Exchange Me For a Star

Exchange me for a star
So that I may shine
To all manner of sphere
And all eyes wander from afar.
I will not leave what I have come to love!
I will break these chains
And break these rules
And dance on the heads of evil fools!
My heart pours out in holy love redeemed
Nothing was ever what it seemed.
The tapestry of tongue and fire;
This chalice of the holy host
For long was in my hand.
I knew no place.
I felt no land;
Yet I am captain
And I command
I will not leave such place of love.

This poem was written by my friend Rita Timmins, who passed away several months ago after a long battle with Hepatitis C and Cirrhosis of the Liver.  Rita lived into her 50′s with this disease, but her last few years were hard, terrible and painful ones.  She lived in British Columbia and had access to good medical care, and she fought the good fight, but we lost her.  She wrote this poem  several months before she passed, so I  decided to share it because it inspires me so much.  The remarkable thing about Rita was that she never gave up fighting, even at the end.   How many of use with chronic illness just feel like giving in sometimes?  It’s hard to keep up the fight, day after day, setback after setback.  It’s so easy to just let go of the world  and let illness take you over… but Rita didn’t.  She lived her life to the fullest as long as she could.  She was alone, unmarried and without much family or money.  But she had friends to check in on her and a poodle named Roarke who she adored, and a large online family.  It wasn’t easy, but she reached out to people through the internet, which is how I met her, on a photo sharing site called Flickr.  She took lovely photographs and wrote these wonderful poems and I admired her quick intelligence and strong spirit.   She tried really hard to stay in the world and not give up, and she did so much with the time she had and made many friends.  She was an inspiration to me, and this poem says it all, I think.  Please enjoy her photo blog  http://www.flickr.com/photos/ritatimmins/
Don’t give up the fight, no matter how hard it gets.  Life goes by fast enough, stay alive and be a part in the world as long as you can, however you can, even if it’s just here on the internet.  You might still make a difference, Rita did.

Bubble Girl

“There is nothing in which people more betray their character than in what they laugh at.” – Goethe

A few years ago when my Lupus was at it’s peak  it was such a scary time, and my doctors were not very reassuring.  The best of them said, “Well, we don’t know which way this will go,  try and hang on.”  I just had a large stroke and I needed to have heart surgery.  I had to take several immune suppressing medications that you Lupies might be familiar with… Steroids, Methotrexate, Cytoxin… I tried several to get the Wolf to calm down.  Having Lupus is not a party, it’s painful and frightening and potentially fatal, so you take whatever drug or treatment you can get to stop that.    The medications work by shutting off the immune response so that  Lupus stops attacking the body.  At that time my lungs, heart and brain were under attack and I was at risk of death or severe injury.  I was rehabbing from the stroke, but very weak and frightened.  Because they shut off your immune response,   Lupus medications can cause  you to become susceptible to many bacterial and viral infections -  you are open and vulnerable to the world, like a person on chemotherapy, or an HIV patient… maybe worse.   It’s not fun, but it’s the only way to treat it.

At that time an old friend of mine and her husband were having a party and invited me, but I couldn’t go because I was in such a bad flare.  It was the middle of winter and flu season, and I was a sitting duck for any flu or infection that was being passed around because of the immune suppressing drugs.  My doctor had advised me to stay away from large crowds and to avoid children and sick people during that time.  I told my friends  that I was unable to make the party and why, and to my astonishment they started joking about it, and nick-named me “Bubble Girl”, after the Boy in the Plastic Bubble movie in the 1970′s.  They continued to joke about this and called me Bubble Girl for the following year or so, when I finally stopped talking to them.

Has this type of thing ever happened to you?  Ridicule, mocking, disbelief from your friends when you tell them you’re sick and can’t keep up with every day activities?  After all, you just LOOK fine… you don’t LOOk sick… it must be in your head, right?  Or if you become disfigured from a Lupus rash, or you gain weight from the steroids… are there comments and judgements that you have to deal with from friends and family?   The paralysis from the stroke was mild, and the side of my face hangs just a little bit when I smile, but nobody notices.   I was lucky, my family never called me Bubble Girl, or made comments about my changes in physical appearance, but some of my friends did.  Their reactions varied, from  a few supportive friends sticking by me to some who avoided me because I looked bad and they didn’t want to associate with me because I was “ugly”, to some who actually made fun of my illness.  When you get sick, you really start to see the real personalities of your friends.  You see them for who they really are, and sometimes you are shocked and amazed at what jerks they really are.  You might have never known, or mildly suspected, but when it happens, it hurts.  It’s not like living with a chronic disease doesn’t hurt every day… then you have to deal with the betrayal and vicious mocking.  But know one thing – illness and old age will come to almost everyone….unless they die in a car accident or something unexpected like that.  Those people who mock you, who betray you or hurt you, are really doing it to themselves because when it’s their time to get old or get sick, who will be understanding and compassionate to them?  Not too many, especially if they chase off all the experienced or caring friends among them.

The friend who named me “Bubble Girl”  is  bow-legged and it’s an unattractive disfigurement.  Her legs are several  inches apart at the inner thigh,  and she wobbles a little when she walks and  everyone notices unless she wears a skirt.  I was her close friend for years because she was funny and smart and spirited and didn’t seem to care what people said or thought about her mild physical deformity, and I admired her for that.   I never thought she’d be the person to mock me for my disability, but she was.  I guess her life is just too difficult to deal with and she has to take it out on other people.  I hope I never become that bitter.

Most people don’t understand illness unless they have experienced it first hand or through a loved one. You can’t blame them for that… but cruelty or abandonment from people you thought of as loved ones… that’s always a painful thing to live through, sometimes as painful as the illness, if not more. But the good thing is that it can strengthen your character and make you a more compassionate person.  Our current American culture seems to glorify beauty, youth and money…and these are a part of life, but not the whole. Where there is light, there will also be darkness. Where there is growth, there will be decay, it’s the nature of the world. Illness and old age will happen some day to everyone, and we need to be there for each other through all the phases of life, and not ignore them. We will all have them.

Lupus takes so much from us, but it gives us things too.  It gives us a new way to see things, and to understand people that we didn’t have before, and a strength to fight for our lives and our self respect.   It gives us the opportunity to be compassionate to other people in their suffering and for that I will always be grateful, even if I am just a Bubble Girl.