She works with willing hands.

Living With MS…and Hope

I’ve been quiet for a while. It has been nearly 10 months since I was diagnosed with Relapsing-remitting Multiple Sclerosis, and it has taken me all of that time to process the news, and adapt to my “new normal.” When I was diagnosed last fall, I was scared and overwhelmed. I had a few anxiety attacks (a new experience for me), and I cried a lot. I had no sensation in my right hand for many months, and as soon as I opened my eyes each morning, I curled up my fingers, hoping to feel them again. I didn’t know what my future would look like – and the truth is – I still don’t. But then again…none of us really knows what tomorrow will bring.

Today I feel well. Like most people, I have good days, and not-so-good days. I tire easily, and sometimes my brain is a bit foggy. (However, don’t most mothers feel tired and foggy?) I experience frequent transient symptoms including numbness and tingling, mostly in my hands and feet. And every once in awhile, I have strange symptoms – like when my face went numb while riding in the back of a convertible – or when I lost feeling in my tongue while eating water ice. Despite these sensory symptoms, I am able to do everything that I did before I was diagnosed. I manage my household, care for my children, teach exercise classes, and lead a large women’s Bible study.

I am thankful that I recovered well from transverse myelitis (which was what landed me in the hospital and led to my MS diagnosis). Two-thirds of folks diagnosed with transverse myelitis end up profoundly to moderately permanently disabled, and I praise God for my outcome. Much like the persistent widow in Luke 18, I will always pray for complete healing and no MS relapses. I will not lose heart.

Just as I did when I was diagnosed last fall, I trust God and His plan for my life. The suffering that I have experienced in connection with this disease is not a random bout of bad luck. It is according to God’s providence, and He will sustain me through it. I am His child, and His plans for me are good, even when they feel bad. I do not doubt His goodness, for I have seen His goodness throughout this entire ordeal. He met me in the night when I was desperate and afraid, and His word was (and is) like cold water to a weary soul.

Although I hope that my medication works well, and I hope that my diet will reduce inflammation in my body, and I hope that I’m taking the right supplements, and I hope that frequent exercise will keep my motor and cognitive functioning on point, and I hope that this disease won’t ravage my body…that is not where my hope ultimately lies. My hope lies in Christ, His life, death, and resurrection, and His eternal promises.

When I opened my eyes this morning, and curled up my fingers, I felt them. After I use them to write this, I will rise and drink my coffee, take my children to the grocery store, and then the park. I will do all of these things with a deep appreciation that I never experienced in the past. I am thankful for sensation in my digits, and for hands and feet that work as they should. I am thankful for God’s sovereignty over this disease, and for his sustenance. I am thankful for the cool fountain of His word, where I drink and find refreshment. I am thankful for my hope in Christ.

Peace That Surpasses Understanding

Several weekends ago, just prior to receiving my MS diagnosis, a few of us Supper Club gals went to Avalon, New Jersey for an overnight. It was a hurriedly organized 24-hour trip. We set off for the shore at rush hour, and got tangled in heavy Philly traffic along the way. By the time we reached our friend’s family house, it was cold and dark.

After settling in and enjoying a gluten-free, dairy-free, sugar-free dinner (lovingly prepared by my girlfriends, who carefully accommodated my newly restrictive diet), we wrapped up in sweatshirts and blanket scarves, and walked one block to the beach.

The moon was full and bright, lighting our path as we headed over the dunes. Because of the MS, my feet had been numb for several weeks. What little sensation I did feel was tingly and uncomfortable. Once we reached the fine beach sand, however, I slipped off my flats and dug my toes into the sand.

And I felt the cold.

It was incredible.

I walked down to the biting water, stepped in, and wept.

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Overcome with emotion, I stood in the moonlit waves, my dear friend Karen by my side. And through my salty tears, for the first time in many weeks, I felt peaceful.

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As the sea water rushed over the cuffs of my pants, I think I tasted a sliver of the breadth and length and height and depth of God’s love for me, and it was overwhelming.

We sat on the beach for hours, my friends and I, cold feet in the icy sand. We talked, and laughed.

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Our time on the sand was interrupted by heading to the house for only a few winks of sleep before returning to watch the sunrise. And a glorious sunrise it was.

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As the sun emerged over the horizon, we read from chapter 38 of the Book of Job, and I was reminded of God’s enormity, and my smallness.

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I walked the beach, delighting in the sensation of the soft sand between my chilly toes.

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I collected shells and a beautiful silver fish that the tide pushed on shore.

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It was nearly translucent, and looked as if a skillful craftsman had deftly painted thin silver and black pinstripes down its side.

Everything about that time was beautiful, serene, and lovely. It felt as if the cold sand, the mighty sun, and the delicate silver fish were telling of the glory of their maker.

I don’t know exactly why, but that 24-hour trip to the beach was transformative. I arrived in Avalon a sad and fearful woman, and I departed with peace.

Today, almost six weeks after my diagnosis, I am mostly peaceful about having MS. Although I don’t like the diagnosis (and I will do everything in my power to improve and maintain my health) I know that nothing in my life happens outside of the providence of God. The one who made the sand, sun, and silver fish also made me, and he planned each day of my life. I believe that MS is part of his plan for me. I don’t say this to sound like a spiritual rock star. In fact, my own pet tendencies are anxiety and worry, so I know that this peace I have is not of myself. I know that the peace I feel is a gift from God, and I will rejoice in him.

“Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus” (Philippians 4:4-7).

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Photography by my gifted friend Lindsey Calabretta Clark.

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Diagnosed With Multiple Sclerosis

Well folks, October 2016 has officially been one of the hardest months of my life. As I recently shared with you, I was suddenly and unexpectedly diagnosed with myelitis and spent several days in the hospital at the beginning of this month. At the peak of the myelitis, I could not feel my body from my clavicles down (with the exception of my left arm and hand, which, for unknown reasons, never got very numb). Since that time, I have experienced dramatic physical improvement in certain areas of my body, while other areas remain numb and/or tingly. Specifically, my right hand remains profoundly numb. However, all of my motor functioning remains intact, and I can again feel my feet, legs, pelvis, and abdomen.

On Thursday, October 20th, I visited a specialist at Penn Neurology, and he assigned to me the diagnosis that I so desperately feared – Multiple Sclerosis, or MS. The type of MS that I have is called relapsing remitting, meaning that exacerbations of the disease, or relapses, come and go. If you are curious, you can read more about the disease here.

Even before I was diagnosed on the 20th, I started taking Vitamin D and fish oil, and I reluctantly began modifying my diet, largely cutting out sugar, dairy, gluten, and a host of other potentially inflammatory foods. I am currently following a modified paleo diet, and I am learning as I go. In fact, Saturday night I prepared my first paleo meal from scratch, start to finish. Because I delight in food and all things related to the table, changing my way of eating and cooking is a huge lifestyle change in and of itself. I hope to share my new recipes and techniques with you in the coming months. For now, however, I am learning…slowly but surely.

But beyond the diet changes, physical symptoms, doctor visits, future MRIs, and the MS drug that I will now inject myself with three times a week, the events of this month have left me emotionally shaken, and mentally overwhelmed. And in some ways, I am grieving.

I am grieving the life that I thought I had.

I have no medical history of which to speak. I have always been healthy, and with the exception of overscheduling my way into periods of physical exhaustion, I have taken care of my body. I teach exercise classes and I eat whole foods. I wasn’t supposed to end up with a chronic disease, for which there is no known cure.

But here I am. MS is my new reality, and I don’t understand why.

However, during this awful October, I have experienced God’s love in powerful and tangible ways – ways that I’ve never experienced before – ways that I will share with you in the days and weeks to come. I desire to share my experiences with you because even in the midst of my suffering, I know that God is good. He is sovereign over all things, including my MS diagnosis, and I trust Him. I may not understand His plans for me, but He is my strength, and my hope is in Him.

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Photography by Lindsey Calabretta Clark.

An Empty Vessel

My prayer over the past many months has been that I will be an empty vessel for the Lord to fill and use as He wills. This prayer of mine comes from the Bible. Throughout Scripture, people are often described as vessels, or jars of clay, in the the hands of God. He is the Almighty potter.

Last week, Jersey Boy, the kids, and I were immersed in the frenetic swirl of a Disney vacation. Our time together in Disney World was thrilling, exhausting, energizing, and depleting. We had many activities planned, fast passes scheduled, dinner reservations reserved, and princesses to visit. At the Magic Kingdom, we had dinner in the castle at Cinderella’s Royal Table, and in the evening we observed giraffes and zebras outside of our hotel balcony at the Animal Kingdom Lodge. At Epcot, we ate dinner in Germany and we fell from the Tower of Terror at Hollywood Studios. It all felt surreal and overwhelming, even as an adult.

But along the way, I started losing feeling on the right side of my body. It was a strange, creeping sensation, that started with mild tingling in my feet but rapidly progressed to total numbness. I ignored the sensation for two days, hopped up on adrenaline and attributing my loss of feeling to a pinched nerve or sore back. By Saturday evening, however, I realized that something was very wrong.

After a frightening visit to the ER in Florida where the doctor confirmed that I was not having a stroke, I was advised to head home to Pennsylvania and seek further medical care. The Lord sustained me throughout the day on Sunday as we awaited our late afternoon flight. As soon as we landed in Pennsylvania my dear friend Maggie gathered me from the airport and drove me directly to the hospital, where I was joined by two other dear friends, Lindsey and Jenn. Jersey Boy brought our littles home, and tucked them safely in their beds as the doctors admitted me to the hospital and told me that I was most likely suffering from myelitis – a rare and potentially debilitating neurological disorder.

I spent several days in the hospital, surrounded by friends and loved ones. I underwent MRIs of my spine and brain, and the doctors confirmed the diagnosis of myelitis, finding an active lesion on my cervical spine. I had a spinal tap and many blood tests, the results of which are still pending. The doctors treated me with five days of high dose IV steroids, and the Lord spared me from experiencing extreme side effects from the medication. Those few days in the hospital were scary and dark.

I do not know what my future holds. I do not know what is causing my myelitis. In the coming days and weeks more answers will likely come as I visit specialists who will try to understand what is going on inside of my body. Some of the possibilities are highly treatable, and others seem more ominous.

But during this time, the Lord has fully displayed his mercy and loving compassion towards me. All of our family’s physical needs are being met by our local friends, both inside and outside of the church. People are bringing us meals, friends are driving my children to their various activities, and loved ones are sacrificing their own personal schedules and plans to take time and just BE WITH US…even in this muck…amidst my tears, and fears…in the sadness, and suffering. People are praying with us, and for us, and I feel God’s love in tangible ways.

I am praying for complete healing, if the Lord wills it. I am praying for God to give me the strength I’ll need to make it through each small step of this unexpected journey. I feel weak and small, like a delicate jar. I am acutely aware of my own fragility, and I am clinging desperately to the potter.

Above all else, my prayer remains the same as before all of this started. I am an empty vessel…a lump of clay in the hands of my God. And I trust Him to have His way in me. I trust Him to fill me and use me as He wills.

“We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed” (2 Corinthians 4:8-9).