20 minutes matter

I normally write about patient advocacy and living with a chronic illness, but today, I’m really moved to write about something that has been really troubling me the past few days.  There was a case in California involving a Swimmer who attended Stanford University who was convicted of raping an unconscious woman behind a dumpster.  As I understand it, this isn’t a he said/she said because witnesses came across the attack in progress, broke it up, and called the cops on the man.  This man (now age 20) was found guilty of rape but was only sentenced to 6 months in jail and will likely get out in 3 months.  I find that completely appalling that a young woman could be raped while unconscious and her rapist gets a literal “slap on the hand”.  This convicted rapists father wrote a pleading letter to the judge for leniency.  I completely get where this father is coming from.  He is pleading for his son whom he loves.  He pleaded that his son should receive probation instead of jail time because (and I quote from the father’s letter printed in the Washington Post)   “That is a steep price to pay for 20 minutes of action out of his 20 plus years of life.”  I must have read that sentence 20 times to try to process it.  A 20 minute rape that occurred during this young man’s 20 plus years of life is minimal enough to warrant probation over jail?  Immediately I wondered if Dad would feel the same if in fact his son had been raped for 20 minutes.  20 minutes of rape destroyed this young woman’s world.  20 minutes of rape can’t be erased even by a guilty verdict.  In 20 minutes I can read this fathers letter and lose my mind at how ambivalent he is towards the victim.

20 minutes has been rattling around in my brain for two days.  I tried to think of 20 things I can typically do in 20 minutes and I came up with the following:

  1. shower
  2. vaccuum
  3. clean the bathroom
  4. make dinner
  5. write a letter or email a friend
  6. take the dog for a walk
  7. call your parents
  8. boil and egg
  9. take a nap
  10. clean the litter box
  11. sew a button back on to a shirt
  12. eat lunch
  13. run a mile
  14. chat with a friend
  15. read
  16. exercise
  17. play with your kids
  18. meditate
  19. write a blog post
  20. iron clothes
 This is an innocuous list.  Obviously, rape is anything but innocuous.  It’s a serious and violent crime.  The unfortunate part of this case is that a judge deemed that 6 months in prison was an appropriate consequence.  That is unacceptable.  That is appalling.  That is just wrong.
As a patient advocate, I try to speak out for not only myself but for other #spoonies living the #chroniclife.  Now I want to advocate for a victim of a horrible crime.  I don’t know her but I can only imagine how she feels.  I want to honor this young woman by taking 20 minutes a day to do something positive for others or myself. 20 minutes a day to do something positive for a friend, family member, neighbor, stranger, or even for myself.  There is not way to erase the ugliness of a rape, but maybe if we can spread beauty through kindness and uplifting action, we can honor a young woman who simply deserved better.  We need to show that 20 minutes matter.  
Some will say I sound like a naive Pollyanna, but I hope that others will join me to try to pay it forward for the rest of June (if not longer).  I will tweet out things I will do for 20 minutes on twitter @lolabellaquin.  #20MinutesMatter  Join me.

The life of pain…

I was speaking to a friend this week about pain.  When you hurt yourself, your pain typically stays in one spot.  You break your leg, you expect your leg to hurt.  When you have a form of autoimmune arthritis, your pain travels….sometimes in pairs.  Pain is like a box of chocolates, you never know what you are going to get when you wake up. Somedays it’s in your ankle, the next day it’s in your hands.  It’s infuriating and unpredictable.

I speak to a lot of people who are in the various stages of living with pain.  People new to autoimmune arthritis diseases always ask, “When will the medication start to work?”  Such a difficult question.  I always joke that I kissed a lot of frogs (medication) until I found my prince (my 5th biologic).  The pain never completely went away for me.  I feel a level of discomfort daily. I’ve learned to control the pain with medication and meditation.  It’s not easy, but this pain has become such a part of me that I feel strange when there is none.

This week I was in a car accident.  I’m not going into details but I can say I’m now experiencing a new kind of torment.  After so many years of living in pain, I expected that I would just handle this new situation (I don’t normally have pain in those areas).  Uh, nope.  This pain is so foreign to me that I don’t know how to manage it.  I am kind of in shock.   Had I become cocky in terms of my ability to handle pain or my ability navigate my way through life with it?  Has pain from RA set me at a level in which I can’t handle anything else?

I’ve always felt like I live my life with pain. The onset of my disease started with pain that was so strong it made me feel sick.  Once I found medication to take the edge off, it settled into a constant ache with moments of sporadic stabbing pain.  The pain originally started in my kness.  Eventually it moved to other parts of my body but my left ankle became my nemisis.  Years later, I broke that ankle.  Snapped both the fibula and the tibia from my foot.  The surgeon repaired everything and told me, “I repaired RA damaged areas because I couldn’t give you a Lamborghini repair over a run down old chevy”.  After 6 months of painful physical therapy, I had a brand new “relatively” pain free ankle….and suddenly RA thumbed its nose at me and moved into my hands for the next 2 years.  It’s not only in my hands, oh no, it strikes most of my joints except my toes, neck and back.  As for that left ankle, it swells like crazy but the pain isn’t as severe as it had been.

The first few days of whiplash literally knocked me off my feet.  I was experiencing pain in unfamiliar spots.  A type of pain with which I am unaccustomed to processing.  I wasn’t able to eat because my jaw hurt and swallowing was difficult even with liquids.  I couldn’t sleep because finding a comfortable position was so difficult.  Daily, I feel the level of pain changing.  I can do things to help reduce its impact but I can’t really force it to go away until it runs its course.   I’m a patient who needs patience and a lot of physical therapy.  It’s really not easy.

Whether it’s pain from autoimmune arthritis, a broken limb, whiplash, or simply stubbing my toe.  Pain is a constant in my life.  It is personal, invasive, and has a life of its own.  I’m unfortunately along for the ride, but I refuse to buckle under the pressure.  I’m dying to stay home from work, but am out of sick time, so it’s not an option.  I’m dying to stay in bed all weekend and sleep away the pain, but that is not an option either.  Although I am not a fan of his, Lance Armstrong summed it up best for me, “Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.” I need to find my strength again and face this new painful battle in a more effective way.   Wish me luck.