Developing a Disability: Hopping to Crawling

Aging is an interesting and slow process. Going from “hopping out of bed” to “crawling out of bed” usually takes place over many years. At this point in my life, I am somewhere in between those two points. My friend and colleague, Tory White, went from hopping to crawling overnight.

In January of 2013 we were together at a Children’s Pastor’s Conference in Florida. It was an honor to represent CLC Network’s Church Services Division together in this busy and exciting place. When I reflect on this conference, I recall Tory representing us with great enthusiasm at our booth.

Her energy was always high—she could organize any event, room, article, idea into its component parts in no time flat.

I often referred to Tory as my “right hand woman”; her presence in my life made it possible to focus on using my gifts while she “mopped up” behind me or went ahead of me with those things not necessarily on my “strengths” list.

On the return flight from this whirlwind event, Tory’s debilitation began in full force. She was dizzy. The next day, she was even more dizzy and not feeling well, her health deteriorating from this point forward. Her sensory system, a topic I spoke about at the conference in Florida that year, was on high alert. Sounds, smells, balance, vision – everything was hyper alert and sensitive. Things were quickly changing in her body.

One morning Tory called because her husband had left for work and she was unable to manage getting her children out the door. When I showed up, she was in a heap on the kitchen floor.

Tory, my friend who could organize anything with great skill—was unable to function in her usual capacities.

Tory at Home
Tory’s health deteriorated quickly as she experienced symptoms of Lyme disease. Because of her extreme sensory sensitivity, the rhythms of work, family life, and communal worship became much more difficult.

Doctor after doctor were unable to help her improve. She used the term “fuzzy brain” to try and explain why thinking was so very hard, yet she used her fuzzy brain to research and discover symptoms she was experiencing related to Lyme disease. Doctor after doctor offered little support.

Her home was now mostly dark and quiet because of her extreme sensory sensitivity.

Tory desired to give her young children the attention they deserved and needed but was unable to do so. They needed a plan for their lives, rides to appointments, help with school activities, and places to play with more light and sound. Her husband supported the family, as Tory’s income was quite limited. The tasks at several part-time jobs were unaccommodating to her sensory system. Tory tried to work for CLC Network from her home, and managed to support the Church Services Division in some ways. These efforts used up most of her “energy points” quickly on any given day.

Tory’s friends organized a much-needed “wrap around” team. A “team captain” checked in with her each week to assess the family’s needs. These people who loved Tory and her family went to work bringing in meals, picking up her children for playdates and events, organizing fundraisers for medical treatments not covered by insurance, providing rides to medical appointments, and so much more.

They provided the exoskeleton of their lives while her own endoskeleton had diminished so much.

While the focus of CLC Network’s Church Services Team is to equip churches to best include and support people of varied abilities, that church structure fell away for Tory over time. No longer able to attend or contribute to church, it seemed that this family was “on their own”.

Tory’s wrap around team, however, was a gift, an anchor, a community of belonging. As part of her team, we prayed. We begged. We pleaded.

We watched God do a miracle. He brought healing!

See God’s healing work unfold in CLC Network’s new, short film, “One Body”.

Using what Tory learned through her experience, CLC Network’s Church Services Team continues to move forward as a resource for congregations. I am daily thankful to God for restoring Tory’s energy and renewing and retooling her passion for equipping churches.

Church Tool Box

As you will discover in the video, there are several small changes or additions that can make a significant difference for some members of your congregation. The following changes would have made a world of difference for Tory and her family to participate in church.

  1. Offer a gluten-free option for the Lord’s Supper.
  2. Carefully monitor sounds during worship to make sure you are in a safe decibel range.
  3. Clearly mark areas where people can get information or support.
  4. Check your church website. Is accessibility information posted so visitors know what’s available at the church?
  5. Use words that welcome the participation of ALL. Instead of telling everyone to “Please stand”, consider inviting people to “Rise in body or in spirit.”
  6. Check out CLC Network’s “Role-Based Tips for Inclusive Congregations” for practical tips to make your congregation more welcoming.

Passionate about inclusive education? Make a contribution to CLC Network to help us create inclusive communities for persons of all abilities.


Barbara J NewmanBarbara J. Newman is the director of church services at CLC Network.

Comments

Mary Brinks

I would like to know the doctor that you saw and what treatment healed you. My daughter has had LYME Disease for 8 years. She is now 23 and unable to live a normal life.

Tory

Mary, I saw Dr. Smith in Idaho. See http://www.Lymestop.com for the information on this treatment –as you saw, it worked for me! I pray your daughter finds healing and wholeness, and God works mightily in and through her (and you)!

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.