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Faith

A Random Thoughts and a Look Towards 2017

Well, December completely blew up on me. I’ve been sick off and on since Thanksgiving and have been trying to keep up with the usual holiday craziness and various medical appointments that HAD to be this month.

I’ve learned to let go of most holiday expectations and accept what I can and cannot do. It’s been said that expectations are premeditated resentments and that has certainly been a problem for me in the past.

I’m continuing to practice positive self care as much as I can. For me this looks like:

*Minimizing sugar intake

*Yoga every day I can

*Plenty of rest

*Saying no when I have to

Looking ahead to 2017 I’m trying to take some time to see what I really should be focusing on and be more intentional with my time in 2017. I probably won’t be writing much until after the holidays and am trying to minimize random social media scrolling. I’m really finding that it sucks the life and creativity out of me.

Thank you all who visit my blog for your comments and support, and I’ll see you soon!

An Easter Sunday Revelation

easter sunday

I’ve been sober since 1986 and a Christian since late 1988 which has now been for most of my adult life. In the daily-ness of my everyday life of homeschooling, shlepping to appointments, homeschool and church groups, the gym, social media and whatever errands the week throws at me it’s been easy for me to forget where I came from and how much I have to be grateful for.

Until yesterday.

My church’s music ministry excels every Sunday of the year but there was something very special going on yesterday. I was just focusing on the beautiful music and worship when I suddenly got an intense visual picture of another Sunday many years in the past. It was the morning after a cocaine-fueled Saturday night. I got home Sunday morning and was horribly sick. My heart had a weird, irregular beat. I wondered if I was dying. I thought I should go to the hospital but then I would have to admit to what I had been doing. So I decided to stay home and ride it out. I was so weak I couldn’t leave my room for several days. I was plagued by the usual remorse. “Why do I keep doing that?” “Why does this always happen?” “I’ll NEVER do that again!” This was followed by the usual hopelessness and depression that threatened to suffocate me.

And as I was reliving this incident this passage was shared from Romans 6.

“For we know that our old self was crucified with him so that the body ruled by sin might be done away with, that we should no longer be slaves to sin, because anyone who has died has been set free from sin.”

Yesterday, somehow this verse struck me in a different way, a more glorious way, a way I had not experienced before even after sitting through sermons from Romans many times through the years. I’m not usually very charismatic but yesterday I really understood what it meant “to be in the Spirit on the Lord’s Day.”

It can be easy to be lulled into complacency and to take things for granted but this was a reminder that God’s mercies are new EVERY morning and great is His faithfulness! He’s not finished with me yet.

Some may wonder why I’m so open about this. In the rooms of recovery I learned that I can only keep what I have by giving it away. I’m not able to get to meetings at this time of my life so the only way I can really give it away right now is through my writing. It’s not about me trying to look good. It’s about sharing my experience, strength and hope so that maybe someone else who is struggling can find Christ and recovery like I did.

Remembering Bill Irwin: Blind Courage

Bill Irwin Blind Courage

The first time I heard about Bill Irwin was during a church service sometime in 1990. The pastor announced that there was a blind man hiking the Appalachian Trail all the way from Georgia to Maine and he asked the congregation to pray for him. I couldn’t foresee that we would actually get to meet him, become friends with him in the not-too-distant future or know the deep impact that he would have on my life as disability came sooner than I could ever imagine.

 

In 1991, my husband decided to start a Came to Believe retreat in Queens, New York. These retreats freely spoke of the influence that the Bible, Oxford group and devotional ideas that helped early AAs to get and stay sober. We thought Bill would be a wonderful speaker for our event and were very excited when he accepted our invitation.

One of the wonderful gifts of The Fellowship is that in spite of the heartache of our drinking and drugging histories, and the price we paid to get to AA, we can find laughter and camaraderie with other alcoholics and addicts. Bill had us hysterically laughing as he shared some of his adventures with us. But most importantly, he showed us the transforming power of Jesus Christ that turned his life around and became a powerful witness to the many who have heard him speak or read his book Blind Courage.

When we met Bill, I was 30 years old and untouched by disability or limitations. I went on a few long walks (would they be anything else but long?) with Bill around Queens and Brooklyn. My husband has never been fond of long walks. One time Bill had him walk from Brooklyn to Manhattan in the snow and then wanted to walk back. He responded, “I don’t know about you, but I’m taking the train!”

We hit it off very well with Bill and he invited us to visit him in North Carolina. He lost his grandson tragically just before our visit but he insisted that we come anyway. My daughter was just five months old at the time and took her first crawl toward Orient. We had a lot of fun and ate fabulous barbecue just about every night. (This was before the Hallelujah Diet!)

bill irwin

 

bill irwin

 

Bill Irwin

We moved to the Tampa Bay area of Florida in 1994 and I had three more kids. Motherhood has not been an easy journey for me. Among four kids we have diagnoses of scoliosis, NF-1, Down Syndrome, a congenital heart defect and learning disabilities. I was overwhelmed just about all of the time.

I was at a Down Syndrome conference around 2009 and remember very clearly the speaker saying that disability would happen to all of us eventually if we lived long enough. Like anybody else, I figured that was way off in the future.

It wasn’t. In the summer of 2010 I began to experience distressing neurological symptoms causing my  neck and shoulders to twist involuntarily, as well as a head tremor. I was quickly diagnosed with cervical dystonia, a neurological movement disorder. It is a devastating diagnosis, and doubly so as I was already a special needs mom. I couldn’t drive and could barely get off the couch to take care of my family. Six months after my symptoms started, my son had a cardiac emergency and had to get a pacemaker.

Although I’ve been sober since 1986, depression and anxiety are still a real problem for me. They got worse with the intensity of my symptoms. I researched cervical dystonia online and was distressed to learn of some suicide attempts and drinking. I knew I was in a dangerous place but I could not get myself to a meeting.

I made a decision I was going to hang in there for my family and chased recovery as hard as I had chased drinking and drugs. I found people online who were living with dystonia positively. The one thing I found they all had in common was exercise was a big priority for them. Initially I couldn’t walk more than a couple of hundred yards on my street. But with physical therapy stretches and yoga, I slowly started to improve.

And then I remembered Bill and his walk. I started to think that God had sent Bill into our lives as His advance man to show me how to live with disability and recovery. It was hard for me to stay in touch with Bill as our lives had become so hectic, but I often thought about the walk. The part I remember most clearly was when he was crossing the treacherous river. How often I’ve felt like that in my own life.

I was saddened to learn that Bill went Home last week. Saturday I went to bed teary eyed thinking about Bill. Sunday morning I woke up to find out that my son Nicolas had made the cover of the local section of two area newspapers. This is Bill’s legacy in our family. Overcoming and perseverance. I will surely share Bill’s story with Nicolas as he has the ability to understand that nothing has to stop him from living a purposeful life.

Nicolas Special Olympics

Unless God chooses to heal me, dystonia will be a thorn in my flesh the rest of my life. Despite my exercise and shots, some days are miserable. I can get depressed and feel sorry for myself about not being the same mom to my younger kids that I was to the oldest. But God did not leave me comfortless. He sent friends such as Bill Irwin into my path to show me how to live with disability and limitations.

I was hoping to be able to see Bill again and sadly I won’t this side of heaven. But I know that he’s with God now and he can truly see. I was blessed to meet his wife Debra and I just know that God has great things in store for her to continue the ministry that she and Bill had and their message will continue to go forth.

Bill’s inspiring story of perseverance is being made into a movie. Follow Blind Courage the Movie on Facebook for updates. You can find also find the book Blind Courage on Amazon.

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About me

Hey there! My name's Marya & I'm a midlife special needs mom with several chronic illness diagnoses including cervical dystonia, ulcerative colitis and chronic fatigue.

Living alcohol free since 1986, I share my best tips for radical self care including faith, yoga and journaling to help you thrive with chronic illness.


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