HopeKeepers Magazine. Rest Ministries. Lisa Copen. The Disabilities are Invisible, the Outreach Isn’t. Fall 2004.
Sherri was an active young woman with two college degrees and an exciting career. But in 1991, just as she was to preparing to purchase a new home for herself and her beloved horse, she became ill and unable to work. . .
Overwhelmed with emotions surrounding her diagnosis of multiple sclerosis, Sherri began keeping a journal, focusing on all of the confusing misunderstandings people had about her illness. She transformed this into a pamphlet to pass onto caring friends who wanted to know more. Six years later, after she married Wayne, he suggested jumping onto the world wide web to share her writings with others. “When he offered to put the three pamphlets I had written onto a website on the internet, I said, ‘What? Who would read it?’ I knew the internet was huge and thought this idea was kind of silly. Yet once I thought about it I figured he might actually be onto something. If he did this, when I met someone, all I would have to do is to hand them a card with the website address and say, ‘Here. This will explain everything.’ That would be such a relief! So we put up the web site.”
Today, the web site gets over 125,000 hits per month and Wayne and Sherri feel blessed to minister to others, even if it means through their suffering. I sat down with Wayne and Sherri to find out more about their experience, their ministry, and even their marriage.
HK: Sherri, what was your life like before the onset of your disability and what is it like now?
I was a busy, active workaholic! During college, I worked, was a cheerleader and was very active in musical theatre. After college, I was offered a position with the government and they were going to pay for my Master’s Degree. Everything seemed like it was really coming together. Then I suddenly became very ill and unable to work. I lost my career dreams, my house and my horse. Now it is all that I can do to get through daily activities like showering, therapies, cooking, or going to the doctor. Every day I feel like I have a horrible case of the flu, complete with deep body aches from head to toe, weakness, dizziness, nausea, headaches, memory loss and difficulty thinking. Before, I used to work even when I had pneumonia, but this is much different. This is debilitating, beyond mind over matter. Now every movement, every thought, and every breath takes energy as if I am trying to climb a mountain with people trying to yank me back down.
HK: Why did you feel compelled to specifically have reference to invisible disabilities?
At the onset of my disability, I had severe pain in my spine, legs and head. I felt as if I had the flu and could barely sit up or even breathe. It took everything out of me just to talk or think. When I became paralyzed from the ribs down, I was admitted to the hospital for a week while they ran tests and they diagnosed the MS. I figured I would rest up for a couple of weeks and then go back to work.
After months of physical therapy and steroid treatment, I began to regain most of the use of my legs, though it remained difficult to stand or walk. Nonetheless, the wheelchair and crutches were not what had been keeping me from returning to work; it was the unbearable fatigue, weakness, pain, dizziness, nausea, memory loss and cognitive impairments that kept me down.
I wanted to go back to work more than anyone else wanted me to. Still, as I began to walk again, those around me began to question why I was not back to work. I had gone from receiving compassion for what I had lost, to being accused of malingering. Supportive and understanding friends quickly became suspicious and frustrated with me, because they could no longer “see” the obstacle that was causing my limitations This continued lack of belief in my word, despite what others could see, was a blow that brought devastation far worse than the illness itself.
HK: What do you consider an invisible disability?
When we started our website, we grappled with a name that would properly describe a condition that is debilitating, yet not obvious. We came up with the term “invisible disabilities.” This does not necessarily exclude those with an evident impairment or those utilizing an assistive device. For example, in my case, I used a wheelchair but was restricted by my inner symptoms, not the challenge of the chair itself. One living with an invisible disability has symptoms that are debilitating such as: extreme fatigue, pain, weakness, dizziness, cognitive dysfunction and more.
HK: How has your ministry grown over the years?
When we first put up the website, we just posted writings from my journal. It didn’t take long for the news to spread and we started getting e-mails from people telling us we had “put into words” exactly how they were feeling, but could not express. Visitors expressed that it was important that their friends and family read the material, so we put the three essays in a booklet format for more value and validity.
This year, Wayne became the founder of Invisible Disabilities Advocate [and Where is God?] and obtained non-profit status. He has a passion for people who are hurting not only by the hand of their illness or injury, but by the lack of understanding of those surrounding them. He is eager to transition into these organizations as his full-time career.
Despite our lack of vision, God had a much bigger plan for this ministry than we ever could have imagined! We are amazed every day at what has happened.
HK: Wayne, tell me about “Where is God?”
Christians have another hurdle to overcome when meeting someone with a chronic illness. People were coming up to Sherri to tell her that she must be “lacking faith” or else God would have healed her. Or, that she must be hiding some “secret sin” that she needed to confess.
HK: That’s tough, Sherri.
Yes. These were the worst kinds of accusations anyone could express, because my faith was all I had left. God was my every source of strength to go on and I knew without a doubt that He could heal me; I did all I could not to stand in the way. On the other hand, I also knew that God was God and not me. I prayed as we are instructed to pray in 1 John 5:14-by asking for His will. I believe that God knows best, even when He says, “no,” and that’s the highest form of faith-trusting He knows what He is doing, even when we have lost so much. The Bible instructs us to believe in what we cannot see. God is my soul source of purpose, even though I’ve lost so much. Telling me that I lack faith is like jabbing a fiery hot dagger right into my heart.
The purpose of Where Is God? is to encourage, help answer questions of faith and address the question, “Where is God when we suffer?” Other pastors, writers and doctors joined our cause and we spun the section off into it’s own ministry. Just this year, we premiered our new booklet, Not By Sight!
HK: What has kept you motivated to keep moving forward when you’re in so much pain yourself?
We praise God when we receive messages from our visitors. For example, Judy from Oklahoma wrote to us, “The book But You Look Good was absolutely the best book I have ever read explaining my Fibromyalgia! My husband has always been supportive of my illness, but now he has said [the book] helped him to understand me and what I go through on a daily basis! I also gave it to my mom to read. She read it tonight in a few hours and said, ‘Honey, I just want to apologize to you for all the times I didn’t understand what you were going through. All those times I asked you to fix my hair and you did it. I had no idea you were in that much pain. All the times we were at Walmart and you said Mom, I have to go now,’ she said ‘Now, I understand you couldn’t take another step because you were in so much pain. I am so sorry and now I understand after reading this book. Everyone should read it!’ It was the most awesome thing I have ever experienced in my life with my mother! Thank you so much for getting this book out to the public.”
HK: I know sometimes “well people” think those of us with chronic illness demand so much sensitivity. How do you address this misconception?
Most people believe their comments and suggestions are reasonable and helpful. So they they are dumbfounded when they are met with resistance to their helpful ideas. On the other hand, those of us living with a chronic condition don’t want to make people so afraid they will say the wrong thing that they begin to avoid us. We feel like we are put into a corner with just two options: we can either smile and try to act as if it didn’t hurt or we can speak up and be honest, which can make us seem overly sensitive.
What we have found over the years is it that usually in these instances, the friend or family member is coming at the situation from an angle that just doesn’t work. Even though their intentions may be honorable, they often inadvertently minimize their loved one’s situation or continue to give unsolicited advice. The Bible says that we must be willing to weep with those who weep (Romans 12:15). We are also to listen and not be quick with an answer (Proverbs 18:13). Once they can gain a better understanding of what he or she is going through, they often learn what to say that really does work. Soon, they will find their loved one’s demeanor much more relaxed and receptive.
HK: How do you recommend people respond to a loved one who has an invisible chronic illness?
Wayne and Sherri: As addressed in our booklet, Not By Sight, it is essential to realize when someone becomes chronically ill, they will need to go through the proper stages of grief. Whether the person must make mild adjustments to their lives or drastic changes, they experience very real and difficult loss. Experts in grief and loss realize those with loss of abilities and health must move through these steps of grief, just like those who lose a loved one to death. If they are not allowed to process through these stages, the result can be anger, resentment and depression.
HK: If you could change one thing about how people respond to your illness, what would it be?
Sherri: That others would believe what I am saying. The most heart-wrenching part of having a debilitating condition is being faced with friends and family who I am making it all up or exaggerating what I go through, because to them I “look” fine. This cuts right down to the core of who I am, because it implies we I am being dishonest… and that hurts!
Wayne and I always tell friends and family, “You may not ever fully understand how your loved one feels or what they are going through… but you can believe them.”
HK: What keeps you encouraged when you’re feeling overwhelmed by the ups and downs of chronic illness?
Sherri: My Scripture verse for this year has been, “…seek first his kingdom and his righteousness, and all these things will be given to you as well” (Matthew 6:33). This has been a big challenge for me. I am always so overwhelmed with therapies, doctor appointments, just trying to get my meals and maybe wash my hair once in a while. When I discipline myself to put God first above all, He blesses my day with a better attitude and purpose.
Wayne: My faith in God and my love for Sherri are the two things that keep me going during the tough times. People are shocked when they find out that I married Sherri after she had become ill. As I always tell them, I married Sherri and not her illness. She is an awesome lady and God has blessed her with true beauty, both physically and spiritually. I have been blessed to share in her triumphs and sufferings.
HK: What are your hopes for your ministry?
Wayne: Since almost everyone knows somebody who has either a chronic illness or lives with chronic pain, the audience for our ministry is unlimited. As I move forward with both The Invisible Disabilities Advocate and Where Is God Ministries, please pray that God will allow me to transition to working with the organizations full time. There is so much work to be done.
The Invisible Disabilities Advocate will focus on the business and education establishments and Where Is God Ministries will help churches and ministries develop disability programs. Both will fulfill these purposes through seminars, conferences, literature and the internet. I plan to partner with other existing ministries and organizations to help people better understand those who suffer with chronic illness and pain. Pray that God blesses those who will give financially to these ministries and that He brings the people to us who need our help as well. It is so exciting to embark on this new journey!
UPDATE from Where is God Ministries: The Invisible Disabilities Advocate is now the Invisible Disabilities Association. With additional leadership, Where is God Ministries has plans to expand by reaching out to other groups of interest wrestling with “Where is God” in their lives.