rain against your legs when a summer squall suddenly popped up.  Being paralysed and dependent upon others helped him to relearn that life is made up of moments of rainbows and gentle breezes, the trick is to enjoy it all as best as you can.

Beloved listened to the discussion a few times and noted whether you are in a wheelchair or suffering from a chronic invisible illness, you tend to savour the good moments more than others would. I suspect it is because you know the dark moments that others can never even fully dream of.  And I know from my experience you don’t have the energy to keep fighting everyone and everything when you have to heal yourself.


Spontaneous combustion has always intrigued me. I mean one minute a person is just sitting there, probably in his/her favorite chair, minding his/her own business and then WHOOSH up you. Well part of you anyway because in all the pictures I have seen there are still parts of the person left behind, usually feet and a portion of the legs. I’ve always wondered about if the person is even aware of what is happening as this combustion takes place. Surely if the person were to be aware, it would be super brief. And I must confess to being intrigued how a person can be consumed by fire and nothing else around the person be destroyed.  

As a child I had many questions about spontaneous combustion. I blame my mother for she used to say things like she was getting so mad that smoke would soon be coming out of her ears. Was that the trick? Did a person get that made that they just suddenly went up in flame? (My mother never did reach the smoking point, not even the smallest of wisps of smoke came from her ears, so I never got to witness what could be the beginning of the process. To be honest there were times I wondered if her ears did smoke, what would I do about it, throw water on her or get the extinguisher.)


As I grew older, I kind of filed the whole thing to be back of my mind. It got buried between school work, then my job and about a million useless facts that I must hang onto because someday I just may need them. (Of course by the time that day comes around I won’t’ remember where I filed those facts; heck I will probably on some game show and blurt out the wrong answer as the tiny person in my head desperately pulls out a useless fact not worrying about how it fits as an answer.)


And then today spontaneous combustion hit me again. No I did not ignite, although I did wish for a moment that someone else would just go up in smoke. I may have a bit of a morbid mind come to think of it because I’m pretty sure no one else in the budget meeting had thoughts or wishes of the accountant suddenly combusting before our eyes as he explained why we can’t have this or that and why we need to cut more things and do more with less. After the accountant did not go up in smoke, I wondered if maybe my mother was onto something, if maybe a person could get so worked up, so emotionally wrought that s/he would just go up in a plume of smoke. Just a theory because I’m not that angry and no one else is volunteering to let me test out the theory. 

Thrown For A Loop, Lupus Style

It’s not been an ideal day.  It started off with a dreaded eye appointment.  I used to enjoy visiting with my eye specialist, after all it was just precautions from lupus and the meds I take.  But then, well lupus happened.  And suddenly my eye sight has been failing me which has resulted in much-needed eye tests that weren’t pleasant.

And the results of the eye tests today were less than ideal.  They were actually worse than I had expected.  They were, in fact, worse than the specialist had expected.  He apologized for my results, as if he had something to do with them, rather than just interpreting and relying them.

We both knew that my eyes would show some signs of failure, we just didn’t think they would be as bad as they were.  But now we know, so we have made plans and new glasses have been ordered.  And we will visit more frequently.

Now that’s the positive spin, and it’s one I’ve shared with a few friends who asked how the appointment went today.  That’s the way I cope with lupus.  Except that’s not the whole picture of how I cope.

You see I didn’t just move right from disappointment to setting up more meetings with my specialist.  Sure his office immediately booked other appointments, but I wasn’t all sunshine or positive at first.  And oh no.  I was angry at losing one more piece of myself to this illness.  I was furious that the ,educations I take to control my lupus are partially to blame for my eye issues.  I grieved for my loss and I was (to be honest I still am) scared for my future.

However, I am still able to function and still able to be a face of, and voice for, finding a cure for the cruel illness, the chronic roller coaster that lupus has brought to my life.

Tears and Theft

Today I was grateful that the rain came back.  Because in the rain, no one sees your tears and I had already used up all the hot water in the shower.  Besides I needed out of the house.

Aging is a hard thing, when it is coupled with dementia or Alzheimer’s it’s a much harder thing.  When you spend the bulk of your time surrounded by people your own age or younger you can forget the harshness of aging.  And then you are confronted with it, in a loved one or friend.

Aging slows us down, sometimes limits what we can participate in or how our voices are heard.  These are cruel truths for most people as they age.  Through dementia or Alzheimer’s into the mix and the isolation becomes greater.

A dear family friend, whom I haven’t seen in a while, stopped by and I was surprised at how much she had aged.  Her movements were that of an older woman, and she carried herself in a careful, guarded manner.  When she lifted her cup I noticed a tremor in her hand, and a slight palsy to her neck.  She was ever so careful with her words, apologizing  for not using the correct term or such.

She had apologized for not coming by sooner, but it was really I who should have said sorry.  But I didn’t, not st the time.  Instead I wrapped myself in the excuses of working, being busy with work, my illness and just every day life was safe reasons why I hadn’t stopped by to visit her.  The truth is, I was afraid.  Her aging made me fear what my future might be like and so I hid from her to pretend that aging doesn’t happen.

i also hid from her because her sister has dementia, slow progressing dementia and so she is aware of what she is losing.  She once said dementia is like being robbed of your memories and who you basically are.  But the truth is, dementia and Alzheimer’s both act as thieves in other ways too.

For these illnesses feed the fears of “normal” people in such a way that we stay away from those who have the diagnosis.  This means that our irrational fear rob these people of our compassion, friendship, love and human touch.  And some how most of us draw comfort in being “too busy” or “caught up” and thus pretending that this part of aging doesn’t happen.

And so, dear friends, I was grateful for the rain to hide my tears.  Tears of shame and regret, at not being there more often.  No one was asking much of me, just a few moments of my time but I was too afraid to give that.  These tears were mixed with tears of anger and fear.  Anger at myself for not being able to see and meet the need for snore human who was being cut off from visits etc.  And fear that this would one day be my future.

I was also grateful for the rain because it washed my disgust with myself away and instead watered and helped grow the idea that in order to be more human I must not hid from my fears of human fragility, certainly not under the guise of being busy.