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STORIES | multiple sclerosis

As a rare disease begins to progress, one woman is confident that the God she loves and serves holds her--and her grief--in His capable hands.


Multiple sclerosis.

In 1999, at age 25, Debbie Oelke heard those words as a diagnosis.

A difficult disease to diagnose, Debbie began to show early symptoms in April 1997 when she was 23.

“I began to have numbness in my feet which came up my legs,” Debbie said. “After several tests, I was diagnosed two years later with MS by a neurologist.”

According to the Mayo Clinic, MS is a potentially disabling disease of the brain and spinal cord. 

“MS is a neurological autoimmune disorder in which the myelin sheath that protects the nerves in the spine and brain are scarred,” Debbie said. “Whichever part is attacked, the corresponding part of the body is affected.”

A rare diagnosis, fewer than 200,000 US cases are diagnosed each year. Symptoms tend to vary widely from case to case because the progression of the disease depends on which nerves are attacked and how extensive the resulting damage. Some people might lose the ability to walk while others might have lengthy periods of remission. There is no cure for MS but treatments can help speed recovery from attacks, modify the course of the disease and manage symptoms. (Mayo Clinic)

“For the first 20 years of having MS, I was not limited at all, and carried on life as normal,” Debbie said. 

Aside from continual numbness in her fingernails and bottoms of her feet, Debbie lived largely unaffected after her initial diagnosis. She gave birth to two biological children. She and her husband Phil also expanded their family via adoption.

In 2010 Debbie developed double-vision--she wears glasses with prisms to help. She has occasional dizziness that has been helped with over-the-counter medication. Despite these symptoms, she continued an active lifestyle with their young family.

In 2017 things changed.

“In June 2017, I woke up one morning with half of my body being numb,” Debbie said. “This has not gone away and only increased in intensity and area of my body. My legs have gradually become more weak so that I needed to begin using a cane, then walker, and occasionally a wheelchair.”  

By November, her symptoms plateaued due to cooler temperatures, different medication or physical therapy--or a combination.

“I generally need to use only a cane in the mornings, but by the afternoons, I use a walker around the house to conserve strength and when I leave the house,” Debbie said.

Public Life with MS

When Debbie started appearing in public, first with a cane in May of 2017, and then with a walker, the public reaction was very difficult for her.

“When I first started using a cane in May 2017, people (acquaintances) just stared at me and didn’t talk to me,” she said. “I had to sit on the front row at ball games that summer because I can’t climb stairs/bleachers, and no one would sit next to me, except for close friends who knew what was going on. It was very painful. It would actually be men who were more likely to ask me what was going on than women.

“When I began to use a walker in public, it was the same thing… no one asked me what was going on or even talked to me--also extremely painful. No one is shocked more than I am about using a walker at the age of 44.”

But it doesn’t have to be that way, she said, and gave a simple solution.

“Don’t be afraid to ask what’s going on,” she said. “It may bring up emotion--it probably will; I’m an emotional person!--but figure out how to be comfortable with it.”

With this personal experience in mind, Debbie said she’s learned so much about disability. She has become thankful for the American’s with Disabilities Act--for wheelchair parking spaces, curbs that have ramps and for automatic doors.

She’s also become much more aware of others with physical disability.

“I have found that I have much in common with the elderly,” Debbie said. “I try to befriend women at church that are just sitting in their walkers with no one to talk to.”

As Debbie navigates public life within her diagnosis she tries  to surround herself “with amazing people who listen, hug, cry with you, and treat you normally” and encourages others navigating disability to do the same.

Family Life with MS

As a mom with 9-, 7- and 6-year-olds, Debbie doesn’t want life to change drastically for her children because of MS.

“Adjusting to using a cane/walker has been difficult but almost a relief at the same time because they make mobility easier,” she said. “I have been an active mom in the past, and it is hard to not be outside with them. I now realize that the heat of the summer greatly affected my mobility and breathing this past summer, though I still took them to the pool and attended ball games. I am sort of dreading next summer and wondering how I am going to do those things.”

Even so, the kids have adjusted well, Debbie said. 
The Oelke family {courtesy photo}


“They’ve learned to hold doors open and to give me their hand/arm when walking,” she said. “If I fall, they are there immediately to help. It’s not the way a mother wants her kids to learn to be helpful, but in my case, they definitely have!” 

In some ways, though, the kids have had trouble understanding exactly what MS means.

“My regret is that I wonder if we said the right things to the kids about my MS,” Debbie said. “Lakin (daughter) just said the other day that she didn’t realize that ‘this’ is what MS means. She asked how long it would last. I hate the fact that I can’t run or bike with my kids, play ball, jump on the trampoline, etc. I would love for my ability to do those things to return.”

Husband Phil-- “a very giving, servant husband” --is helpful with Debbie’s needs.

“He encourages me to do as much around the house as possible,” she said.

The family also has a supportive group of friends who come clean and do laundry on a weekly basis. Some friends have also started a MealTrain for the family. Debbie says these things have been extremely helpful.

“I have realized how important it is to live in a supportive community as well as go to a wonderful church,” she said. “I have an absolutely amazing support network!”

Supportive Network

Within Debbie’s support network are various relationships that have grown closer when the going got tough.

“It is wonderful to have friends who still treat me the same and say I’m the same 
Debbie,” she said. “Some friends have grown amazingly closer, and my closest friends have become obvious through this. My sister is one in particular who has shown her completely selfless side and drawn extremely close.”

Debbie is also heavily involved with a ministry called Women’s Encounter where she has served and spoken regularly for four years. She has found that speaking about her disability from the stage while using a walker has opened opportunities for better connection with event attendees.

“I think that women seeing this and learning how I deal with it increases my approachability,” Debbie said. “Only God can do this, and I actually have been able to thank God for my MS, mainly because of this very issue. To God be the glory!”

A Tangible Faith

As a young woman facing a life-altering diagnosis those 20 years ago, Debbie was scared. She said she would read stories about people with progressive MS and her fear would increase. She realized she needed to quit reading those stories.

In the last 1.5 years, as Debbie has faced the progression head-on, she has spent time grieving.

“I have experienced a wide range of emotion, and finally realized that I was grieving,” she said. “Grieving the loss of mobility and life as I had enjoyed it--life as a wife and mother--that may never be the same again. I still grieve.”

But she’s confident that the God she loves and serves holds her--and her grief--in His capable hands.

“This struggle, as well as every struggle in life that I’ve had, has definitely grown my faith,” Debbie said.

As she has processed her faith within her circumstances, Debbie cited Mark 5:36: But overhearing what they said, Jesus said to the ruler of the synagogue, “Do not fear, only believe.”

Trust has been key.

“(I want to) TRUST in His way of doing things,” Debbie said. “I am but a very small part in His tapestry that lasts thousands of years. Everything has a very specific purpose for His glory, and I need to trust that. It’s not about me.”

As she has grieved and grown she has learned to pray specifically against fear and ask others to join her as soon as she starts to feel overwhelmed. During these moments, God began to draw her attention outside herself.

“I have seen God’s glory and mercy through the beautiful fall season we had,” she said. “I would sit on my couch and look out upon the Parkview lawn and trees and see God’s beauty. This began my journey of focusing on praising God instead of despairing.”

Sanctified Qualities

Debbie’s circumstance is hard, and she doesn’t shy away from that element. 

“It stinks, and it’s okay to feel/say that,” she said. “It’s okay and healthy to grieve.”

But she also doesn’t shy away from the sanctifying work her disability has furthered in her life.

“My situation stinks and is hard,” she said. “However, I am so much more full of selflessness and humility. [I am] approachable, real and patient. Not that I am all these things all the time, but hopefully those around me would agree that these are qualities they see improvements in.”

Deeply Engrained 

This journey has transitioned biblical concepts she knew into beliefs that are engrained deep in her core--God’s love and His mercy, for instance.

“This fall and winter, I have had good time to reflect on Him and be continually amazed at how much He loves me,” Debbie said.

She has learned--and re-learned--that her story is a small piece of what God is doing.

Reading the book of Habakkuk, Debbie was struck by how she need only sit back and watch what God is doing.

“Watching him show off his power in other situations during this time in my life has been so renewing,” she said. “It takes the focus off me and shows me that He still is working!”

As these Truths seep deep into her bones it has made her feel unshakable and able to stand through anything.

“Everything about Christ is so much more precious to me than it was before,” Debbie said. “Things about Jesus stick out more and are more meaningful.”


How to Help:

MealTrain sign-up {Sign-up is currently active for June to Sept}


Additional Resources:

Learn about MS {Mayo Clinic} 

Debbie’s Scripture list:
        Isaiah 61:3 {put on a garment of praise instead of a spirit of despair}
Mark 5:36
Isaiah 
Psalm 46:4
2 Chronicles 20
2 Kings 17-18 {the reasons for the deportation of the Israelites into captivity}  


The “Stories” series was largely influenced by Jared C. Wilson’s book “Gospel Wakefulness.” In the book, Wilson defines his terms this way: "gospel wakefulness means treasuring Christ more greatly and savoring his power more sweetly [than before]" OR "an experience of such power--of such awakening--that it persists and endures, settling deep into the heart and the conscience of a believer that it carries through all emotional highs and lows." In keeping with those definitions, I have tried to write the articles in the “Stories” series to encourage the body to testify to the power Christ has in our daily lives by sharing our individual stories of Gospel wakefulness.

Other stories in this series:
Infertility
Miscarriage


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Comments

  1. Debbie seems like such an inspiring woman who has maintained a countenance of perseverance and grace. I'm sure she is a joy and blessing to all who know her. I'm glad that she knows it's OK to grieve. Thank you for sharing her story in your series.

    ReplyDelete
    Replies
    1. She really is! And I'm glad too...grieving is so important. Thanks for taking the time to read and comment, Tina!

      Delete
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