Living Freely with Physical Disability: No More Hiding!

Prior to Use of Assistive Devices & Being
Open About My Disability; Pregnant
with the Twins (26 weeks); June 2011

Background (My Conditions):

I started having severe undiagnosed chronic pain when I was 15. After years of diagnostic tests, they started the diagnoses at 23:
Hypertrophic facet disease
Leaking/torn disk (L5/S1)
From that moment on, the diagnoses continued to roll in:
Degenerative disc disease (from the neck to the pelvis)
3 bulging discs (L1/2, L2/3, L3/4)
2 torn discs (L4/5, L5/S1)
Herniated disc (L5/S1)
Gross spinal instability (lumbar)
Spinal stenosis
Bilateral sacroiliac (SI) joint dysfunction syndrome 
(SI joints aligned and 85% relief from surgery -   SI joint bilateral fixation with screws)
Scoliosis
Peripheral neuropathy in both legs and feet
Bone tumors in the neck
Chronic Pain Syndrome (CPS)
Fibromyalgia
Piriformis Syndrome (80% relieved due to surgery - Piriformis Release)

My spinal conditions impact other areas of my health as well (all of the following conditions have been clinically linked to my back & neck injuries/fibromyalgia). I have:
Insomnia
Adrenal fatigue (stage 3)
Chronic Fatigue Syndrome (CFS)
Chronic migraines (with occular changes)
Vertigo
TMJ
IBS

I will need back surgery at some point to correct the disc/alignment issues, which cause the most pain, in combination with possible SI joint correction surgery. I have had 25 disc/nerve block/epidural injections to try and reduce the pain, and the doctors continue to try different types of injections/locations to pinpoint the pain producer. They are starting to think, however, that the pain is caused by too many combined issues to target with simple nerve block injection procedures. 

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In December of 2015, I will be 29 years old. Since the age of 15 years - also my freshman year in high school - my life was affected by chronic pain and disability.

The Times I Hid from My Disability:

Because my pain and disabling medical problems weren't visible to others, I was inwardly ashamed...embarrassed, although I think I hid it well. I knew I was slightly different than my friends in my high school, and all of this continued through college as well. I couldn't go out with friends to shop or go to an outing on Saturday due to the indescribable pain I experienced, the majority of it un-diagnosed at the time, and I was afraid of the judgment of others (especially with my situation, at the time, being much of a mystery).

As I began to gain more self-confidence through college, I became slightly more vocal about my issues. I still physically hid all of my physical problems, which were many-times disabling depending on how much pain I was in, by walking without a gait problem or limp. However, close friends could tell by looking into my face if I was having a particularly rough time with my pain levels.

Prior to Use of Assistive Devices & Being Open About My
Disability; College Graduation; May 2010

The day came that I graduated from college and began working as a music educator for the elementary ages. Unfortunately, the funding for the school had been cut slightly, and there was no space for a music classroom. This meant that I had to teach off of a music cart, going from room to room, with all the equipment loaded on my large cart. I originally thought this task would be possible, but as time went on, it proved more and more difficult on my physical conditions. I also began to deteriorate slightly as stress from teaching during the first year played a role in increased pain levels. Lifting equipment on and off the cart and to and from the storage attic from the fire-escape ladder proved detrimental to my physical condition. My employer was aware of my condition, but did not understand the full expanse of how it effected my ability to teach due to being on a cart rather than in a room. My condition was still somewhat "hidden" to others, as I did not walk slower, limp, or use a device. The only difference was more sitting breaks and the use of a back brace underneath my clothes. At this point came my decision to discontinue teaching due to the tremendous stress on my body, in addition to the timing of my husband and I wanting to start a family (the one and only opportunity we would have to try to have a child of our own, and a time in which I would need to be on a decent amount bed-rest for a healthy pregnancy).

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(Below are pictures of the music cart I pushed daily, which was many-times loaded with Orff/keyboard instruments that were extremely heavy to push up ramps in the building. In addition, the fire escape ladder - bottom right picture - was the only means of accessing the music equipment. This added stress to my body proved to be too much, and I soon succumbed to physical burn-out.)

    

Prior to Using Assistive Devices & Being Open About My
Disability; Our Wedding on June 20, 2009

Looking back on these times that I didn't embrace what was already affecting my life on a daily basis, I realize that I was striving to hold on to normality of my life, and it was exhausting. To put it simply, I was terrified of change. From the time of onset of the chronic pain in high school, it was already beginning to set-in with me that my life was changing in a way in which I didn't have control. To strive to keep control, I tried to hide the extent of my condition to friends and even extended family. I think this is a normal process for anyone who goes through the loss of any ability, especially if it's in the prime years of building self-esteem.


What it Took For Me to Step Out of Hiding:

My 1st bowling experience in
a wheelchair...I can't bowl
otherwise. It was a lot of fun.
June 2013

Have you ever wondered why I blog like I do - why I share my story, my experiences, my heart? I was powerfully affected by the testimonies of many bloggers with chronic illness who have similar stories as mine (are somewhat able-bodied, yet are heavily affected by "invisible illness", such as autoimmune disease, and use assistive devices - including wheelchairs/crutches - when needed for mobility and/or pain relief). God uses each of our lives and stories in powerful ways. Never underestimate His power to encourage you and use your story!

My husband and I at Medeival
Times in Myrtle Beach;
April 2014

The most freeing, yet courageous step of my life (regarding my disability) was choosing to be myself. Sure, it sounds like a piece of cake....but it's unfortunately not. I started trying not to care about what others would say or think about me (although my personality just doesn't work that way).

I started using a wheelchair (custom, rigid frame, ultralight wheelchair) for public outings and/or long periods of sitting (custom seat) in April of 2013. I also use forearm crutches for lumbar back support and leg support (for peripheral neuropathy) when needed instead of the wheelchair, which I sometimes prefer over the wheelchair.

Why the wheelchair/crutches? Simple - pain management is the majority of it, and ease of mobility is a bonus. I have about an 80% decline in pain when I use the wheelchair. Not only that, I had not even had much experience shopping from the time I was 15 years old to the time I was 27 years old. Simply put, it's a better quality of life. And might I add that using a wheelchair is by no means easy, which in my mind proves that most people who use one are truly legit wheelchair users & indeed need to use the device (who would want to do something the harder way?).

When I started using the wheelchair, I felt free. I was finally able to do the things I was never able to do before. It did take a period of adjustment - adjustment to the reactions from the public, to the inaccessibility you face for people with disabilities - but it was 100% worth it!

Strolling the Mall with My Family
(Made Possible by My Chair);
July 2013

I love the quote by Stephanie Cunningham, motivational speaker and co-founder of the Lighthouse Group: "Disability is not something that needs to be overcome; it needs be integrated into one's life." I couldn't agree more, and this was my new goal.

As encouraged as I was by the positives of this new development in my life, I had people from all directions asking me why I was at the point of needing a wheelchair when I was still able to walk. There was (and still is) a huge lack of understanding of disability and chronic illness in general...many didn't understand this very fact: according to a recent study, 70% of wheelchair users could walk 1/4th a mile if they had to. Unlike popular belief, most wheelchair users are not paraplegics/quadriplegics or affected by the complete inability to walk in some way or another.

I had so many people talk behind my back (messaging friends and asking "what's wrong with her", and it got back to me - same thing happened at a family reunion recently when I used my crutches, and I was the talk of the day). They didn't understand several things. But most importantly - they didn't understand the immense courage and humility it took to set myself in a wheelchair or on crutches in the public eye (especially after my disability was hidden), and that this time of transition for myself was going to be needed to be met with lots of encouragement and support. Other than relying on my faith, which was crucial regarding encouragement, strength and perseverance, I did get the majority of my support from several local and close friends who saw my battle personally day-in and day-out, and that helped tremendously. I tried to focus solely on the positive and move forward. With God's help, I made it through that first year of transition, which was rough. Word has now been passed around about my condition, why I use my chair/crutches, and things have calmed down a bit.

One way I dealt with the overwhelming emotions of having to start
using a wheelchair was to get "dolled up" and take pictures with
cute poses with the wheelchair. I re-upholstered the seats
of my wheelchair to be more personalized, making the
chair look less "medical". I did the same with my crutches.
Once the pictures were taken, I posted them on
Facebook with the explanation of why I would start using the chair.
People still reacted strangely at times, but I feel it was therapeutic
to go the "photography" route with an explanation. This eliminated
some (not nearly all) of the stunned questions when people would
see me during the transition stage and ask "what happened to you?!"
I also carried (and still do) slips of paper with my name & blog site
on it, so that those with questions or who want to know more about
me can visit this site. This eliminates me having to fully explain
each time someone asks the full extent of my medical problems
(I can never remember them all, either).

Things probably would have been easier if I was vocal about my condition before this point, but I wasn't. I was ashamed, because I thought people wouldn't understand. Maybe they wouldn't have understood...maybe they would have. Only God knows. What I do know now is that I have finally embraced who I am, and who God has made me to be. I am grateful God has brought me to this point, and I'm moving forward.

Me & my sweet late Chance (shitzu);
September 2013

         






Vow Renewal, 9.6.2014:

On our original wedding day 5 years ago, my husband and I looked like any ordinary couple - happy, in love, and unaffected by disability. The former of these two are true.

The day we decided to renew our vows was going to be different....nothing would be hidden, and I was going to boldly embrace that.

We captured that day with beautiful pictures, and I wasn't afraid to use my wheelchair and crutches. The pictures turned out absolutely beautiful. I can't tell you how "free" I feel that I have finally and completely stepped out of that box of hiding after all these years. And I feel that God places these experiences in our lives as tools of growth. There is value in every part of our lives, and with that we should seek to make a difference. I am [now] grateful. May I always be.

Below are pictures from the day's events. Photography Credit goes to Danielle Ault.


    

  
 

 

 

 

 

 

 

 

 

 

 

http://invisibleillnessweek.com

We Still Do...

Close to the arrival of our 5th wedding anniversary, Rence and I decided we would like to set a date (no special meaning to the date) to share a few new goals for our marriage with those we love.

We took many, many pictures to capture the fun, romance, and celebratory atmosphere of the day. A huge "thank you" goes out to Danielle Ault, who helped us set-up from 11 a.m. to taking down at 6 p.m. (yeah, we were pooped ;p ), not to mention she sacrificed her Saturday to take pictures of the event all day - from posing Rence and myself to taking pictures during the ceremony & reception. You were wonderful, Danielle!

The day was absolutely beautiful. We held the quiet, small event at Alexandria Park in Alexandria, Alabama. We rented out the gazebo and pavilion, and we were able to use the dining hall for storage of food and for getting dressed. Due to the possibility of rain (it had rained non-stop all week), we decided it would be wise to hold the ceremony in the pavilion, which would also be out of the sun, and we had over-head fans running from the ceiling for further comfort from the heat. The pavilion itself is beautiful without being decorated. The flooring is made of stone, and the fireplace is the centerpiece of the pavilion, which was the background for the ceremony (made of a different variation of stone). I further decorated it with greenery, a burlap & lace table-runner, the framed "Resolutions" that Rence & I signed and the pitcher and bowl for the foot-washing ceremony. The fireplace looked absolutely beautiful when we were done decorating it. The ceiling was covered in hardwood, and we had access to a nice bathroom. We set-up chairs in an arc for guests to sit in so they could be an intimate part of the ceremony. We set up a kids table and chairs for the boys (and Hannah, who was unable to make it due to illness) with plenty of toys, books and Play-Doh to keep them entertained throughout the day's events (pictures, ceremony, reception/fellowship). The cake table was behind the arc of chairs (with some room for walking/moving around) and was decorated with a shadow box with our original wedding program & invitation (and a few other wedding items), program fans that I made for the event, as well as some other decor. I decorated the cake with silk flowers and a jeweled "C" letter as the topper and a single flower on the side (all D.I.Y.). I loved the end-result of the cake. It looked gorgeous (and it tasted great, too!). We also served iced sweet & un-sweet tea with various bagged chips. The only "hiccup" we had was that Gavin (one of our 3 yr. old twins) came down with a fever. We dosed him with Tylenol and Motrin, but he continued to act like he didn't feel well at all, and his fever just wouldn't break. We kept an eye on him, with the help of Meme, Papa, Grandma and Uncle Ethan, and continued through the ceremony and reception, but took Gavin inside the dining hall for a bit during the reception time to try and cool him off. He perked up toward the very end and started playing with the Play-Doh. Other than Gavin getting sick, everything turned out great. It was a very relaxed event, and I really enjoyed that aspect of it.

As we began the short, yet intimate ceremony, we explained how much it meant to us that our family had sacrificed their day, their efforts, their energy into sharing this day with us. We thanked them for their love and support over the years, and for their love and support for the years to come. 

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I then got the privilege of sharing my vows - my new goals in our marriage - first. Rence and I were facing one another: I in my wheelchair, and he on a small bench. The following is a note I read to Rence, followed by my vows (I made it to paragraph 3 before I was in tears):

Rencely,

It's hard to believe that we've already passed the benchmark of five years of marriage. Since that day, I knew God had amazing things in store for you and I and our future and hopeful family. God, once again, far-exceeded our expectations.

God gave us the miracles of these precious boys, and the story of how they came to be is a reminder to me daily that all things are possible in God's sovereign and mighty hands.

You now have a job you love - teaching college students the "terrors" of math - you love it, and through it, God provides for our family. Most importantly, God is using you in incredible ways to shine His light to the dark & dying world that surrounds us. You shine God's light brightly, and I am more than proud to be called your wife.

We are now heavily involved with encouraging and helping those who are sick or injured through the chronic illness ministry God called us to as of one year ago last summer. The sacrifice of your time, energy and sometimes our personal finances, has been a true testament to where you keep your focus in life, which is clearly on Christ and His love of serving others. I thank you for your example and servitude.

Lastly, as my health has presented its challenges over the years, you have stood by my side through it all to cheer me on in the battle. It's not been easy on either of us since day one. On our original wedding day, we certainly held more perspective on the phrase in our vows to stand beside one another through "sickness and health". Most men would bolt, but you're not "most men"...you are exceptional. And together, we have seen that God works mightily through our situations. My physical problems may have multiplied, but so has my joy in the Lord.

We always hear it said that we should never stop growing in our faith. I couldn't agree more. Over the past five years, I have personally grown as a wife, after many hardships and trial-and-error. As the head of the household and spiritual leader, you have also grown tremendously. You have shown me, specifically, the strength of forgiveness and patience with one another, as marriage is anything but a piece of cake.

As the spiritual leader of our home, you show our children at a young age how to talk to the Lord every night, followed by blowing God a kiss - you are instilling precious values in them, and teaching them to love the One who loved us first. You teach them to appreciate what they have by telling God "thank you" when we get "new toys", and by blessing our food and giving thanks for Mommy, Daddy and brother. The command by God for you to raise your family in the Lord has not been given lightly, nor has it been taken lightly, and that speaks volumes.

Your laughter is contagious as it fills up a room. From the times we would watch Everybody Loves Raymond at my parent's house to the latest incident of "friend road rage", your laughter never grows old.

I say all this to simply say "thank you" for allowing God to use you mightily as a husband, first and foremost, and secondly, as a godly father.

Today, I affirm the vows we shared before God, friends and family on our wedding day. These vows don't replace the others, but are new goals to help us achieve the healthy and godly marriage that God and we desire.

Rence, my vow to you today is this:

I will strive to find the best in you, therefore encouraging and respecting you in all you do.

I will keep an attitude of forgiveness and patience in the forefront of our marriage.

I will be vigilant of our friendship, romance and the well-being of our marriage.

I will accept you for who you are. When I don't care for something you do or how you handle a situation, I will change my attitude from "change him, Lord" to "change me, Lord".

I will make it my ultimate concern to minister to you, to foresee the things you need, and look for ways to be a blessing to you.

I will be approachable regarding guidance and correction so that we can grow spiritually as individuals and as a couple, ultimately glorifying God in all we do.

(*Note: Resource used for guidance in creating goals/vows: What's it Like to Be Married to Me? by Linda Partow)

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We then had the beautiful opportunity to wash one another's feet. Thank you to Lauren & Justin Holland for letting us borrow the foot-washing basin & pitcher!

Some are not familiar with the practice of foot-washing. If that is the case, then I am privileged to introduce you to it. Washing another's feet was a practice that was done primarily in the days when people traveled by foot and sat on the floor to eat. The feet were the dirtiest part of the body, and still is today (for the most-part). The feet were prominently displayed at the table as others dined, so it was important for the feet to be clean. You can imagine, however, that not many people wanted to volunteer for the job to wash someone's nasty feet. 

When Jesus was preparing to eat the last supper with his disciples, he (the King of Kings taking upon himself such a lowly position) begin to wash the disciples feet.

Stunned by what Jesus was doing, Peter (one of the disciples) asked Jesus, “Lord, are you going to wash my feet?”
Jesus replied, “You don’t understand now what I am doing, but someday you will.”

“No,” Peter protested, “you will never ever wash my feet!”Jesus replied, “Unless I wash you, you won’t belong to me.”Simon Peter exclaimed, “Then wash my hands and head as well, Lord, not just my feet!”
(John 13:6-9)

I believe Peter was embarrassed that Jesus was having to perform such a lowly task, and Peter did not understand the ultimate purpose behind the foot-washing. 

As believers today, we have the advantage of seeing the full picture. Jesus goes on to explain in John 13:14-15 that we should follow his example in foot-washing. Many times, this is may not actually be foot-washing, but rather a metaphor for a lowly task God has called us to. However, I think the act of foot-washing itself is also important to remember and repeat, as it demonstrates several important things about spiritual life as an individual, as well as the metaphors of foot-washing in the setting of marriage (as we represented on the day of our event).

And since I, your Lord and Teacher, have washed your feet, you ought to wash each other’s feet. I have given you an example to follow. Do as I have done to you.
(John 13:14-15)

When I was researching what others had done during this part of the ceremony, I ran across a blog/article in which we used a portion for the ceremony. Listed below, you will find the original text of the author's article, entitled "A Feet of Commitment" (from One-Flesh Marriage):

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Washing Your Wife's/Husband's Feet:

1. Says I love you.

2. Shows that you honor and respect your spouse.

3. Demonstrates a humility of heart and character, kneeling before your spouse.

4. Communicates "I will be here for you through the muck and mud of life".

5. Places you in a position of prayer (on your knees) - a great place to be in marriage.

Having Your Feet Washed:

1. Says you are loved.

2. Shows you can receive your spouse's support, and won't "go it alone".

3. Communicates, "I will let you help me".

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I will add that I believe it demonstrates complete servanthood. Christ demonstrated the act of serving out of a willing, joyful, and humble heart. Our command from God is to do the same.

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I will end by saying that washing one another's feet on this occasion was one of the sweetest things we've done for each other. I praise God for the years he has given us and the years that are yet to come!