Ticks & Trauma--What I Have Learned

When someone once declared that this PANDAS/PANS/Lyme thing is a marathon, not a race, I did not realize that it might be a lifelong struggle. It's not that I didn't pace myself; I had to, as the Lyme that hid in my body surfaced after my children became ill.

I take that back. I don't pace myself. I hurl myself into activities and I don't slow until my body screams at me. Now, my entire inner being is begging to be released from clinging to the myths I fed myself: we will all be better, this too shall pass, if you work hard, you will succeed. 

Treating infections is not like studying to graduate with an A+ average. No matter how hard one toils, no matter how much knowledge one acquires, no matter how many treatments one attempts, there are no guarantees.

I have learned a multitude of things on this journey:

1) Corruption amongst insurers and medical organizations (and many others) is not conspiracy theory. If you know, you know. It's not my place to convince anyone. The info is pervasive even if one chooses to remain ignorant. Once you open that door, there is no other way to view the world.

2) Our kids are resilient. Not perfect. Not cured. But they are fighters. Some of our kids suffer every single day.

3) There are many paths to earning a high school degree. There is no one correct way. College does not need to be the end-all for everyone. 

4) Those children who seemingly sail through childhood and teen years with no problems (at least on social media) are not without their own medical or mental health issues. 

5) More people are questioning food and vaccines, chemicals and post-infectious reactions than ever before.

6) I can get by with the love of a few very important people in my life.

7) My PANDAS/PANS parent friends are some of the strongest people one can ever meet; they were not necessarily "made" that way but transformed themselves in order to be able to save their children. I would trust many of these people with my life. 

8) PTSD lurks behind every corner and will not disappear simply because our offspring is safe for today. In fact, PTSD sees an opening and bangs at the door. Caregiver trauma and parent trauma is haunting, taunting and daunting.

9) Even after all these years, medical practitioners do not have a cure for these illnesses. Too many pediatricians and internists know NOTHING about these diseases, still. Gaslighting continues to occur--I see it all over the support groups, when parents are distressed because of medical practitioners undermining them.

10) Flares are to be expected. Be prepared to treat at any moment in time.

11) Exercise is a strong antidepressant. An inability to exercise in someone who craves it can result in depression.

12) When treating, jot down your detox plan, for when the Herxheimer's reaction strikes, you may completely forget to take your burber-pinella drops, etc.

13) PANDAS/PANS is misnomered. It is NOT merely pediatric and in fact, can strike adults as well. Not only that, but the syndrome does NOT disappear when a child matures into a teen or adult. However, immune systems can be strengthened. Maturity helps an individual learn to conceal or manage symptoms.

14) Some of the hardest-working advocates for these illnesses contend with them themselves. A few parents of children with PANDAS and Lyme also suffer from these illnesses and are some of the most incredible people one could ever hope to know.

15) Moms are usually the ones on the front lines. A few dads are there also, but it can take years for dads to join the fight, to read information, to understand that these problems cannot be easily remedied or made to disappear. It's lonely for the dads who are fighting. Sisterhood amongst the moms of kids with PANDAS is strong.

16) Lyme and PANDAS can strike any ethnic, "racial", and cultural group. Not everyone can find their way to a diagnosis or to online support systems.

17) I am stronger than I look. I am also tired of being told that I am resilient. I want to go out and play and wipe my mind and body of tick-borne disease and despair. Some days, I wish to escape this heavy world. See #20 and #21. I have learned to compartmentalize. When absorbed in other activities (such as work), I can temporarily forget all else.

18) I carry enough hope in me for my entire family, as do many other parents with sick children. This in itself can be a burden.

19) We are tired of people not understanding that our children have compromised immune systems. That includes the government when it demands that we pepper our arms with injections, especially those that have not been thoroughly tested. This includes doctors who want to do vaccine challenges to see how a child reacts, when any trigger to the immune system can cause a flare (that can last months if not longer). We are fatigued when family members don't bother to read anything about these conditions and yet find it within themselves to judge, demand, or criticize. We are tired of being labeled anti-vax when we are vaccine-cautious and want to understand the science behind all medical interventions.

20) Dogs. Pure love. Incredibly rewarding.

21) I am far from being a kid yet I still look at a tree with lots of low-lying limbs and fantasize about climbing it. I still think it awesome to jump into a pile of leaves. But leaves hide ticks and even the tiniest of ticks can infect a fully grown person with Borrelia, Bartonella, Babesia and a whole lot more. So not worth it. 

22) At some point, we need to find ourselves and take our own lives back. That means limiting the time we research medical studies. That means soaking our souls in arts and sports and interests so that we are replenished. 

23) Life will edge forward no matter what. Years ago, i wrote a poem about my hands--I believed that my hands would age, as they do, and that my children would be better when my hands showed aged spots and crevices. That the passing of time would indicate healing. The passage of time does not bring about healing; we need to actively seek treatmemt. 

Sometimes our kids don't. Sometimes we need to let go and let them fall because we have no control. We cannot force our children to take those pills we discover hidden in crevices of couches and bookbags. We cannot require young adults to throw themselves into horrible herxes that require hospitalization. We cannot sage these illnesses out of the rooms of our lives.

But we can continue with our own accomplishments, pleasures, pursuits. And treatments. Be the role model.

24) A newbie parent who is in the midst of researching will talk only about these diseases. Sometimes the only way to quickly accumulate the knowledge necessary is to immerse oneself in it, even to obsess about it. The overwhelm of a newbie is all-encompassing.

25) There is no great plan or design. Our children were not chosen to receive these illnesses. There is no purpose to suffering. We can attempt to aid our children to find the lights in their own lives, whether it be through a therapeutic horseback riding program or another activity. This disease may linger indefinitely. Our job as parents will never be done. There is no great meaning hidden in our struggles; our world is existential. 

I have also learned how to not get what I want. I have had to change expectations, live only in today, value all the good that has been in my life. I wanted to be that family that regained what we had lost and leapt forward from there. Instead, we are the family that is learning to grow into the space our house settled, post, or even midst tornado. I am learning to deal with the grief of lost years, lost dreams and to create new ones.