ADVOCACY SPOTLIGHT: Jessica Gavin

 

This is a series of interviews with influential PANDAS/PANS and Lyme advocates. How do they DO it? How do they contend with their own challenges as well as day-to-day life and advocacy fatigue? What can we learn from these incredible people?

From the hearts of some of the most resilient, hard-working, wanting-to-make-a-difference warriors... I introduce to you: Jessica Gavin, Founder/Director of PRAI.

How many years have you been a warrior?

I officially started my non-profit work about 6 years ago.  But I feel like I earned the stripes of "warrior" since the day my son was born in 2011 and I had my husband follow the doctor into the circumcision area to make sure he was safe.  From day 1 Dexter had colic, food allergies, a birth defect and within days life threatening infections.  So I quickly became his advocate and leaned into other moms for support and as new ones came into the fold they leaned back into me. I was introduced to TACA in 2013 and learned what real advocacy was all about.

 

What have you done?

So there's probably a line where you don't want to sound like a braggart and be humble enough knowing how much more there is to do while also being true to the accomplishments you've made.  I'm crazy proud of my work, especially after taking a giant leap back from it.  I'm even more proud from where I sit today than when I was in the thick of it. So to answer "What have I done" in a nutshell, I feel like my greatest contribution has been helping other parents answer the question "What can you do when there's nothing you can do?" You can do something.  No matter how tired.  How strapped.  How depressed. You can do something. 

 

I had no background in advocacy or non-profit work. I was a recruiter and unemployed when I had kids.  So I didn't have any training or skills and abilities that made me able to start a non-profit and raise over $600k in 4 years.  What I had was a desire to kick this nonsense in it's teeth so my kids had a fighting chance.  I've raised a lot of money for research, helped start many hospital PANS programs, brought together other non-profits to play nice together, joined non-profits that were not my own knowing it was best for our kids to work together, and made some serious lifelong friendships in the process.  And of course our patient registry (pansregistry.org) with a strong focus on parent intuition where I was the principal investigator.  I'm crazy proud of that. I find the question hard to answer by just listing accomplishments even though that's what I've tried to do here.  I know it sounds trite but truly what I have done is give PANS parents a louder and more confident voice among medical professionals, researchers and even among their own families.  That's the thing I'm most proud of.

 

What changes would you make if you could do it all over again?

I would have been much braver from jump street.  My brother asked me one time early on in my advocacy work when there was some PANS parent drama, "Does worrying about what other people think hurt Dexter, or help him? Does it get you further or closer to your goal of healing your own son?"  That question hit me like a ton of bricks.  And it stayed with me every time something (or someone) stood in the way of the work I was doing. But not until recently have I really embraced it to its fullest.  I've always been the kind that hoped everyone would like me and be okay with the decisions I made. But I learned if you REALLY want to do something life changing, something that really makes an impact for generations to come, you have to put that goal above all your insecurities and fears and lay it all aside.  I wish I had learned that year 1 and not year 6.

 

What part of this has been the most exhausting for you?

Oh, man.  This question is going to get me a lot of haters.  But if I really meant what I said in the last answer, I should probably be honest here.  It's been the PANS community.  With that said, I understand it.  I get it.  I am part of the PANS community.  I have the same exhaustion, the same frustration with doctors, and the snail's pace of research.  But when you're in an advocacy role and you put your own family aside so that you can advocate on a larger stage, it's truly crushing when there's criticism with how you've done things, or not done enough things.  Or questions about why you drew a salary for your grueling non-profit work, or questions and doubts about your intent of your non-profit program when you know your own heart.  That's been the hardest part.  I remember one time being told publicly I was harming the PANS community by not saying IVIG works as a one and done because "insurance companies might be listening in." And after my own son had 6 IVIG's and only got worse, I asked myself "Who am I doing this for?" Because I knew if I spent one tenth of the time focusing just on him, he would likely be much further along than he was. But I chose advocacy.  And that stung.  A lot.  But, I'm not a victim.  I made those choices.  And I gotta live with them.  I also remind myself that the more I could push the disease forward, the better it would help him. And candidly, he really is who I am doing this for.

 

Any ideas as to helping advocates to continue to be strong?

YES!  My best and most honest suggestion is every single PANS parent is an advocate.  So when I answer this question it's not just to the non-profit leaders or the ones on the forefront of the legislative work or running the local support groups and writing kick ass blogs like this one....  It's to EVERY single parent with a child with PANS.  There's always something you can do.  You can give a kind word and lift up another parent, you can write a thank you note to a doctor who did well by you so the next child gets better care, you can do a birthday fundraiser, you can even just give a little heart emoji to the mom who poured her heart out on a FB group so she goes to bed that night knowing she's not alone.

 

To be strong, you just have to do something, keep moving no matter how small it may seem to you or anyone else.  Even if advocacy means kissing your husband on the lips so your marriage doesn't fall apart and you can be the best parents you can for your kids.  Strength isn't raising tons of money for research or curing PANS. It took me a while to learn that.  It's giving the best of yourself, and forgiving yourself in the times that you have nothing left to give.  Believe it or not, just surviving is a huge feat of strength sometimes.  So when you see all the "advocates" out there and wonder "How do they do it?", we do it just like you do.  One foot in front of the other, giving the best you can, and forgiving yourself when your best is not just losing your ever-loving mind that day.