My spiritual journey with Parkinson's

My Dearest Friend,

Several times now, you have asked me to tell you the story of my spiritual journey with Parkinson's. I've been reluctant to do it for a number of reasons – but when you asked me again earlier this Spring, I reconsidered. Enough people whom I admire and trust have made that same request, and it seems like God is nudging me to tell the story.

When my entire world was shattered

Ten years ago, I suffered through the process of being rejected in triplicate: my wife filed papers for legal separation, subsequently took me through divorce proceedings, and then petitioned to have our Catholic marriage annulled.

The initial separation was by far the most difficult part, because it cast me adrift in a world I did not want to be in – which mostly meant being separated from my children. And in the midst of that, I was dealing with an extremely painful, badly herniated disk in my neck, later corrected by a fusion surgery.

This was a time of intense emotional, physical, and spiritual pain. I was totally devastated. Through 14 years of marriage, I had invested in being the best possible husband that I could be. For the last 2-3 of those years, I had engaged in the fight to save my marriage. Then it all ended.

Then began an intense time of questioning: "How much will I be able to see my two children? What kind of a father can I be when I'm often not with them? What will my financial situation be? Who am I now? Why would God let this happen?" Etc.

By far my biggest concern was the safety and emotional health of my two daughters, who were then 14 and 11. I loved them so much, but felt so powerless to help them as I wanted to.

Offering myself unconditionally to God

So I did the best thing I could do: I offered myself totally to God.

I lay face down on the floor in my living room, in front of the crucifix on the wall, and with my arms extended prayed, "God, I will suffer anything, if only you will help my girls to grow up emotionally healthy and spiritually close to you. I'm already in pain, but I'm willing to suffer so much more. Even if it means moving them farther from me, please move them close to you. Please hold them to your heart and protect them like no one else can."

This began a long, difficult, painful, and ultimately joy-filled journey. Over the next few years, I rebuilt myself (from the bare ground up, it felt like) and developed a stronger emotional and spiritual toolkit. I rehabbed after my neck surgery and got back into hiking. I co-founded a consulting firm and worked with clients all over the country.

I worked hard to be the best child of God, the best father, and the best provider to my children and ex-spouse that I could possibly be. It was an extremely intense, difficult process – in which I made a lot of mistakes along the way. I had a lot of help and support from dear friends who stuck with me through thick and thin.

Finding stability and peace

Ultimately, four years after the initial separation from my ex, I arrived at a healthy place where things were consistently stable – and I started looking beyond my current state.

The lengthy Catholic annulment process concluded that an impediment was present at the time our marriage took place – meaning that in effect, we were never married in the the eyes of the Church. So I was free to consider marriage again.

As I was continuing through the process of evaluating whom I wanted to be for my future spouse, so also was I deepening my relationship with God and re-committing myself to His will.

I deliberately reconnected with the truth that – through the spiritual union that we all share – I could use whatever suffering God gave me to benefit anyone.

So I extended my offering of suffering and sacrifice to include any soul that God would entrust to me. Specifically, I started praying and offering my sufferings not only for my children, family and friends, but also for my future wife (at that time, identity unknown) and future step-children.

God reveals both the road and the companions for the journey

Shortly after that recommitment, I met and fell deeply in love with my current wife. Finally, I had met the true companion and partner I had longed for in the deepest parts of my heart and soul!

I also committed to being the best possible step-dad to my wife's four children (ages ranging from 11 to 19). Each of the children suffered from serious emotional and spiritual problems resulting from childhood traumas. The work to help them heal from these wounds is difficult, ongoing – and totally worthwhile.

My bride-to-be also needed support, nurturing, and healing. She was a single mom of four children, working two jobs (a stressful, full-time job during the day, and a part-time job in the middle of the night). She needed the time and space to fully complete the healing process from being in a damaging 17-year relationship with her former husband, ending in her own divorce and annulment.

She was – and is – a truly self-sacrificing and heroic person, who needed to be taken care of and shown the love of the Father in a way she had never before experienced. I knew that with the help of God's grace, I could give that to her – and to the children.

We were married about 18 months after we met, and our journey together began!

Over six years together, my wife and I have weathered a pandemic, three house moves, and two potentially fatal child mental health crises. My own daughters distanced themselves from me when I became engaged – a situation that took four years to fully resolve with lots of love and patience. We both went through significant career changes. We helped three children get through college, addressed various family and health-related challenges. It has been a wild ride!

Parkinson's as God's gift for me and you

We've also had to deal with my Parkinson's Disease.

I was diagnosed during the pandemic, about six months after my wife-to-be and I became engaged. Earlier symptoms, likely dating back several years, were not identified as Parkinson’s because they did not include classic symptoms like tremors.

Two years post diagnosis, my health was declining steadily. About three and a half years after the diagnosis, I became totally unable to work. Symptoms now regularly include tremors, muscle rigidity / spasms / cramping, nausea, severe fatigue, body temperature regulation challenges, night terrors, balance and falling issues, difficulty walking, and some emotional and cognitive challenges.

Fortunately, we used the intervening space between when our relationship began and when I became disabled to accomplish very important, physically and emotionally challenging things that would be much more difficult now.

I believe that God gave Parkinson's to me as a gift, in response to my prayer. It is a true honor to be allowed to unite my suffering to Christ's suffering on the cross. As my Parkinson's symptoms progress, I continue to be blest to suffer for my wife and all our children – as well as anyone else that God wills. I pray "Lord, please draw all of us closer to each other and to you each day. Heal our broken hearts with the power of your love."

Parkinson's has given me far more than it has taken away. It has taught me patience and humility, as my ability to help myself and others through physical action has diminished. I had to adjust to sudden "involuntary retirement" and learn how to revalue myself outside the context of my career. I've had to learn my self-worth as a "human being," rather than as a "human doing."

Parkinson's has helped me prioritize my emotions and energies towards those closest to me and away from unnecessary distractions (an ongoing battle). The disease has helped me to become more peaceful and joyful – even if because of physical issues, my smile "doesn't always make it all the way to my face."

Perhaps most importantly, I hope that the example of how I persist in serving my wife and children, through my own difficulties, helps them to better become acquainted with and understand the infinite, unconditional love of God. When they can see that I'm there for them – even when every movement I make or word that I speak is a struggle – I hope they can use that as a lens through which to see and believe themselves to be a beautiful child made in the image and likeness of God.

Now, I am for you

And that is the story! Between the emotion of the subject matter and my various ailments, it has been very difficult to write and has taken a long time.

My Dearest Friend, I want you to know that my mission of joyful suffering extends to you. I want to communicate your preciousness as a child of God, by loving you unconditionally and being willing to suffer for you as God allows and directs.

When you feel alone, abandoned, or in pain, remember that I am supporting you with my love. I am willing to suffer whatever God permits to help you heal and to bring you closer to Him. And my love is nothing... absolutely nothing... to the deep, mysterious, and wonderful love that our loving Father has for you.

May God's peace be upon you as you continue through this day,

John S.