Advocacy Is a War Worth Waging

It's been a very busy few months since I last blogged. I am proud to say that I remain undetectable and am adhering to my medication regimen. I just asked my HIV doc about switching to a single, once-a-day regimen and giving that a try again, but with multi-drug-resistant HIV she does not feel that is wise at this point, so again I will wait. Patiently. I'm not always this patient. In fact, sometimes I can be aggressive and demanding. Relentless and single-minded. Driven and determined. Not to mention perceived as quite annoying or even bitchy. Somewhere in that mix, however, is the recipe for a true advocate.

In just the past few months alone I have had to advocate for my own medical needs not just once but several times. Hospitalized for cardiac reasons, I had to insist on a second opinion, which thankfully prevented open-heart surgery as it proved to be unnecessary. After a major personality clash and what I perceived to be discriminatory treatment by one of LA's largest medical centers and one particular department head, I had to fight my way to top administration to lodge my complaints and then watch and hope that my written words would sear through his armored coat of prejudice and assumptions. My words worked.

I also had to locate, coordinate and ascertain a payer source in order to get Ketamine IV infusions to treat my pain and depression. That journey took me to Arizona and back, and I did get it covered by my workers' compensation and, thankfully, the treatments did give me some relief. Then, I had to locate, coordinate and ascertain a payer source for my upcoming evaluation, testing and recommendations/treatment at the UCSF memory and aging center to begin to get a handle on my progressive memory loss. Then, I had to formally separate out my care for two separate health systems putting cardiac, pulmonary and GI at one and HIV, neurology and psych at the other, coordinating doctors and insurances and Medicare. PHEW!# ... Just reading that makes me tired. It truly has been busy around here.

However, I am a firm believer that God gives you only what you can handle and that it's his plan we are walking through, not ours. As a self-identified control freak, I often find that latter part hard on a daily basis, but I'm working on it. I also believe some people are born to advocate, and others come to it in their own way and own time. I was literally born into advocacy. So when my doctor tells me, "You are a fantastic advocate," I chuckle to myself because to me it comes easily; it's not something I have to practice.

I've always had an opinion and a lot to say. I grew up in a household with four sisters. My next youngest sister Michele was born with a birth defect called spina bifida. This left a hole in her spine that needed to be surgically closed at birth and a shunt in her brain to remove any water on the brain. She is 11 months younger than me so we are "Irish twins." The story I have been telling ever since I was old enough to understand is that I grew up with a sister who was "specially-able" not disabled. She was not retarded. She was not slow. She was just different. Around me swirled the motions of advocacy. Her birth year was 1970. The Americans With Disabilities Act wasn't even in place until 1990. Yet, if you lived in our house, you would have thought it passed that day in 1970 when Michele was born.

I watched as my parents got involved in Easter Seals and other organizations. I watched as they took on the school district to make sure her educational needs were met in both special education and mainstreamed education. If we took a special class and there was some way for Michele to participate, she did. We tapped danced with our feet; she tapped with duct-tape holding taps to her hands with a wooden board across her wheelchair. We went on amusement rides; so did she. We rode horses and swam in pools; so did she. We had Saturday morning chores; so did she. I can still remember hers: She had to Windex everything and anything she could reach!

After I became HIV positive, I never let my status get in my way. I got married. We became foster parents. We became Fresh Air parents. We adopted two children and had one biologically. I traveled the world. I got my MBA. We bought and sold several houses and lived in four states. In all these instances, I had to advocate for myself or my husband or our unity or our marriage. Choosing to be public with my status when it fit the occasion was key for me. I never chose secrecy -- not until we made the move to California. It was only then that for several years I sent myself into HIV exile, and since my reemergence into care several years ago, I have had to advocate for myself so much more due to all that lost time and my disease progression.

Being an advocate is never an easy job. But advocating for yourself is often the hardest job of all, especially as women. Somewhere we learn that we are not worthy. That we are not deserving. That we should be silent. That we should be grateful for what we get. I call BS on that entire line of thinking. My bottom line is that if you can't advocate for yourself, then you can't be an effective advocate for someone else. In advocacy you must break down all walls, all barriers, and you must fight with your entire heart and soul and never take your eye off that prize.

I am so eternally grateful that I lived the life I lived and had the experiences I did and that my family structure afforded me that opportunity to be raised surrounded by advocates who weren't afraid to learn and then teach. My sister had to become an advocate for herself, and now at 46 she is living independently, married and has a 13-year-old son. My nephew is very special to me. I feel a bond there that in time will hopefully only strengthen. He himself will emerge as a leader in advocacy. His legacy has been predetermined, as has that of my three children. It's what they do with it as adults, and as parents, and then as grandparents that will count as they keep the advocacy moving forward through the generations to come.

Don't be afraid or ashamed to ask for help. Advocacy often works best when you can assemble your team of support or backers. When I have complicated doctor appointments or testing, I try to take someone with me now. I also have a special notebook that I use to take notes in and write out my questions ahead of time. This doesn't always happen, but I am trying to stay on top of things. It's all right to question and question some more. Demand that second opinion. Ask to speak to that supervisor if something just isn't right. Look for support in all your corners to help change something that isn't right or is demeaning or degrading or outright discriminatory.

Advocacy can be fun and extremely rewarding, whether for yourself and your own needs or for a partner, spouse, friend, parent, child, neighbor, etc. When you win the battle, then it's time to focus on the war. But take the time to savor that first win; it'll make all the difference as you wage your war.

Enjoy the rest of summer!

I know I plan to enjoy mine!

Until next time ...