Reminder of World Aids Day

RedRibbonIn 1983 I was working in Evanston, Illinois as a nurse. I was a new nurse. I was a young nurse — only 23. Evanston Hospital was then what it is now — a teaching hospital. We had a number of medical students as well as residents, at that time primarily from Northwestern University. One day a bunch of us were told to don gloves, gowns, and masks. There was a new disease, a new and terrifying disease. They didn’t know anything really about it. Just that it depressed the immune system to a point where the body can no longer defend itself against bacteria, against fungus, against viruses – the body is open game to any germ around. Thus the need to don gloves, gowns, and masks.

A week later the patient died; in the week preceding his death we hardly wanted to care for him. We were all terrified.

We’ve come a long way. We now know that AIDS is the end result of HIV (human immunodeficiency virus). We now know that if diagnosed early, the chance of living a healthy and normal life is high. We now know that over half of those diagnosed with HIV in the world are women. We now know that over 34 million people around the world are living with HIV. We now know that if a woman is on treatment for HIV, and gives birth, there is a high chance that the baby will be born HIV free.

This day, December 1st, is set aside every year to raise further awareness of AIDs. A red ribbon is the symbol and the goal of those who organize this day is to continue the fight of prevention, awareness, and treatment for HIV/AIDS around the world.

I urge you to learn more about this disease, a disease with a huge stigma affecting men and women around the world – particularly developing countries. For more information take a look at these facts compiled from the World Health Organization fact sheet. You can get access to the entire document and find out more here.

Key facts

  • HIV continues to be a major global public health issue, having claimed more than 25 million lives over the past three decades.
  • There were approximately 34 [31.4–35.9] million people living with HIV in 2011.
  • Sub-Saharan Africa is the most affected region, with nearly 1 in every 20 adults living with HIV. Sixty nine per cent of all people living with HIV are living in this region.
  • HIV infection is usually diagnosed through blood tests detecting the presence or absence of HIV antibodies.
  • There is no cure for HIV infection. However, effective treatment with antiretroviral drugs can control the virus so that people with HIV can enjoy healthy and productive lives.
  • In 2011, more than 8 million people living with HIV were receiving antiretroviral therapy (ART) in low- and middle-income countries. Another 7 million people need to be enrolled in treatment to meet the target of providing ART to 15 million people by 2015.

Code Pink

October is breast cancer awareness month. In my work this is an important month. It includes legislative breakfasts, educational sessions, screening events, and op-eds for newspapers.

Despite the plethora of information on breast cancer there are times when the information gets lost in the shuffle of life. Messages that would best go from our heads to our health get lost. In an effort to change that I’ve posted an infographic on breast cancer. It’s a different way of looking at what may be old information.

My hope is that you will not only look but act — if you’re young make sure the older women in your life see and know the facts; if you’re older make sure you are regularly screened; if you’re a survivor, share your story! We need to hear it.

Make October more than pink ribbons – make it action!

Code Pink

Best Before [d.a.te]

I have come to both love and rely on Robynn Bliss as a regular contributor to this blog. Those of you who read regularly will recognize her – those who have just begun are in for a treat. Enjoy this Guest Post from Robynn Bliss

I’m about to turn forty-two. The last 3 or 4 weeks I’ve started to hurt in odd places. The top of my spine, bottom of my neck is really sore. My right knee is suddenly aching. The elbow and wrist on my right arm are also giving me grief. How did this happen?

Up until a year ago I was in really good health. In fact last year my annual physical was the day before my 41st birthday. The doctor, a friend of mine, quizzed me on the usual. I had nothing remarkable to report. I was doing well. She did note that my blood pressure was elevated. That seemed strange to me. She ordered some blood work to check my cholesterol levels among other invisible ills. A few days later the nurse called me to inform me that my cholesterol was also high. What??! I had been perfectly healthy and now my blood pressure was up and so was my cholesterol!?

Since I turned 41 I’ve struggled with various aches and pains. It’s uncanny, really. It’s like I reached my “best before [date]” and now there’s no going back. I’m beginning to spoil. I’m beginning to rot.

I often take comfort in the reality that the houses we live in are really just tents. We are passing through. We are transients.  Recently a friend reminded me that these bodies of ours are also tents.  These bodies house our real selves. Please don’t misunderstand me. I’m not advocating gnosticism or even a Buddhist sense of detachment. We are wholly us. There is a mysterious connection between our bodies and our souls, between what we eat and how we feel, between head and shoulders, knees and toes and our hearts and sorrows, dreams and hopes. We are wonderfully knit together, an integrated pattern.

However there is a sense that the outer frame is wasting away. The tent rips, the poles rust, the pegs are lost.

In January my mother-in-law, Belva, turned 75. My mother in law has suffered for years from chronic facial pain. This particular disease is nicknamed “The Suicide Disease” because the pain is so intense and there’s no real hope of relief. It’s debilitating and yet she endures. And she never complains.  As I write this she is at the doctor’s office. They are trying a new thing. Somehow they’ll insert a pain blocking tool. I don’t understand at all how it’s supposed to work. I pray it does work. She needs relief.

I’m sure Belva felt years ago that she had passed her “best before [date]” too…. And yet though outwardly she’s been wasting away, inwardly she’s been renewed and equipped and graced with joy. She’s made choices that have kept her young. She’s learnt how to play piano in the last ten years, as a way to distract her brain from the pain that threatens to eat her sanity and peace of mind. She’s taken up the computer. She’s actively participated in a women’s bible study for years; finding solace in scripture and the comforts of the character of God. She’s enjoyed photography and has entered several competitions at the local fair.  Family celebrations are always out at the farm. Mom takes great delight in decorating the table for each occasion. This year she chose one of her granddaughters to do it with her. Next year she’ll choose another.  She’s passing on her love for beauty and space.

She has not allowed her pain to spoil her. Although on many days I’m sure she’s been tempted to give into it, to allow it to consume her, she has resisted those temptations with grace and courage. Her tent has failed her repeatedly but she continues on.

Our baby turned ten on the same day. Bronwynn is on the other end of life. Her tent is new and full of vitality. She has energy and enthusiasm for life and learning, for playing and pretending. Watching her invigorates me and fills me with hope.

I’m trying to resist the downward spiral. I’m trying to ignore the pains of age. I may be past that “best before date” but I’m trying to hope that the best is still before me. I’m not going to give into it. I want to be like my mother in law: brave and full of life, ready to try new things, engage new pursuits.

The tent maybe falling apart but I’m believing by faith that inside I’m being renewed every day.

Other posts by this author:

Story of Survival

One of the unexpected gifts of blogging has been the opportunity to connect with people world-wide who have a story to tell. Because I blog on a variety of topics from cancer to culture (and everything in between) I have been privileged to hear a lot of stories. I want to highlight one such story today and with it a link to a blog.

Imagine having a 6-month old baby girl, waking up daily in awe of this gift of life and finding out that you have a rare form of cancer? I think my natural reaction would be to hold my baby, and my breath, praying I would wake up from a bad dream

Heather Von St. James contacted me after I wrote a piece on breast cancer. Through her email I was directed to her site and quickly caught the passion present through cyberspace. Every passion begins with a story and Heather Von St. James is no exception. She is passionate about communicating hope and inspiration to people diagnosed with a rare type of cancer called mesothelioma. Her story is a hard one.

As a 36-year-old with a six month old daughter, Heather was diagnosed with mesothelioma. Mesothelioma is a rare type of cancer that occurs in the lining of internal organs. There are three main places where it occurs: the lining of the lung or pleura, the lining of the heart or pericardium, and the lining of the abdominal cavity or peritoneum. Anyone exposed to asbestos could be at risk for this serious illness, and Heather was unknowingly exposed. Heather was diagnosed in 2005, and as of this year is a 6 year cancer survivor. Her story reminds me that everyday heroes are present everywhere. People who are quietly, but passionately, taking their experiences, with all the hard parts as well as joys that are part of them, and making a difference.

Many people go through difficult times, and once they are over, the natural desire is to put them behind us, to move on with life and not have to think about the pain any longer. Heather has chosen to use what was painful in her life to help others – in her words “turn my pain into purpose”. Heather blogs at the Mesothelioma Alliance Cancer Blog. Take a look there where you can read her story. There is also more information available at the blog. If you know of anyone who is struggling with this diagnosis, I know Heather would be more than willing to connect with them.

I share my story as a means of hope and inspiration for others.  As a survivor, it is my duty to turn my pain into purpose and be someone that others can look to in situations like my own.  I want my story to help others overcome their fears when faced with any diagnosis, and to realize that giving up is simply not an option. – Heather Von St. James in The Healthcare Marketer

Thank you Heather – for being willing to step up and out with hope and help.