Lyme Time with Paula Jackson Jones

Can’t Touch This

Sun, 03/11/2018 - 7:30am

This past week, it became very apparent what I would write about. Something very personal to me, something that got me through the darkest, most painful moments of my journey towards health and remission — Spirit. In other words, my faith. This is not going to be a religious article but one filled with nuggets of hope and inspiration, that anyone reading can find to cling to and to aid them along on their own personal journey.

Chronic illness touches many facets of your life — physical, emotional, financial, even spiritual. No matter your belief system, looking forward to something and keeping your focus on that is a form of belief. It’s believing in something that you think will change your circumstances. Some put their beliefs in other people or tangible objects, while others focus on something more universal that has many names and many followers. This article is not about arguing faith. As I stated in the beginning, I’m writing about something very personal to me, something that got me through the worst moments of my life.

As infection ravaged my body and organs, pain became a permanent resident. It was with me every waking moment and robbed me of sleep, which in turn affected my recovery process. There was no reset button. I didn’t get a do over with each day. It was like the movie “Groundhog Day” with Bill Murray, where every day was familiar because it was a repeat of the previous day. I never knew what time it was, my days slowly ebbed into just existing. My cognitive function was extremely impaired. Visitors would come or call and always offer prayer for my healing. My sister would call from out of state and sing to me over the phone, offering words of encouragement. All of this fed my spirit which in turn nurtured my faith, the one thing this disease could not touch. Early in my illness, as I lost faith in ever getting properly diagnosed, I had to accept things as they were and that was a bitter pill to swallow. Denial is so strong. No one ever thinks that they won’t get better until weeks turn into months and then years. When doctor after doctor, specialist after specialist can not fix you, you begin to lose any hope of ever getting better.

The most important part of my role as an advocate is restoring hope to those who have lost it. It’s sitting with the patient and sharing my own personal journey and seeing the light sparkle in their eye as they begin to believe and hope that getting better is even possible. It’s receiving hugs from families struggling to find resources for their loved ones after helping them making the connections to providers and financial supports. It’s people coming up to me when I’m out in town, thanking me for all the hard work that I am doing and for not giving up. There are times when I feel like giving up and then my faith steps in and reminds me of what is possible, of all that has been accomplished so far and I am once renewed with a sense of purpose.

No matter what you are suffering from today, be it disease or the weight of being a caregiver, know this: the one thing that can not be touched is your spirit. You do whatever it takes to cling to hope and you will get through whatever mountain stands before you. You surround yourself with people who will feed your spirit and nurture its growth for that is what will sustain and carry you when all else fails.

There are many things that can block us from having faith, things that weigh us down, such as grief, pain or rejection, but none of that can touch our spirit. It is always there, standing by, waiting for us to lean on it for support, waiting to carry us to higher ground, prepared to uplift and hold us until we are once again standing on firm and stable ground.

Sometimes, we have to make the first move in order to regain connection with our spirit. Maybe you are sitting at home, questioning all the medical advice that you’ve been given and you’re struggling to make sense of it all. Seek out support. Come to a support group. Listening to others makes you feel less alone but importantly, it validates what you are experiencing. Support brings strength and encouragement. I’ve seen it with my own eyes. Tears of pain and confusion replaced with tears of joy from a having made a connection that lead to restored health.

To this day, I keep two songs in my tool box for when I, myself, need reminding to walk by faith and not give up. “Never Alone” by Barlow Girl and “Praise You in The Storm” by Casting Crowns. I would encourage you to google and play these songs. Storms don’t last forever and if we look hard enough, we can find rainbows.

The very definition of hope is “a feeling of expectation and desire for a certain thing to happen.” It is my hope and desire that as you are reading this column, that whatever you are facing, that you will embrace all the resources available to you and your family, and if you ever need to talk, you know where to find me ?

Paula is president of Midcoast Lyme Disease Support & Education, a nonprofit 501c3 and Maine-partner of the National Lyme Disease Assoc., member of Maine’s CDC Vector-borne Workgroup and active in Lyme legislation. You can reach her at paula@mldse.org or visit their website www.mldse.org