Lyme Time

Reflections and Resolutions

Mon, 12/30/2019 - 8:15pm

If 2019 has taught me anything its that change is inevitable. No matter how much you fight for or against something, at some point, something is going to shift, to give way and change will occur. This is going to happen no matter how hard or little you try, no matter how quiet or outspoken you are and no matter how ready or not you are.

American author and speaker, John C Maxwell, who has written and sold over 16 million books on leadership and change, once wrote that “change is inevitable, but growth is optional.” No matter what happens to us each day, life goes on and it goes on around us and it changes us in many ways.

My focus as an advocate for the better part of the last six years has been to my community where I live and to the people in the state where I reside. I share my personal story as I traveled around the state, raising awareness about a growing debilitative epidemic that affects hundreds of thousands of people and yet, remains overlooked and downplayed by mainstream medicine. Sharing has not only been therapeutic, but it grew me and helped me to better educate which in turn, validated patients and their families.

Let me be clear ~ I did not choose to become an advocate. No, I had plans that once I got better, I would return to my job and make up for lost time. They say if you want to make God laugh, tell Him your plans and all I wanted, all that I prayed for was to get better. For me, change came but it came with a price. It came with growing pains. As hard as I tried to do it my way, the pains might have been from me rebelling against the well-lit path filled with opportunity that I found myself on every morning when I woke. I wanted to make a difference, but I had no idea what that would look like or entail. Aside from having first-hand personal experience with a chronic, debilitative illness that has taken the lives of many of my friends and acquaintances, what qualifications did I have to be an advocate? I mean, what could I personally offer to someone?

A voice. I had a voice.

A voice that could share from personal experience the ups and downs of trying to get properly diagnosis and treated by dozens of medical providers who all assured me that they could help me, only to find, sadly, that they could not. They were unable, or unwilling, to see what was right before their eyes. They choose to follow outdated guidelines and protocols that kept me sick and debilitated. Where on earth was, I going to find my voice in the middle of all the chaos? Well, it found me. You see, it was while I was sick, visiting doctor after doctor and encountering patient after patient, I was being transformed, I was growing, and I didn’t even realize it. The more opposition I encountered, the more questions I asked and when I didn’t like those answers, I kept asking and digging until I found what made sense. I had to unlearn and relearn everything I ever knew about primary care and medical providers. And truth be told, I wasn’t happy with what I was seeing and hearing. And so, I choose to do something about it.

Change is inevitable but growth is optional. I have found this to be quasi-true because some things we go through we are forever changed whether we wanted to or not. Growth can be lateral. It can be physical or mental. Tangible change we can handle like diet and exercise. It’s what we can’t see or touch, what’s out of our control that we fight against. As we roll into 2020, many of us will find change. Many will reflect and try to adjust their lives accordingly. How can we be better people? How can we engage better with one another? What do we need to add or remove to make that happen?

I no longer make resolutions as I feel that every new day is an opportunity for me to do better, to be better, to act better. But more importantly, if I do fail, I know that a do over is inevitable and I can choose to choose better, to act wiser, to speak slower and to listen more. 2020 will bring with it many unforeseen challenges and opportunities that will try even the best of us. If we fight against it, it will be more painful than it needs to be. If we take step back, take a deep breath and try to see the whole picture, we might choose to act or speak differently.

My computer screensaver is a quote from the great Maya Angelou, “Do the best you can until you know better. Then when you know better, do better!”

Change is inevitable and we can hold on with both hands, kicking and screaming and wasting our previous time and energy or we can let go and see what comes of it. It might not all be good, but it can’t all be bad. Once the dust settles and the emotions are not so raw, we can see it better and we can, from there, make better choices.

Alone we can do so little but together we can do so much ~ Helen Keller

Something that I’ve noticed happens to chronically ill people is that they tend to over time lose their voice. Not literally but figuratively. As the duration of their illness goes on over time, they start to feel invisible and as they slowly lose hope of ever regaining their health back, they become quieter and quieter thus losing their voice.

“When the world is silent, even one voice becomes powerful.”- Malala Yousafzai, Pakistani activist for women’s rights.

The power of using your voice, saying “I know better and I won’t settle for this” is becoming more and more visible but we still have a long way to go. Knowing that you have a choice, puts the power back into your hands. Knowing that there are medical providers who are following up-to-date evidence-based protocols, who are highly knowledgeable and who are heavily networked for your benefit, empowers you to know that you have options.

“Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience and the passion to reach for the stars to change the world.” ~ Harriet Tubman

For me, 2019 ended on a high note. The federal Kay Hagan TICK Act bill, that I helped write and worked on with Senator Susan Collins, in less than 8 months, not only passed favorably through the Senate committee on October 31st, it also passed favorably through the House and Senate again before getting signed into federal law by President Trump on Dec 20th. Aside from all the change and growth that stemmed from this process, this is one of the proudest achievement’s this advocate could have hope for ~ to know that my words and actions are making a difference in the lives of others.

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.”- Maya Angelou