5 Surprising Gifts I received from being diagnosed with M.S.
When I was first diagnosed with Multiple Sclerosis about years ago, whenever I had to tell someone that I had M.S. the first thing they would say is “I’m so sorry.” At first I would kind of cock my head to the side and say “Thank you?”. I wasn’t really sure how to respond to that question. But now I know it’s because I honestly hadn’t done the research to know the dark side of this disease.
So what is Multiple Sclerosis?
M.S. or Multiple Sclerosis is an autoimmune disease where the body attacks the nerves specifically of the brain and the spine. Each nerve cell is covered by something called the myelin sheathing much like the charging cable for your phone. The wires aren’t exposed but covered within a casing to allow better, efficient and quick flow of the electricity. In humans the nerve covering is made of protein and fatty substances that allow the electrical impulses that send messages from the brain and spine to other parts of the body quickly and efficiently. When the myelin sheath becomes damaged by the disease it’s called demyelination and as a result the signals aren’t sent as efficiently or not at all. That is why people with MS my lose mobility, hearing, vision, speaking abilities or cognitive function. There are four types of Multiple Sclerosis:
Relapsing-Remitting MS (RRMS). This is the most common form of multiple sclerosis. About 75% to 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary periods called relapses, flare-ups or exacerbations, when new symptoms appear. Relapses typically last a few days or weeks. At other times, the symptoms seem to disappear and this is called a remission; however, MS is still active and can progress. Damage to nerves can still occur even though there are no symptoms.
Secondary-Progressive MS (SPMS). In SPMS symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. Before disease-modifying therapies became available, historical studies indicated that about 50% of people with RRMS progressed to SPMS approximately 10 years after their first diagnosis. Long-term data are not yet available to determine if treatment significantly delays this transition.
Primary-Progressive MS (PPMS). This type of MS is not very common, occurring in about 10% of people with MS. PPMS is characterized by slowly worsening symptoms from the beginning, with no relapses or remissions.
Progressive-Relapsing MS (PRMS). A rare form of MS (5%), PRMS is characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery.
(definitions from multiplesclerosis.com)
When I met with my specialist she said I had the first type, Remitting Relapsing where I could have relapses and then the nerves could heal back. However, over time the disease will still progress.
So now I see why people would say “I’m sorry.”
But I’m not sorry. And I know that I’m not going down with a fight. And I know that God is still faithful and I know that it’s possible to live in triumph. Living in triumph may not mean not having symptoms. I don’t have control over those things but to me it is about faith and perspective. Every day is a fight to stay positive and trust God that He has a plan for my life. Every day I have to encourage myself to not give up. I think because of this diagnosis I’ve changed from someone who tried to live in their own strength to someone who recognizes how important it is to live in God’s strength.
My Diagnosis Story
I woke up one morning and like I normally did I opened my eyes and breathed a quick prayer God for a new day. We were finally moved in and the kids were enjoying school. It seemed like such a reprieve after the tumultuous year we had experienced recovering from being victims of gun violence. A year ago a man with a semi automatic gun run through our neighborhood after he attempted to rob someone of their drugs. My house was sprayed with bullets ripping through our home. Two of the bullets hit my oldest daughter and we even found one bullets in the pillow of my youngest daughter that she was sleeping on. They were awakened from their sleep with a gun fight happening outside of their window. Thankfully my daughters are doing well today six years later. My oldest is a sophomore, loves rugby and show choir and wants to study phycology. My youngest daughter is an artist and an accomplished musician. During that year, my mother in law graciously opened her home to us for a year while we saved money for a new house. That year was extremely stressful as we tried to keep the kids in school across town, and I worked on another side of town. I was depressed and dealing with PTSD. My son had been greatly affected and was diagnosed with PTSD. When we finally were moved into our home and things looked like they were turning around I remember feeling like I could breathe a sigh of relief. But sometime when the adrenaline stops flowing the body reacts to the stress load it was holding off for survival. I had been having world class headaches for a week. This morning I woke up feeling okay. I looked outside at the sunny window and the trees swaying in the wind and I thanked God for waking me up. I went to the rest room and started to feel really weird. I convinced myself I was being dramatic. The next second I just fell over. It felt like a slow motion fall as I was trying to process what was happening. On the floor I realized I couldn’t move anything from my neck down. I called for my husband who had to carry me into the bedroom and call 911. I was sent home with vertigo but started noticing that the right side of my face wasn’t working. Then my hearing was going and I was swollen and unsteady when I walked. I ended up in the hospital for 7 days being pumped full of steroids. I came out walking better and 20 lbs heavier. After one week I was up 30lbs. I realize that being able to walk is great but I won’t lie. As someone who was starting to get her weight down, gaining 30 lbs in a few weeks was VERY disheartening. One week after coming out of the hospital I was on a plane with my friends and co producers to Los Angeles for the premiere of one of my short films called Moving Still which was nominated for three awards! During these three weeks I went from not walking to walking on a red carpet in L.A. I can only look back and see that God was in control. Over these past three years God has continued to use this disease to administer gifts to me. Here are three of them I want to share with you. By the way - you don’t need to have a disease to receive these gifts!
Gratitude for the gift of my body
Growing up I was always in great shape. I was a very active child. I would swim, dance, ride bikes, run and eventually I found gymnastics which I stuck with through freshman year of college. But I have always dealt with chronic pain since the age of 13. I had a very unhealthy relationship with my body. I even had bouts of trying to keep my weight down by not eating while in gymnastics. As an adult I began to have a healthier relationship with my body until I had my third child and I couldn’t get the extra weight off. For almost a decade I began to develop a hate towards my body that wouldn’t let go of the weight. I just couldn’t figure out what a health relationship was with my body. But after losing the ability to walk, even for a short period of time, I realized that I had things all wrong. The gift of my body served so many wonderful purposes. I had given birth to three healthy kids. I was able to nurse them and play with them and take care of them. I was able to perform my shows and bring joy to people. I realized that it was by God’s grace I was able to do these things - not by my own strength. In all of this I was given the gift of gratitude for my body. I realized that waking up and being able to walk and move, breathe and think. Play with my kids and even clean my home was a gift. That God truly was my source. When we are so caught up with having our bodies look like someone else’s (or what we used to be) we forget the amazing things that our bodies do every day. I still struggle some days with the extra weight but I know that He has brought me up out of days when I’ve used crutches and wheel chairs to get around. If you saw my MRI’s you would wonder at how I’m functioning but I know that I’m a walking miracle.
Embracing that God is my Provider
I had to receive the gift of Jehovah Jireh. After I had been diagnosed with M.S. I just wanted my life to go back to normal as soon as possible. I tried to go back to work too soon and immediately started to have a relapse. It was so apparent that I was not able to work and I knew that God was telling me that it was time to quit and focus on healing. I was so scared because we had just moved into our new house and my husband’s business was going through a very low point. But one night as I was wrestling with my decision I clearly heard God say: “Who are you relying on for provision? Me or your job?” I sat straight up on the couch so very quickly as I realized the answer. I was scared to obey God because I was looking at my job as the provider. We had just purchased a new home and my husband’s business was in a major dip. In my mind we needed my income. Right now I needed to embrace my new life and adjust to a new normal. These past few years God has helped me to slowly understand this disease and the lifestyle changes I needed to make. I had no one around to teach me how to live with this disease. God has shown me how to change my diet and how to reduce stress in my life. After a year off of work He gave me an opportunity to work with Americorps and do a very flexible position that allowed me to work mostly independently. Through Americorps I was able to explore things I was very passionate about like how art makes social impact. I was even able to pay off my student loans using the educational awards at the end of my two terms!
Becoming more of Myself
For most of my life I’ve worked to hide my pain. I wasn’t always successful but I would try my hardest! I would work myself past the breaking point, force myself to do everything and go everywhere even when I was tired and in pain. I would never consider it a good enough excuse to tell anyone that I “just didn’t feel like going because I was tired or I was in pain” Frankly I was tired ALL. THE. TIME. and I was in pain ALL. THE. TIME. so I thought what’s the use? If I told the truth I would never go anywhere or do anything anymore. I would end up very unhappy and frustrated a lot. I would feel like I didn’t have the right to put myself first or take care of myself the way I needed because some how the people I cared about would suffer. I was a competitive gymnast who held many state championships and even a regional placement growing up. I was serious about my sport. We were trained to work through our pain as a normal. I hid it in college, I hid it as much as I could through my marriage. I only knew how to hide my pain. But when I was diagnosed it was so freeing to be able to know what was wrong with me and understand the major damage that could occur in my body if I continued down this path. But to be honest I’m STILL learning that it’s okay to say “I’m in a lot of pain right now. I need to continue this conversation later.” I’m still terrible about putting myself first when it come to my kids needs. Thankfully I have a family that will also encourage me to take care of myself. I know the circumstances are not the same but through this experience of being able to be my whole self - pain and all - I began to have empathy for individuals who were living with a secret part of themselves hidden away from the world. I understood how emotionally painful it is to not be able to be free with your struggles and hurts. I was able to release so much shame associated with lack of knowing why I was feeling this way all the time and feeling like I was letting down those that I cared about. It was such a wonderful gift to be free.
I hope that whatever you are going through you can see that God will work everything out for your good. Even though it seems painful now ask Him to give you His perspective on your struggles and to see the gifts hidden in the struggle.
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