Our magazine this month focuses on awareness. Most of us spend the vast majority of our lives becoming more aware and learning how to use those new pieces of understanding to broaden our own sense of responsibility and compassion for ourselves and for others. It is a life-long process of becoming aware of new information, investigating our own beliefs, and hopefully evolving as we move throughout our lives.
Awareness, and the impact it has on our lives individually and collectively is profound. So I’m honored this month to have an organization who uses education and compassion as the center of their work provide the feature article this month.
A friend of mine recently introduced me to the Lansing Area AIDS Network (LAAN). Honestly, at the time I was not aware of organizations such as LAAN, or the vital services that they provide for their clients. After doing some research, I arranged for them to come on my radio show so that we could all become a little more knowledgeable about where we are with AIDS today in Michigan and in our nation.
Once I started to become more informed, I wanted to do more and attended their annual gala where Jeannie White Ginder spoke the keynote address. You may recognize Jeannie as the mother of Ryan White, who catapulted to national attention after his AIDS diagnosis in the early days of this epidemic.
I am old enough to remember Ryan White and the days before AIDS existed, which of course means that I remember the panic within our society of what it meant to come into contact with someone who had HIV and/or AIDS. People were afraid to touch them, to breathe the same air, to use the same pool or utensils or homes.
We have progressed so much in our understanding of HIV and AIDS since those days. We know how the virus is contracted, we have additional drugs today that can help manage the disease so that it is no longer effectively an immediate death sentence. Yet in some ways, we have still so far to go with the disease itself, and with our approach to those inflicted with the disease.
For those of you who are new fans of CoSozo, you may not be aware of why I do this work. Stated simply, I do this work because I’ve experienced firsthand the hardship it can be when you or a loved one is diagnosed with a serious medical condition. I had a defining moment in my life when one of my loved ones was denied help because of a choice she had made to explore an alternative cancer treatment when her disease progressed. She wasn’t denied care because of the actual treatment. She was denied care because she had elected to include one alternative treatment during the progression of her disease.
For me, that defining moment changed who I was. The family had spent months caring for our loved one, worrying, researching, navigating the system, the options, and everything that comes with a serious health condition. In those moments, I felt frustrated and full of despair. Who were these people to deny care to someone clearly in need? How could they make such a decision when they were in the health care arena? To me, on that long list of emotionally exhausting, financially challenging, and physically demanding things to do when your loved one is sick or dying should not be a line item that involves trying to heal a pretty stiff dividing line between alternative and allopathic care. I believed then, and still do, that those choices are formed and made on an individual, very personal basis.
For me, that initial defining moment was infuriating because it made no sense to me that an individual’s personal decision to pursue alternative care prevented her from being eligible for other standard care when needed.That event filled me with so much passion that it resulted in an entire company.
I remembered how profound those moments were for me recently when I was talking with Kaye McDuffie, our feature columnist, about AIDS awareness and advocacy. Kaye was sharing with me some of the experiences of people who have touched her during the course of her work and I felt myself having another defining moment like I’d experienced when I first started CoSozo.
During my conversation with Kaye, I became aware that with HIV and AIDS, at times it is not really even a question of which type of care, but rather, whether we, as a society, believe those individuals are really worthy of or deserving of care to begin with.
I had lived through the initial fear and panic that AIDS had created in our world. I also was very aware that we had made substantial gains in HIV research to the degree that people who receive the diagnosis are often able to live long lives with the adequate care and medications.
In recent years, the time I did spend considering HIV and AIDS really has been through increasing my awareness of the devastation that has been occurring in Africa. So it was quite a pivotal moment for me to sit with Kaye to discuss the impact that occurs still today with HIV and AIDS patients right here in our own country.
Until those conversations it had not occurred to me that often, people with HIV and AIDS today are still often contending with our society’s tendency to measure compassion for them in direct proportion to our judgment of whether their actions contributed to the contraction of the disease.
This occurs not just with HIV and AIDS but other diseases as well. It’s easy for us to judge people and their illnesses if we believe that they have contributed in some way to the onset of that disease. Just because something is easy for us to do as part of our human nature doesn’t mean that it’s right.
Just pause for a moment and ask yourself whether you would have more compassion for someone who had AIDS or someone who had cancer. What if two people had AIDS and one contracted it from sharing a needle with a drug addict and the other contracted it as a result of the infidelity of her partner? What if one person smoked and had cancer and the other person had cancer and lived a healthy lifestyle? Do you feel any of these individuals deserve to be sick? If you feel any of these individuals participated in the onset of their disease, do you feel that impacts whether they should be eligible to receive care for that disease?
It’s easy to have judgments, but we all deserve more consideration and more compassion than that. Taking a few moments to consider each individual as a person rich with history, with experiences and events that shaped their life stories that led to their lives just as they are in this moment, allows you to develop compassion, realize we are all connected, and evolve as a human being.
My journey with CoSozo started as a personal response to a desire to help someone I loved. Now, all these years later, I’m only just beginning to realize how many extraordinary resources are out there helping people who are in need, each as a result of their own experiences that brought new awareness into their lives. Simply spectacular!
