Faith and MS
Last updated: November 2023
I was fearless. I had the world by the tail. I knew what I wanted and went after it. I was successful and felt good about my life.
A brief recap of my life shows that I was an athlete in an athletic family. I am the middle girl between two boys, so I was a tomboy. We were all Scouts and loved camping as Scouts and with just our family. My dad was a college professor and my mom taught 4th grade. I grew up in the 50-60’s and had a fairly sheltered, easy life.
I knew I was going to be a teacher when I was 12. I went away to college, married, started my career and had two awesome kids. I taught physical education to elementary children and taught and coached kids K-12 who had physical and mental disabilities. I was so passionate about Special Olympics, I left teaching to work for Special Olympics. Through various vocational and locale changes, I was blessed to open a newly built Boys & Girls Club in beautiful Gig Harbor, WA. After a reorganization, I became the Deputy ED at a nonprofit specializing in services to adults with disabilities.
Enter MS. Enter fear. Leading up to the diagnosis, I experienced several symptoms that were explained away by other conditions for three decades. After a hip replacement surgery, subsequent tests showed I had MS. First I was relieved that I wasn’t going crazy, then I was mad, then I became fearful. And the fear is lingering.
The fear is what I struggle with the most. And I am mad I am fearful! I am fearful of stairs, of inclines, of making it to the bathroom, of appearing stupid as I struggle to find simple words, of not being able to make it through the day because of overwhelming fatigue, of walking farther than a block or two at a time, of trying to change my hand dominance, of cramps and spasms in my legs and feet, and of falling—always of falling.
Once diagnosed, I immersed myself in research and began going to a self-help group through the National Multiple Sclerosis Society (NMSS). I became a co-leader. I signed up for the weekly newsletter from MultipleSclerosis.net. I even wrote an article that was published in the newsletter. I have met some lifelong friends who share this thing called MS. I learned that there was no cause and no cure. But I take a disease modifying drug anyway. I am still learning and attend local conferences and events when I can. I have volunteered for WalkMS in WA and NC. I still attend a self-help group and connect with others who share this insidious, horrible, unpredictable disease.
All of that knowledge and the wonderful connections I have made have not decreased my fear. If anything, it has increased because of it. Fear can be a constant companion of panic and trepidation. However, there is light at the end of this tunnel—and out of fearfulness--and I am moving toward the Light.
My Christian faith has been my saving grace. I know there are other persons who have MS and are Christians. And yet, faith seems to be absent from any literature and discussions. The NMSS has wonderful resources such as Live Well, Live Fully, Mood and Cognition, Positive Psychology, etc. There is no mention of how faith can be instrumental in our well being. I was fortunate to be a part of a clinical study through the Seattle VA Puget Sound Health Care System called Take Control of MS. We discussed subjects such as nutrition, exercise, and emotions. Again, there was no mention of the role of faith in our lives.
Let’s talk about exercise. I believe that exercise is vital to my overall health. I was a competitive swimmer growing up and through college. I love the sport and love the activity. I swim three times a week and it is necessary to my overall health. I was fortunate to receive assistance from Multiple Sclerosis Association of America’s MRI Access Fund. I participated in SwimMS to give back and thank them for the help.
I used to love to walk. I would walk 3-4 miles several mornings each week. Now I use a recumbent cross trainer twice a week. When I am in difficult terrain, have to walk long distances (1-2 blocks) or in new surroundings, I use a cane and move very slowly. Between the fatigue and the mobility issues, I feel like I have become a true couch potato.
Speaking of potatoes, I have begun watching my nutrition and how it affects my health. I have noticed that the “white foods” (sugar, processed flour, white potatoes) increase inflammation and fatigue. So I try to be very careful. So I eat 85% dark chocolate (it is an acquired taste). But I do love ice cream!!
Exercise and nutrition are a necessary part of my ability to “Live Well, Live Fully”. However, it is my faith that keeps me on the right path. When I was 12-13, I went through confirmation classes in our local Methodist church. I took that step very seriously and look back on that as a very significant event in my life. In my 20’s and early 30’s, I walked away from a consistent discipleship in my faith. I always believed in Jesus Christ as my Lord and Savior. I know that I can do all things through Christ (Philippians 4:13), all things work for my good (Romans 8:28), and God is for me (Romans 8:31).
Many of the above mentioned programs discuss grief and how we deal with it. Grief is a funny thing. According to Wikipedia, “grief is a multifaceted response to loss, particularly to the loss of someone or something that has died, to which a bond or affection was formed. Although conventionally focused on the emotional response to loss, it also has physical, cognitive, behavioral, social, and philosophical dimensions.” The Kübler-Ross model lists five stages of grief: denial, anger, bargaining, depression, and acceptance.
So if it is a response to something that has died, I can relate my MS experience to that definition. I have definitely experienced something that has died—my health, independence, fearlessness, mobility, confidence, overall sense of well being and my sense of who I am. My denial (the first stage) came before the diagnosis as I was sure that my full health was just a therapy strategy away. I have not experience denial after the diagnosis because deep down I knew something was not right and there is pretty clear scientific evidence that there are multiple lesions in my brain and spine.
I am definitely angry. I am mad that I cannot be as fearless as I once was. For the first two and a half years after my diagnosis, I would watch other people walk, run, play with my grandchildren, and do simple everyday tasks and think “I used to be able to do that and now I can’t”. About a month ago, I started giving thanks to God that there are so many other things I can still do. How did I come to that breakthrough? Lots of prayer and diving into God’s Word. He says in Psalm 91:1-2 “He who dwells in the secret place of the Most High, Shall abide under the shadow of the Almighty. I will say of the LORD, ‘He is my refuge and my fortress; My God, in Him I will trust.’”
I don’t want to be a lukewarm Christian (see Rev. 3:16). I want to be in all the way. So how can I believe in some Scriptures and not others? I can’t. I give him my anger and he changes it into joy. He says in Isaiah 61:3 “To console those who mourn in Zion, To give them beauty for ashes, The oil of joy for mourning, The garment of praise for the spirit of heaviness; That they may be called trees of righteousness, The planting of the LORD, that He may be glorified.”
The third stage of grief is bargaining. I have never been one to bargain with God and give Him empty promises. I don’t say “If you heal me of the MS, I will do such and so”.
I have definitely experienced the fourth stage; depression. Right after my diagnosis, I went to see a counselor for 3-4 months. That was a good decision. Now, I can experience depression at any given moment or day. Sometimes it is immediate, sometimes it takes a while, but I remember that He gives me beauty for ashes!!
The final stage of grief is acceptance. Grief is not linear, so we can experience any of the stages at any time and in varying degrees. But I will never accept MS!! God’s Word says I am healed and I am His temple of the Holy Spirit. (I encourage you to do your own word search.) If I accept MS, I am denying His Word. It also means that I will not stay in tune with the robust research going on to find a cause and a cure.
So why do I state all of this? Because my question is, why isn’t there a mention of faith as it relates to our overall well being? Because it is a hot topic, not politically correct, or uncomfortable to discuss? Phooey!! It is the right thing to do and perhaps only those of us with a deep, abiding faith need to start making some noise and start the conversation. Who is with me?
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: